My MS Journey

Get Well Soon Shirley!

2012-02-26T09:39:00.001-08:00

Happy Sunday Afternoon Bleeps.

I hope you have all had a good weekend so far. I want to do a shout-out to my friend Shirley who has been taken into hospital due to a reaction to her oral steroids. I hope the IV ones kick in soon chick and your relapse subsides so that you can get home. In the meantime, make sure when you get up to go to the loo your bum doesn't poke out of the hospital gown (kidding!). Thinking of you sweetie.

I have had a fizzy day today. There is an electrical storm going on in my body and the bugs crawling under my skin are back. If I was a betting woman I would say they never went anywhere but the God forsaken, mind-blowing head pain was somewhat of a distraction. I have also had a mad, crazy twitch in one of my eyes that was like a cross between a shooting pain and an electric shock. Thankfully it didn't last very long because I looked like a crazy person keep jumping every time it happened.

I have spent the day with my bum stuck to the sofa going between Facebook, Pinterest and Twitter. Yes, my day has been THAT exciting, don't get jealous now. It was quite interesting this afternoon because I was "synchronised TV watching" old reruns of Friends with one of my MSer friends on Twitter. Our favourite lines and jokes were going back and forth and I did wonder if it is a little weird to watch TV (albeit online) with someone you never met before? Hey, the way I see it is MSer don't have to meet in real life to be real friends, something I have really learned a lot about lately with all of the love and support I have been shown when I was in pain.

I should probably confess that I had one too many last night too ("no, surely not" I hear you gasp). We went out for a lovely meal at our local Indian and I was "saving" myself for the food all day and didn't eat enough so the wine went right to my head (that's my story and I'm sticking to it). Three glasses of wine later and well, you can imagine how fuzzy my head was this morning. It was a belated birthday dinner for Phil so we went armed with a birthday cake, sang happy birthday (loudly) and came away with a gift bag containing a lovely bottle of wine that they gave to Phil as a birthday present. Shame that he doesn't drink wine but guess what? I know somebody that does!!

Right now Phil is driving Megan back to her Mother's so I am sat here with a bar of chocolate, catching up on my Greys Anatomy and of course talking to you. Peace and quiet, lovely.

Whatever you are doing I hope you are feeling good and enjoy the rest of your weekend because .....

So enough about me, how are YOU?

Emergency Dental Trip - Oh Joy!

2012-02-25T05:49:00.000-08:00

Good Morning Bleeps.

I think I did something REALLY bad in a previous life. In fact, if you are the sort of person that believes in reincarnation I think I am coming back as a bog brush in my next one. Yesterday my headache finally went completely, I could lean forward and pick things up off the floor without feeling like my brain was going to fall out through my eye sockets. I felt like I had been reborn. It was such a relief that all of my other symptoms which usually piss me off such as numbness, tingling and heavy limbs weren't even going to get me down. I was just SO relieved to be out of that skull crushing agony of the lumbar headache. Free at last, yay!

I had a nice relaxing evening with my family and even treated myself to some cheeky wine. I say "some" because if I say a glass I will be lying and that's not how I roll. I didn't go to bed too late and drifted off into a lovely sleep quite quickly while snuggled up to my man.

I hadn't been asleep long when Karma decided to take a pickaxe and sink it into the side of my face. I was woken up by the most excruciating pain. It covered the whole left side of my face, I was literally writhing in agony with it. It started at the top of my head, spread down the whole side of my face right under the bottom of my jawline. Seriously? What the hell did I do to deserve this pain when my headache had only just subsided?

It felt as though all of the bones in my face (even my cheekbones) were throbbing and my tongue felt as though it would explode. As some of you might remember from my previous blog, I have a broken molar at the back of my mouth on the left side. If this was a toothache then I have never felt one like it before. I popped two Tylenol PM tablets hoping that they would kick the pain and get me back to sleep. I lay there crying yet again, holding my face and cursing at the injustice of it all. WHY? For flipping heck's sake, didn't I deserve a break? Some respite from pain? This had to be some sort of cosmic joke.

I called my dentist office this morning and was lucky to get an emergency appointment. He took some x-rays and sure enough, there is an infection in the nerve. What is the deal with my bloody nerves? If they aren't spazzing out on their own now they are getting infected, brilliant!

The dentist dug it all out and filled it with an antibiotic paste. He has also given me antibiotics to start taking if the pain doesn't go by Monday. I am glad that I don't have to take them right away as we are going out for an Indian tonight and I was initially bumming out when he mentioned antibiotics as I like to have wine with my meal (I know, you are shocked by this revelation) and there is a vicious rumour that you can't drink alcohol while taking them.

So the course of action is that I will be going back for a root canal and a crown, an expense I could really do without right now but hey ho, what can you do? At least I am not in pain now because my face is completely numb from the Novacane and the kids are having fun laughing at my funny mouth when I talk. In fact Maddy just actually pointed at me and laughed, I can't imagine who she takes after for her sadistic sense of humour. ;)

So enough about me, how are YOU?

MSRC Counsellors Are The BEST!

2012-02-24T05:02:00.004-08:00

Good Morning Bleeps.

I am happy to report that my headache is GONE. Well, not completely gone but the excruciating pain is no more and what is left is a muzzy, hangover type feeling. I am very used to dealing with THAT feeling.

This morning I have been back to the hospital for my EP test. I am sure the lady on reception looked at me as if to say "not YOU again". They should give out loyalty cards like they do at supermarkets, I'd have tons of points by now. The amount I have paid out in hospital parking alone would be enough to feed a small country.

The test itself was straight forward, they put electrodes all over your head and you sit and stare at a red dot on a screen that gets bigger and smaller as black and white checks move all around it. The lady doing the test said the results were normal. I asked her what that means and she said it just means that my optic nerve hasn't been damaged. Of course this is good news but I am so nervous that all of these new tests will show nothing and I will be left in limbo land with a diagnosis of "Probably MS". This will mean that my GP will continue to fob me off as "anxious" and I won't get the support of an MS nurse.

I suppose I shouldn't jump the gun and assume the "worst" as the CSF results from my lumbar puncture aren't in yet and I am probably getting ahead of myself. It strikes me as odd that for me "the worst" is that all my tests will be normal but I am sure that anyone in Limbo Land with symptoms will get where I am coming from. It is much better to know what you are up against, how can you fight a faceless enemy?

I sit here writing with the bottoms of my feet totally numb. As I rub my feet back and forth on the carpet and I can feel it on my toes (and the ball of my feet) but not my heels, it is sooooo weird. My legs are heavy, like they are full of wet sand but not so bad that I can't walk. My head has that awful cold sensation going on, like my brain is sitting in ice cubes. Something has be causing my body to feel all of these funky feelings, right? This is NOT all in my head. I wonder if other people have moments like this when they question their sanity. What if this IS all in my head, should I start shopping for that sparkly pink straight jacket? I mean, if I am going to the funny farm then I still want to look good.

I was chatting to other MSers on Twitter this morning and was advised by one of my favourite charities that I stalk, I mean follow, (The Multiple Sclerosis Resource Centre) to call and speak to one of their advisors. I explained that I would probably cry and embarrass myself but I was assured that this is what they are there for and so I thought, why not? and made the call.

As feared I blubbed like a fool through the whole conversation but my goodness that woman was a SAINT! Just to have someone listen and VALIDATE my feelings was amazing and it felt good to offload my fears of being stuck in Limbo Land. The lady was so kind and totally understood where I was coming from. She told me that I could call back any time, even if I don't ever get the official diagnosis and she would advise me where to go next.

I said to her that I just want one of two things. I either want an absolute diagnosis so that I can move forward OR I want the symptoms gone so that I can have my life back, go running and get rid of some of this bloody weight that I have gained through being sedentary. Feeling rubbish about myself on top of feeling ill in general is not helping. I am MUCH to vain to have to squeeeeeeeze into my skinny jeans.

It was a great comfort though after all of the bad experiences I have had lately with people like my own GP and the idiot moron at A&E last week that there is some really good help out there if you know how to find it. I can't thank the MSRC enough for the work they do. They even tweeted me to ask how my head was feeling, that means SO much to me! If you haven't already, please join them on Facebook and/or Twitter.

Anyway, for now I am oh SO grateful that the awful pain in my head is gone and on top of that, it is the weekend. I am looking forward to watching the new episode of Benidorm on TV later (love that show because it is so stupid that it makes it funny) and I may even have a cheeky glass of wine or two. Happy Friday my friends.

So enough about me, how are YOU?

Different Day, Same Head

2012-02-23T01:59:00.001-08:00

Good Morning Bleeps.

I am now nine days post Lumbar Puncture and guess what? Yup, still have a bad head. I decided yesterday that I wasn't going to acknowledge the headache any more. I made a concious decision that it was now all gone and I was taking my life back. I got off my back and sat at my desk where my main computer is because I needed to send an email to a client.

As I sat there composing my business email I was aware that the pressure was building up in my head and ears. Nope, not going to take any notice, go away headache because I am not interested in giving in to you today, you are not there.

Oh yes it was and the pressure continued to build. I closed my right eye because my brain was threatening to explode out of the socket. I needed to finish the email because it was a potential new client and I have to earn money. Unfortunately there is no "get out of jail free card" where bills are concerned.

As I hit send on the email I literally burst into tears. The pain was kicking my ass again, I was feeling sick AGAIN. I called Phil crying and asked if he would pick up Alice from school. I was supposed to get food when I did the school run and clearly this wasn't going to happen so I asked Phil if he was OK with us ordering in pizza (again). I sobbed to him how sorry I was and that I feel like a burden, I HATE this. Of course he told me to not be silly and to go and lay down but I was beside myself with pain and sadness.

I was also concerned because have an EP test booked at the hospital on Friday (tomorrow) and so I had a phone conversation with the secretary asking if it would be possible to reschedule. I am nervous that I wont be up for it, that my head will be too painful. The hospital is a thirty minute drive and who knows what the test involves (I don't) but a good friend told me that hers lasted for four hours. The lady told me that I couldn't reschedule the test since I already cancelled once before. I told her that this was the first appointment that I had ever had for this test and so that was a mistake. She replied that no, I had another appointment that I changed already. I insisted that I hadn't but she was having none of it. I guess computers are NEVER wrong?! Fine I said, I will be there. I was starting to wonder, did I piss off some sort of medical God somewhere or am I just terribly unlucky?

Later in the day I spoke to my sister on the phone and she was frustrated for me too. She always knows what to say to make me feel better and yesterday it was the AWESOME news that she had booked her tickets to come over for two weeks in the summer with my beautiful nephew and niece. I joked that I would probably still have my headache at this rate. I also told her how I was in this month's Montel Williams Face of MS video (just over the 5 min. mark). She watched it while I was on the phone with her and as soon as she saw my photo she started to cry. As soon as I heard her cry, I did too. Through my tears I joked that hey, I am finally famous and I never had so many friends before now, so it's all good. It only took a life-changing, chronic illness to make me popular. You have to joke, right?

My friends Krista (2 mins 30) and Sandra (4 mins 52) are here too. These ladies have been a massive support to me along with lots of other people I have met on Facebook, Twitter and via this Blog. I won't ever be able to give enough thanks for the support and friendship of so many lovely people, my silver lining in this big black cloud.

Today I am light headed yet again and my right eye socket is threatening to lose control of my brain. The pressure is building and I am wondering when I will ever be free from this head. I am DETERMINED to get on with it today. I have to get food in this house for my children, I don't care if I walk around with one eye closed and in pain to get it done. I can't give in to it today, I will fight.

My legs are seriously tingly and heavy today too and it's weird because before my LP head I would have been fed up about that but in a weird way these symptoms feel like "old friends" and I don't mind them being here keeping me company. Now if we could just gang up and evict the pain in my head that would be great.

I am not sure what to do if it continues. If I call my GP they will tell me to go to the A&E and we all know how wonderful THAT experience was. I tried calling NHS Direct but the machine said they are only dealing with urgent cases. What is considered urgent? A debilitating headache? I am not sure. It is quite a lonely place to be.

So enough about me, how are YOU?

Please Wake Me Up From This Nightmare!

2012-02-22T02:14:00.003-08:00

Good Morning Bleeps.

I will continue from yesterday's blog where I told you about my awful A&E experience and lack of care for my poor head.

I woke up on Friday (post LP 3 days) and because I had been laying down all night my head seemed to be OK. I still had the "swishing" noise in my ears but the pain seemed to have eased off. Phew!

Phil went off to work after I assured him that I was OK and he didn't need to worry. After showering I was right back at square one, holding my head and crying with the pain. I had my Mum with me who said I needed to call the hospital again and speak to a nurse where I had the test done.

I did that and cried as I explained over the phone my level of pain. She said it definitely wasn't right but she would go speak to "sister" and asked me to hold. She came back to confirm her original statement that my head pain was not right and she told me to "go immediately to A&E". I told her what happened the day before and explained that I couldn't face going back there. She told me to come there instead.

I didn't want to pull Phil away from work again (he had already been with me for the whole afternoon the day before) so I called my daughter Kylee to see if she could drive me to the hospital. Unfortunately she was two hours away and although she offered to come and get me, I couldn't stand to wait as the pain was so bad. I told her I would figure it out and not to worry but she obviously was worried because she called my other daughter, Kassidy, who phoned to say her boyfriend Matthew would take me.

The car journey to the hospital was pure torture, not because of Matt's driving (he is actually a really good driver for a young guy, not a crazy lunatic at all) but because every bump in the road or turn of a corner made a pain shoot through my brain. It was like getting hit in the head with an axe and I cried the whole way there.

We walked into the "urgent care" department to be told that they only had a GP on staff and I should have gone to A&E and not there. I calmly and politely explained to him that I was TOLD to come there by the nurse but what I wanted to do was reach across the desk, grab him by his tie and strangle him with it. I was getting fed up with being dismissed but I knew it wasn't his fault so I resisted. I have to say that in the past I have always wondered why there are signs everywhere saying that you can't abuse the NHS staff, what sort of person would do that anyway? Why do they actually need to put up posters warning that this behaviour wouldn't be tolerated? Now I was beginning to not only understand the need but I kept looking at them, telling myself "don't hurt the staff, it's not their fault, don't hurt the staff, it's not their fault". I totally understand the need for the posters now because when you are in pain and nobody is listening you want to freak out, at least I did.

I lay across chairs in the waiting room, my head on my Mums lap. I cried like a baby while she stroked my forehead. I lay there thinking (through my tears) that when you are sick and in pain, you never get too old for needing your Mummy. I knew it was killing her seeing me in that state, I could see it in her eyes. A man sitting across from me kept glancing over at me and I knew he felt bad that I was hurting too, I could see it in his expression of sadness. Usually I would feel embarrassed by my lack of social etiquette (I mean, who lays down in public other than a bag lady?) but I couldn't deal with the agony I was in and I didn't care who stared.

Eventually we were called through to the Doctor. He was asking me questions about my health and I tried to answer him the best I could. After a little while he asked about any medications I was on. I told him that I take blood pressure pills and he snapped "so you have high blood pressure? This is the kind of information that you need to be telling me". I snapped right back "well excuse me if I forgot to mention it but I can't think straight right now with this excruciating pain in my head". I think he realised that he was less than kind because his whole demeanour changed at that point. Also, my Mum threw in that she was from Florida and the care in America is so different from what I had been getting. Up for the challenge Doc?

I asked him directly for a blood patch. I told him what had happened the day before and how nothing was touching the pain. I took out my mobile phone and read him the text from my Aunt who is a midwife in England to PROVE that we do in fact do them here. Guess what? He never heard of it either but to give him his due he went off to speak to the Neurologist on call.

He came back to tell me that they would not be doing a blood patch, that it is only effective half of the time and that IF they were going to do anything then they would usually treat someone like me with a caffieine drip. Um, go on then?! No, instead out came the prescrition pad and he started to write it out for paracetamol and Ibuprofen. I once again (can we say broken record?) explained that NO PILLS WERE WORKING and that even the Morphine and Codeine that I was given the day before didn't touch it (everyone knows that Morphine is awesome for pain, right? Thought that would get his attention). He told me that I shouldn't have taken morphine or codeine because they can give you a "rebound headache" that is worse.

WHAT????? I was given codeine to take away from A&E the day before from Doctor Fantastico (sense the sarcasm). Who was I to believe?

I need to digress to tell you something that had happened the day before with the first A&E Doctor. When he came to tell me I was going home with no blood patch, he had said to me what that he had called the hospital where I had my LP and the test results on my blood were that my protein was normal. He went on to add that this would indicate that I don't have MS. Um, I'm sorry but since when are YOU my Neurologist? Who the hell asked him to look into my results? I said that MY Neurologist had said the results would take a while so how was he able to see them already? He said "Oh the other sample that looks at the bands isn't back yet". Deep breath Karen, punching Doctors in the face is generally frowned upon.

Anyway back to my story, I looked at the Doctor and repeated that the pills don't touch the pain. I was losing it, I felt so alone and helpless. He told me that if it was no better by the next day to come back. COME BACK????? For what? He told me to call my GP as that would be the "best route to the medical team" if I needed to come back to the hospital. Oh yeah, because everyone knows how great hospitals are on the weekend. Didn't I just read in the news how you are more likely to die if you get admitted on a weekend? No thanks. I looked at him and said "I won't be coming back, there's no point". He wrote down the GP after-hours on the prescription anyway. I didn't bother to get it filled, useless.

I came home and lay back down. I really was on my own with this one. I suffered the whole weekend, I got up only when I had to and spent the rest of the time drinking lots of coffee and resting. Phil's birthday was on Sunday and it was a total wash-out. I had planned a night up in London and dinner at Heston Blumenthal's new restaurant (where trying to get a reservation is like trying to find rocking horse poop). Just like Valentine's Day, this too had to be cancelled (although I have been able to reschedule it for March).

Monday morning I got a call from my Doctor's office to say that they had been contact by the hospital and they were concerned about my blood pressure and could I come in to see the nurse. I told the lady on the phone that the reason my BP was 160/110 was because I had been in pain (and still was) and I briefly told her what had happened. I told her I couldn't come in to see the nurse because I was still unable to sit up. She told me to come in when I am better. Whatever!

Yesterday I had to drop my heart monitor back up to the hospital and by the time I got back home I was back in agony. Diane (my sister) called me just after I had got in and I was sobbing down the phone to her. It was a week ago that I had this test done and I am still suffering so very much with the pain in my head. How much longer can it possibly go on? All the time I am laying down it doesn't hurt but when I walk, cough, laugh, sneeze (that kills!), talk loudly or really function at anywhere near normal then BAM head pain that knocks me back on my bum.

I need my life back, I have to be able to function like a grown up, I have children that need picking up from school, I have to work, my house is a mess and the cupboards are bare because I can't go shopping. It is a nightmare, one I need to wake up from soon!

I would like to add here that it was mentioned to me that my blog might scare other people that have to have a LP. I am only telling MY story. This is MY truth, an online diary if you like. I am not going to sugar coat it or sprinkle candy on top because then I would be lying. Not everyone will have this experience, there are many people who are lucky and have no after effects from a LP but sadly I wasn't one of them and I continue to be in pain.

So enough about me, how are YOU?

Two Blogs In One Day? I Do Spoil You!

2012-02-21T05:55:00.001-08:00

Good Afternoon Bleeps.

I am in SO MUCH PAIN and just read this:

Postdural Puncture Headache

Post-lumbar puncture or, more precisely termed, postdural puncture headache (PDPH), is the most common complication of lumbar puncture, occurring in up to 40% of patients. The headache begins within 48 hours in 80% and within 72 hours in 90%, although the onset can be immediately after the procedure or delayed for as long as 14 days. The duration of the headache is less than 5 days in about 80%, although the headache can persist for 12 months.

