Clamoring for escapism

I find myself writing in memory, reliving and sharing, having discovered a method effective in focusing myself on anything other than my condition. I'd label it escapism except that there is no escaping reality as my symptoms continue to manifest themselves. I need to be careful when making travel plans, mindful of the increasing difficulties ahead. As an example, sleeping conditions may pose a problem. I now sleep in a hospital bed replete with elevation controls and tubular side rails. Contorting the mattress properly helps combat my self labeled "mobility terror", (a term my physical therapist found amusing) while the side rails provide security and leverage when attempting to roll onto my side. Currently, my favorite sleeping position is on my right, one arm wrapped around the tubing, the other against my pillow, fingers forced straight by the weight of my head. My face presses against the rail, not unlike a prisoner peering from his jail cell, though unlike him, I feel security within my confines. After a while, my shoulder and hip wake me, forcing a rotation to my back, a couple full body convulsions where I find myself measuring the severity, trying to control the tension enough to prevent blowing out a calf, hamstring or thigh. Finally I contort myself back into my comfort zone and fall asleep for another spell. Wash, rinse, repeat. All night long. If you're wondering where Amy is, she sleeps on a cot with an inflatable mattress next to me. She sleeps with me but not with me. The only spooning I get is when she feeds me yogurt in bed.

When I wake up in the morning, my left hand has slipped from under my head and is clawed shut, my arm bent and pressing on my chest. My right has begun a similar process. If I open my right hand and use it to force open my left, hen my fingers are straightened, a semblance of relief comes over me. I can't explain it, but my occupational therapist was familiar with the reaction and suggested a splint to keep my fingers straight. I will be wearing one soon.

None of this nonsense is overly painful for me physically but the emotional toll is exhausting. Losing the ability to walk is bad enough, all this other shit makes my condition nearly intolerable. I used to fear seeing someone I knew as my disabilities became more obvious. I thought I'd feel less embarrassed around strangers. I was wrong.