A year with tiny steps.

(Just a note, I've been writing this since about the 4th of July so it's quite some out of sync now)
A year is a funny thing - it feels long but passes super quickly at the same time. There's a lot that changes in a year.

This time last year I had been in hospital for five days already into what would be a three week stay. I had no use of my right hand (which was stuck in a fist) and my body was pulling itself into peculiar positions that were so contortionistic that they were dubbed "gymspastics" within our house. My whole body (or near enough) cramped/spasmed for up to two hours at a time between two and five times a day. This was not fun.

 To be honest I was on such a huge amount of medication that I cannot remember most of this, just a haze with a few extremely vivid snapshots. All sorts of things were investigated as I spasmed away in my bed - mostly the doctors just scratched their heads and increased muscle relaxants while nurses an my family watched on concerned. A few members of staff stand out from this time some for the loveliest of reasons - some not so much - but I'm sure I've aired my gripes about them plenty.

There was a nurse on the AMU (named Leanne I think), my first ward - one of the ones who had treated me on a previous admission who gave the doctors what for when they did not give me chance to speak or did not even try to understand CRPS. She listened when I explained and sat with me through spasms and tears. I'm sure other nurses on that ward did likewise but she stands out.

There was a student nurse, on the second ward, (Seb- whose sister I know) who sat with me an hour and a half past the end of her shift when I was having difficulty breathing which sparked a panic attack. She cooled my head with wet towelly things and helped calm my mind with soft hands and calm patience.
And then there's my pain doctor - The lovely man who educated the ward staff about CRPS and chronic pain, who kept dropping in on me and thinking up ideas despite my technically not being in his care and his working hours being full to the brim already.

This year during the same span as I was in hospital last year I sat exams, baked, read and pottered about in the garden rather than lay in bed in huge pain. I was at a high physically rather than an extreme low. I had next to no panic attacks rather than at least one a day. And I was happy.

A year can bring huge changes, a comparison between now and then shows that the little tiny steps towards health made every day are really really worth it despite the difficulty in doing them.

Spasmic fantastic.

For the past month my right had has been a fist, whilst this was not fun I can live with that, thumbs can be used as hooks and pointers - if you're lucky you can slot in things like cutlery and pens. Far far more disruptive has been the full body spasms that have pulled me into positions far more usual for contortionists or gymnasts than tired and pained teens. It's been rather playfully termed in our house doing my "gymspastics".

Twisted limbs, joints about to dislocate, back arches, stomach pulls me forward, legs assume the "smear test" position, an unsupportive and strangled neck, eyes that wont open, lips that wont move, jaws that lock and teeth that bite into lips cheeks and tongue. Communication is strange garbled strangled words,  subdo-signing, blinking and strained eye movements.
Well, what is it that's happening?? What can be done to help? Answer who knows. It appears to be some sort of dystonia, this may be to do witth my CRPS it may be something new. So after 3 weeks of increasing baclofen and diazepam i found myselfvon Saturday morning in a hospital bed on AMU having arrived at A&E at 10.30 Friday night 1.5 hours with no spasm and having around three hours of light sleep

I wrote that early hours of Saturday morning It's now Monday night running up to 11pm. I've been turfed to another ward as space was needed, I feel distinctly less safe here - staffing levels are lower and the nurse on tonight is pretty shirty. i can feel anxiety creeping ever higher. Visiting times are shorter too. On my bay is 5 elderly ladies and me - none look close to death but none particularly healthy.

 In other fantastic news both my pain Dr who is the hospital's main crps man and the neurologist are on annual leav which in short means no one has any idea what to do with me. The medication levels I'm on to reduce severity of spasms is not safe at home but I definitely would not be safe at home if they reduced it as the spasms are still intense. As the ward staff noticed last night when they tried not giving me any diazepam* it was a spectacular spasm but with a caring nurse and the one emergency dose I had prescribed we organised me onto a comfortable enough position so I could sleep - but still in spasm.

 I wrote out a note for the staff yesterday nice and patronising like the ones they write about the patients. It's attatched to the blog somewhere Today is spasmed still. Mum was here to help. No idea what they're planning on doing with me. Pain is high high high.

 *my drs are anxious about the amount of meds I'm taking and the diazepam is at the "we're a little concerned about this" doseage. On Saturday morning they put a 2 day review on it which to any sane person means review Monday morning but apparently in Dr speak means review sunday night at 10pm where there's not a Dr to be seen. I'm now on a 1 day review which probably means they won't be giving me a dose in the morning like theyre supposed to until a doctor turns up.