The headache is usually but not always bilateral and may be characterized by frontal, occipital, or generalized pressure or throbbing occurring when the patient is upright, and diminishing or resolving when supine. The headache worsens with head movement, coughing, straining, sneezing, and jugular venous compression

I feel like printing this out, going to the William Harvey Hospital and finding the "Doctor" who told me these headaches come on within 12 -24 hours so I was UNUSUAL and sticking it up his .... never mind. That jerk basically implied I was exaggerating or being a drama queen. I can't see straight from the pain. The useless @$$.

Please keep everything crossed for me that I am not one of the people who has to suffer for up to 12 months or I will be finding a bridge to jump off (if I can ever get off this sodding couch first).

Toodles.
x

Is Anybody Listening?

2012-02-21T02:09:00.001-08:00

Good Morning Bleeps.

I will continue on from yesterday's blog if that is OK with you because my Lumbar Puncture adventure didn't end on the day of the test.

I woke up the next day with the pain still in my back. I also had a headache but nothing I couldn't handle, it was just the hangover head I had been warned that I might get. I was more concerned and wanted to know if the pain coming from my lower back and down my left leg was normal (or at least nothing to worry about). Because of the massive pain I had felt during the procedure I was concerned that something inside had been damaged. I called the day hospital where I had the test done and was luckily put on the phone with the lovely nurse who had held my hand during the procedure.

I explained what was going on and she said that I shouldn't worry and that it was probably just some bruising. She asked about my head and enquired whether I had any pain in my neck or anywhere else. I told her that I had the headache and yes, some stiffness in my neck but only to the degree that the Doctor had warned me could happen. She reassuringly told me that my back was probably just sore but to keep an eye on it and let them know if it (or my head) got worse.

I took myself off to the hospital for my three o'clock appointment to have my heart monitor fitted. I had a bit of a car park altercation with some stupid cow that decided to hassle me from behind while I waited for a car park space. Now usually I avoid road rage at all costs (I had a bit of a run-in with a psycho that freaked me out many years ago) but this woman was PISSING ME OFF! I was sitting there, with my indicator flashing, waiting for a car space and this stupid woman was behind me, flashing her lights, getting agitated and throwing her hands in the air like I was doing something wrong. Really? REALLY?

I turned around and let her know in no uncertain terms that I wasn't in the mood for her bullying. Just in case she didn't fully understand how much she was getting on my last nerve I threw in some sign language (well, fingers really) to help express my dissatisfaction at her rude behaviour. It is just as well it happened before my heart monitor was put on because it would have probably exploded. I am usually such a mild mannered person (oh OK then, not mild but not usually a Miss Angry) but I had a sore head and a sore back and I wasn't in the mood for some stupid chick with a bad attitude and no manners.

My headache was getting worse so on the way back from the hospital I stopped by the pharmacy for some stronger pain killers. I asked for the strongest ones they sell over the counter and popped a couple right there in the supermarket. Phil got home from driving Megan home and we decided to go to the Indian for dinner. As I sat there in the restaurant my head started to really hurt. I mean seriously, need to put my head on the table, don't care if I am in a restaurant, my head is going to explode HURT. I popped more pills but nothing was helping.

By the time we got home I was in agony. I was literally in a ball on the floor, holding my head and crying. I told Phil (through my tears) that if it was like this tomorrow I would need to go to the hospital, I have never felt anything like it in my life. I thought I was going to get away with the headache from hell that I had heard horror stories about, I thought wrong.

The next morning it was no better. I was in serious pain. I couldn't sit up without feeling like I would throw up from the pain. I called the hospital and I was told that I needed to go to A&E immediately. My fellow MSers had also advised me to go in and ask for a blood patch. I needed this to plug the hole where my spinal fluid was leaking from. I was told that I felt OK while laying flat because my brain didn't realise it wasn't floating and then as soon as I was upright BAM - torture.

Phil drove me to the hospital and I cried the whole way there, holding my head in anguish. I sat in the waiting room of the A&E crying like a baby and not giving a monkey's who was looking at me. It felt like torture sitting there waiting but soon enough my name was called and I went through to a cubicle. I explained that I was post Lumbar and that I had been instructed to come in because this headache needed attention. I asked for a blood patch and was told that she had never heard of it. I was given liquid morphine but I explained to her that no pills/pain killer was working. She told me the Doctor would be with me soon and to get some sleep. GET SOME SLEEP???? What part of "I am in total agony and can not function" did she not hear?

As I expected, the morphine did nothing and we sat for hours waiting. Eventually a Doctor (junior) came in and I repeated my story. She gave me more pills (even though I told her that pills were doing nothing and I knew that I needed a blood patch) and left. In the meantime my Aunt (who is a UK based midwife) sent me a text telling me to ask for a blood patch (she referred to it as a EDBP), routinely done in midwifery for women who have a bad reaction to an epidural. I told her that I already had but that they hadn't heard of it, I had actually started to think that maybe it was just done in America (where are lot of my MSer friends live). She was outraged and told me to stand up for myself. I was trying but it is so hard when you are in that much pain.

Phil eventually got mad at all the waiting and went off to find out what was going on. They said that the Doctor would be with us soon but they were busy. We had already been there for five hours and I was still in agony at that point. I asked Phil to go home and get my Mum as it looked like I was going to be there for a while and I hated the thought of my Mum at home by herself (not that she minded). Almost as soon as he left they arrived with a wheelchair to take me to a ward.

I was informed that I was going to be put on a drip and then they might be doing the blood patch. HOORAH! Finally somebody was going to help me. I was whizzed (and I do mean whizzed, the guy pushing the wheelchair was obviously late for something because it was a white knuckle ride) to a ward. As soon as I was pushed through the double doors my heart sank and I wanted to cry. I was on a geriatric ward (every woman was at least in her 80s) and there was an air of total depression. I was greeted by a nurse who said "I told them I wasn't ready for you yet". Not exactly a warm welcome and I felt the tears welling up yet again.

I have quite a few friends who are nurses and I KNOW the pressure they are under but I am speaking here from a patient's point of view and as somebody that was in a lot of pain and I just feel that there needs to be a certain level of care and compassion. If you don't have it or if you lose it along the way then it is time to get out and find another job, that nurse would have been better off as a prison warden!

I was instructed to sit in the chair where she took my blood pressure and left. Oh well, so what if it felt like I had come to the end of the world, at least I was going to get help now. I really needed to be laying down but I had been instructed into the chair and there was a guard rail up on the bed so I couldn't get up on it even if I wanted to. I sent Phil a text to let him know where I was and before long he came back with my Mum. I had now been sat there for about an hour and none the wiser of my pending treatment.

Eventually the female junior Doctor that I had seen in the beginning came in with a male Doctor who shook my hand and told me that they wouldn't be doing a blood patch as it is too invasive. He asked me about my headache and I explained my journey to that point. He told me that I didn't fit the usual criteria for a lumbar Puncture headache as they usuually come on in the the first 12-24 hours. I explained to him that it DID come on in that time frame but that I also had a bad back and THAT pain was worse. I supposed the fact that my excrutiating pain came on outside of his text book timeline then I wasn't a candidate for help?!

So I was promptly discharged with more pills that DO NOT WORK. I was beside myself. Why wouldn't they help me? There is a procedure out there that would stop this torture and it was being denied. I have worked my whole life, I have paid my taxes into the NHS, I am entitled to care aren't I? Apparently not.

I came home and put my head down. More tears and lots of pain. I was told to go easy on the pills that I was given (codeine) and they can make you loopy apparently. I was at the point of wanting to pop them all in one go in the hope that it would stop the pressure in my head. It was unbearable. I had an awful rushing noise in my ears like I was under water and I literally felt like I was going to pass out from the pain, like my brain was going to explode.

I had been a good patient hadn't I? I had followed my discharge instructions, I was told to go to A&E if the headache became unbearable, which is what I had done. I had been there, in pain, for over seven hours and for what? More pain pills that did nothing. The only thing I could hope is that I would wake up and it would have passed. Sadly this would not be the case. Check back tomorrow for the next chapter of "our health care system is like something out of a third world country and you are basically screwed if you are in pain because nobody gives a flying fart".

So (for now) enough about me, how are YOU?

And The BAB Award Goes To ...

2012-02-20T02:58:00.001-08:00

Good Morning Bleeps.

Have you missed me? Well, I have missed you and what a week it has been (and still continues to be)!

I will probably break down my story over the next few days as I have had quite an experience and if I tried to tell the whole story in one go it would take you all day to read it and also if I sit up for too long I start to feel quite poorly. As it is I am writing this laying on the sofa with my laptop propped up on cushions.

As many of you know I went in for my Lumbar Punture on Tuesday 14th (Valentine's). I was told that Phil wasn't allowed to come in with me so he dropped me off at the door and went off shopping in Canterbury with my Mum and the girls. I was taken onto the day hospital ward and asked to change into a very sexy hospital gown, it's quite hard to pop those buttons down your back all by yourself so I only managed the top few and just wrapped the rest of the gown around me. I was a nervous wreck and asked the nurse if I could take one of my Valium pills to help me relax (I came prepared). She told me no and said I would be OK. I was a little upset that I wasn't allowed the drug but couldn't be bothered to argue.

I was in the middle cubicle and on either side of me were other women waiting to have their test done. I was to be the third (and last) person to have it done so I had quite a wait and could hear everything that was happening on the other sides of the curtain. I sat in the chair and listened while the first lady had her test done. The first thing I noticed was that she had her husband with her. I was NOT impressed. I asked my nurse why I was told that I couldn't have Phil there with me for support and yet this lady had her partner with her? She replied that while they don't like it, they can't stop a patient from bringing someone with them if they insist. Maybe that is where I go wrong, I am too polite and play by the rules. I should have just said "sod that, I want Phil there" and then I wouldn't have been alone and scared.

The first lady (with her man) was very vocal during her test. She literally screamed and complained of the pain the entire time. If I wasn't nervous when I got there, I sure as heck was after hearing her freaking out. I had my nurse with me and she shook her head and whispered "don't listen to her, you will be fine". The tone and look that she offered me suggested that the lady next to me was not a typical patient and that I shouldn't judge what it would be like based on what I was hearing.

I knew there was a lady on the other side of me waiting and being the open (nosey, obnoxious) person that I am I decided to have a chat with her. I walked around the bed so that I was on the other side of the curtain and said "knock knock, hello lady behind the curtain?" She replied with a "yes?" (probably wishing to be left alone but who wants to sit all by themselves getting nervous?). I asked her if she had ever had a lumbar puncture before and she replied that she had, about seven months ago and that it wasn't that bad. We chatted for just a short while and then it was her turn.

I sat and listened and sure enough, hardly a peep came from that lady. She was a real trooper and the lack of screams gave me a lot of comfort. She seemed to breeze through the test and so I relaxed .... a little!

Before long it was my turn. A lovely, young lady Doctor came in and introduced herself. She explained that I might feel some pushing and maybe some odd sensations but that the worst part would the anaesthetic as that would feel like a sharp scratch and then a bee sting. I was instructed to lay on my left side with my knees pulled up as close to my chest as possible.

She started to push and poke around on my back, marking out her target spot with a pen. I asked if I had a "good spine" to work with and she replied that I have the "best anotomical back" that she has had in a while. Of course, being the competitive person that I am (think Monica from Friends) I replied "Are you saying I win? I win the BAB (best anatomical back) award? Oh wow, I feel so honoured". You could say I use humour as a defence mechanism. The Doctor and the nurses all laughed and agreed that I did indeed get the BAB award although sadly no large, gold, man-shaped statue or anything was to be given as a prize.

She proceeded with the numbing process, the dreaded "worst part" that I had been warned of. Sure it was a bit of a sting but no big deal at all. This was the worst part? Easy peasy, that other woman must have been a wimp. She checked that I was numb by poking me with a needle and I confirmed that yes, it was working and that I couldn't feel a thing. Boy, this was a breeze. The main event started with a little pressure and some odd sensations as she had predcited but nothing I couldn't handle. I have had four kids after all, three of them naturally with no pain relief (not even gas and air!) so I have a good pain threshold. Then I heard her say "oh" and realised that it wasn't going as straight forward as she was hoping. I asked if everything was OK and she informed me that she had some blood come through and then it had all stopped. She thought that the needle had nicked the bottom of the dural sac that contains the spinal fluid and then it had clotted into the needle, nothing was coming out. The nurse went to get another needle and try again. She asked if I was OK to continue and I just told her to do whatever she needed to do to get the sample, no way did I want to have to come back.

The second needle went in and OH MY GOD I had the most intense pain shoot down my left leg and into my foot. I instantly burst into tears. Like I said, I am not a wimp when it comes to pain, I have been through childbirth and labour without even a pain killer but I have never felt anything like this. I felt like I had been zapped in an electric chair. I couldn't stop crying, literally like a baby. I started to feel a bit guilty for thinking the first lady that got tested was a drama queen. Anyone listening to me from behind the curtain would be thinking I was a pathetic baby but honestly it hurt. The nurse came to me and told me to hold her hand, which I did. I was conscious of not breaking her fingers because I was squeezing so hard. I kept apologising over and over for "being a baby" but I kept saying "I didn't expect that, it was a shock, I really didn't expect that". I must have sounded like a broken record but the nurse was lovely and kept reasurring me that I was doing great.

When it was all done I joked that I might not have prepared a speech to accept my BAB award but I did a Kate Winslet and cried instead, even in pain I found a good joke (well, at least I thought I was funny).

I was told to relax for a little while and was given a cup of coffee with a couple of biscuits. I had only been laying there for about fifteen minutes when the cleaning lady (I am assuming this is who she was as she was cleaning all the cubicles where people had left) pulled back my curtain and said "How much longer are you going to be here?" WTF?! I replied that I didn't know and go ask my nurse. Everything I had read said that it is best to lay flat as long as possible but I was getting out of bed, dressed and into the car for my half hour journey home within the hour.

I returned home to a beautiful bouquet of flowers (with chocolates) from my sister and brother-in-law, which was lovely. I received another bouquet during the afternoon from my Dad, also lovely. I was laying down as instructed all afternoon (drinking lots of coffee as caffeine is said to help) but by early evening I was in a lot of pain. I was warned that I might get a headache that was "like a hangover" and let's face it, I am no stranger to those but this pain wasn't in my head. Sure, I had a muzzy head but the pain in my back was unbearable. I knew I needed to lay down but laying down was killing my back. Sitting up was hurting my head. I ended up in tears saying that I just didn't know what to do with myself.

Before my test I had asked the Doctor if I was going to be OK to go out for my Valentines dinner (Phil had booked one of my favourite restaurants) but by about four o'clock it was obvious that I wasn't going anywhere, I was in too much pain and we had to cancel. I was so sad. I dosed myself up with pain killers and laid on the couch, not exactly a romantic Valentine's day but not something that I could help.

I hoped that when I woke up the next day I would be OK but the "fun" was just about to start. It is fair to say I have been in agony ever since. I need to rest now but will continue when I feel better, please let it be SOON!

So (for today) enough about me, how are YOU?

Headache Hell

2012-02-15T01:56:00.000-08:00

Good Morning Bleeps.

I am in headache hell from my lumbar puncture. I have called the hospital and am waiting for a nurse to call me back. I will blog as soon as I can open my eyes properly.

So enough about me, how are YOU?

Valentine's Day Lumbar Puncture (not the same as diamonds is it?)

2012-02-14T00:50:00.002-08:00

Good Morning Bleeps.

Happy Valentine's Day. I was so lucky when Cupid shot his arrow into my bum almost three years ago and gave me my lovely soulmate, Phil. He is my rock, my support, the person who can make me laugh on the good days and smile through the tears. I never knew real love until he was brought to me on a Virgin flight to Miami. I am forever grateful for him. I just needed to share that on this special day.

So, yesterday I went to my Doctor to ask for something to help me relax for my MRI. I wasn't able to breathe (MS Hugs?) for two days and I was nervous about feeling panicked in the test. I thought I might have a bit of a fight on my hands and maybe (with hindsight) I went in there with an aura of battle but I really did end up with a fight.

I told him what I had been experiencing and that I would please like a prescription for Valium or something similar to help me relax and get rid of this horrible feeling of not being able to breathe. He told me that since I hadn't had my official diagnosis yet that I was just suffering anxiety. This was a bit confusing to me because was he saying that if he had a letter from my Neurologist confirming that my "probable MS" was in fact confirmed, would this now NOT be anxiety? What a joke!

Telling me I have anxiety is like a red rag to a bull because I was fobbed off for two years as an anxiety case. I told him that yes I was anxious but this was due to not being able to breathe, you know that little thing of feeling like you are suffocating would make anyone feel bloody anxious.

He told me he couldn't give me anything and I should ask my Neurologist. I explained to him that I don't see my Neurologist until April and that I was having my MRI today and a Lumbar Puncture the next day. I said "Please just help me get through the next two days, that is all I am asking from you". He looked at me like I was stupid and said "are you worried about having an MRI?" So what if I was? Isn't claustrophobia a recognised condition? He made me feel pathetic. I told him that ordinarily while I don't love having an MRI and being enclosed that no I wasn't worried about it, I was just having problems with breathing. Seriously, you wouldn't think it would be so hard.

So, he gave me a prescription for ....... wait for it ...... THREE whole tablets. Yup, three! What did he think I would do with more? Overdose? Sell them at the school gates? Bloody ridiculous. I was SO. FLIPPING. MAD. I was literally shaking with frustration. I popped one of the pills and took myself off to the hospital for my MRI.

FUMS and FUGP!

I sat there with my Mum waiting to be called in and my Mum asked me if I was OK and if the Valium was starting to kick in. I actually wasn't feeling it. I don't know if it is because I got myself so upset at the Doctor's that the tiny yellow pill wasn't man enough for the job but I honestly didn't even feel it. Maybe I have a high tolerance level to drugs?

I sat there in the waiting room and looked at my Mum and said "I just feel so sad". I started to cry and explained to her that I am afraid that the next couple of tests will come back negative and the Neurologist won't give me an official diagnosis (even though he did in December when I was a private patient) based on my brain MRI showing lesions. I am sad because I feel like I will be just discharged with no answer, no help, no support and a GP who just keeps telling me I am anxious.

Last time I checked anxiety didn't show up on Brain MRI's, make you go blind or cause all of the other symptoms I have been struggling with. Are we really back here? This is the same Doctor that I had a melt down with and told him if he agreed with the other Doctor that my numbness, tingling etc was due to anxiety attacks then to give me anti-anxiety medication. He obviously didn't agree THEN because he referred me, so how can he say this to me now?

Maybe my lack of breath IS due to anxiety right now and with everything I have been going through then it would surely be understandable. So, then HELP ME with the anxiety. Why do I feel like I have to fight to be heard, insist on getting help? No bloody wonder people get depressed.

My MRI went OK, they had to re-do a couple of the pictures because I moved. I was struggling to breathe so it was probably when I was straining to get air that I moved too much. I asked the radiographer if they saw any lesions (I had already told her that I wouldn't be upset if there was) but of course they aren't allowed to say anything. I have to wait two months for my results.

Today I have my Lumbar Puncture. I am not as nervous about it as I thought I would be. Maybe the nerves will kick in when I get to the hospital but right now I actually feel OK about it. It has to be done so why worry? I might call the hospital in a little while to ask if I can take the other Valium that I have so that it has time to kick in before I get there. I am able to breathe today so that is good and apart from heavy, tingling legs I feel OK so today is a good day to get a needle in my spine.

So enough about me, how are YOU?

No I Do NOT Want A Hug!

