So What?!

Good Morning Bleeps.

How are you this fine Saturday morning? I am feeling pretty good today, in fact I would go as far as to say I am emotionally STABLE.

I sit here feeling physically the same as I did yesterday but I had to call the police on the pity party as it was getting out of control. I mean seriously, it was like one of those films where a teenager invites a couple of friends over when the parents are away and before you know it there are hundreds of kids drinking beer in the garden, having sex in in all the bedrooms and toilet papering the neighbourhood.

I am writing this through the little black floaties in my eyes but instead of getting upset about them I am saying "so what?" Who cares? I can still see and it could be worse. My legs are heavy, tingly and have the aching pains in them but "so what?" I can still walk. My face is numb on the left and it feels horrible as usual but "so what?" I can still move it and it looks alright now that I have covered it in slap.

I have been so focused on "what if's" over the last couple of days that I forgot about my "so whats"!

I decided yesterday afternoon to get over the blues and "get my sexy on" ready for my man to get home. I decided to start this process by taking a nice hot bath. I haven't taken a really long soak in a while so the idea of laying in a nice bubble bath sounded like luxury. I used to lay for hours in the bath reading my latest chick-lit novel but I haven't done that in ages so I was really looking forward to it. My lovely daughter Kassidy bought me a Kindle for Christmas and I was a bit nervous that my butter fingers might drop it in the bath so I just lay there, eyes closed and relaxed.

As I lay there in the hot water my hands started to freak out, an electrical storm started raging in my fingers. I have heard how some MSers can't take hot baths but I have my shower quite hot so I thought I was immune. Hmmm, maybe not. By the time I got out of the bath the room was spinning, I felt nauseas and I thought I was going to faint. The tingles in my arms and legs had magnified to an extreme level. I staggered to the bed and lay there with my towel wrapped around me, waiting for my body temperature to come down and normality to return.

I no longer give a monkeys what the tests say or if the Neuro validates me or not, that was enough evidence for me. Doctors used to do the "Hot Bath Test" to diagnose MS (I believe some still do) and I certainly "passed" yesterday.

I got myself dressed (full hair and makeup) and even though we had no plans to go anywhere I made a conscious effort when choosing my clothes. Sometimes it is easy to get sucked into a vacuum of negativity and it is easy to forget that the person that you were before you got sick is still there. Sure, it may be a different version of you, but still you. One thing that MSers HATE to hear from people is "but you look OK" but yesterday I decided that I DID look OK and so I was going to make the most of it.

With my lack of energy and gym visits lately I have felt insecure about myself and quite frankly it was time to get my mojo back and so I put on a pair of tight fitting jeans with a floaty white (sheer) blouse that I have only worn a couple of times. The look on Phil's face when he came home and called me "gorgeous" was enough to make me feel like a million dollars. I am a lucky girl, even after almost three years Phil still makes me feel desired and sexy.

So today I have my "so what?" head on and I am feeling a lot more positive. I am sure this will change from day to day and that is just the roller coaster ride that is MS but if, like me, you are having one of those days when you are feeling blue just try to remind yourself that it could be worse, you could be a dog with markings that look like a penis!

So enough about me, how are YOU?

Playing The Waiting Game Sucks

Good Morning Bleeps.

I am sorry for my lack of a blog yesterday but I was in such a crappy mood that I didn't really know how to put my feelings down without you thinking you should send out the men with the white coats to take me away.

Today I will confess that I'm not much better in fact, I am very close to the edge (emotionally) and if one more person tells me to be positive I will shove my foot POSITIVELY up their arse! It's my (ms) party and I'll cry if I want to.

I am not seeing my Neurologist until April because that is the "next available appointment" but yet my Lumbar Puncture was done on February 14th. Why should I have to wait two months to get any answers?

