I can’t do the things I used to do. It’s definitely stressful (that’s an understatement) and it’s becoming easier and easier to become resentful of this fact. It’s a hard pill to swallow that at the prime age of 22, my body is failing me.
I used to be able to walk across campus of my High School that was bigger than some small colleges. Now, it’s hard to walk around the grocery store. I used to be able to walk to the kitchen without a problem, now when I do, I’m gasping for air. I used to be able to function 6 AM- 10 PM, now I’m lucky if I can make it 5 hours without laying down & taking a nap. I now have to take my wheelchair almost everywhere and ask my friends for help constantly, and I hate every part about it. I hate it so much, that I’m letting it control my life.
It’s easy to ask the question; why me? What did I do to deserve this? The answer is not a damn thing. But I do have to live with it. I have to fight every day; through the pain and fatigue, through the challenges and curveballs. The sick reality of having a progressive disease is that it won’t get better, no matter what I do or try- in fact it will only get worse & harder.
I’m fighting a losing battle. My body is going to betray me, the function of my body is going to weaken, and that’s just something I have to live with. Every. Single. Day. There will always be a little devil in the back of my head saying “today maybe your last day with function of your elbows. Maybe tomorrow you won’t be able to walk at all *evil laugh*”
With all the negative things going on with my body, it’s easy to be resentful. It’s easy to stay in bed and attempt to ignore the pain and on-going struggle. I’d rather get lost in the world of reality tv than try to decipher if there’s a new flare-up, a side effect of the medicine/ disease, or if I died yesterday (Thanks Dr. Google).
Most days I want to cope by staying in bed and ignoring the world. But, I don’t get a choice. Just like you, I have things to accomplish, a to-do list a mile & ½long, 10 loads of laundry, and taking care of my fur babies. I don’t get to sit a wallow in self-pity. Every day I have to fight to accomplish the ever-growing list, but not do too much or I’ll end up in bed for a week. It’s a balance I’ll never be able to figure out. As much as I want to, I can’t accomplish the entire list and I have to take [long] breaks just to maintain a fairly- normal & tolerable pain-level kind of life.
I live to fight and I fight to win. But my body is betraying me. It’s a tougher battle every day, so some days the monster wins. Tomorrow’s a new fight, a fight I’ll hopefully win.