2012-02-13T02:20:00.000-08:00

Good Morning Bleeps.

I hope you all had a lovely weekend and are all raring to go on this fine Monday morning, nope me neither. I had a bit of a tingly morning yesterday but it was no big deal, I was relaxing with my Mum while Phil took the girls to the movies and the day was quite low key.

I didn't have much that I needed to do, just prepare the dinner for when they got back, tidy up a little and do some laundry. It isn't like I "over did" or anything but for some reason my MS decided to remind me how much it loves me by giving me a great big hug.

Awww that sounds lovely doesn't it? I mean, who doesn't enjoy a nice hug right? Wrong!

Now I am not entirely sure if this is what they call an MS hug or not since I am being investigated for cardiac issues too but all I do know is that when it takes hold of me it is unbearable. I feel like I am having a heart attack. I have such pain in my chest but worst of all, I can't breathe. I strain and strain to try to suck enough air into my lungs but I just seem to be unable to do so. Sometimes I have pain in my neck and heaviness in my arm so there is always that little voice in my head that says "but what if it isn't an MS Hug, what if it is something wrong with my ticker?"

I get my heart monitor on Wednesday and will wear that for a week. I have somewhere fancy to go on Sunday (a surprise for Phil's birthday that I have planned) so I am worried about trying to disguise it in my slinkly clothes, I am hoping it is discreet. My cardiologist is taking my symptoms seriously and isn't just brushing it under the carpet, he said he would rather rule out anything cardiac than just assume it is MS. I have more faith in him than I do in any of my other doctors, I know I am in good hands. He has said that his gut feeling is that is it NOT my heart so I keep taking comfort from that however it is hard to not freak out when I have chest pain like this. The whole of last night I just couldn't catch my breath.

I felt light-headed and I won't lie, I was slightly panicked by it. Not being able to breathe is scary stuff! Of course a couple of glasses of wine helped me to relax but lets face it, the reality is that alcohol isn't good for my heart either. What is a girl to do? I have read that some Neuros will prescribe Valium for occasions like this, for when one of these hugs takes grip but my Doctor won't prescribe me anything. I am on my own for now with this one (as well as the other symptoms).

I have woken up this morning and feel the same. I still have chest pain and shortness of breath and I sure hope it doesn't last all day because I have another MRI today at 6.15pm. The thought of laying still in that tube with this feeling of not being able to breathe is quite frightening. I usually have to do positive "mind speak" and take myself away to somewhere nice (usually the lovely beach at Fanabe, Tenerife) on a normal day when I have an MRI as I don't like the enclosed feeling of it, I get a little claustrophobic. Last time I asked them if they could give me something to help me calm down but they said no, they weren't allowed. They advised me to go to my Doctor before-hand to get a prescription for something to help me.

I have asked for something to help me relax before from my GP and she said no so I am thinking fat chance however, I have just booked an appointment for this afternoon with a different Doctor (the one that finally took me seriously last year about my symptoms and referred me to the Neurologist and Cardiologist). I am going to DEMAND to be given something to help me, surely they can't just let me deal with this on my own?

So enough about me, how are YOU?

Happy Birthday

2012-02-12T02:59:00.000-08:00

Good Morning Bleeps.

Yesterday was a good day. I got up feeling quite good, which was just as well because I had to leave at 7.30am to collect my Mum at Heathrow in from Miami. I was a little bit worried about going because the day before that (Friday) I was rudely introduced to Mr. Vertigo for the first time. I have often been dizzy and light headed since the beginning of my MS adventure but this was an entirely new experience.

I was on the phone to my Sister and as I was speaking to her I realised that the fireplace was slanted. It wasn't like the room was moving or spinning like it does when I am dizzy, everything was just at an angle. It looked like the ornaments on the mantel-piece would slide off, it was that slanted. It made me feel nauseous and it was NOT fun.

I was a little worried about collecting Alice from school but I had no choice as Phil was on his way up to collect Megan from school so I had nobody to call. I just took it easy and drove slowly but I felt like I wanted to throw up, it was like I was on a boat in rough seas and I had a feeling of motion sickness. I was worried about what I would do if it hadn't gone by morning as I needed to drive to the airport. Phil had plans to take Megan to her karate lesson so there is is no way I would have asked him to skip that, I would feel too guilty. My friend Gill had said that if I needed her to go then to call but I would never have done that either, I am realising that I find it impossible to ask for help. Luckily when I woke up yesterday it was gone and so I had been worried for nothing.

I set off on my hour and half drive with Kassidy and after just a little while I noticed that the black floaters that I often get these days were back in my eyes. They don't affect my vision too badly but they are annoying because every time I move my eyes these little black dots float around in my eyes. Because of this I was concentrating so hard on the actual task of driving that I wasn't really thinking about the route. I have made the trip to the airport so many times that I could do it in my sleep but I suppose my brain fog was alive and well because I drove straight past the turn off on the motorway. I noticed it too late and said to Kassy "oh no, we were supposed to go off there". Oh well, nothing else to do but to carry on to the next exit and turn around. It all worked out fine because when we got to the arrivals part of the airport, my Mum had just come through. Perfect timing.

We spent a nice relaxing day catching up and then last night we went out to celebrate two of my girl's birthdays. Kassidy will be 18 on Thursday and Madeleine is 15 on Friday. I know what you're thinking, I don't look old enough to have children this old but guess what? My oldest turned 22 on Christmas Day so these two aren't even my eldest. Impossible really since I am only 29 myself.

Kassidy's 18th and Madeleine's 15th Birthdays

It was a lovely evening and I probably had a little too much wine (no, surely not) but I had hair done, full make-up and felt like the "old" me for a change. I was a little bit worried that I would wake up today and feel like rubbish but I actually don't. A bit tired and tingly but nothing like I thought I might.

Phil is taking the girls to the cinema later so it will be just me and my Mum at home, relaxing in the warm. A perfect Sunday. I hope you all have a lovely, pain free day and I will leave you with photos from our evening.

I obviously said something hilarious to make my Mum laugh like this, shame I can't remember what!

Mmmmm Burrito

Phil and Megan

The whole group (Megan was hiding).

Kylee with her boyfriend Grant

Always the clown!

Kassidy and Matt

So enough about me (and my whole family), how are YOU?

Wishful Thinking?

2012-02-10T02:35:00.000-08:00

Good Morning Bleeps.

I hope you are all well today and looking forward to the weekend. I am because my Mum arrives from Florida in the morning and the girls break up for a week from school. No more school runs for a while, yay!

Last night I got a phone call from a lovely lady called Shirley to invite me to come in for my Lumbar Puncture on Tuesday. I joked with her that it is the WORST Valentines Day date offer EVER! I have to go in for a 10am appointment and I won't lie, I am dreading it.

I am also feeling a little bit confused and frustrated this morning because this is all so "arse about face". You see if I had just waited for my NHS appointment (a 2 month wait to see the Neuro) then I would still be nowhere near where I am now. I would still be suffering with symptoms of an unknown illness, a Limbo-Lander. As many of you know, I wasn't prepared to wait any longer (to be fair I was fobbed off by my GP for two years as an "anxiety" case) so I paid out of pocket to see a Neurologist privately. Within two weeks I had my brain MRI and was told there were lesions and yes, it is MS.

I then asked to be transferred back to the NHS to continue my journey as I can't afford to keep paying but now I have to do more tests as a result because the Doctor needs to "tick all of the boxes". So, I get a diagnosis in December of MS based on my history (I had symptoms in my 20s and it was "possible MS" then until I got a clear MRI, which happens in up to 10% of cases) as well as my current symptoms and MRI results. I felt like I had my answer finally but now I have to have more tests. What's the point? I have MS friends who had a "normal" Lumbar Puncture but lesions on the brain scan (like me). No test is conclusive so why put myself through this? Not everyone has to have a LP to get their "official" diagnosis. I am frustrated at what feels like a backward step. Of course I don't HAVE to have the tests, there is no gun to my head but if I don't then I wont get any medication or support from the health care system.

Also, he repeated all the blood work that I just had done in December to rule out other mimics (such as Lyme) so why do them again? He already has those results. Again, have to "tick those boxes".

So on Monday I have another MRI (of my spine this time), Tuesday is the dreaded LP and Wednesday I get fitted with my heart monitor. I should get a loyalty card at the hospital (or at least discounted parking).

It has got me thinking though (and hoping I suppose). What else could cause these symptoms and also show brain lesions? I am not finding anything on Google, everything points back to what I have already been diagnosed with and that is MS. I can't help thinking though, "what if?" "what if the initial diagnosis was wrong?" "what if this is something other than MS?" "what else could cause all of this tingling, numbness, vision disturbance, fatigue and everything else?" "what if this will just all be a bad dream and go away?" I wonder how many other people go through this? Hoping that it is a mis-diagnosis and that it will all just disappear.

What if all of the rest of my tests come back normal? Where will I be then? Right where I am now I suppose, which is with no medication to help the symptoms and no MS nurse to turn to. If this does happen do I seek out an MS specialist for a second opinion? How does one do that on the NHS? I have no clue. I feel like I am dangling here a little bit with no guidance. I am worried that my Neurologist will send me away with my "bothersome symptoms" as he so kindly put it.

If that does happen then what do I do next time something else goes numb or when I have that bothersome little symptom of going BLIND? Deal with it? Man up? Stop moaning and just get on with it? Yes please, I hear you shout!

I guess I am just nervous about the test itself (not a great Valentines gift is it?) but more so I am afraid to get the results. It would be great if they all came back clear of course but it still leaves me with a dodgy brain MRI and feeling unwell every day. I guess it would be nice if I just woke up to find that this had all just been a very bad dream, now THAT would be really sweet.

So enough about me, how are YOU?

Keep Up Lefty

2012-02-09T06:07:00.000-08:00

Good Morning Bleeps.

Yesterday was a good Wednesday because my two youngest, sweet girls came home from their Dad's. We share custody every other week with "switch over" day being a Wednesday so I always miss them terribly and look forward to them coming home. Once they had been home for a while I let them know that I haven't been having a great few days and so with Half Term school break looming I may need some understanding if I can't drive them here, there and everywhere. Just trying to keep up with their social calendars is exhausting in itself. I feel bad about that because I don't like that my MS affects them but it is what it is.

We will also have my Step Daughter here from Friday (she comes home every other weekend) and my Mum arrives for a week on Saturday (she lives in Florida and is coming over to see me, I think all my crying has her worried). You could say I will have a busy time coming up especially when you throw into that mix a few tests that I have booked (still waiting for the appointment on the Lumbar, even though I phoned up chasing it). The first of these tests starting this morning with my heart "stress test". They are investigating and trying to rule out anything cardiac with these chest pains (I think they are MS hugs).

I was already quite nervous about the idea of getting showered and out the door by 8am (since we all know that if I get in the shower before Noon these days it is a minor miracle) but then of course I had the added worry of my numb left leg and how was I going to get on a treadmill and keep up?

Maybe it was playing on my mind because at 2am I was wide awake with insomnia. My heart was racing as well as my mind. The more I tried to get back to sleep the harder it became. Soon I was on the countdown "if I fall asleep now, I will have X amount of hours before I have to get up".

I often describe the numbness I get as similar to when you get Novocaine at the dentist and it is starting to wear off. I'm not totally numb where someone could stick a pin in me (my Neuro seems to enjoy this a bit too much) but then I'm not quite normal either. It is that in between stage (where you usually dribble your coffee down your chin because you THINK it has worn off enough for you to have a drink). Well last night as I lay there awake, I scratched my numb thigh only to realise that for the first time it was totally numb. All feeling gone, "stick a pin in me and I won't feel it" kind of gone.

Now over the last few days this would have been enough to send me reaching for the Kleenex but it didn't bother me for some reason. I think I have had it up to the top of my head with getting upset over these things lately. Now don't get me wrong, I am sure there will be blogs to come with me wailing about the injustice of it all but last night wasn't going to be one of these times.

My feelings were just as numb as my leg, it's not that I didn't care but it was just more like a mental exhaustion from it all. An emotional shrug of the shoulders, a "whatever". Bring it MS, is that all you've got? A big fat middle finger to the MS and whatever it wants to throw at me next. Actually thinking about it, I probably shouldn't tempt fate. Well done MS, bravo, very good job with the numb thing (phew, hope I got away with that!).

Eventually (after Phil told me to put down my iPhone, get off Facebook and cuddle up) I drifted back to slumber. Of course I was awake again before the alarm because like I am sure many of you have experienced, when you know you have to be somewhere your body just kind of senses it. I was able to shower, put on my very glamorous tracksuit bottoms and get out of the house on time. I NEVER go out of the house dressed like this and joked to Phil that I felt like I should be going on the Jeremy Kyle show.

I was called into the room by the nurse who wouldn't let Phil come in with me (boo) and she stuck suckers all over my chest and hooked me up. Blood pressure was it's usual high self, well at 150/110 a little higher than normal but I was a bit worried about how my numb leg was going to be. I explained that I was just nervous, numb and to please be gentle. She put me through my paces, increasing the speed and incline every five minutes or so taking an ECG with every change in pace. There was a colleague with her and every now and then they would consult the printout and whisper to each other. I asked if everything was OK and she replied that the results would be sent to the cardiologist. Maybe they were just whispering what a fine specimen of a woman I am (ha) or maybe my heart was doing something funky, who knows, all I know is that Lefty kept up. Sure she was heavy and numb but she didn't let me down.

So that's it. My workout done for the day and feel quite proud that on rubbish sleep, with a numb leg, shortness of breath and high blood pressure I didn't fail my test. My legs are burning and heavy now but that might be the shock of doing something physical for the first time in months. All I know is I've earned my dinner later.

So enough about me, how are YOU?

Warning: Emotional Wreck Ahead!

2012-02-08T02:37:00.000-08:00

Good Morning Bleeps.

I don't know where to start today, I am completely and utterly hacked off. Yesterday I told you about my great day (the previous day) and how I was able to do lots around the house without feeling tired at all. Well, let me tell you that what the Universe gave me with one hand, it punched me right in the smacker with the other. Yesterday was AWFUL.

I woke up feeling OK, nothing out of the ordinary just the usual feelings of fatigue and some tingling. Then as the morning went on I realised that I was starting to lose feeling in my leg. My left thigh had gone completely numb. It is not unusual for me to have heavy legs with what feels like growing pains (x100) but this was different, something new. I DON'T WANT ANYTHING ELSE NEW! Do you hear me Universe? Stop taking the piss.

Emotionally I was a wreck. My friend Gill phoned to tell me a funny story about her other half. He had told her that her car wasn't reversing and that the clutch had gone. She called the RAC to get help but the mechanic couldn't find anything wrong with the car. It turned out that he had been trying to reverse her car by putting it in 6th gear, what a numpty (he won't live that down for a while). Her story made me chuckle but then as soon as she asked the fatal words of "how are you today", I burst into tears. She listened patiently (as she always does) offering her support but boy did I feel like a pathetic idiot when I got off the phone, why was I letting this thing get to me so much?

I decided to shake it off, take a shower and get over myself. So I had a numb leg, so what, right? No biggie, I can deal with it especially when there are others out there dealing with a lot worse. Man up! I couldn't be bothered to do make-up, style my hair or even shave my legs (not like me at all) so it was sweatpants and a ponytail.

I came downstairs to a phone call from my Mum. More tears. Really? REALLY Karen? For goodness sake woman, why was I not able to keep a lid on my emotions? What the heck? Who was this whack job? MS: 2 - Karen: 0.

I made myself another cup of coffee (because on top of everything I am trying to lose the 10lbs I have put on from comfort eating and so have put myself on a very unhealthy coffee only diet) and tried to shake it off. I faffed around on Twitter (which I have a sudden addiction to) and FaceBook and then my lovely sister called. BAM, round three of crying like a baby. It was starting to get embarrassing now. Seriously chick, pull yourself together. MS: 3 - Karen: 0.

OK that was it, I was all cried out. I was exhausted from it all. I decided to say FUMS, you are not going to beat me. Was it wine o'clock yet?

I had a diversion in the afternoon when the plumber arrived to fix our downstairs loo. He hadn't been here long when all of a sudden the house was filled a terrible smell. When I went down to investigate he told me how had needed to remove the whole toilet to get to the pipes, the smell of drains was disgusting. Suddenly the smell in the house was matching how I was feeling. Like sh!t.

Phil arrived home and I was telling him about the plumbing and I guess he sensed that all was not well and asked "bad day?" Yup you've guessed it, MORE tears. I broke down for the forth time in one day, pathetic. I told him that I feel like a broken record and that people will stop wanting to call me or talk to me if all I do is cry.

He reassured me, hugged me and was his usual supportive self, rubbing my back as I cried like a fool. I poured myself a rather large glass of wine (sod the liver) and started to relax, the rest of the evening was tear free (probably run out).

This morning I have cried some more. Luckily Phil has left for work but I apologised to Kassidy for being so emotional. She is so supportive and such a sweetheart and she said "Mum, you only got diagnosed in December, this is all still very new. I would think you were weird if you wasn't upset now and then". She went on to say that this was a life changing thing so of course I will have down days. Down days? I feel like I have had down WEEKS.

I feel angry, resentful and basically pissed of with the world. I really need to find a way to deal with this better, some days I think I am doing really well and then like a wave it hits me and I am back at square one. I am told that this is all part of the grieving process and as trained counsellor I can intellectualise it and recognise it but I don't want to feel it any more.

Maybe I am swinging between the anger, denial and sadness parts of the grieving process. I sure as heck am nowhere near acceptance. I think I will ignore the phone today, it isn't fair to friends and family to keep burdening them with this. It is ME that has MS, not them.

So I guess in a nutshell, MS is kicking my emotional bum at the moment but even though I may be down, I am not OUT.

So enough about me, how are YOU?

MS Girl

2012-02-07T01:05:00.000-08:00

Good Morning Bleeps.

I am sitting her watching Morning TV and Miss Piggy and Kermit are being interviewed. I have always LOVED Miss Piggy and her sassy attitude, I actually can't wait to see the new movie when it comes out. I guess some of us never grow up.

So anyhoo, Muppets aside today I come to you with a mixed bag of feelings but I am going to try to focus on the positive as much as I can otherwise those of you that don't know me personally will start to think I am a right old miserable bag (those of you that are close friends or family already know this as a fact but it is nice to keep up somewhat of a front, right?).

As you know from yesterday's blog (what do you mean you didn't read it? Flipping liberty, go read it now!) you will know that I woke up with a toothache. A couple of extra strong pain killers later and I felt OK. Actually I felt better than OK, I felt good.

I took my shower and waited for the exhaustion that this simple task usually sparks but nope, nothing. I felt the same post-shower as I did pre-shower. Hmmm. I got dressed, applied make-up and even dried my hair, all in ONE go. Still, no bone-crushing fatigue. Odd.

I came downstairs and it suddenly dawned on me that for the first time in a long time I felt like my old self ("old" self as in "young and lovely" self of course). I almost didn't know what to do or how to feel about this sudden change in events, so I decided to clean. I cleaned the house from top to bottom and bearing in mind that we live in a four storey town house, this is no small thing! I vaccuumed the carpets (stairs and all), cleaned the kitchen, mopped floors, did laundry, cleaned bathrooms, took out the rubbish (garbage) and dusted/polished surfaces. After all that, I still had energy.

I went on to cook a roast pork dinner and when I finally sat down to relax with a glass of wine and Phil, I still felt fine. I was tired but I was normal person tired. I was facebooking with my lovely friend Jenni, a fellow MSer, and I excitedly told her about my day and that I was feeling normal person tired and she totally got it. I am sure she won't mind me telling you that she felt a similar feeling of happiness when she was able to iron her clothes, she said she told everyone. Maybe non MSers will find this hard to understand but when you usually get exhausted from simple, everyday tasks it is a big deal when you get a glimpse of your former self. For me, it was exciting and it gave me hope that I will get more days like that.

