Saturday, 30 June 2012

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.