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ME/CFS Crashed = Bedconfined or almost - The Computer is my bedmate
Nov 4, 2009


Although my functioning level is a 0-3 on ME/CFS scales, , which means I can get to the bathroom most often and kitchen, and varying times be able to sit up at computer in livingroom, that doesn't including all the muscle liagment damage in my body, my left side dragging around, dystonia convulsions daily which take energy and cause me to crash more daily as dies walking in my home not  and  the spasmodic dystonia spreading through my body that has become generalzied and forced to walk in my home as I am not in wheelchair accessable home. I have increasingly worsened over the years left like this

However, the laptop was moved into the bedroom last week, I have been holding off for some time as that is where I have mostly existed since 1994, and extensively, sometimes totally since 2003, yes totally, not being able to get to the bathroom. . I am declining again as those do with ME/CFS and FM, however I have the extensive muscle and ligament damage as well as all the rest, oh did I mention Hep C too?.

I will add that prior to the brain/body damage and dystonia's, my fuctioning level was higher but the flucations were so severe that any of the ME/CFS scales I have seen still don't fit, then or now for severity based on how much you can fuction. It seems to ranged between the scales then and now.

The bag I wear around my neck has the little medication (1 - clonzapam) afforded to me and begged for from a neurologist involed for they dystonia's. It's not enough. Fortunatley I have old muscle relaxants to stop the severe spasming throughout my body, especially my spine, dopamine or dopamine antagonist stopped the myocolnus dystonia I have endured for years, and relaxed the muscle and ligmaent damage however, I was cut off that and all doctors in 2004.

 However, since I got ME/CFS I don't tolerate flexeral very well, and take 1/4 - 1/2 a pill. Alcohol will uncramp the spasmodic dystonia's but I am intolerant and suffer tremdously when it has to be used, after, some times nothing else will uncramp it, especially my neck and my sometimes my spine. As for the Norflex that has been put away, it caused my neck and waist to give out repeatedly landing my head on what ever was nearest. My waist gave out today and I haven't taken any muscle relaxants, just the clonazapam.

This is a severe crash from my ME/CFS, although I am crashed every day and have been mostly bedconfined for years, sometimes loosing my calf musles which is extremely painful. The first time was mid-2003. So I keep walking in home abit, but it sets off movement disorders as well and I regularly land on the floor convulsings from dystonia, having a seizure (rare now), or part of my muscles spasmed so badly from the generalized dystonia it lands me on the floor often with convulsions.

Which brings to mind videos to edit. I actually wrote most of this the other day. Yesteday was my first day able to sit up, been showered and clothes changed by private caregiver. It has been a gruesome go and look to be pulling up abit more each day and back out in the living room, even then I am in and out of bed most days.

For fuctioning charts, you can down load a PDF and take to your doctor,a nd keep one yourself, here is a link to one, I have seen others, that I felt worked better as many of us fluctuate between levels, some are permanent.

http://www.cfsviraltreatment.com/energy_index_score/index.html

http://notdoneliving.net/foothold/scales/david-bell#high_2


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Posted: Wednesday November 4, 2009, 9:57 am
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Cheryl Sunshine Benson
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female , committed relationship
Ontario, ONT, Canada
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