My day was made even better last night when I got a text from a very close family member to say that his cancer is still in remission, another big deal since he was only given six months to live when he was diagnosed nine years ago. I am SO thankful for the trial drug that they offered him way back then and his positive attitude that has helped him keep the evil that is CML away.

When I went to bed my symptoms decided to come back with a vengeance. My legs were heavy, I was having electric shocks in my tongue (a new sensation that was making me jump out of my skin) as well as the ice-cube in my brain, which I hate, hence the mixed bag that I mentioned at the beginning. Having said that I told myself to be happy and grateful for the respite that I had during the day, to celebrate the good and to not focus on the negative.

So, all in all yesterday was a good day. May there be many, MANY more not just for me but for all of you too.

So enough about me, how are YOU?

The Curse of Nobby's Nuts

2012-02-06T01:41:00.000-08:00

Good Morning Bleeps.

Well I didn't get my wish of waking up to the snow being all gone and to add insult to injury, the snow of yesterday has turned to ice. I hope it all melts soon because I just will NOT go out in it. I hate being house-bound but don't want to risk my life (or the lives of others) by getting behind the wheel.

I really do need to be able to go out though because I have woken up with a really bad toothache and a trip to the dentist is required. You see, I broke my very back molar about two years ago on a bag of nuts while staying at a hotel. I was staying by Luton Airport for the night before I was to fly out to Majorca to join Phil (he was already there with Megan) to celebrate my 40th birthday.

I had checked out the hotel website before I booked and made sure they had a restaurant and everything a girl needs when staying alone but when I got there it became clear that they were big fat liars and there was no restaurant. When I questioned the receptionist, she replied with "Oh yeah, our website is wrong, we should change it really". Really? REALLY? I wasn't impressed but there is no reasoning with stupid so I just thanked her for her "help" and found their idea of a bar. Dinner was a glass of red wine and a bag of Nobby Nuts. Bloody Nobby, stole my tooth!

I managed to get through the holiday without too much pain (it was a bit sharp but that was all) and on my return home booked right in at my dentist to get it fixed. The dentist told me that he couldn't fix it as it had literally broken in two. He wouldn't be able to pull it out either as there wasn't enough of it left to grab hold of, likewise it couldn't be crowned for the same reason. He filled it with cement and said it should hold for a while but it was not a permanent answer.

The cement has fallen out and been re-filled twice since then but it just won't stay. It fell out for the last time a few months ago but with everything going on with my MS symptoms and feeling like poo, I just haven't been feeling up to going back. Now however, it is really painful and the problem is that the only permanent solution my dentist can offer is to call in the surgeon, put me under and dig it out. He has told me that the root is so long it is attached to the jaw bone and so it is sort of a big deal to get this sucker out. I keep putting it off because I just really cant face going through the pain (not to mention that it will cost me a fortune). Today though, the whole left side of my face is throbbing making me wonder how much of the facial pain I have been getting lately is MS and how much is dental?

I think that is the thing with MS, it is really easy to just put everything nasty that you feel down to it. My face is numb, is it the MS or is the nerve from my broken tooth inflamed causing some of the numbness? How do you know? I belong to a support group where one of the members put pain down to her MS and she ended up in the hospital with a serious kidney infection, it was nothing to do with her MS and she had misread her quite serious symptoms.

It is important I think to not just assume that everything is MS related (poor MS, sitting there getting the blame for everything) when you get a pain here or a niggle there. So, I will dose up on pain killers for now to combat the throbbing in my tooth and wait for the sun to come out and melt the white stuff so that I can get to the dentist.

I am a bit of a scaredy-cat when it comes to the dentist though, I am not ashamed to admit it. I hate the smell and the sound of the drill, I hate the feeling of laying there with what feels like no means of escape. I hate the hard plastic thing they put in your mouth and expect you to bite down onto for an xray when it really hurts. Basically, I just hate the whole environment. Actually thinking about it, snow is quite pretty and we don't get it often so really Mr. Frost, you are welcome to stay for a while longer and the dentist can wait!

So enough about me, how are YOU?

PMS

2012-02-05T03:35:00.000-08:00

Good Morning Bleeps.

So who else woke up to snow? Sure, it is pretty but for me the novelty wears off really fast. I don't want to go out in it and I refuse to drive as soon as three flakes hit the ground, so for me it is totally inconvenient. I have a friend who lives in Colorado where they get a ton of snow and I just don't know how she deals with it. We grew up together in South Florida and I am definitely a flip-flop kind of girl. Luckily it is Sunday today and we have nowhere we need to be, there is food in the cupboards and wine in the fridge so I will just stay in the warm and hope it is gone by tomorrow.

I am feeling fed up today. Not because of the snow but because of PMS. It is well known (and joked about by many men!) that some women get grumpy once a month. When I lived in America it was referred to as PMS (pre-menstrual syndrome) but here in the UK it is called PMT (pre-menstrual tension). I hear all you men saying "what the heck is she talking about THAT for?" but I am using the American version to describe how I am feeling today, which is PMS; Pissed off with MS!

You may have noticed that I didn't blog yesterday. I did actually write one but felt it wasn't appropriate to publish. It went something like this:

Good Morning Bleeps.

I feel like sh!t.

The End.

Phil said I should publish it anyway as it accurately described exactly my frame of mind however, I like to have a bit more content in my blogs. Friday night was bad. I woke up at about 2am with the worst chest pains I have had in a while. I also had pain in my neck, jaw and my arm was heavy. Was I having a heart attack? Did I call for an ambulance, go the emergency room or even wake up Phil? No, I decided to update my Facebook status instead (like you do). I guess somewhere deep down my instincts were that I was NOT having a heart attack but I was in a lot of pain.

As I chatted back and forth to some of my friends on the other side of the pond as well as my friend Gill, (who I can usually count on being present in Insomniaville as we have named it) the pain slowly subsided and I finally drifted back to sleep at around 5am.

I am not sure what is causing me to have these chest pains. As I have discussed already, my Cardiologist doesn't feel like they are heart issues but he is testing me anyway (I am getting fitted with a monitoring device next week). Could this be MS Hugs? A friend suggested that my subconscious might be going crazy and these are actually anxiety attacks that I am waking up with. I don't know, all I know is that it hurts and it scares me.

Yesterday I was super, SUPER tetchy. You know how sometimes you just want to kill people for no apparent reason? I was being snappy (Phil even commented on how tetchy I was) but I couldn't seem to control it (although I did acknowledge and apologise for it). I was fed up, tired and in pain. I didn't even want to go out for an Indian meal and you all know how much I love my Indian food. I just couldn't be bothered.

Last night I slept better. I did wake up in the night but I refused to pick up my iPhone or be tempted by my Kindle. I knew I would be awake for hours if I did. This morning I am frustrated and I can feel myself being short tempered again.

Did you ever have that feeling where you just want to cry for no apparent reason? In my case, I know the reason. I am sick and tired of feeling sick and tired. I feel like a broken record. I want to throw myself on the floor and have a temper tantrum like a two year old. I want to break stuff (but I don't want to clear it up), I want to drink wine (but is only 11am and that isn't the answer), I want to eat junk food (but this sort of comfort eating is why I am gaining weight), I want to find the bloody answer.

I am really trying to not be snappy but my body is testing my patience. I can't feel my left arm, it is heavy, feels like it doesn't belong to my body and as though ice-cold water has replace the blood. My face is numb and my legs are heavy and throbbing. I quite simply want to lock myself in a room, all alone and just feel sorry for myself. I know this isn't productive so I am really trying to not be overcome with my PMS. I feel frustrated and angry. This thing makes me feel lonely. I don't know why and it is really hard to explain. I can tell my family about my symptoms and they can support me as they always do but ultimately it is just me and these horrible sensations. Ultimately, I am alone in this even when surrounded by those that love me.

As I lay in bed last night I had that ice pick feeling in my head again. It always freaks me out a little bit as I can't help but wonder, is it more lesions forming in my brain? What's going on in there? I joked to my Mum that at least MS isn't boring as it changes from day-to-day. I don't feel like joking about it today, today I resent it.

I want this bloody thing GONE. I want to wake up and feel OK, I want to remember what that feels like. I want my life back. My friend Beatrice suffers with Sjogren Syndrome and I had a lovely visit with her Friday. I spoke to her about my frustration and she said that I will come to accept it (I think we both agreed that I am still in denial) and that I will start to appreciate the good days. She has had her illness for many years and so she knows how it is to be where I am now (new and in the thick of it) and so I will trust what she says, I know she wouldn't lie to me or tell me just what she thinks I want to hear. I am grateful for her.

I am not it the right place in my head today to be glad of the symptoms that are NOT here such as the vision problems or the dizziness, my glass is half empty today. I have serious PMS!

Poor Phil is captive in a house surrounded by snow with a miserable cow bag who is feeling seriously sorry for herself (that's me in case there was still any doubt ha ha). It's a times like this that I think one of those punching bags might be a good idea so I can thump out my anger (although today I wouldn't be able to because of my sodding arm!). Instead I will just try to put my mind somewhere else, this is a psychological game a lot of the time and I won't let this invisible monster win even though today it seems to be holding the best cards.

So enough about me, how are YOU?

Monkey In My Shower

2012-02-03T00:59:00.000-08:00

Good Morning Bleeps.

I wonder how much hair you can lose (and for how long) before you go bald?

I have faced this before. A few years back I was going through a stressful time in my life and I was literally waking up every day to handfuls of hair on my pillow. One Sunday I woke up and it looked like a woolly mammoth had slept in the bed with me so I freaked out and Googled "same day blood tests". I was thinking that something really serious must be wrong with me to be losing this much hair every day (drama queen? moi?). The bald look works fine for Bruce Willis but I was thinking that I probably couldn't pull it off.

I found a walk-in Doctor in London that was open on a Sunday and would do a full blood count to try to see what was going on. Everything came back fine, even my liver function test (I know, I know, shocking since I pickle it every day in wine) so he referred me to a Trichologist just off Oxford Street. I met a wonderful man, top in his field, who ran more blood tests (relevant to hair follicle health) and he advised me that my iron store levels (ferritin) were low and started me on iron supplements as well as protein tablets.

He also said that stress can be a huge factor in hair loss as well as diet and exercise. I told him what I was going through (a nasty divorce) and then we discussed what I was eating (not much) and that I was doing a lot of running. He told me that the first things to show stress in the body were hair and nails as the body doesn't "need" them to stay alive. Um, yeah but I need my hair to feel good about myself thank-you-very-much.

My life started to settle down and eventually I noticed that my hair loss was slowing down and it started to grow back (I was seriously tufty for a while). The whole hair loss part of my life became a distant memory (actually a lot of my memories are distant lately but let's not pull at THAT thread), until now. The bloody long-haired monkey is back in the shower with me every day. My hair is literally coming out by the handful again because, gosh, it's not like I have enough to think about already with everything else. Ugh!

I won't be freaking out this time as I know that last time it did all settled down after a while. I suppose I should start taking iron again just to be safe but I also recognise that I have been under a LOT of stress recently and maybe this is my body letting me know it is time to relax a bit (or maybe a luxury spa vacation?).

I have done a lot of research on this lately to see if my hair loss is somehow linked to MS and although I am not seeing anything obvious, there seems to be a strong link between B12 deficiency and hair loss. In fact, on one of my "go to" places for MS information, the MSRC website, I found a really interesting article about B12 deficiency, which can also be an MS mimic. If any of you are still in limbo land it should be one of the things that your Doctor rules out as part of the diagnostic process, my levels have been checked and have come back fine so I know this is not the cause of my hair loss.

I have also read that some of the MS meds can have this as a side effect but I am not on any yet so again, I know this isn't the reason. I hope my hair loss doesn't last long this time because even though the last time it happened Phil said he would shave his head if I went bald, I don't think either one of us could really pull off that look!

Anyway enough about me, how are YOU?

My Knight In Shining Armour

2012-02-02T03:34:00.000-08:00

Good Morning Bleeps.

This morning before he left for work, I asked Phil how he feels about the fact that I mention him in my blog. You see, I am a bit of an open book (no, really? I hear you say) and I wear my heart on my sleeve. I meet people and after about five minutes they know about my whole life and I often think to myself "why on Earth did I tell that person such a personal thing?" I can't seem to stop myself though, it is just who I am, the girl with verbal diarrhoea.

Phil on the other hand is more private than me so I wanted to make sure he was OK with the fact that I mention him (often) here. The thing is, it would be sort of hard to NOT write about him because he is one the biggest parts of my life along with my girls and now of course, my MS.

He replied that he didn't mind as long as I didn't write something that he could sue me for. That does narrow it down a little (kidding) but it was a relief to know that he is OK with being one of the stars in the blog drama that is my life.

It took until I was almost 40 (yikes) to meet this lovely man and how we met is quite a story, which I would like to share with you today. It was going to be my Mum's 60th birthday and she asked if I would fly over to Florida (where she lives) so that I would be there to help celebrate.

As I boarded the Virgin flight at Heathrow and walked along the aisle I noticed a rather handsome man sitting in what I believed to be my seat. I asked him if maybe he had made a mistake but he insisted that no, the aisle seat was his and the other seat (window) was mine. I was quite happy about this as I hate the aisle seat. Win!

I fly quite often and would consider myself somewhat anti-social on a plane. You see in the past I have made the mistake of opening a conversation with someone who then just WOULD. NOT. SHUT. UP. I have learned my lesson and usually just say hello, open my book and ignore.

As we sat there waiting to take off somebody yelled at someone else a few rows in front of us. It wasn't immediately obvious if they were messing around or if an argument was about to start. It soon became apparent that they knew each other and were simply having a laugh. My fellow traveller (Phil) and I looked at each other with raised eyebrows as if to share a "phew" that it was nothing serious.

The flight attendants then started their usual safety drill showing us how to fasten a life jacket etc. and then the person doing the talking over the speaker system said something along the lines of "and once leaving the aircraft run as fast as you can to get away". Phil and I looked at each other in surprise (he is also a frequent flyer) and I said "Did I hear that right?" he replied "Yes, they don't usually say that do they?" to which I answered with laughter "No".

So from that point on we both DID. NOT. SHUT. UP. We shared wine, stories about our lives and families, Phil suggested a movie that he heard was quite good that we watched together (it was quite rude, didn't he realise I am a lady?), we basically laughed the whole time. We got a few dirty looks from a lady sitting across the aisle from us but to be honest her two little boys were dressed in suits with bow ties so who cares what SHE thought, poor kids dressed like that for a nine hour flight! I hope we made her flight as uncomfortable as she had for her children. Looking back, with three (or was it four?) glasses of wine in us, we were probably annoying to people sat close by.

I felt an instant connection with Phil, like I had known him forever. It was one of those situations when someone tells you they like something and you think "no way, me too and nobody else I know likes that". We seemed to just "fit" and I was delighted when he handed me his business card for if I ever "fancied going out for a drink" when we both got home.

I think Fate meant for us to meet as I usually fly British Airways (not any more) but they had no seats so my Mum booked me on to Virgin Atlantic. She assigned me a seat but when I went online to see where it was it was right by the toilets (ewww, toilet smell for nine hours? No thanks) so I decided to change it. There was literally only one seat left open, 37K. It wasn't a great seat in as much as I thought it was an aisle seat (I have been corrected on this point many, many, many times) but it was at least away from the loos so I took it. The Universe wanted me to sit next to my Mr. Right. Thank you Universe!

So, as they say, the rest is history. We have, like most couples, had our ups and downs but they say you find out the true colours of someone when you really need them and boy has Phil stepped up to the plate with all of his support since I haven't been well. It mustn't be easy for him and yet he hasn't complained once. He has been with me at every doctor appointment, he has been on the MS websites to get knowledge and has just been a complete rock.

When I first got diagnosed I told him that I would understand if he couldn't handle this, that I knew that this is not what he had signed up for. He look at me straight and asked "are you giving me an out?" I replied that yes, I suppose I was to which he said "You're an ass". He was insulted. I completely underestimated him and it made him angry. It wasn't my intention, I just didn't want to be a burden.

There have been times when I have been sad and angry, taken out my frustrations on him and the rest of the family and yet they haven't once held it against me (not to my face at least, maybe they have "what a bitch" parties behind my back). I won't ever really be able to put into words not only how much I love my man but also how much his continued love and support means to me. I am a lucky, LUCKY girl.

So enough about me, how are YOU?

Miss Sexy

2012-02-01T00:21:00.000-08:00

Good Morning Bleeps.

The title of today's blog (and in my banner) makes light of MS standing for Miss Sexy. My good friend Jo came up with that when I was diagnosed to make me smile and it worked.

I was recently asked by shift.ms if I wanted to guest blog for them, which of course I said yes to but then I thought to myself "oh wait, that's the community for young people with ms" quickly followed by "Oh what the heck, I am still young" (I dare you to disagree, I have CAP LOCKS and I'm not afraid to use them!) so here I am.

So how do we view ourselves once we get diagnosed with MS or indeed any chronic illness? I have talked about how other people view us when we are diagnosed but I am wondering if it changes how we see ourselves?

I am quite a vain person in as much as I like to look my best at all times. Now don't get me wrong, I am not one of those women whose partner has never seen them without make-up, hair in a pony tail or even the occasional leg stubble. However, I won't go out of the front door without my under-eye concealer (all hail Clinique) and mascara (oh ok, and lippy!) because let's face it, that will be the one time that I run into everyone I know. I take pride in how I dress and up until I got sick would be at the gym (or outside running) up to five times a week. My nails are always done and I get my hair coloured the SECOND I get roots. Grey? What grey?!

So what has changed since I was bowled over by this monster? The most obvious is that I don't have the energy (or co-ordination) to exercise right now. I feel like I am losing muscle tone and I have gained weight, it might only be 7lbs but for someone who starts each day by getting on the scale this is a big deal.

I guess I have become a bit of an emotional eater too so combine face-stuffing with sofa-sitting and I am starting to feel like a bit of a sloth. That's not very sexy is it?

I guess another concern is that I want my lovely partner to still look at me and think "phwoar". I know that he loves me but it is important to me that he still thinks I am sexy. We have talked about this and he (quite rightly) has asked "when have I made you feel like I didn't think you were still sexy?" He is right. He hasn't changed towards me at all, it is ME that has changed towards me. It is MY fear. I worry that one day he will look at me and think "this isn't the sexpot I met (humour me here will you), this woman can't keep up. I am not talking about swinging from the chandeliers sort of keeping up and let's face it, who the heck has chandeliers anyway? Also, if you did, why would you swing from them? Never did understand that saying.

I told him that I don't feel very attractive right now, that I have gained weight and it makes me feel insecure and plus, let's face it, MS is NOT sexy. I understand the "in sickness and in health" part of relationships but we are not married so he is not contractually obligated to love me in sickness, it would just make him a big fat meanie head if he didn't. The truth is that Phil has been there for me every day, loving me and supporting me and so I have no valid reason for feeling like this other than what is in my own head. My inner demons once again chipping away at my self esteem.

So how do I navigate the way I see myself now that I am unable to do some of the things (for now) that I used to do, like run? This is something that I miss, going to the gym with Phil. It was a thing we did together and it makes me sad when I see him go off to work out on his own.

