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.


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  2. In reading this I feel as though I am reading my own written story of my battle with CRPS induced dystonia. It's truly shocking how similar our stories are. I even have the hand that won't open, been closed since Dec 29, 2011. The body movements, joint contortions, legs, back, eyes, jaw, & mouth- this is the same story that I have endured. I was even once told by an onlooked that it looked like something from the exorcist. I use the same meds, with baclofen and diazepam, & my dr recently added Keppra to the mix. I've never met someone who has had similar spasms/tremors to me, & I cannot express in words how much I feel for you. I wish you the best in everything and please, if you ever want to talk, I really understand your struggle. Contact me through this medium or @CRPSadvocate on twitter. I'm always here to talk or just listen. Keep fighting Becca and please stay strong. You will be in my thoughts and prayers.

  3. I'm trying to absorb this information and come up with a statement of love, encouragement and hope. It's a helpless feeling from so many miles away--but my prayers and hugs are with you. All I can say is that God himself put your name on my mind so many days recently--and I was already praying for you especially. Once my mom had a reaction to some medicine that was very dystonia-like--so I may be biased as to making sure the doctors eliminate that possibility. Please keep us all updated as you can, and know our family is with you in heart. Fight the good fight. Love and hugs

  4. While my country celebrates independence from England today--I celebrate knowing you, Becca, from across the pond and nearly 3,000 miles more of America. In all your bravery and "realness" I am so happy my family and I have come to know you. It helps everything my sons have gone through and are going through--and now it's time we really buckle down and pray for you. I pray that today is a better day than yesterday was, and that tomorrow will be better than today.
    Blessings :)

  5. OMG Becca reading your story is like listening to my son he suffers with CRPS and chronic spasms just like yourself my son suffers with the spasms every few minutes i have not come across anyone quite like him before but now i have read your story i don't feel that is alone,he is mostly bed bound due to the savarity of his condition like yourself he's a lovely person and also suffers with anxiety problems, my thoughts are with you, we live in nottingham not to far from yourself. tracy x

  6. Love you Becca!
    Hoping for an update when you or family feel up to it!!