Sunday, 5 September 2010

New diagnosis...

Hi everyone :)

Just thought I'd post an update as I do believe it's been about a month since I last wrote anything.

I've just got back from Sainsbury's and I'm supposed to be doing revision (I have an exam on Soviet Russia from start to finish tomorrow!) but I'm feeling a bit weird from Sainsbury's. I get this it a lot, it's hard to describe... it's almost as though things are shifting in front of me even though I'm staying still; like I've shifted a foot to the left but I haven't moved. It's like a fragmented dizziness, at the same time as getting hot and cold shivers and, if I've done something like shopping which involves more energy/ strength than I have, I'll be sweating, shaking and having palpitations. Not to mention aching if I'm carrying bags. Anyway, long story short, I thought while I try and get myself together to start on some more revision, I'd write this post ;-)

Not a lot has happened in the last month but at the same time I've been insanely busy wth uni work - continual revision, constantly trying to chip away at my project and so forth. A week or so ago I was so stressed and had made myself so ill from working that I was vomiting... lovely. But I'm feeling a lot better now, particularly as I've only got one exam left (i.e. tomorrow) and have very nearly finished my project which will be handed in in a few days. Thank god. My exam on Wednesday (I only had two exams) was awful; I can't write on demand, especially in a pressured situation like exams as my mind goes blank. I also can't sit in an enclosed space concentrating for 2 and a half solid hours. I'm entitled to rest breaks here and there but they make no real difference. On Wednesday I gave up half an hour early as I couldn't cope anymore. I couldn't think of anything more to write, but I think if I was feeling okay I could have done. It's just that exams are literally the worst invention for people with this illness, heh... literally everything is against you. Ideally I could have a very long nap in the middle of it, or naps every half an hour. That's the only way I could actually cope with them/ perform to the standard I know I could if I wasn't faced with conditions that don't suit my body. But as it is at the moment I'm sitting there for 2.5 solid hours, trying to stay awake, trying not to feel too sick to concentrate, trying to numb the discomfort in my body, trying to work around the massive issues with word-finding I have, especially on demand (literally the other day I was getting stuck on every other word), trying to work despite the headaches getting more intense, trying to focus despite the mental exertion it requires to think so deeply taking more out of me than I have. I'm sure you get the picture. I suffered so much after the exam. I pushed myself to nip to the shop to get some food for that night but I was feeling horrendous and even worse when I got home... I was in so much discomfort I didn't want to be in my body any more. I just wanted to be free of it. There was nothing I could do for myself and Jon isn't here to help me with anything, so I was just lying in bed pretty much whimpering from the discomfort and boredom and frustration. Sounds pathetic I know, but I suppose it was really.

Anyway, on Friday I had an appointment with a rheumatologist. I got that appointment because I'd mentioned to my GP recently that I have hypermobile joints (I can do all sorts of bendy shit with them that you're not meant to be able to do :P) and am getting pain with it too. She said she suspected I had hypermobility syndrome, so referred me for a rheum. examination.

In short, the rheumatologist confirmed my hypermobility syndrome (although trivialized the discomfort it can cause, going on about how it is 'benign' - I know that but it still causes pain, grr!), and she also diagnosed me with Fibromyalgia.
I know a lot of people with M.E. also have Fibro, but I thought it was just intense muscle/ joint pain - and I do have those, but I wouldn't say they were constantly intense or anything. Anyway, I looked up the symptoms when I got home and realised that actually, those symptoms probably fit with me even more than the M.E. ones do. That said, they are very similar so it could be that I have one or the other or both.

The symptoms that really struck me were:

IBS, headaches, 'fibro fog', poor quality sleep, fatigue, stiffness, extreme sensitivity, tinnitus, paresthesia, restless leg syndrome, thermoregulation problems, jaw pain, cold symptoms (for me, these come on particularly if I've had a bad night's sleep), muscle twitches and weakness, dizziness, nausea, widespread pain, vision problems, trouble breathing etc.

I know a lot of those overlap with the M.E. ones but meh.