I sit and question, have I lost the "old me"? Will she ever come back or do I just need to get to know the new and "improved" me? I am still a young woman (again, I dare you!) and I always said I would never "let myself go" and I guess in some ways that is where my insecurities are coming from, the worry that the fact that I am not working out and that I have gained weight could be perceived as letting myself go. I guess that is what my negative mind-speak is saying. So, how can I fight against these inner demons? How do I start to see myself as Miss Sexy rather than Miserable Sausage? I guess this is another thing that I will have to learn as I go, to adjust and learn to like the new me. If any of you MSers already have the secret to this, answers on a postcard please!

So enough about me, how are YOU?

How Many Spoons Do You Have Today?

2012-01-31T02:03:00.000-08:00

Good Morning Bleeps.

It is freezing here in the South East of England today. I am snuggled in my fluffy white robe on the sofa (not like me, is it?) and I just can't warm up. It's times like this I wish I had some thermals. I have woken up with "heavy as a hippo" legs again today. Actually I had them in the middle of the night too, I lay there in bed with legs so heavy that they felt like they would go through the mattress. Those invisible aliens sitting on me again, cheeky gits!

Actually what woke me up in the middle of the night was the fact that the bedroom was like the Antarctic. You see my sister, Diane, told me about a Dr. Oz who was on a US morning talk show speaking about how to help insomnia. One of the tips was to have the bedroom cold and so I decided to open all of the windows. The thing is, it dropped below freezing and since we overlook the sea it got bitterly cold in the bedroom. Not even snuggling under the duvet was enough to keep warm but it was too cold outside the covers that I couldn't face getting out of bed to close the windows (come on, most us have been there, don't judge). It is safe to say I wasn't very popular with Phil, in fact his exact words this morning were something along the lines of "It's bloody freezing in here, I hate you". A bit harsh, ha ha!

So I am sitting here with my second cup of coffee of the morning trying to warm up and also trying to ignore my dizzy head and left eye pain. After my freaky episode last week of going blind I get nervous when my eye starts to go funky now. I really hope that was a one off but every time it starts to feel weird, I get nervous.

Anyway enough about what ails me today, I wanted to share something with you that I read yesterday. One of the most useful websites that I have found since being diagnosed (well, actually it helped me to recognise some symptoms before my diagnosis) is the MSRC (Multiple Sclerosis Resource Centre). I follow them on Twitter and Facebook (blimey, I sound like a stalker now) and yesterday they Tweeted a link to a story called The Spoon Theory. I decided to check it out.

The Spoon Theory, written by Christine Miserandino, is a great way to explain to someone what it is like living with an invisible illness. It is written so beautifully and to summarise, Christine talks about going out to dinner with a friend who asks what it is like having Lupus, another chronic illness. She explains it to her friend by having her collect all the spoons on the table. Each spoon represents a unit of energy that people with a chronic illness start the day with. She then goes on to talk through a typical day and has her friend hand over a spoon for each task, from getting out of bed to choosing what to wear. By the end of the hypothetical day she is left with only one spoon but has yet to eat. If she uses that spoon to cook dinner she doesn't have a spoon left to wash dishes or do anything else that evening and if she uses it to go out to eat she might not have a spoon left to get home.

I thought it was a lovely way to try to explain it to someone who doesn't have to think about what they can or can't do on a day-to-day basis. I am sure a lot of MSers will already be familiar with it but if not check it out, it really hit home for me.

This morning I don't have as many spoons as I would like but I am feeling quite positive. Sure, I could feel better physically but I could also feel worse (hey Universe, that wasn't a challenge). I was supposed to see a friend today but had to cancel as I simply don't have enough spoons. She also has a chronic illness and so she totally understood, which is lovely because sometimes you feel like you are making excuses when you have to cancel plans. It is nice to know she doesn't think that and that she really "gets" it although it sucks that she gets it because I hate that she struggles with her illness (Sjogren Syndrome).

Before I leave you today I just wanted to thank a reader called Ems, who made my day with her lovely comment yesterday. She wrote that "It is so great to hear someone else express so well how MS feels on a day-to-day basis. Although you think you are being negative you are actually being a real help to people like me who need to know others are going through the same things." Thank you Ems, that comment actually brought tears to my eyes.

Sometimes I sit here blogging away and thinking to myself "Bloody hell Karen, you sound like a miserable cow again" and so it is nice to know that sometimes people can relate, it means a lot!

So enough about me, how are YOU?

Speak No Evil

2012-01-30T01:45:00.000-08:00

Good Morning Bleeps.

Monday again, already? Where do the weekends go? Yesterday, as you may have read, I woke up feeling squiffy. My face was numb and my left arm had been taken over by aliens who were weighing it down and zapping it with electric currents, pins and needles. I decided to ignore it and just enjoy the day as much as possible.

I have mentioned that I am conscious of not talking about how I am feeling all of the time, that I am worried my family will get fed up with hearing it. The response I got from this was very supportive with comments (on Facebook) such as "I know the feeling of not wanting to talk about how you're feeling or wanting to harass others with it, but I do think it's the best thing you can do for your mental health. Anyone that truly loves you will understand that you need to vent and will deal with their own frustrations."

My sister also commented that "the people that love you will be here to support you and want you to vent to them. This is our journey together. You are never alone. Love you" (love you too sis). These comments and the support I have had from friends and family mean so much to me. I am not sure how other MSers feel about this? How do they balance the need to share and offload with not being a burden to their family and friends? Without making people want to say "we get it, now shut the heck up"?

Lately there have been times that I have mentioned not feeling well to the response of a blank stare, no response or a bog standard reply of "that's not good". At that point I feel like a jerk and slightly embarrassed and immediately wish I hadn't said anything. I don't blame anyone for this, how bloody boring must I sound and how many times do I have to let people know how tired I am or how much part a, b or c of my body is tingling, numb, hurting or heavy? What do I expect them to say? Do?

The reality is as much as feeling like this sucks, I have so much to be grateful for. I am in a happy relationship with a lovely man and my children are healthy and happy. I have a wonderful family and I have caring friends (some great new ones that I have met as a result of this invisible monster). We have a roof over our heads and food in the cupboard. I work for myself and I play by my own rules, I am blessed and I know this. I like to think of myself as a glass half full person and I guess this is why being stuck in this rut of negativity (and I do feel a bit stuck) isn't sitting well with me. I am not happy with who I am at the moment and I resent my body and the way I feel most days.

Take yesterday for example, even though I felt awful when I woke up, I was determined that I was just going to get on with it. I drove to collect my daughter from a friend's house, went to the store and bought food, came home and made bacon sandwiches and then went on to peel a billion vegetables (ok, maybe only a million) and cooked a roast.

Phil left at about four to take his daugher home (about 4.5 hour round trip) and I flaked on the sofa watching Friends re-runs with two of my girls. It got to about six o'clock and I completely hit a wall. I felt like I had been hit by a truck, I was exhausted.

I wondered if maybe I was tired because I had been sitting still too long. You hear all of the time people saying things like "I am so tired and yet I haven't done anything" and so I decided to do some housework to see if I could "perk" myself up. I cleaned the kitchen, vacuumed the carpets and basically made the house sparkly clean (with candles lit and everything). After an hour or so of playing Mrs Mopp I sat back down with a glass of wine and all of a sudden my legs started to burn like you wouldn't believe. They felt heavy as though filled with wet sand and the ants were back crawling up and down under my skin. I felt so nauseas that I thought I was going to throw up and I was just exhausted. I wanted to cry.

My body was letting me know that I had overdone it. Just regular household stuff is now over-doing it? That sucks. I vented on one of my MS support group message boards about how I was feeling, hoping that I would "get it all out" before Phil came home. Of course I did tell him how I was feeling but then felt pathetic and weak for not being able to keep it to myself.

Later on, as we cuddled up in bed, Phil commented that I was being a fidget and asked was I not comfortable? I told him I was fine but I wasn't fine at all. My arms were dead weights and my fingers were throbbing with intense tingles, like they each had an electrode attached to them and were being zapped in time with my pulse. I just didn't want to bore him (or myself) with saying it out loud.

Today my legs are KILLING me. Did you ever get "growing pains" as a kid? Imagine that times ten. They are throbbing and feel heavy. I have a lot to do today but luckily it is graphic design / brochure work so I don't have to get off the couch too much until the school run later (oh, and take a shower in there somewhere too).

So today I am venting about how I am feeling here (you can click off, my family can't) but I really am going to try to not burden my loved ones too much. Hopefully by the time they all get home I will be feeling better and so when I tell them that I am fine, I will mean it!

So enough about me, how are YOU?

A Rude Awakening

2012-01-29T02:34:00.000-08:00

Good Morning Bleeps.

I hope you all are having a lovely Sunday (or indeed whatever day it is that you are reading this). I woke up this morning from a nightmare. Was I being chased by a mass murderer of falling off a cliff? Nope, I was being told that I was no longer allowed to see my Neurologist because I had missed an appointment. Doesn't sound like much of a nightmare but it was really stressful as I was crying and begging, trying to explain that I need help (and treatment) and they can't just send me away.

I know where this is stemming from. When I saw my Neuro on Jan 12th he told me that although the MRI showed lesions on my brain, he wanted to send me for a lumbar puncture as well as another MRI on my spine and an EVP test. He called the LP unit as I sat in front of him and was advised that there were only fifteen people on the waiting list so I should be seen in two to three weeks.

I have to admit that I am really nervous about this test. I know people have told me that it really isn't bad and that it isn't the scary experience that many would have you believe but I am the woman who had three of my four babies with no drugs. No epidural for me and not because I am some sort of wonder woman (although I bet I would look great in the costume) but because I am scared stiff of the idea of a needle anywhere near my spine. Yikes!

I did have my fourth little Angel (don't care that she is twelve now, she is still my little 5lb newborn in my eyes) by caesarean so I had to have the spinal block then but all cared about was the health of my baby, my own fear didn't come into it.

Anyway, I have had letters for all of my tests (MRI, EVP, Cardio Stress Test, Heart Monitor) and yet the one that I expected first hasn't arrived. In my dream the hospital called me to say that because I had pulled a "no show" for the lumbar puncture test that they had removed me from the Neuro's list. I was trying to explain to them that I never got the appointment. I was crying and pleading but the receptionist was a complete cow-bag and refused to believe me.

I woke up with the feeling of frustration and despair. It would seem that my MS is following me into my dreams. I think that as much as I am not in a hurry to have this done, I will phone my Neuro's secretary tomorrow and just make sure there hasn't been a blip in the system.

Today my face is driving me crazy with the numbness and my left arm feels heavy and weird, like it isn't part of my body. I am putting on a brave face and am about to make bacon sandwiches for breakfast. The family don't need to hear "yet again" how I am feeling. I am sure they must be getting as fed up of hearing it as I am of saying it.

So enough about me, how are YOU?

Run Forest, Run!

2012-01-28T01:50:00.000-08:00

Good Morning Bleeps.

For those of you that knew me in school I am sure that you must find it quite amusing that I like to run. You see it was usually me that came in last in cross country at school. I remember one time it was foggy and I actually got lost and crossed the "finish line" over an hour later than my classmates. The teacher was less than impressed.

In my twenties I lived in Florida and discovered a passion for fitness. I trained hard and finally qualified as a fitness instructor. I spent my days on the beach topping up my tan and my evenings in the gym teaching step aerobics and providing personal training. Life was good.

I moved back to England in my mid-twenties (not through choice) and fell off the exercise wagon. I had my little spurts of "I'm going to get fit again" but I basically got really lazy.

Fast forward a few (ahem, ok fourteen) years and I met Phil. He told me how he was training for his first marathon, I was impressed! I was inspired by this and went out and got myself a pair of running shoes. The first time I hit the pavement was a little bit embarrassing because I walked more than I ran but I was determined to continue. I built up my fitness gradually and before long I was a runner. Not a fast runner but a runner none the less.

New York Marathon, November 2009

I went to New York with Phil in the November and watched him with complete admiration as he crossed the finish line. I almost burst with pride, seeing him reach the goal that he had trained so hard for. He didn't let his knee injury stop him, he was determined and it paid off. I sat in the bleachers and when I got my first glimpse of him I couldn't stop smiling. The atmosphere was amazing and I decided that next year it would be me crossing that line, I wanted to train hard and achieve something as amazing as running a marathon.

I started to train and got my entry place but I was plagued with injury. During the BUPA 10K run in London I pulled my calf muscle at the 3K marker. Phil said we should stop because he could see I was in pain but I was determined to finish (I wanted that medal) and so I finally completed the run (by limping) in just over an hour. I was disappointed with my time but proud of myself that I hadn't given in.

I decided that if I was going to train for a marathon then I probably needed some professional help. I got myself a personal trainer but all he did was tell me how running was bad for me, how I shouldn't do it etc. It was not the kind of "encouragement" that I needed when I already had voices in my head full of negativity after my 10K "disaster". I stopped working with him and found myself a new PT. She was great because she was a runner herself. She told me that as my PT she should advise me to not train for the marathon (by this point I had pulled my calf and my hamstring muscle) but as a fellow runner she understood my need to see it through.

BUPA 10K, London 2010

It would seem that every time I recovered from one injury, I got another and so I decided to go for my longest run yet and it was going to be my deciding run. If I reached my goal of 13 miles (a half marathon) then I would go for it and continue to train. At around 8 miles I pulled my groin, fate had decided.

I always remember sitting in the sauna at the gym with Phil and he said "maybe you should just accept that perhaps you are not a runner". I think the look I gave him must have shown that I was trying to not kill him and he quickly rephrased his sentence to how he actually meant it and that was as much as I wanted to run a marathon and my head was in the right place, my body was telling me no.

From that point I just used running as a way to keep fit, staying around 6K on the treadmill and mixing it up with weights and other equipment.

Since becoming ill in November I haven't done any exercise at all. I live in a four story town house (by the sea, very lovely) and just walking up and down the stairs exhausts me these days. I miss going to the gym and continue to pay my membership in the hopes that I will get my energy back and will be able to go back and pound the treadmill. I miss the rush of endorphins that you get after a kick-butt session in the gym. I miss the gentle ache in my muscles that tell me I worked them hard, completely different from the ache I feel in my body these days.

I hate that my life seems to be on hold or is at least dependent on how I feel from day-to-day. I want my life back. I want control back. I resent this illness that seems to change from day to day, hour to hour. I resent that there isn't a magic pill to make it go away. Growing up we are taught that when we are sick, we go to the doctor, find out what is wrong and then they make you better. I want to be better. Where is my prescription?

I WILL get back to the gym, I just need to listen to my body and right now my body is saying "get back on the sofa woman", I better listen!

So enough about me, how are YOU?

TGIF

2012-01-27T04:51:00.000-08:00

Good morning Bleeps.

When I started this blog it was to just document and talk about my MS journey but it has become much more than just about my illness, it has become a way for me to talk about my life as a whole. I hope that it gives you more insight into this awful disease and at the same time you are enjoying sharing my life as I am enjoying sharing it with you.

It has been a very sad week with the loss of Ronny and then I got the sad news that a lovely lady I know lost her baby yesterday. Why is the world so cruel at times?

I feel so sad for her and her husband and once again I am reminded by the fragile nature of life. I ask that you send a prayer (or whatever you believe in) out into the universe to help heal their broken hearts. I feel so very sorry for them.

This week has been a bad MS week too, what with going blind and feeling terrible most of the time but today I have woken up with minimal symptoms (just a numb face at the moment), so I am grateful for this while it lasts.

I have had a lot of grief from my ex husband too this week, which has been very stressful. As we MSers know, stress is not good for symptoms. I sadly can't just wipe him out of my life as we share children but wouldn't it be nice if it was that easy? The hardest thing for me as a mother is seeing how his controlling behaviour makes my daughter cry. Sadly there is no reasoning with him and I feel my symptoms getting worse as the abusive text messages escalate, so I have to just stop responding and trying to reason with him for the sake of my health. It is frustrating and I am at a loss how to handle the situation.

As this week draws to a close, I want to thank you for reading my blog, which hit over 5200 views yesterday. I am quite overwhelmed by the love and support from both MSers and also people who know someone with MS who have commented that the blog has helped them in some way, even if by just knowing they are not alone. I am happy and feel honoured to have you along with me for the ride.

One lady wrote that my blog "helped her to understand what her Dad goes through". I am truly, deeply touched when I read things like that. Having MS sucks at the very highest level but it has also introduced me to some lovely new friends and for that I am grateful. I hope you all have a great weekend with minimal (or no) symptoms for my fellow MSers, surrounded by people that you love.

So enough about me, how are YOU?

The Kaleidoscope

2012-01-26T02:12:00.000-08:00

Morning Bleeps.

If you caught yesterday's blog you will be aware that I was already struggling with fatigue (and a sprinkling of self pity). I had work to do but yet struggled to get off the couch and into the shower before Noon, it was definitely a bad day.

When I asked the Universe if the day could get worse, I don't think it realised that it was a rhetorical question and it decided to answer with a resounding YES!

I have had visual disturbances for a few years now. I have been to get my eyes checked and explained to the optician what is going on but my eye tests have always been ok. The only thing that my last one showed was that I had Diplopia, caused by impaired function of the extraocular muscles. This basically means that whilst both of my eyes are still functional they struggle to converge to target the desired object. Basically, lazy muscles resulting in blurred or double vision. From my research I understand that it can be an early symptom of MS without people realising it.

Phil sometimes tells me off because I don't wear the glasses that the Optician prescribed but you see, they don't really help and to be honest the pressure on the bridge of my nose (even though they are super light) gives me a bit of a headache. I explained this to him (again) the other day but got a reply of "yes but they make you look like a sexy secretary". Now I see why he nags, oh, and no secretary for him at his office in the future unless vetted for an appropriate amount of ugly and non-sexy by me! Ha!

Another problem I get with my eyes is pain. Mainly my left eye, it feels like someone is literally squeezing my eyeball from behind although I get some light relief if I push back on it (sounds gross but it does help).

This has been it as far as visual disturbance up to this point. Sometimes painful, sometimes disconcerting but never debilitating. Until Yesterday, thanks Universe!

I was on my laptop when I realised that as I was typing words, I was only able to see some of the letters from each word. Literally my sentences were looking like this: w y the he k am I l ing le te s? (why the heck am I losing letters?)

I squeezed my eyes shut, shook my head and when I opened them expected for all the letters to be back again. Nope. Try again. No, sight still squiffy and messed up.

OK, deep breath, don't panic.

Then slowly but surely the most peculiar thing started to happen. I will try to explain it in the best way I can but since I am still trying to make sense of it myself I might struggle. Do you remember playing with those kaleidoscope toys as a child? Where you look down the tube and twist the end and all the coloured beads would turn and change shape? Now imagine there was no colour but instead really bright, white lights spinning really fast around the perimeter of your vision. That is what was happening to me.

I could sort of see through the middle of it but not enough to able to function. The short video below is the closest thing I can find to almost describe what was happening, although there were no dark (black) colours, it was just all bright, white light.

After a while I lost the plot and called Phil in floods of tears, asking him to pick the girls up from school as there was no way I could drive. I can admit with no shame that I was panicking. I know that visual disturbances are all part of MS but this was the first time that I was having a symptom that was stopping me in my tracks. Phil comforted me over the phone, told me to close the curtains, shut my eyes and try to calm down. I was sobbing "but I can't see". He reasurred me "it will be ok, just try to relax and I will be home soon".

I took a deep breath, closed the curtain and lay down in the darkness willing for it to go away. I called my sister crying and feel terrible that I made her cry too. I feel bad about that as she is dealing with the loss of a very close loved-one and doesn't need psycho-sister freaking out down the phone. Sorry sis!

It didn't last very long thankfully and my vision slowly returned leaving in it's wake a headache and usual throbbing of my left eye but nothing I couldn't handle.