It is easy for the Doctor to think this is acceptable because he doesn't have body parts going numb, heavy or tingly. He isn't sitting there with the room spinning or things floating in his eyes. Oh but wait, didn't he say how he isn't worried about my symptoms although he understands how they are bothersome to me, yes bothersome!! How about the fact that for the last two days I have felt so fatigued, tingly, light-headed and achy that I have sat here feeling like screaming and shed way too many tears yet again? Yeah, really fu*king bothersome!

Sometimes I think that some of these Doctors forget that there is a real live person with actual feelings that sit opposite them, not just a list of symptoms and test results. Speaking of test results, what happens if they come back negative? I am basically screwed aren't I? I have read so many different views on the tests too.

I have people asking me when I will get my Lumbar Puncture (Spinal Tap) results because then I will know for sure and yet I read others who say that their Neurologist doesn't even do these tests because they are painful (bloody right) and they are often wrong.

Does ANYONE really know?

I called my GP today to find out if they get copies of the results because I don't want to wait. She said they don't and that they have to wait for the consultant to write to them. I asked if there was somewhere I can call but apparently there isn't. She reassured me that "no news is good news", I couldn't be bothered to argue that point.

Sorry, I realise this is a rant but that is how I am feeling and I have committed to being honest in this blog. I won't sugar coat it, this sucks and feeling like I have nowhere to turn for answers or help sucks even more. I can honestly say I have never felt so lost or alone in my life and I don't know what to do about it.

It is so weird because I have had people tell me that they read my blog and I am an inspiration to them - I don't feel like an inspiration. I feel like a sad, pathetic loser. I am not earning enough money and I need to be putting myself out there, drumming up new business and gaining new clients. Problem is that my "get up and go" got up and went and so I spend most days worrying about my business but not having the energy to do anything about it.

Phil and I had our usual date night on Wednesday and when he was done telling me about his day at work he asked "how was your day?" I felt like I had nothing to say, nothing to offer other than "The sofa was comfy and The Jeremy Kyle Show was great". Seriously?? Is this who I am now? I felt instantly insecure (and I don't need any more help in that department).

I am lucky if I am dressed before Noon, oh who am I kidding, before the 3pm school run and it is an effort to put make-up on or to dry my hair. I haven't called family members who are important to me because I know I will cry or be totally depressing to talk to and who needs that? I know they will be mad at me for not calling and so I put it off even more because I can't handle the stress of it.

I was supposed to be going swimming this afternoon with Phil. It would have been the first bit of exercise in months and maybe I would feel better for it but I am just so fatigued and dizzy that I can't face it. I was in bed early last night and slept for a solid 8.5 hours (at least) and yet today I feel like I haven't slept in weeks, I am frustrated and sad.

I know that beating this thing (whatever it is) is all about having a PMA (positive mental attitude) and the mindset of "this wont ge the better of me" but at the moment I am stuck in a bit of a rut and I honestly don't know how to get out of it. I used to think I was a strong person but even the strongest of people have their breaking point don't they?

So enough about me, how are YOU?

Can't We All Just Get Along?

Good Morning Bleeps.

This morning on the news they are reporting how there needs to be more compassion towards old people in hospitals and care homes. Apparently in the NHS the patient isn't always treated with kindness, Noooooo, you don't say?

When I was "admitted" for a whole hour into my closest hospital after six hours in A&E (thinking I was going to get help for my lumbar puncture headache) I was put on a ward with elderly female patients. There was one lady who kept calling out to nurses but they kept ignoring her and walking by, the lady in the bed next to me asked for water to the response of "it's next to you". I looked over and sure, it was on the table next to her but it was clearly out of her reach. She told the nurse that she couldn't reach it and the reply she got was "I am busy right now". To be fair the nurse was "busy" standing next to me, watching the electric blood pressure machine do it's thing. I can appreciate how pushing a button and standing still may be considered busy for some people but my goodness I wanted to get up and get the poor lady the water myself (even with my skull crushing head).

