I realized tonight, while sitting on my couch, that I have lost tiny muscle control. Stupid little things I used to be able to do, that I never even thought twice about, seem like the biggest disability.
I know that I’ve been pretty positive about all this. I’ve tried to do everything I could to make people not for sorry for me. I’ve given advice to others, I’ve encouraged them to stay positive. And I’m feeling like the greatest liar right now.
The last few months my injection sites have reacted. It’s not a horrible reaction, annoying really. I can feel the sites and they have all swollen and itch like crazy. Some are red, most just disappeared like the normally do but I can still feel the bumps, they all still hurt, and they all itch horribly. I wake up in the mornings and some days I can barely move. My arms, legs, back, and neck feel like I’m a worn out G.I.Joe figure, most mornings I feel like the little rubber band that holds them together has snapped in me.
Let’s not mention how many times I’ve had to correct a word because I just simply types a whole other word in it’s place. I stop playing video games when I feel my left eye taking less than a second to catch up, SCARES the shit out of me because of the double vision, optic neuritis that was the first visible attack of MS I had. Imagine one eye going off to the side in a world of its’ own, being able to see perfectly through both but not having any control of one. Just kind of trapped in this doubled, overlapping, world.
I dwell on what dying from MS will be like. It the nerves that control my automatic functions will go. Will my heart stop beating, or my lungs stop breathing, or my stomach stop digesting, or my bowels stop excreting? Maybe I’ll start having trouble swallowing and I’ll choke. The possibilities go on and on. It can be really depressing.
But, I can still talk about it. I can face the fears, using the one skill set I never really tapped into during my pre-MS days. I have a short story being published. I wrote a short screenplay, that I hope I’ll be able to re-visit because the characters have a lot more story to tell that couldn’t be jammed into 30 mins.
I live like a 16 year old. I write, watch TV, play video games, and listen to music all day. I used to think that was the best life ever but, it’s not that great when you’re forced to do it or just lay in bed all day looking at the ceiling.