I am hoping that it was a one off experience as it was scary as hell. Honestly, I take most things on the chin (I might moan or complain as we all know by now) but this had me once again questioning why my body is rebelling in this way. What ELSE was happening in my brain yesterday? Was it a new lesion happening or just one of the old ones "acting out"?

I feel like my body is a school and my symptoms are the students. It seems that just when I think I have called the register (role call) on all my symptoms and they appear to be present and correct, a new kid joins the class. Well thanks body but this class is FULL. No more symptoms allowed thank you very much. Hopefully the eyeball kaleidoscope was just an "exchange student" and has gone back to wherever it came from (for good).

So enough about me, how are YOU?

Bleeping Fatigue

2012-01-25T02:11:00.000-08:00

Morning Bleeps. Bleeps? Peeps that blog, like it?

If you have come here today hoping to be lifted up with a silly anecdote or embarrassing story then sadly I am letting you down because I am feeling totally hacked off.

I am so tired and yet I have slept through the night four nights in a row, a minor miracle for this insomniac. I should be refreshed, with a spring in my step but it would seem that my "get up and go" got up and went. What is left behind is someone that resembles a hot mess in a bathrobe, sitting on the sofa trying to build up enough oomph to shower ... again. This is getting OLD!

I have some design work to do today, which is good as business sucks right now. I love running my own business and being able to work from home but the downside right now is that the economy has hit hard. The first thing people seem to cut back on is advertising, brochures and websites (I get that rent needs to be paid but you also have to advertise and keep trying to get business people!) and so it makes it so hard to survive right now. The end result is a seriously overdrawn bank account and no apparent light at the end of the tunnel.

The problem is that I literally do not have the energy to be as pro-active as I need to be. It is making me nervous because the reality is that I need to figure out how I balance feeling like crap every day with getting new clients and keeping my business afloat. How do people with MS run marathons when I don't have the energy to run to the front door when the postman comes?

Thankfully I have my loyal clients who are amazing and are totally supportive and I appreciate them so much. It isn't working with existing clients that I am struggling with, it is trying to get "out there" and gain new accounts that I can't handle right now. I have no "fight" in me and it is a competitive market, I need to fight for new clients.

I'd like to digress here for a second to tell you something that happened with a client yesterday. This lovely client sent me an email asking if I got her web updates done from the day before. I replied that I did it right away when she emailed me (I'm good like that ha ha), had she refreshed her computer? I felt really bad when she replied that she had been expecting my usual "all done" email. Bloody cognitive issues I thought to myself, I was sure I had emailed her. I apologised for my brain fog.

Luckily she knows about my MS and she was totally understanding, as she always is. About an hour later I was looking through my sent emails looking for something else when I came across the email that sure enough, I had sent the day before. I forwarded it to her, saying that I thought I was going mad but relieved to know I hadn't imagined sending the email. She hadn't received it and apologised for making me feel like I was going crazy, she then asked if she "made tomorrows blog". So here you are Victoria, you made it and for the record I appreciate your business and your support.

I am drinking cup after cup of coffee to the point where I feel like if I was to cut myself open it would be coffee that came out of my veins instead of blood and yet I am not at feeling "caffeinated" enough to deal with my day. I think this is one of the hardest things to deal with, the mind-numbing, body-crushing fatigue.

When you try to explain MS fatigue to a non MSer you get the "oh yes, I get tired too" sort of response. This is literally debilitating. I know I have talked about it before and no doubt I will talk about it again because it is so hard to explain. This isn't just tired, I literally feel like I want to curl into a ball and not move. Blinking takes effort today. My body feels heavy, like it is being weighed down by an invisible force.

Anyhooo Bleeps, that's me for today, cheery cow aren't I? I am broke, fed up and have no energy to do anything about it. For the first time in years I have no holidays booked and no money to make plans for one (anyone that knows me will tell you how much my drunken, karaoke breaks mean to me). To add insult to injury, I am sitting here and my knees are throbbing and feel crazy hot from inside. Who the heck has throbbing, burning knee caps? Sod off MS, I am not in the mood for you today.

So enough about me, how are YOU?

Remembering Ronny

2012-01-24T00:38:00.000-08:00

Today I am sad.

I am reminded how precious life is and how we should cherish those that we love.

My sister (Diane) and brother-in-law (Robert) said goodbye to a life-long friend yesterday. Ronny was one of my brother-in-law's best friends for over thirty years. Robert met him when he was just a young man and Ronny became a very special friend that would stay very dear to his heart for the rest of his life.

Ronny was my sister's biggest fan. She said that he was "the man I should have married (only because I was always right in his eyes.....even when I was wrong". It's true, she could do no wrong in Ronny's eyes, he would always stick up for her no matter what. He was also intensely proud of her and the children, always talking about them with the sort of pride usually reserved for Fathers or Grandfathers.

Ronny was diagnosed with stage four lung cancer between Thanksgiving and Christmas. It was a shock and devastating news. After a few weeks in the hospital getting treatment, Diane and Robert brought him back to their home in Florida (from Rhode Island) to care for.

Ronald G. Plante (Ronny) 6/20/31-1/23/12

They brought in the New Year all together sat on the bed. In his last few weeks he was surrounded by people that he loved and who loved him so very much, a true tribute to the fact that you don't need to be blood to be family. He was Godfather to my Nephew, their Uncle Na Na and my sisters "Sunshine". She told me how his face would light up when she sang to him.

He sadly lost his battle yesterday with Diane and Robert at his bed side, holding his hands and telling him that they love him.

Ronny was one of life's good people with a wonderful sense of humour. He was the person that my sister and I called from Las Vegas a few years ago, drunk and singing Abba songs down the phone. Even though it was the middle of the night, he never got mad, he just laughed at us and played along. I could tell you many funny stories about this wonderful man but for now I will just say that Ronny will be in the hearts of all of those who had the honour of knowing him. He will be missed.

Rest in peace sweet man.

It Wasn't a Drive, Drive!

2012-01-23T00:51:00.000-08:00

Good morning friends.

I would like to share a funny story with you today, something that I did that I probably won't live down for a while. Even when you can attribute something silly that you do to something serious like MS it can still be ammunition for the family (and in this case, your man) to take the Mickey out of you. This is definitely one of those times.

On Saturday, Phil and I didn't really have any plans and we had a "kid free" day so we wanted to do something to get us out of the house for a while. Since he isn't originally from our lovely, little seaside town (he moved down this way after we met) there are still a lot of local villages and towns that we haven't explored together.

We decided to visit one of them as I had heard it was very quaint and neither one of us had been there. Well, it was a little disappointing (apart from a lovely little tea room where we stuffed our faces) and not much to look at so after an hour or so we got back in the car and started to drive, not really knowing where we were heading to.

I was having a good day (dizzy-wise) so I was in the driving seat and as I was driving along I jokingly asked Phil if the fact that we were "out for a drive" made us officially OLD now. Only old people "go for a drive" I said. He replied with "We are out for a drive, but not a drive drive".

Now I don't know if you guys are familiar with one of my favourite comedians but I started cracking up laughing at this point because I was instantly reminded of Micky Flanagan's stand-up routine of "Out out".

We were out for a drive, but not a drive drive. Ha ha! If you don't know Micky (shock, horror - how could you not?!) then take a minute (OK, just over 2 mins) to enjoy his genius!

Anyway, we were driving along and I asked Phil where he would like to go. He replied that he didn't know the area and so I suggested another little quaint seaside town (Whitstable) that I have been to and is really nice with cosy pubs and cute shops.

Off we went.

When I turned off at an exit, Phil asked where we were going (apparently he had just seen a sign saying it was 9 miles to go) and I replied I was taking him the "scenic route". Since he doesn't know the area that well he had no reason to ask for any more details.

We drove through country lanes for quite a while and then Phil realised that he was on familiar territory, roads that he recognised. It was at that time he asked "so how far to that place we are going?"

I looked at him all confused, "what place?" I asked.

"The place that begins with w"? at this point he looked at me like I had completely lost my marbles.

"What do you mean?" I replied

He looked at me for a second and asked "where are we going?"

"Home" I replied (at this point I was wondering why he was looking at me like he wanted to call the men with the white jackets).

"So, I guess we are not going to that seaside town that you told me about with the pubs and shops?" He asked.

OH. MY. GOODNESS!

I had completely forgotten where we were going. I had for some reason just started driving home, completely not realising that even though it was my suggestion, I had forgotten that we were on our way to Whitstable.

I started cracking up laughing but inside I was thinking "oh crap". I joked that I need to maybe start putting post-it notes in the car to remind myself where I am supposed to be going. How do you just forget where you are going? Especially when it's your own idea, you are en route and you are the driver?

Phil has since joked that he doesn't have to worry about me ending up going out and getting lost because I am like a homing pigeon and I will probably just keep driving home.

So enough about me, how are YOU?

Knock Knock

2012-01-21T02:25:00.000-08:00

Who's there? Haven't got a bloody clue!

Where's she going with this I hear you ask yourself? Well this is what is on my mind today; lately I have been questioning who I am. Not literally of course, not in a " please read my name tag and return me to the mental hospital" kind of not know.

You see, I was recently approached by a student in the medical field who told me that their class was doing a study on MS and could they ask me some questions about what I was going through. For a moment I felt quite special and not in a "I lick windows" sort of way but more like "feel like I'm on Oprah" kind of special.

The questions started and I answered in the most honest way I could. Most of them were quite straight forward and dealt with the practical stuff like diagnosis and how I have been treated in the NHS (can open, worms everywhere!) but one was more personal in a way and this is the one that has stayed with me.

The question was something along the lines of "do you think people look at you differently or have changed how they see you since you have been diagnosed". It was something I hadn't really thought about up to that point but it did make me wonder.

Do people see you differently once you are diagnosed with a chronic illness? I mean, I don't want to be seen as "Karen with MS" or "Karen the sick person". I mean I have always been "Karen, a bit sick in the head" and I can understand that with my sense of humour. My friend Gill calls me "Karen, best boobs in Sandgate" and I am TOTALLY cool with that too (ha ha) but in all seriousness I don't want to be defined by MS. It might be what I have but it is not who I am.

I slept quite well again last night (two nights in a row now, woo-hoo!) although have to admit to feeling a bit muzzy this morning from over-indulging in the liquid grapes again. I know, I know, it's bad for me and I need to drink less but hey it was Friday and besides, you can't tell me what to do, you're not my Mum (I bet my Mum will call to tell me off now).

Having said that, even with the self-induced head fog my MS symptoms are definitely milder today. In fact thinking about it, they were milder yesterday too. Does this mean I am going into remission? Do I get my hopes up?

Will I no longer be "Karen with MS"? Will I soon be "Karen, all better now"? Or is this just how this is going to be? It will come and go, some days worse than others? Some days good, some days not so good? Maybe I am "Karen feeling good today, I'll get back to you tomorrow". Perhaps that is all part of learning how to live with any chronic illness, you take one day at a time and celebrate the good days.

Thinking about it, I think I will just see myself as "Karen with MS (and great boobs) taking one day at a time and appreciating my friends, family and life every single day regardless of how I am feeling". Yes, I like that - let's run with that one!

So enough about me, how are YOU?

Who's Your Daddy?

2012-01-20T01:36:00.000-08:00

Yay, it's FRIDAY!!!

I feel a bit of a fraud being so excited about it really because like I said yesterday, I get to work from home in my PJ's if I wish so it isn't like I have to worry about a horrible train commute or going out in the cold to get to work all week. I don't have a boss breathing over my shoulder, I am very grateful for that!

What I really love about the weekend though is that it means that we get to lay in bed and be lazy for two days in a row. There are no school runs, no reasons to get up early. Phil and I have a deal where Saturday is my turn to make coffee and bring it back to bed and Sunday is his. One Saturday he even convinced me to make a bacon sandwich with the promise that he would do it the next day. He went back on that promise so I won't be falling for that one again!

The best part is that together we watch the Maury show and goof on how outrageous some of the guests are! We actually get disappointed when he does the shows where he brings on exotic animals. I mean, if we wanted to see that then we would go to the zoo. We want to hear "You are NOT the father".

We also crack up at the ones where the "cheater" gets busted by the "sexy decoy" in the green room and still tries to convince his partner (before I get any comments, it is usually the men that fall for a sexy decoy) that he isn't cheating. Even after a lie detector, I mean come ON, where do they get these people?

Does it make us sick in the head that we enjoy this stuff so much? Can I blame my brain lesions? Phil doesn't have any brain lesions, he has no excuse!

As you might be able to tell already from the tone of today's blog, I have woken up feeling GREAT today. Not physically but mentally strong. This is the second day in a row of feeling positive and I am going to try to keep it going.

I will be completely honest I had a little wobble yesterday in the early evening. I had spent most of the day with my fingers in my ears saying "la la la la I can't hear you" to my body tingles and zaps and by about six o'clock I was being worn down and really wanting a glass of wine. You see as soon as I have a glass of wine these physical feelings go away and it is such a relief but then I feel like rubbish the next day if I have too much. As I said to a fellow MSer (also a wine lover), it seems to be a choice between going insane from the mental torture of MS symptoms or risk liver disease. Decisions, decisions!

Anyway, I had two SMALL glasses (probably one pub measure) and that was it. I had the BEST night sleep last night too, which is the first in many months without the help of wine or sleeping tablet. I fell asleep by about 10pm and woke up to the alarm at 6.30. I mean an ACTUAL alarm, on a CLOCK. Not my body alarm that seems to want to kill me every night!

It isn't even 9am and I am up, showered and make-up on. This is the first time in weeks that I have had the energy to shower before noon. I am meeting a lovely friend for coffee this morning (I haven't seen her since August of last year so I am very excited) and I feel like today is going to be a good day.

The ice cube is back in my brain (not literally of course, it's just how I can describe how it feels) and my left eyeball feels like it is being squeezed from behind. I am having pins and needles type tingles in my feet and I am light headed but once again I am NOT going to let it get me down.

I do think my decision to choose to be happy yesterday made a big difference to how my day panned out. I uploaded a few funny photos to my facebook and had some lovely chats with friends (oh, and got some work done too, don't want you to think I just goof around all day). I chose to be happy and the end result was that I felt happy. I made a nice spicy chili for dinner and enjoyed the company of my daughter and her boyfriend.

So for today I will leave you with a "Friday Funny". I think I will try to bring you a "funny" every Friday although I should probably warn you that I can't guarantee that my jokes and funnies won't sometimes be a little "close to the mark" but hey, that's just who I am.

So enough about me, how are YOU?

Today I Am The Pigeon

2012-01-19T01:30:00.000-08:00

Today is going to be a good day, simply because I say so.

I am exhausted this morning from another night of insomnia. It wasn't as bad as usual though as Phil was awake too so we watched "The Running Man" in the middle of the night. It is shocking how bad the selection of TV viewing is at 3am, it's almost as if people are expected to be asleep at that time! It is also shocking how the writers thought that some of the one-liners in that movie were funny!

Amber: (after Richards cut Buzzsaw in half with a chain saw) "What happened to Buzzsaw?"
Ben Richards: (Arnie) "He had to split."

Really?! Ha ha! You just have to love those 80's movies.

I also have to confess to being a little hung over too as that one glass of wine that I had planned with my Indian meal turned into three (ok, ok four), oops! So even though I have a fuzzy head and am very tired I have decided that today I CHOOSE to be happy.

When you have a chronic illness one of the things that you don't want to hear is that it "could be worse". Even though the person that says it is usually well meaning, it makes you want to high five them, in the face, with a chair (I have to admit to seeing that "high five" saying somewhere but it made me chuckle and I can relate so I have borrowed it to make my point)!

However, the reality is that it COULD be worse.

I have a lot to be grateful for. I am head-over-heels with an amazing man who has been by my side every step of the way with 100% support. He makes me laugh and is the most caring, loving man I have ever known (and on top of that he has a really nice bum). My children are healthy, happy and fill my heart with pride and joy. I have the love and support of my family (in particular the best sister in the world) and I am surrounded by wonderful friends (both new and old).

I am lucky that I get to run my own business and work from home. I can do this in my pyjamas if I want to and even (with my laptop in front of me) watch the Jeremy Kyle show at the same time. If THAT show doesn't make you feel good about your life then nothing will!

Yes my body is going through a little rebellious stage, so what? I won't let it get to me today.

I am going to ignore the numbness, tingles and zingers in my body. I will say to them (in my head, don't want to look like the crazy lady talking to herself) "you are not going to get me down today, I am going to pretend you are not there".

If I get tired this afternoon after I get my work done then I will allow myself to rest without feeling guilty. I am going to count my blessings today rather than worry about or focus on what ails me.

Life is good and so I will smile and focus on what is positive in my world. Today I am the pigeon.

So enough about me, how are YOU?

Back On The Emotional Roller Coaster

2012-01-18T01:43:00.000-08:00

Yesterday was rough. I am not going to lie. I cried ... a LOT! My poor sister took the brunt of my emotional overload on the phone. Even though we live over 4000 miles apart, she and I are super close and speak on the phone most days.

She has a lot going on in her life at the moment, things that would break most people and yet she is always there to listen to me. I will never be able to put into words what she means to me or how much I love her. She is such a special gift in my life, she is my biggest supporter and is always on my side. Poor thing probably regretted asking that dreaded question "How are you feeling today?"

I was having one of those days where I was feeling extremely sorry for myself. I was working on only a couple of hours of sleep and I felt dizzy, exhausted, tingly and numb. I was back on the emotional roller-coaster that is MS.

Since doing my research into my symptoms (both pre and post diagnosis) I have joined many MS groups looking for information about the disease, as well as possible treatment options. I have been very lucky and have met lots of new friends and they too have been a great source of support and advice as I struggle to come to terms and adjust to my feelings, both physical and emotional.

Some MSers that I have become friends with are further along the path of being diagnosed and have learned how to manage their day-to-day "stuff". Others are more like me, still riding the ride of emotions from day-to-day and fumbling around trying to adjust. One of these lovely ladies was offering me support yesterday and I told her that my blog was going to be so depressing at this rate and that I might not bother, I don't want to bring people down. She replied "but it's just the truth of MS. People with the illness will be able to relate".

I got through my day and decided to "snap out" of the funk I was in. I prepared a meal made from a new recipe and pushed all the negative thoughts to the back of my mind so that I could enjoy the evening with Phil and my girls.

However, the only way I can describe my evening as I sat watching TV is psychological torture. It was like there was an electrical storm inside my body. Tingling in my legs, electric type zaps in my fingers and toes, a numb face (complete with tingling lips and tongue) and the return of the ice-cube in my brain. I so badly wanted to neck a couple of glasses of Pinot Grigio to dull these senses but I was determined not to. I don't think the cure to MS is at the bottom of a bottle!

Sometimes this feels like a nightmare that I can't wake up from. I want to wake up! I want to make plans and look forward to them without the immediate thought entering my mind of "but what if I don't feel good on that day". Phil and I were watching a TV show and someone was talking about his trip to Vegas. Phil and I have both been to Vegas but never together, he looked at me and said "we should go to Vegas, we would have a wild time". We WOULD have a wild time because we both like to party but then the little voice in my head said "but what if you couldn't handle it, what if you didn't feel good and ruined the whole trip?" SOD OFF voice in my head, always bringing me down lately.

Last night I couldn't fall asleep so I took a sleeping tablet. I lay in bed willing my body to "switch off" so that I could sleep. Finally the tablet did work its magic and I drifted off, sleeping right the way through until 7am.

This morning I have a sleeping pill "hangover" and my body is zippy-zappy as always. I won't let it drag me down today however because it is "Date Night" with my man and I have a lovely Indian meal to look forward to. I might even have ONE glass of wine.

So enough about me, how are YOU?

