Please Wake Me Up From This Nightmare!

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!

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?

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 ...

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

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?)

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!

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

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?

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

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!

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

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

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

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

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

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

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?