Due to my inability to walk at all, struggling with heat intolerance, back spasm, feet and hand numbness, etc, etc I often find myself struggling to get through the day. On top of it all I feel like I have the flu most days, with the room spinning and nausea like I ate cat shit or something. Some days it is easier to overcome than others, depending on what the cat ate. Sure I am thankful for what I can do, but it is easy to get stuck on what I cannot do. This exercise can be emotionally taxing, at least for me. I have always been a hands on guy. I loved cutting the grass, shoveling snow, tinkering in the garage, cleaning, organizing, perfecting etc. Recently I have lost so much, and it just seems to keep coming. I had to make a monumental decision this week, one I would never ever have imagined. I applied for disability, which technically is about six months away, but the reality is its imminence, and it just plain sucks.
I am not going to make any excuses or compare horrendous diseases, but now it has finally dawned on me why friends and Dr's the like always seemed so shock that I was working. It seemed more times than not the Dr would ask me if I was still working, and I was always puzzled why they would ask such a thing, until just recently, when my opponent (MS) has become so powerful that mental and physical fortitude just are not enough to work. The incredible discomfort, pain, and the like of this bitch has put me in a very precarious position. It's tough to work from bed, and crippling fatigue and pain are just too overwhelming. Forgive me if this post is all over the place, I seem to be having difficulty articulating the devastation I am experiencing.
So back to the pow thing. Imagine a giant cage, big enough for a person, where the body is locked in completely, but the head sits on top of the cage free to move around, swivel, think, and communicate. That's what paralysis can feel like. Every once in a while you unlock the cage and you are free to move around, but considering you are stiff and in pain your mobility is limited. You get in the wheelchair or scooter for a half hour or so then right back to laying down. Its like being in a cell, shackled to a steel ball, a caged bird, it is frustrating, upsetting, indescribable, horrifying.
Maybe pow is too strong of an analogy, but it is the best I could think of. Sure I can read a book, do a crossword, read the paper, but man I hate that stuff. I am a figety guy, I need to get up, change the scenery, start a project, whatever, and this ms bullshit is not conducive to my lifestyle, and sure tell me to accept and adapt but try for one day disrupting your routine and sit in a chair for 12 hours, then tell me to adapt and accept. I know it's the only option, but it's like ramming your head into a wall over and over, it's senseless.
The true difficuly of owning up to an incurable disease is accepting that there are not answers, merely inadequate symptom management, Every day is an exercise in futility, fortitude, patience, and discipline. Today and every day I SALUTE all the prisoners of their own wars. May you have the strength to wake up each day and keep going, knowing what's ahaead of you, and may you endure, overcome, adapt, accept, and handle the adversity, giving thanks for any good that comes your way no matter how small or how insignificant it may be. That ability is genuine greatness...