My bed

Sorry it's been a while again, but as I've said, I don't know who I'm apologising to since nobody actually reads this...
The subject of this post is so, because I seem to have spent a lot of time in my bed recently, due to bad sleeping and very bad pain. Since I can't sleep very well or very easily, once I do sleep I get left alone (at the weekends) until 12 or some such time. However, when I have to get up at 7 and can't sleep until 4, you can see how that doesn't work out. So sometimes, I end up missing a day of school because I'm physically too tired to be able to get up and leave the bed, let alone the house.
Another reason I'm here often is the pain. I've started a new type of physio in the "gym" which isn't going well for me.
A) I believe they think I have "backache" (which is an extremely over simplified and patronising term for what is actually chronic severe pain) despite the fact that scans have shown a degeneration of discs and movement of my vertebrae. As well as the fibromyalgia making it worse, and probably a pain syndrome on top.
B) They don't seem to find anything concerning or odd with the fact that this is my 8th course of physiotherapy for my back, none of them have worked, and I've been doing this course for over 6 weeks with no improvement.
C) It's causing me severe pain and other worrying symptoms (pins and needles, dizziness) during and immediately after the class, and for the next 5/6 days after it. And finally,
D) My actual physio is away. So I can't see him to make this stop and to get those crutches until the end of March/April.

The reason I'm in bed now is reason C. It is now Saturday night, 4am (technically Sunday) and I'm still suffering major effects from this class on Tuesday. I'm having to be very careful because any movement and breath causes pain. I'm trying to decide if this class is worth it.. I was told to try it for a few weeks, and I've done 5 weeks I think, so is that "a few"? The problem is if I stop going I'm accused of not wanting to get better and an attitude problem- but how far does it have to go before it gets to the point where I decide that my quality of life is better without the physio. Does it have to get to the point where I'm in this pain constantly?
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Another trip...

Me and mum are off to London/ Cambridge tomorrow, to go and see my sister. I'm dreading this slightly, since we have to wake at 6am in order to get the train, and since its practically impossible for me to sleep before 3am (I didn't sleep until 5am last night) I'm not too hopeful for me being rested tomorrow.

On the plus side, we're going to go to some shops on Oxford Street, which I haven't been to for ages, which should be really nice. We're probably going to get taxis around London, not sure if we trust ourselves to a) find tube stations with wheelchair access and b) manage to manoeuvre myself onto the tube..

On a different note, I have now heard back from all of my 5 university, with conditional offers for all of them :D

Reading- ABB
Aberystwyth- BBB
Bath Spa- BBC
Nottingham- BBC
Plymouth- BCC

I'll come back to the university talk when more happens, but now its just a case of going and seeing them and deciding which offer to accept :)

Also, I have recently seen my 8th physiotherapist and an occupational therapist. The first 2 times I saw the physio I was very irritated that he assumed he knew what was wrong with me and assumed he could cure me. He actually said, and I quote: "I'm going to assume the MRI scan is normal."
After 2 sessions of that, I saw an OT who was lovely, and very helpful. In fact she told me I should be using crutches without me mentioning it, and that I should get a bath seat fitted and a support splint for my hand and wrist while writing/walking/pushing my chair.
She told me I should ask the physio if there was any reason I shouldn't have crutches, and I was dreading his answer. Surprisingly, he accepted it, assessed my walking and then agreed, so I'll finally be getting crutches once the new order comes in in a few weeks! Happy days!
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Surprising School Help...

Yesterday I was called to the exams office to "sign something". I went up there, and they told me that they had applied for help during my exams on my behalf.

They're hoping to organise 25% extra time, un-timed breaks and a separate room. And I couldn't be more relieved.

It's the sort of thing I would never ask for, but now it's been given to me I'm so very grateful....

Concerning and unhelpful developments.

Since I've last posted here, I've had my MRI scan and the first session of my 8th round of physiotherapy.

Physio annoys me. They've already done everything they could for my back, and assume all my problems can be solved in physiotherapy, rather than the crack in my spine and the autoimmune diseases... It was even considered by my mother to be ridiculous, which says something, but if I don't go I get portrayed as someone who "doesn't want to get better".

Quickly following this came another argument regarding crutches. I walk around at the moment using two sticks sometimes, and so it only seems a natural progression to move onto something designed for the purpose when I need it. But no. That'd be ridiculous.