It makes me sad, where has kindness and compassion gone? To be fair, maybe that nurse was at the end of a 16 hour shift and was exhausted, I know that most of them do a wonderful job and work too long hours but that is not the patient's fault. Sure the NHS is to blame but a simple smile costs nothing, takes seconds and could make all the difference to the person who is sick.

It does make me wonder though, does being kind to our fellow humans really need to make the news? Didn't we all get taught that if you "can't say something nice then don't say anything at all?"

Since getting sick I have joined many forums and groups online trying to find out information and also to connect with like-minded people. I have met some really lovely people (you know who you are) and been supported through some really hard times lately. I have also witnessed a lot of ugly.

One of the first sites I joined led me to a wonderful MSer who was a great source of support from day one. I remember reaching out to a newbie on that site to offer support with words of something like "I don't feel like I should comment as I am still trying to figure this out myself" and this MSer validated me by saying that of course I could comment, that we are all struggling together. It made me feel less of a fraud. You see until you get an ACTUAL diagnosis (and at that time I hadn't had my MRI results or anything, I just knew how I was feeling) you can feel like a fraud.

I left that site because there seemed to be an undercurrent of "We have MS and you can't join our club", or at least that is how it felt to me. People were shot down with comments like "doesn't sound like you have MS to me" but it didn't come across to me in a kind "don't worry, it doesn't sound like you have this awful illness" kind of way, it was more like "piss off, you can't play with us". It got to the point where I was afraid to make posts in the fear of being shot down. You see when you feel poorly you can feel vulnerable at the best of times and I for one am MUCH too sensitive to deal with that sort of negativity. Thankfully I still chat to my MSer friend, he continues to be awesome.

I joined a couple of "closed groups" on Facebook and lately OMG there is so much nastiness. Who gives a crap if you do or don't believe that making diet changes may help MS? Who cares if one person is a CCSVI supporter or if another person thinks it is all bollocks? Some people can't drink alcohol and I feel better (symptoms lessen) after a glass of wine. Everyone is different, just as our symptoms are. I just had a good friend leave a group because someone called her fake for not having her FACE as her profile picture. I'm sorry but last time I checked you couldn't tell if someone has MS or not by how they look. Hmmm, that person's profile picture is their bottom (if I had an ass like that it would be my profile pic too!) so clearly they must not have MS. WTF?

We will all have varying opinions. It's OK to agree to disagree. Some people will advocate smoking cannabis to alleviate symptoms and others will say "but it is an illegal drug". It is ridiculous to expect people to agree on everything all of the time but (and maybe this is why my Dad always accused me of wearing rose tinted glasses) I DO expect common courtesy. I can't stand it that my friends are leaving groups because of a few trolls who don't have the common decency to JUST BE NICE!

My friend left a group recently and her parting words put it better than I can and so I quote (and hope she doesn't mind):

"I will be moving on..and thought I'd share my opinion, right or wrong. I dont care whether you are young or old, fat or skinny, white, black, or in between...rich or poor..living in a castle or under a bridge...married, single, divorced or widow.. many kids or no kids..religious views..who cares?? Own your own business, or work many jobs to make ends meet..or not work at all... SO???? Do I care if you use your own photo as a profile pic? Or will I condemn you and say you are false??? Does it matter if you post your backside instead of face..or a pic you like instead of a real photo of you?? I don't care if you are gay or straight...in love or in hate...or which part of this world you live in... Isnt this supposed to be a board about friendship/knowledge/sharing of MS?? Whether it has been 26 yrs or 26 minutes of diognosis?? We all have enough to deal with , by having , or probably having MS. We are all humans............not clones of each other... I wish all of you the best of luck in your MS journey."

I agree with everything she said. It doesn't matter if you have had your diagnosis for 5 minutes, 50 years or are still in limbo land trying to find out what evil has invaded your body. It doesn't matter about sex, colour, religious views or what you do for a living. You see, MS (or indeed any illness) doesn't discriminate and neither should we.