Have A Heart

2012-01-17T02:05:00.000-08:00

When I went to my Doctor back in October and had my "you HAVE to help me" meltdown, one of the symptoms I told him about was chest pain and the inability to get enough air into my lungs.

He put me on an ECG monitor, which showed a slight abnormality and it was at that time that he referred me to both a Neurologist (for the other symptoms) and a Cardiologist.

As you may know (if you read my first blog) I paid privately to see the Neuro because I didn't want to wait the three months for an appointment but I waited for the Cardiologist as my gut instinct was that whatever is going on with me was not a heart issue.

I have continued to get the chest pains and shortness of breath but I believe them to be MS Hugs. I asked my Neurologist about this and he seemed reluctant to attribute these symptoms to MS and advised me to keep my Cardio appointment anyway.

I went along to see the Cardiologist yesterday and he did another ECG, which again showed the slight abnormality. I then asked him his opinion about the kind of chest pain I get and he said that his gut instinct was that the issues I am having are NOT cardiac but he wants to be careful anyway.

I do have high blood pressure and heart disease runs riot in my family on my paternal side so because of this he said he wants to check me over a bit closer than he would "the next person" just to be on the safe side.

He has ordered that I wear an ECG monitor for a week (24 hours a day) and also do a stress test, where they stick you on a treadmill and monitor your heart under exertion.

Now, the 24 hour a day monitoring is a bit daunting because ummmm, well, how do I put this? Slightly embarrassing but will I have to explain myself when it shows times that my heart rate increased? If so, Phil is out of luck for a week! Or, do I just take off the monitor and say what? My heart stopped beating for while? I need to think that one through. ;)

Also another concern is how the heck and I going to do the stress test? I have had one of these before and it was a breeze. I was fit back then and had no symptoms so no big deal, jump on the treadmill and keep up while they make it go faster and faster. I have NO energy right now. None, zip, nada.

I am hoping that the NHS is it's usual self and the appointment takes weeks to come through by which time I will hopefully be feeling better and more up for the job.

Wishful thinking?

So enough about me, how are YOU?

Time To Get Busy

2012-01-16T00:40:00.000-08:00

Morning friends.

I have woken up today with one thing on my mind, getting my accounts up-to-date so that I can get all of my paperwork over to my accountant. I have been procrastinating and now I have a mountain to climb to get it all done so that my tax return can be filed in time. I have been ignoring his phone calls and it is getting slightly embarrassing now. The problem is that I can't remember exactly what he asked me for, you see we spoke on the phone before I started using Post-It notes. Got to love these cognitive issues eh?

I have been so tired and fed up with feeling rubbish that really I have been putting off a lot of things lately. That leads to me laying there in the middle of the night with my usual insomnia, worried and getting knots in my stomach thinking of everything I have to do. They say stress is bad for MS and I am not really helping myself by putting jobs off and letting them build up. I know this but I just haven't figured out how to deal with it better.

I suppose one of the "tricks" I am going to have to learn is how to juggle what needs to be done every day (both from a personal point of view and business) with managing how I am feeling both physically and emotionally.

How do other MSers do this? How do they get up every day and go to work, look after their families and get on with it? Is there a class I can go to? Can they send me some tips please?

I wonder if I had medication for the fatigue, would I have energy to get motivated every day? What if I could get a full night of sleep, would that help?

Also, I wonder how many MSers do a symptoms "check list" when they wake up like I do? Am I dizzy today? No? Cool! Oh wait, there is pressure in my head, is the ice-cube still in my brain? Yup, bloody thing hasn't "melted" yet, bummer! Can I feel my face? No but my lips aren't tingling and I can feel my tongue. Hey, every cloud!

Maybe this is a mental game to learn too. Do you ever stop doing a "check list", does this become the new "normal"?

I see a LOT of coffee being consumed today because I don't think Mr. Tax Man will be as understanding of my condition as my friends and family have been and so I must get done what needs to be done today, regardless of how my head feels.

So enough about me, how are YOU?

Iced Brain

2012-01-15T09:39:00.000-08:00

It is Sunday afternoon and I am sitting on the sofa watching two of my lovely girls do my Zumba workout. They are having a great time, laughing and joking away with each other. I say MY Zumba workout but to be honest I have never even done it. You see it was around the time that I ordered the entire kit that my symptoms all flared up and the most energetic thing I have done since then is start this blog.

I keep waiting to wake up symptom free, is that ever going to happen? I want to Zumba!

Today I have been on pain pills (the strongest over the counter ones available) trying to relieve some of the pressure in my head. It feels like someone literally has my head in a vice grip. It is NOT nice. I have never really been a person who gets a lot of headaches or migraines (in fact I don't think I have ever had a migraine from my experience of friends who suffer with them) and I would rather not start now thanks.

Last night the insomnia kicked in and when I got up to go to the bathroom I noticed a really strange (new) sensation in my head. It was as though somebody had popped an ice cube into my brain. Literally the left side (near the top) of my head had a feeling of being freezing cold and almost wet. It felt weird and more than a little worrying.

When I saw my Neurologist last week he said that he "wasn't worried" about any of my symptoms although he understood that they were "bothersome" to me.

Bothersome? BOTHERSOME? Hey Doc, let me stick that pencil in your eyeball and then tell me if THAT is bothersome (sorry but I do get annoyed when how I feel is minimised by someone that should have more understanding)!!

So, once again I am back on the internet to see if the ice cube in my brain is something typical for MS sufferers and sure enough, the cold and wet sensation seems to be quite common. I think my Google is going to start saying "Oh no, not you again" soon.

I have spoken to so many people who have felt like their Doctor didn't believe them or thought they were exaggerating. It seems to be such a common theme. I am almost at the point where I am not comfortable reporting any of these new symptoms or issues as I don't feel like he wants to hear about another "bothersome" issue. I think that is quite sad really but it just seems to be the way it is.

I truly appreciate all of messages I have received from other MSers sharing their own experiences because it is a reminder that even though it feels like it sometimes, I am not alone in this nightmare journey.

I am determined that I WILL be doing Zumba soon. I just need my friend Caroline to finish the magic fairy dust that she promised me she is working on, which is really nice of her since I would never let her be "Sandy" when we did our version of Grease. I just hope that this new feeling in my head won't be a regular visitor.

So enough about me, how are YOU?

Bottoms Up!

2012-01-14T03:20:00.000-08:00

Yesterday I decided to pick myself up, brush myself off and get on with it (whatever that means). I mean, if the Doctors won't help me then I just have to help myself!

I was speaking to an MSer who has been fighting for an "official" diagnosis for YEARS and has been where I am. Her advice was to find a way to deal with my symptoms without drugs (not that I can get them anyway). She gave me a ton of useful tips and I felt really encouraged by her positive messages of support (thanks Kay).

I am also quite aware that I don't want to be a complete drag where my man is concerned. He met a healthy, happy, FUN woman and not someone who is sick and tired all the time. I don't want him to get sick and tired of me being sick and tired!

I pulled out my skinny jeans with a sexy, low cut top (hey, if you've got it flaunt it right?) and got myself glammed up to go out for a nice Indian meal. Since I got sick I haven't been able to go running and then on top of that we have had Christmas so I have gained a few pounds. I have had people tell me that I needed to and that I was "too skinny" anyway (is there such a thing as too skinny?) but I need to feel good about myself so I have been dieting this week (or at least laying off the pork pies and biscuits).

When Phil came home and asked how I am feeling, I replied "Fabulous". Little white lies don't count in this situation.

We arrived at the Indian and I was given my usual large glass of wine (they don't even ask now, the waiters know us so well that they just bring our drinks) and I slowly sipped on it as I munched on popadoms and looked over the menu. Because I hadn't eaten much during the day the wine went right to my head.

The things is, as soon as I start to feel tipsy I stop feeling tingly. The horrible sensations that seem to constantly run through my body fade away and I feel like my normal self (almost). I am not even bothered by my numb face, all feels right with the world. So one drink led to two, led to three .... you get my point.

I have asked other MSers if they drink alcohol and some do while others can't touch a drop. Much like the disease it seems that it is different for everyone with how their bodies respond to it. I don't feel any worse for drinking usually (and I do like my wine) but let me tell you I was awoken by the most intense electric shock sensations in my finger tips in the middle of night. My arms were going crazy, literally freaking out with tingling and zappy feelings with a whole new level of intensity. I was literally jumping with every shock.

Was my body rebelling? Was it reminding me that ultimately I will have to pay the price for my fun?

I have been reading books about managing MS through diet and healthy lifestyle and I have to be honest, I am not sure if I am up to the job 100%. I have never been one of these people that can throw themselves into what it "good for them", although I have started drinking a "Green Machine" smoothie every day. It has all of my 5-a-day with algae and wheatgrass thrown in for good measure and it actually doesn't taste bad. That is a HUGE step in the right direction for me as I usually alternate between coffee, starvation and junk food.

Today I feel muzzy headed (self inflicted and totally deserved) but you know what? It was worth it. Life is too short to not drink wine and sometimes I think it is important to try to re-connect with who you were BEFORE you felt unwell because it is easy to become all-consumed by it and somehow lose your sense of self. I will continue to work on that side of myself - I am too FABULOUS to lose "me" to MS after all.

So enough about me, how are YOU?

Back in Wonderland?

2012-01-13T00:55:00.000-08:00

Hopefully you will know my story if you read my first blog. You will be familiar with how I was fobbed off by Doctors until I paid out of pocket to go private and finally got to a diagnosis of MS on Dec 22.

Well, when I had that follow up appointment (privately) with my Neurologist he realised that although he had the results of my brain MRI (which showed the lesions) he didn't have any for my spine. He re-read his notes and realised that it was his error and that he hadn't actually ordered the spinal one, only one of my brain. He apologised up and down and said he would need to re-do as he felt that my leg heaviness and limb symptoms may be as a result of spinal lesions.

It was at that moment I asked him if I would need to pay again for the test as I was self-funding. He said that he hadn't actually realised I was self-funding and that he had probably saved me hundreds of pounds. He went on to add that he would transfer me across to his NHS list and see me in clinic, I felt that finally I had someone on my side.

Yesterday I went to see him, armed with a list of new symptoms and to find out what the next step is. He explained that they have to run all the tests again (through the NHS) I guess almost ticking off the boxes to fit the protocol to diagnosis (he said it gets tricky with someone that starts private and then goes back to the NHS). He said that they have to "gather the evidence" and satisfy all the steps so at this point I am at an official diagnosis now of "Probable MS". Fine, I can accept that. There are rules and protocol, I get it.

What I don't get is this; Once I do all of these tests and if I get to a diagnosis (again) of MS he said that I need to prepare myself for the fact that I probably won't fit the criteria for the DMD's (Disease Modifying Drugs).

So excuse my graphic choice today but it does accurately portray how I am feeling. Screw you medical system. I am fobbed off for years, go back and forth to finally get a diagnosis and then my Doctor jumps back on the fence. I need to go through more tests, including having a needle in my back to collect spinal fluid (no small thing for a chicken like me) and then after all that IF I do get an answer I won't be eligible for medication.

Until when? How rubbish does my quality of life have to get before I meet whatever the target is?

Where does this leave me? Am I officially back in Limbo-Land? Do I get my hopes up that I am not actually a member of this club that nobody wants to belong to? Am I back to facing a name-less enemy (even though I have already been told I have MS once)? Does it even matter though as I don't get the ammo to fight it because I "probably won't fit the criteria"?

What does this mean? Is this IT? I have to feel like this all the time? I feel like I am going CRAZY.

So last night I was beside myself as once again insomnia kicked in at 2.30. I lay in bed thinking "what if". What if the rest of the tests come back negative? If he is no longer willing to diagnose me based on the brain scan, symptoms and history as he did in December and the rest of the tests come back clear, then what?

He still thinks this is a neurological disorder as I have had every blood test under the sun, ruling out other mimics such as B12 deficiency, Lyme etc so in the early hours of the morning I Googled; Neurological disorders that mimic MS.

Nothing fits my symptoms except something called Fibromyalgia, although apparently this doesn't show up on an MRI and I have something on my MRI. Also, it just doesn't quite "fit". Am I grasping at straws? Uugh I am soooo confused and sad.

I have had many facebook messages from other MSers who took YEARS to get their diagnosis and I am so worried that I will be in their shoes. I just want to KNOW.

Maybe I should change my Blog title to My Journey Through LaLa Land because that is how it feels. I am sure there will be Limbo-Landers who can relate to this Blog today as well as MSers who may have had the ups and downs to diagnosis.

I am convinced that it is not only the disease that causes the 75% depression rate but also the way we have to struggle and fight to find out what the heck is going on with our bodies.

So where do I go from here? I will do all the stupid tests and regardless of whether I get an answer or not, drugs or not, I will continue to be fabulous and live my life, enjoy my family, love my sexy man, have my laughs with friends, take my holidays, drink my wine and sing karaoke.

So enough about me, how are YOU?

You Are Invited

2012-01-12T00:57:00.000-08:00

To my pity party. Mood swing alert! Has anyone seen my sense of humour? I seem to have mislaid it this morning. Anyone that has been reading my blogs (thank you) may have noticed that I am trying my best to "soldier on" with a smile (and a laugh) and not be dragged down by this thing but let me tell you that today I am finding this really tough.

Yesterday afternoon I lost my right arm. Not in a "where did you last have it" sort of way but it just went "dead" on me. I kept feeling like I needed to stretch it out or shake it. It felt like someone had filled it with lead and at the same time like ice cold water was being poured up and down inside. This was a new feeling, another symptom to add to the list.

I decided to shove this horrible sensation to the back of my mind because I had arranged to go see my lovely friend for a coffee and catch-up. I excitedly told her about my blog and how I was determined to keep positive and happy. She listened thoughtfully (as she always does) and then she asked me if maybe it hadn't really sunk in. She knows me quite well and can read me like a book most times and she commented that while she thinks it is great that I am keeping my chin up, she wondered if maybe "somewhere" I was still hoping or expecting the doctor to tell me that this was all a big mistake and that I don't really have MS. Rather than tell her she was wrong or off-base, I sat and thought about it for about two whole seconds and then I started to cry.

There I was all, "I am so cool about this, in fact I am enjoying my blog and this could be a whole new thing in my life" (which is partly true) but then once again it hit me that actually this SUCKS. I don't want MS. I want to return it but can't find the receipt. Where are the ctrl, alt, delete buttons for this thing?

Today I have woken up (after another night of tossing, turning and hardly any sleep) with my arm still heavy like lead. I am seeing my Neurologist this morning for the first time since my diagnosis and I am going armed with a list of questions and new symptoms with the hope that he will start me on my treatment.

I don't know the protocol of how this all works, I guess today is the day that I will find out.

So I guess this is a bit of a reality check in as much as I won't always be able to smile on this roller coaster and I will have the occasional pity party (cue music; "it's my party and I'll cry if I want to").

I SO don't want to be a "Donny Downer" as I have had so many people tell me how they admire my positive attitude but I guess I am just a mere mortal after all (boy, is that disappointing to realise) and today I am feeling a bit sorry for myself.

So enough about me, how are YOU?

Laughter Is The Best Medicine

2012-01-11T01:01:00.000-08:00

When I started this blog just over a week ago it was largely for selfish reasons. I wanted to write out my thoughts, feelings and experiences as I faced this challenge head on. I have been overwhelmed by the fact that it has been read by thousands of people already (seriously, how crazy is that?) and I have had such an outpouring of support and love. I have had other MSers tell me how it has helped them to read about someone that feels similar to them and I have been very humbled and honoured by the messages.

I have also had a couple of people ask if I am concerned that I might offend other MSers with my sense of humour. I really hadn't considered this as a possibility as I simply write from the heart and from my own experiences. I do use humour to express myself but I am in no way trivialising this awful illness.

Ask any of my friends (going right back to primary school) and they will tell you that I have always been a bit of a clown. I will be the first person up on the karaoke (even though I am tone deaf - sorry Pixie Lott for killing your songs!) and I will quite often be the girl that makes a complete idiot of herself at a party.

It's just who I am and who I have always been and let me be clear, I have MS but it doesn't have ME. I won't let it change who I am as a person.

It did get me thinking though that when we are faced with something negative in our lives (and surely a chronic, life-long, possibly life-changing, brain-eating disease with no cure qualifies?) then in my opinion this is the EXACT time that we need to dig deep and try to use our sense of humour. What is the alternative? Crawl up into a ball in the corner of a room, wailing "it's not fair"? No thanks.

I wont lie, I have had my moments and I am sure I will have many, MANY more. I have sat and cried like a baby but it is usually out of frustration that I am feeling weak or I have a new symptom that makes me wonder if the rouge soldiers in my brain have launched a new attack. Then it is time to dry the tears, take a deep breath and carry on with a smile.

When I came up with my T-Shirt idea of "It's Not Merlot, it's MS", my partner Phil said he would get a T-Shirt to wear at the same time that reads; "I'm with the Drunk". I couldn't stop laughing at the visual I got of us both wearing those shirts. I supposed there might be some people that might not "get" our sense of humour or our ability to make jokes at a "time like this" but actually it is the jokes and laughter that have kept me from sinking into a very dark place.

I read an article that said statistics show that 75% of MSers suffer from depression. That is awful but I can understand why, it can be a very lonely disease. They say that you don't "get" MS until you GET MS and that is why I am trying my best, through sharing my own experiences to raise awareness.

So, I leave you with this little poem that I threw together (hope you enjoy):

Tingle tingle on my tongue,
Please go away, it isnt fun.
Twitchy twitchy little toes,
When will it stop? nobody knows.

Feeling numb all in my feet,
Makes it hard to feel the street.
I stumble left, I wobble right,
I must look drunk, a funny sight.

MSers listen, one and all,
There is an upside after all.
You forget a birthday or a date,
It's your disease, they cannot hate.

So keep your chin up, soldier on,
Or else this illness will have won.
Keep on smiling, you know its right,
Don't let it beat you, fight the fight!

One of my friends recently said I could be the "Carrie Bradshaw of MS" and what a great compliment although to be fair, if I bought myself a pair of Manolo Blahnik or Jimmy Choos I would probably just fall on my bum!

So enough about me, how are YOU?

The Invisible Monster

2012-01-10T00:53:00.000-08:00

Some of my friends have made the comment lately that they don't really know much about MS and yet since I have been diagnosed I have also had so many people telling me that they know someone that has this horrible disease. The reality is that most of us come in to contact with an MSer every day but probably don't realise it because this is an invisible monster.

How many times have we MSers encountered the "but you look good" comment? That's because most of us don't show outward signs of our symptoms, it all depends how the condition affects the individual.

My first encounter with someone with MS was when I was in my early twenties. I was living in Florida at the time and met a lovely woman the same age as me with a daughter the same age as my eldest (at the time about 3). We became fast friends and were almost inseparable as our children played together. We spent many days at the mall, beach or playground with our girls.

At her daughter's birthday party I noticed that her mother (who I had never met before) was stumbling around the room and I just assumed that she had been over-indulging in the festivities. It wasn't until a few days later when I asked my friend if her mum was OK that she told me she had MS.

I didn't ask many questions but did feel ashamed that I had assumed (wrongly) that she had been drinking. This has happened to me recently (in case you missed my previous blog) so I guess it is true about Karma being a bitch, eh?

I still didn't know anything about the actual disease or what happens in the body so when I was then told by a Doctor a short while after that he thought I might have MS I was literally terrified. I immediately thought my life would be over or I would "end up" in a wheelchair. I now realise (being older, wiser and better educated) that this isn't always the case and there are many different forms of MS.