I didn't really like the rheumatologist I saw. She smiled occasionally but wasn't overly friendly or comforting, especially considering I was struggling to articulate things because of the brain fog, and she kept giving me puzzled looks as though what I'd said didn't make sense (which wouldn't surprise me, but she kept pushing me to answer in more detail/ in a way that she could understand but I couldn't!). It was also quite an embarrassing experience in general... I'll elaborate, which I'm sure some of you might find amusing ;) so embarrassment factors:

1) I knew I would have to provide a urine sample when I got there, so I specifically banned myself from going to the loo before I left the house so that I would be able to go when I was there. Anyway, when I got there and was asked to provide a sample, the nurse directed me to the toilet and waited outside for me. Five minutes of trying later and I had to come out and admit defeat, saying "I'm really sorry... I can't wee on demand." - lol! I was telling one of my housemates about it later that day and he was like "that's what we call stage fright" - ahaha. It's very true!

2) I dressed specifically in a short skirt and clear tights so that I wouldn't have to take any clothing off for the dr to be able to feel my joints. Little did I know that she would want to perform a full body examination and I would be made to strip down to my underwear anyway. I was not amused :P worse, she made me dress in this gown thing that didn't do up at the back - as in, everything at the back of me was exposed... my back, my bra, my knickers etc. The worst thing was when she was was feeling my spine, she firstly commented on my tattoo saying in a really un-enthralled tone 'oh that's interesting' and then she was feeling my spine, but I could feel that my knickers had ridden up slightly and were exposing far more of my bum than I was comfortable showing. That was awkward. :P Oh, even worse, she made me bend over to put my hands flat on the floor while keeping my knees straight. I don't want to imagine the view she got from behind :')

3) When she was examining me when I was lying down, my legs and arms kept twitching and on numerous occasions I almost smacked her in the head.

4) She was trying to bend my knees but when I bend them, they tremble violently (which means going up the stairs is fun, lol). So there she was holding my leg, bending my knee and my knee actually shook so much it went through her as well, ahahaha.

5) She asked if I had had any hair loss. I said no. She then said "yes, you do look like you have a good head of hair" and I - totally out of it after only 3 hours sleep the night before - went, "yes... it's... I'm... thick *points at head*" ahahahaha. So in trying to agree that yes, I have thick hair/ my hair is thick, I ended up just calling myself thick. Brilliant.

I generally got the feeling she thought I was really, really dumb from that appointment hah.

Anyway, the outcome: I got the hypermobility syndrome confirmed, I got diagnosed with Fibro, and I got referred for physiotherapy which I'm happy about as I could really do with it.

I'm not sure how I feel about the Fibro diagnosis. In a way I'm satisfied, in that I feel that it might be taken more seriously than the M.E. - it just seems slightly more accepted by the medical profession and therefore most other people as well. Similarly, it's nice to have another name to describe my symptoms.
At the same time though, I'm obviously disappointed that it's yet another thing to add to the list of problems, and as with the M.E. there's constantly that niggling worry like, "is this what's *really* wrong with me or is it yet another label for something they don't understand/ a dustbin diagnosis?" It's so hard to know.

But I should probably stop pondering and get on with some revision now! I really don't feel like it and I'm really cold/ shivery/ tired/ bleh, but I think I owe it to myself to try and do well tomorrow.

Will hopefully post again soon :)

Much love x

1 comment:

Bethany Mason said...

Wow, long post - have just got through it and am certain I can't remember most of it as that's a lot of information!

It didn't sound to me that you were thick at all, they should expect someone with M.E. to have difficulty with everything like that. And most of the things you said were embarrassing probably were the things she was testing you for anyways (like your leg shaking - which mine does as well).

Oh, and I wanted to say you're not pathetic for just collapsing and feeling like the world is a harsh and horrid place because we've all felt like that (especially those of us with M.E.) and let's face it, the world can be harsh and horrid when you have an invisible illness - it's designed for people who are not only healthy but able to live 24/7 lifestyles.