Isn't the point of these groups to support each other? Would these people talk to others in "real life" the way that they speak to each other online? Maybe my views are idealistic but if you don't like them then sod off because I am right and you are wrong (see what I did there?!)

Now, let's have a group hug. MS is the enemy, our fellow MSers are not.

So enough about me, how are YOU?

FUPMS!

Good Morning Bleeps.

I am painfully aware that nobody wants to read a drag-fest every day. After my last couple of weeks of blogging about my lumber puncture hell I feel like I should be coming to you today with a sunny disposition. In my little disclaimer at the top I have made the promise to always be honest and today I am not feeling at all sunny, in fact, there is a storm brewing. So I can't bring you happy Karen today but like I tell my kids "you don't always get what you want in life so get over it". Wow, actually that sounds a bit harsh when written down, need to brush up on my motivational parenting skills I think.

I am feeling really fed up today. I am so exhausted and my legs are being a pain in the ass, well actually they are being a pain in the legs. They started aching yesterday as I shopped for groceries, you know, that dull but intense "growing pains" type ache some of you might have had as children. As I pushed my trolley out to the car I felt like I was walking through porridge. Every step was an effort and even though my head was clear and I was feeling positive in myself, I was being betrayed by my lower limbs. Sodding legs, if they aren't tingling, zapping me with electricity or going numb they act like spoiled children not wanting to walk.

By the time I went to bed I felt like I had run a marathon. Phil was telling me how achy his legs were feeling from playing football on Sunday and his run that day and although I didn't say anthying I was secretly envying him. At least he had a reason for his legs hurting, my legs haven't seen exercise for months and yet the pains and heaviness in them made me feel like I had been giving them a beasting at the gym for hours.

I fell asleep with no problem but woke up at 2am with such throbbing in them. Somebody had once again filled my legs with wet sand (or cement) as I slept because they felt like they weighed a bloody ton. I lay there feeling miserable in the darkness resisting the urge to pick up my iPhone but after a while I was so bored and fed up I gave in and checked out my Facebook and Twitter feeds. The good thing about having friends all around the world is that I can usually find someone to chat to and so I was able to pass some time talking to friends online.

After about an hour I put my phone down and eventually after what felt like ages of tossing and turning I drifted back off.

I am exhausted this morning, my throbbing, heavy legs are still with me and I feel really fed up. I am having one of those FUMS days. Can I technically say that now? Can I say FUMS or should I say FUPMS? Does it matter? I don't even care today what is causing the pain, I just wish it would stop.

I know that really I need to address my lifestyle, change my diet, maybe cut back on the wine (note I only said maybe!) but I feel really resentful. I have a friend who is tackling his MS head on and trying to control it with diet and exercise. I mean, the man has even given up bacon (now THAT is commitment)! I think that maybe I have a bit of a self-destructive personality because I am not willing to make these changes (yet) although I think it is more a case of "screw you whatever bloody illness you are, why should I give even more of my life to you?"

I think I will go and jump in the shower (try not to lose my balance and cut myself while shaving today) and see if I can shake off this mood. Nobody loves a Donny Downer.

So enough about me, how are YOU?

The (going slightly) Mad Scientist

Good Morning Bleeps.

I am on a mission today, I am going to research every MS mimic that I can and so today I have put on my scientist coat.

I have already been ruled out for the obvious ones such as Lyme and B12 deficiency via blood tests so I have decided that since I am not back to my Neuro until April to do some more research. Since my Doctor went back on the fence and changed my diagnosis to Probable MS in January (after I was officially diagnosed in December) I have been left in a horrible place of "what if".

What if all the other tests come back negative/normal? What if the Neurologist can't explain what is wrong with me? What if my symptoms get worse and I have nowhere to turn? What if, what if?!

Of course nobody WANTS to be told they have MS but personally I think being left in limbo is worse. Somebody recently commented that the only difference between getting an official Dx of MS versus one of Probable MS is merely documentation. I totally agree however without the i's being dotted and the t's crossed I dont get an MS nurse or any medical support. I need it to be definitive and so today I am going to try to get one step ahead of the game in the event that the further tests come back with nothing.