My daughter recently asked me "so what exactly is MS?" and the way I described it to her is that our body has good soldiers (immune system) on the look out all of the time in our bodies to fight off any bad soldiers (viruses or bacteria). Well for some reason some of the good soldiers in my body went rogue (bad working conditions? Not enough pay? Too much Daughtry music or Real Housewives on TV?) and decided to turn on their boss (the brain and/or spinal column) and attack it.

These rouge soldiers attack the Myelin (insulating coating) around the nerves, which stop some of the messages from the brain getting through correctly. These soldiers can attack anywhere in the brain/spinal column, hence the reason why the symptoms are so varied and different for each person.

Most of my symptoms are sensory so they can't be seen, although the chronic fatigue is easy to see before I cover my dark circles with make-up.

My Neurologist told me that he feels I have a "mild" form of MS. Of course that is good news to hear but a little baffling as these symptoms sure don't FEEL mild.

I was talking to a fellow MSer about this and he too was told he had a "mild case", even though he sometimes completely loses his legs from under him. His advice was that even Neurologists don't understand how we truly feel because they haven't experienced it themselves. His told me that the next time a Doctor tells me that it is mild I should grab his pencil, jab him in the privates with it and tell him now THAT is mild compared to MS!

So enough about me, how are YOU?

Don't Get Your Knickers In A Twist!

2012-01-09T01:39:00.000-08:00

I thought that this morning I would share an embarrassing moment with you.

On Saturday I went into town with Phil to get out of the house and also to get a little bit of exercise as I seem to spending a lot of time on the sofa lately (thank goodness I work from home).

I had to hold onto Phil's arm as we navigated around the high street as I felt quite dizzy. It was quite disorientating as people walked towards and around us, I felt as though I was floating or as if I was walking on jelly (that's jello for my friends across the pond) and it seemed as though everyone else was whizzing by at high speed.

However, it was nice to be out despite the way I was feeling and so I decided to take advantage of being in town and pop into a well-known clothing shop to buy some new jeans.

I grabbed a couple of pairs in different styles and headed to the changing room to try them on. I selected the first cubicle, pulled the flimsy curtain closed and undressed.

Now, I need to digress a little here as I want to tell you about something that happened to someone very close to me, which had an impact on the way I dress.

This person had a horrible sporting accident that resulted in them having to be taken to hospital in an ambulance. Though this person had awful injuries (that staff said looked like the result of a motorcycle accident) one of the main things that horrified her was that her underwear was old and full of holes and she was embarrassed.

It made me chuckle at the time because we are so similar in the way we think and I would have felt equally mortified. Thankfully she made a full recovery from both her injuries and embarrassment. Ever since I have always made sure that my underwear is pretty and matching (you never know if you're going to get in an accident).

This Saturday I was very glad for this because you see as I lifted my leg to put into the jeans I completely lost my balance, stumbled backwards and fell BOTTOM FIRST through the curtain. My bum (and thankfully pretty knickers) on full display. I quickly jumped back into my cubicle and spent the rest of the time leaning my bottom on the side wall to avoid more tipping over.

Of course, being the changing room closest to the door meant that I would have been in full view of the people in the store (and husbands waiting for their wives/girlfriends) and who knows if they saw anything but I just walked out with my head down and eyes on the floor, too embarrassed to make eye contact with anyone.

Mental note to dizzy self: always lean on something hard when trying on clothes.

So enough about me, how are YOU?

Have You Heard The One About Twitchy Toes?

2012-01-07T03:26:00.000-08:00

One of the things that MSers talk about is the fatigue. Now let's be clear, this isn't just the feeling of being tired. This is the kind of fatigue that makes you want to crawl up in a ball on the sofa and not move.

Yesterday when I woke up I had decided that I was going to thumb my nose at MS and finally get that Zumba DVD out of the box. You see before I had this relapse I had ordered the whole Zumba exercise package, complete with the Toning Sticks (that sound really funky when you shake them and take me back to my school days when I was allowed to use the maracas). I woke up fully intending to get my bum off the sofa and that maybe if I exercised I would feel better and more energised.

Well, that is what my HEAD wanted to do. My body however had other ideas.

Every time I stood up the room would spin around like I was on a merry-go-round and my legs felt weak and trembly. By Noon I hadn't even mustered up the energy to shower, which was a little embarrassing when a delivery man (who comes here quite regularly) rang the doorbell. I apologised for my appearance (didn't want him to think I was a lazy cow for still being in my pyjamas at lunch time) although when I explained why he very sweetly told me that I "still looked gorgeous" to him. He did make me smile but was clearly not mentally balanced!

You see lately my shower is taken in shifts and goes something like this:

Step one: Take a shower, wrap hair in towel and put on PJ's.
(Come downstairs and sit on sofa for half an hour).

Step two: Go back upstairs, get dressed and apply makeup. Comb wet hair through.
(Come downstairs and sit on sofa for half an hour, let hair dry out).

Step three: Try to make the best of the hair that now looks like crap because I was to knackered to blow dry.

So to get to my point (oh there is one? I hear you say) you would think that after feeling this exhausted all day long that I would fall into bed and into a full night of blissful, deep sleep, right?

WRONG!

You see in some sort of sick cosmic joke there is a thing called MS Insomnia and I suffer from "Middle Insomnia", which means I fall asleep and then every night, like clockwork at around 2.30am I am wide awake and just can't get back to sleep.

How rubbish is that?

After a couple of hours of laying there in the darkness I was bored with facebook and had read the downloaded digital magazine from cover to cover. I decided to put the put my iPhone down and try to shut my eyes.

It was at this point that my toes start to twitch. "You have GOT to be kidding me". I actually said that out loud, hoping my toes would hear and go to sleep.

My other half, Phil, woke up and asked what the matter was and when I told him he said "hey, I have a joke for you".

"Go on then" I replied.

Are you ready for this my friends?

He replied with "what's the difference between twitchy toes and non-twitchy toes?"

I knew this wasn't going well but played along.

The punchline? MS!

He started to chuckle to himself (he was so proud, bless) and I just said "not funny". He was trying to cheer me up but personally I think he should leave the funnies to Michael McIntyre (but don't tell him I said that!).

Today I was supposed to be going to the gym for a swim (thought this might be a more realistic goal than Zumba) but it's almost noon and I am still on the sofa. I am however showered, dressed and made-up (although I have to confess to wet hair).

So enough about me, how are YOU?
x

Sausages? Again?

2012-01-06T01:34:00.000-08:00

For as long as I can remember (no pun intended) my girls (ahem, Madeleine) have been teasing me whenever an advert or news report comes on the television or radio about Dementia or anything relating to memory loss. Of course there is nothing slightly amusing about Dementia but my children would take great pleasure in teasing me about being so forgetful.

My short term memory has been completely shot for quite a while and I was secretly quite concerned about how much I was forgetting. I would tell the same story over again or ask my kids to do something and be met with a reply of "Yes Mum, you already asked us that". I honestly could not remember. My brain seemed to be working on a permanent "go slow".

Since being diagnosed the penny has dropped WHY I was having trouble concentrating and remembering to do simple things. This has progressed lately to having trouble finding a simple word to fit into a sentence. I will literally be mid-sentence and then BAM then next word is completely gone. I am not talking about trying to find a word that one would need a degree in English Language, I mean a simple word that is just suddenly "gone" from the tip of my tongue. I am then rendered speechless until the person to whom I am speaking jumps to my aid or the word comes back to me (usually after a few "oh what is that word" type comments).

According to the Multiple Sclerosis Resource Centre this can be attributed to "decreased speed on information processing. Thought processes of the brain are interconnected to the conscious areas of the brain via myelinated nerves." Of course my body is attacking the myelin around my nerves (gee, thanks body) and so it does at least explains why I am so scatty and have attention span of a goldfish lately.

It is like my brain is in "safe mode" and can only think of one thing at a time so what I have started to do is jot things down on post-it notes. My lovely other half, Phil, went out and bought a calendar to hang on the wall so that all Doctor appointments, school dates and anything else that we are committed to can be written down and (hopefully) not forgotten.

Now I am thinking that maybe I need to note down what I cook for dinners too because last night I decided to make one of my favourite "winter warmer" comfort meals of sausage, beans and mash. When she got home from school my youngest asked what was for dinner and when I told her I fully expected a positive response. Instead got a disappointed "but we just had that a couple of days ago".

We did???? I honestly didn't remember and thought we hadn't had it since before Christmas. Now this might seem like a trivial thing to most people but honestly I was sitting there racking my brain and I still could not think of when we had that meal. Once the girls explained what day it was (reminding me that their step sister was here) then it finally fell into place but it still wasn't a vivid memory, more like remembering a dream rather than an actual event.

So if you talk to me and tell me something that I forget, of if it feels like I am not 100% "in the room" or concentrating, at least you know it isn't personal. It's my slow brain.

I think I am going to need a bigger calendar!

So enough about me, how are YOU?
x

My New Clothing Line?

2012-01-05T01:23:00.000-08:00

Yesterday started out quite well. My symptoms, although present, weren't as bad as they usually are which is surprising since I had hardly any sleep the night before.

I decided that I would take advantage of feeling a bit better and managed to get quite a lot of work done in the morning.

Now, I am a bit of control freak (a BIT? I hear my family say!) and although I have read that with this disease you should take it easy and try to not "over-do", it just isn't my style to do what I am told.

During my research on many websites, books and articles I have read of people with MS that run marathons, swim the channel and conquer dragons (I'm being facetious but you get my point) and so I am determined to control MS rather than let it control ME. I want to battle with dragons!

With hindsight I probably did too much because by the time it came to do the school run I was feeling a bit "squiffy". I had arranged to meet my daughter at a nearby supermarket (avoiding the awful school car park and getting food at the same time, win win!). As I drove to the store I felt as though I was in control of a roller coaster instead of a VW Golf and by the time I got to my destination the ground was positively moving underneath me. Please don't yell at me, I wont dizzy drive again. I have already been told off by my other half for not calling him but another issue I have is asking for help.

I navigated around the supermarket on the verge of hysterics as I walked on what felt like candy floss (that's cotton candy to my friends across the pond) and the aisles of the supermarket swam in front of me. Shopping list in hand I was determined to get all of the items on it and soldier on. What I actually wanted to do was sit on the floor and cry.

As I got near the last aisle I completely lost my balance and stumbled to the side. Luckily I was holding tight to the trolley (cart) so I didn't fall on my bum and totally embarrass myself. As I stumbled, a passing man shot me a look of total disgust and it occurred to me that this complete stranger thought I was drunk or high on something. I suppose I must have looked quite a sight but it hurt, BAD, and it took every ounce of my strength not to completely lose the plot.

Once again my outward appearance was not matching what was going on inside my body. I wanted to run away and hide in shame (although for now my running days are over so I would have had to crawl away) but then I thought to myself why should I let someone else's misconception (and judgement, the jerk) make me feel worse that I already did?

Maybe if I had an obvious outward sign of feeling unwell (or a T-shirt?) then maybe the same man might have offered a helping hand or asked me if I was OK. Perhaps this is one of the lessons that I might have to learn as I get to grips with this thing - grow a thick skin and don't worry what other people think. Through my whole life I have always worried far too much about what other people think of me and I have always wished that was something I could change. MS might force me to to do just that so maybe I should look at it as a gift.

So enough about me, how are YOU?
x

I'm an Angry Bird

2012-01-04T01:53:00.000-08:00

When I was a bereavement counsellor, I had a client who was "stuck" in her grief and at every session would wail "why me?" As a non-judgemental counsellor it was my job to help her through these feelings but I have to be honest, there was a tiny part of me that sometimes thought "why not you?"

Fast forward a few years and as I face this new challenge of MS I have been all over the place with my feelings, even dipping into a little bit of "why me?" but as I thought of my client - why NOT me?

Of course it is only two short weeks since I was officially diagnosed but since my first Neurologist maaaaaaaaany years ago, the symptoms that I have been experiencing over the last couple of years fit MS so much that I suppose in some ways I had almost diagnosed myself. It's fair to say it wasn't a surprise at all.

The day I was diagnosed was December 22nd and my Mum had flown in from Florida, where she lives, to spend Christmas with us. That night as I was going to bed, after talking it all through, my Mum actually said to me that I needed to take this "more seriously" as it is in my nature to joke (I guess it is a coping mechanism). Well, I have moved on from the jokes and now I am ANGRY!

Even though I had my suspicions I was also hoping it would be something like a trapped nerve or something that could be "fixed". MS can't be "fixed" and each day seems to bring a new sensation and I am getting pissed off at the body that I have exercised and looked after most of the time (with the odd burger and bottle of wine thrown in for good measure) for betraying me.

I lay in my bed at night feeling awful and I picture my brain, wondering what is going on in there? Is more damage being done or are these symptoms a result of the lesions already there?

I am usually quite a happy person and I feel like I am turning into a grumpy, moody, weepy, pathetic person. How annoying I must be to know right now.

I am also quite vain (which woman isn't?) so I wouldn't dream of leaving the house without my full face of make-up (including lashings of the very best under-eye concealer to hide these dark circles) so I LOOK alright to everyone, which of course is the goal when applying the cosmetics. Then I get MAD that they can't tell how ill I feel.

I feel myself feeling frustration towards well meaning friends who tell me that it could be worse or how they know someone with MS that is doing great. I KNOW this is coming from a loving place to make me feel better and I would probably say exactly the same thing to someone if the situation was reversed. I want to say that I am NOT your Auntie Mabel and the reason that MS is referred to as the snowflake disease is that no two patients are the same and will experience their MS in a different way.

Of course, this is what I want to say but I wouldn't because at least these friends and family have offered support and said something. I am so thankful for each of my lovely friends and family who have offered support, listen to me moan about my symptoms (usually for the 100th time) and have never once made me feel like I am putting on them.

The people that have hurt (and angered) me the most are the ones that have said nothing at all but then I guess at times like this you discover who you can really lean on and who really cares.

I know that anger is part of the grieving process and as an ex-counsellor I know that when a person is diagnosed with a chronic illness they may go through all sorts of emotions of grief including denial, anger, depression and finally (hopefully) acceptance.

I am in the angry bird phase right now so I apologise in advance if I am a snappy cow-bag. I hope I don't offend or push you away along the way. I really don't mean to be such a drag.

So, enough about me - how are YOU?

Tingle Tingle Litte TEETH?

2012-01-03T01:02:00.000-08:00

So last night I was all cuddled up in my bed, warm under the duvet when I was rudely woken up by my lower limbs.

Yup, my toes had decided to go to a party without permission and had stated twitching and my legs were trying to keep them under control by making themselves as heavy as they possibly could to hold them from leaving on their own.

As I lay there willing for these sensations to stop so that I could go back to sleep (despite the gale force winds outside) I realised that actually it wasn't just my legs that were being naughty it was my whole body.

My arms felt heavy and my finger tips were getting mini electric shock type sensations. My face was numb and my lips and tongue were tingling too. These feelings are nothing new but then I had the most peculiar feeling that my TEETH were tingling.

Teeth can't tingle though can they?

I think maybe I was just over-tired or maybe it was nerves in my gums having their own little boogie around their handbags (wow, check me out showing my age - do people still dance around their handbags?) but it felt so weird.

So it's fair to say that I will need extra coffee today due to lack of sleep (especially since it is officially my first day back working after the Yuletide Season) but my teeth feel weird for sure this morning. I think they have a hangover from all that dancing!

So enough about me, how are YOU?

No Longer a Limbo-Lander

2012-01-02T05:39:00.000-08:00

On December 22nd 2011, I had an appointment with my Neurologist to discuss the results of my MRI. I fully expected for him to say that it was negative and that there was still no explanation to all of these horrible symptoms I had been experiencing.

He proceeded to go through the images with me, pointing out the various white spots on my brain and telling me that I have Multiple Sclerosis.

I am not sure how I reacted but I guess it mustn't have been typical because after a while he said "this isn't good news you know". I don't know if he misread my relief (at finally having an answer) as apathy or if patients usually react differently when told they have this chronic illness (I am sure everyone's reaction to this news is as unique to them as their MS itself) but to be honest I didn't really know how to take it, after all it has been a bit of a journey.

Maybe I should start at the beginning, go grab a coffee or something as this might be a long read.

When I was around the age of 22 I started experiencing weird numbing and tingling sensations in my limbs. I was also very fatigued but as a young mother of a toddler, who wouldn't be?

I was living in Florida at the time and after consulting my family Doctor, who had known me for many years, I was referred to a Neurologist. He felt that my symptoms sounded like MS and did a series of tests including one where he was putting paper cups on my back/shoulder blades and asking me if they were hot or cold? Most of the time I couldn't tell so I reverted back to "High School Karen" and guessed, hoping to get it right. I was then sent for an MRI, which came back negative (I have now come to learn that 10% of MS patients will get a negative MRI). I was sent on my merry way with no explanation to my symptoms and after a while these odd sensations faded away and life moved on.

Over the next 20 years (Oh yes, I am a ripe old age of 42 now) I had my ups and downs with various things and looking back I wonder if some of them were in fact MS related however, about two years ago I started getting the weirdest feeling of my face going numb.

Because of a family history of heart disease and my own high blood pressure my Mum urged me to go to the Doctor (I live back in England now and I have to be honest I haven't had the best experiences with the NHS). I put it off for a while but the numbing and tingling was getting a more frequent thing and in the back of my mind I was slightly worried about having a stroke. Anyway, the doctor prescribed more meds for my blood pressure and sent me on my way saying if I was going to have a stroke I would have had it by now. Fair enough.

Over the last two years the numbing feeling in my face continued and so last July I went back to see a different Doctor. She told me I was having anxiety attacks. I told her I wasn't FEELING anxious when it happened (how can it be anxiety I questioned when I am waking up from a night sleep with a numb face?)

Over the next few months the symptoms got worse. My right eye felt like it was being squeezed from behind, I felt dizzy and like I was on a boat most of the time, so bad that I didn't feel comfortable driving my car. My legs felt heavy like they were filled with lead and they tingled all of the time. The numbness in my face spread to my lips and even the tip of my tongue. I was forgetting EVERYTHING, to the point where my teenage children were joking that I had early onset Dementia (a joke to them but a real fear to me!). I was exhausted all of the time and I constantly felt like as hard as I tried to inhale, I just couldn't fill my lungs with enough air.

Enough was enough.

I went back to another Doctor (thank Goodness my surgery has a ton of Doctors eh?) and I lost it. I broke down in tears and said that IF he agree that this was all anxiety then fine, give me anti-anxiety drugs and lets see what happens. He clearly didn't because he referred me to a Neurologist.

The letter came through the post and the first appointment to see someone was two months and there was no way I could wait that long so I decided to pay out of pocket and go private.

I fully expected for the Neurologist to treat me like the hypochondriac whack job that all the other Doctors appeared to see me as but he didn't. He listened and passed me tissues as I cried (again), explained my symptoms as well as the fear that I was going insane. He reassured me that he didn't think I was mad (hooray) and that Neurological issues were often tricky to diagnose.

He referred me for an MRI, which was done a week later (amazing how quick you get seen when you get your cheque book out!) and then another week later I was sat back in his office getting the news that yes there are indeed lesions on my brain.

It is almost two weeks since the diagnosis and I have had a ton of emotions in the last two weeks. It wasn't the best Christmas gift to get but because I had my mother over visiting I wasn't able to just hide under my duvet feeling sorry for myself. I have had dinners to cook and children to entertain.

I have more tests ahead of me including a lumbar puncture and then I guess we will be looking at treatment. I am trying to absorb information as much as I can but from what I can see MS is so different for each patient so I will just try to take one day at a time.

I decided to start this blog so that my thoughts, fears and feelings can be expressed here. I am very conscious that I don't want to drive my friends and family crazy.

Anyway, enough about me for now - how are YOU? ;)
x