As I mentioned Monday, I woke up that day feeling very old. Aches and pains, and just plain yuck. The feeling old part went away after one day, and I did exercise Wednesday, but that was the only day I did anything active. Sometimes, this old body just needs a break. When I have one of these “feeling old” weeks, I search the Internet for information or something to let me know I’m not the only who has these bad days.
I found a blog the other day that I’m going to start to follow. There’s not a whole lot of blogs out there about people living with cerebral palsy (well I should say active blogs about adults living with CP), but I found one, called "In my eyes my life life with cerebral palsy" that I’m going to keep an eye on. Laura’s posts are short, but she’s said various things in her posts that have struck a chord with me. I have good days and I have bad days with my balance. I thought my bad days were due to something I was doing wrong, or I wasn’t in the right mindset. I can’t find the exact quote now, but she says something like you don’t know how your body will feel from one day to the next. I totally agree. It’s a complete crap shoot. Will I be able to stand up and feel like I won’t fall right back down again? Will I be able to use my walker easily today if at all, or will I need the chair?
When I have a bad balance day, I tell myself that my confidence is down. That’s true I guess somewhat, but not really. Sometimes there’s no logical reason for me to have a bad balance day. I’ll be doing my thing like normal, and all of a sudden my body will glitch, and I’ll almost fall. It’s hard to explain, but something just doesn’t feel right when I move. Then one day, it will feel "normal" again.
I still don’t know what event or circumstance happened when I was 12 or 13 years old, when one day I could stand in one spot without needing to hold on to anything, to the very next day needing to hold onto something or else I’d be on my butt in 2 seconds flat. No clue.
Laura said in one of her blog posts, “A lot of my friends don’t like to acknowledge their cerebral palsy…” I always feel very strange when I say “I have cerebral palsy.” Those words don’t sound natural. I don’t feel any different than any other person. I don’t think any differently than anyone else. Also, my case of CP isn’t as bad or as severe as most. I have control (for the most part) of my legs, and my arms. I can talk fine (with a stutter that drives me nuts), and I can take care of myself in terms of personal hygiene. I just have bad balance. That’s what I usually say, “I have bad balance.” Those words seem more natural to me for some reason.
Cerebral palsy technically does not get worse as a person gets older. To a point that’s true. The brain damage does not get worse, but the effects on the body do. It gets harder to make your legs do what you want them do to when you get older. Some days my legs just don’t want to work at all, but I manage to force them to. I read somewhere just the other day (not sure where now) that those people who have CP and can walk, 75% of those people end up in a wheel chair by age 25 or 30 due to fatigue. I don’t know if that fact is accurate or not, but it does make sense to me. I remember starting high school and my body felt OK, but by my senior year, I was having more aches and pains, and it was harder to walk around school (had a lot more falls that year including one fall down the stairs). I didn’t voice this to anyone since I just thought it was a “confidence” issue.
I’m not saying I don’t have any confidence issues. I most certainly do. But on those really bad days, it’s more of a physical issue than a mental one. That messes with the mind a lot. You have a bad day, and it makes your confidence drop. It’s hard to climb out of that mind set. Your balance comes back for a few days, your confidence goes up. Once it’s up, wham….you get knocked back down again. It gets tiring to keep battling the confidence roller coaster, but you do. It feels like you’re a punching bag for some twisted person looking for fun.
I’m not explaining this clearly I don’t think, but what it comes down to is, I put too much pressure on myself to “fix” my cerebral palsy. It can’t be fixed. I have to roll with the punches. I’ve said this before, and I’m trying to stop thinking this, but I feel like if I don’t walk like I did when I was a kid, I’ll be letting people down. My parents and my sister especially, but also my husband. He’s a wonderful help, but he tends to say what my sister used to say…”It’s all in your head”. And yes, sometimes it is all in my head. But other times, not so much.
Once you lose the ability to do something physically, is it possible to regain that ability? I don’t know. I’ve been trying to get back to walking like I did when I was kid for a long time now, and I really don’t know if that’s possible. Am I destined to have to struggle with moving my legs on bad days? What is it going to be like 10 years from now. If it’s hard now, how much harder is it going to get? Maybe I’m kidding myself with wanting to walk on my own again.
I’m not giving up though. I’ll keep pushing on, one way or another. I’ve always said I don’t want to go on medication for my CP, but I might get me some hot chocolate and rum tonight. Hehehe. It’s been a while.
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