You might want to grab a cup of coffee or something as this one is going to be long, not that my blogs are ever really short as one thing that I know I suffer with is verbal diarrhoea.

I am researching what other conditions can mimic MS but only the ones that have the presence of MS-like lesions of the brain's white matter on the MRI, which is what I have. So the first one I have come across is:

Polyarteritis Nodosa.

Reading the information on this illness, I think that SOMETHING would have shown up in my blood tests so I think I can safely rule it out. Also, another major symptom of this one is that there is usually a weight loss of equal to or greater than 4.5kg. I wish!!!! I have gained weight and am struggling to get it off (thanks heavy, tingly, exercise hating legs).

Next I come to:

Lupus erythematosus

Now this one rings more true to me on the symptom list (I will say yes or no where applicable).

• Common symptoms include: Chest pain when taking a deep breath - Sometimes and that is why I am under a cardiologist.
• Fatigue - always (but a very common MS symptom too)
• Fever with no other cause - no, not this one.
• General discomfort, uneasiness, or ill feeling (malaise) - every day!
• Hair loss - YES!! I even blogged about it.
• Mouth sores - Nope.
• Sensitivity to sunlight - Never, I LOVE the sun although I haven't been in it since my symptoms kicked in bad. 
• Skin rash -- a "butterfly" rash over the cheeks and bridge of the nose affects about half of people with SLE. The rash gets worse in sunlight. The rash may also be widespread. - No
• Swollen lymph nodes  - No

Other symptoms depend on what part of the body is affected:

• Brain and nervous system: headaches, numbness, tingling, seizures, vision problems, personality changes - YES!
• Digestive tract: abdominal pain, nausea, and vomiting - right-side abdominal pain and nausea but no vomiting.
• Heart: abnormal heart rhythms (arrhythmias) - yes, again under cardiologist.
• Lung: coughing up blood and difficulty breathing - no blood but trouble getting enough air in my lungs sometimes. I always put this down to an MS Hug.
• Skin: patchy skin color, fingers that change color when cold (Raynaud's phenomenon) - Yes, suffer from Raynauds often.

Hmmm, so where does that leave me with that one? Quite a few yes answers here, will keep this in my top pocket in case I need further investigation. I am sure you don't have to tick all boxes on a symptoms list do you?

Syringomyelia

This one is a condition in which a cyst forms within the spinal cord, I will wait to see what my spine MRI shows but this one doesn't ring true for me either.

Other conditions that are listed but just dont sit right for me or would have shown up in one the billion blood tests I have had are:

• Tropical spastic paraparesis 
• Some cancers 
• Certain tumors that compress the brainstem or spinal cord. 
• Progressive multifocal leukoencephalopathy 
• Stroke 
• Neurosyphilis 
• Spinocerebellar ataxias 
• Pernicious anemia 
• Diabetes 
• Sjogren's disease 

As you can see I am going around in circles and perhaps a bit mad. The thing is, I am sat here with my body doing weird and whacky stuff with no definitive answer as of yet. I was happier in December when my Neurologist said that yes, it is MS. I least I KNEW! Now that my diagnosis has changed but my symptoms haven't it is so frustrating. I just want answers and I want them now. I am not a patient person, never have been. I am impulsive, head strong and basically a typical Leo. All of this waiting and wondering is driving me bonkers.

I want to know if this is as bad as it is going to get? Will I wake up one day and it all be gone? I know there are no guarantees in life and I don't expect one but just a nod in the right direction would be very welcomed. I am SURE everyone will tell me to just wait for my test results and then do all this research if they come up with nothing but it isn't in my nature. I don't know how to quiet the control freak within when I feel totally out of control?

I am sure anyone that has been through this process will understand.

So enough about me, how are YOU?

Get Well Soon Shirley!

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!

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!

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

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!

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?