Tonight I went to a meal for a good friend, and during the meal I bit weirdly, and chipped tooth with another tooth. A) How is this possible?! B) Surely that's not meant to happen!? Now we're concerned, because Sjogrens syndrome, which can be very related to Lupus etc can cause weak teeth and damage...

I'll keep you posted.

My birthday

Today (12th) is my 18th birthday. Since I last saw the rheumatologist, I've got appointments to see the physiotherapist (again) the occupational therapist and for my MRI scan. Hopefully at some point someone will give me something better to manage my pain, and feeling so ill.
Last week I got a phonecall from my GP, telling me that I've been taking too much of one of my medications even though I'm certain I was told to increase the dose. I wouldn't have just decided to up my own dose. As a result, I've been in terrible pain in my back and leg, and I've been just as ill. So exhausted.
However, my university application has been going well. I can't remember at which point I left you last time, but I now have 3 offers for Plymouth, Reading and Nottingham, to read history, ancient and modern history and archaeology respectively. In addition to this, I've had plenty of "disability and reasonable adjustment" questionnaires, which have become the bane of my life, as 3 lines really isn't enough to write down everything that's wrong with me. I'm waiting to hear from Bath Spa and Aberystwyth, which makes me nervous as I really want to go to Bath Spa. Until then, I have to revise for my history exam on the 20th, which should be great fun...
Back to the point of this post, ie my birthday, I had a lovely day. When I woke up I had presents, in the form of some boots, a coat and a tshirt saying "I told you so" to wear to the doctors if necessary to name a few. I went to school, where me and one other person turned up to the lesson, as everyone else was doing an RS retake, which was followed up by a trip to the corner shop to buy my first legal age restricted product (a 98p lighter :L). Me and my mum and sister and some friends went for a meal quite early, where I got the bag I loved, and then visited my grandma for cake and more gifts :), I got a dress and a cheque, and an amazing box made in india, painted with crushed gems and real gold. Its so beautiful, I'll try and post a picture. Then I went to a pub quiz with my dad and his partner, where we came 2nd and won some alcohol :L, and they bought me a new camera for my birthday! As well as a case and a memory card :).
Ultimately, today has been lovely, so many people wishing me a happy birthday, but I have felt so ill and exhausted throughout. Its hard to imagine I suppose if you haven't been ill, but its almost like becoming exhausted by watching a football match. I haven't done much at all, being in the wheelchair, but feel just as exhausted as if I had, and feel as ill as I ever did.
On Saturday evening, I'm going to have my friends over for takeaway and such. I sort of wish I could do something more unusual for my 18th birthday, but I'm too ill to really be able to do much else other than sitting, and if I feel better I can always do something later on in the year...

Christmas

As it is half past midnight, merry christmas one and all! My mother is in her bedroom doing "things" which me and my sister are not allowed to see, and I'm looking forward to the festivities of tomorrow/later even though I'm feeling less than festive.

I'm no scrooge, I love christmas. I reckon its just because its crept up on me so fast, because I've been so preoccupied with school and hospitals that it suddenly came, and "oh! It's christmas eve!"

I've somehow managed to prepare, and have bought all my gifts, but the logistics of the whole thing concerns me slightly, as I am still quite unwell. I'm sure I'll still enjoy it, but its just things like, I can't walk as far, and probably can't eat as much, or veg out on the sofa without moving for too long.

I've been so ill for the majority of this year, that it seems strange to think that this is the first christmas I'm having while being ill. I've had christmas in pain before, but never actually very sick...

My tuscaloosa heart

I've been intending on posting for a few days, but I've been quite ill so I haven't really had the chance.

I fiiinally have another rheumatology appointment this monday coming (13th) where hopefully the doctor might put me on some medication which has more of an effect than the stuff I have at the moment.

I also have an appointment for a 24 hour ECG which I'm happy about, because I've been having these palpitations for a while and quite recently they've felt quite irregular. This obviously concerns me, because apparently Hughes Syndrome (the theory the GP basically poo pooed, because I'd found out information myself) can cause valve problems (which presents as palpitations etc) so in a way I'm hoping it does show up that, so I can prove to these doctors that I know what's going on isn't right...
Only problem with this ECG is that I have a friends 18th birthday meal that evening, so I'll have this heart monitor in my dress. I guess I can just try and pass it off as an unusual necklace...