I’ve talked about multiple sclerosis before here on my blog, but I usually try really hard to just go on with life as normal as I can, and not complain about the hand I’ve been dealt. The problem is, I can only do that for so long, and I don’t really have a lot of constructive outlets – so I use my blog. This post won’t be about gaming, but is more just a general unloading.
A lot of my days are great. I have a steady constant pain that doesn’t go away, but I’ve learned to deal with it. The pain makes me a bit short tempered, pretty tired, but I’m able to function for the most part. This is my life the majority of the time. Let us put the pain at about a two on a scale of one to ten.
Then there are relapses, which is what I have going on right now for the third day. The pain in my hands and feet is so bad that my hands bend into a claw shape and just ache like they’re on fire constantly. It’s so bad I can’t carry anything heavy because I’m afraid I might drop it. Typing hurts. Just sitting doing nothing hurts. I can’t knit or cross stitch and I do my best not to game because resting my hands on my keyboard / keyboard rest – hurts. Using my mouse hurts. It’s a solid 8-9 on my pain chart and let me tell you, my pain threshold is really high. I have a tattoo and it didn’t even bother me to have it done. My husband jokes all of the time because I take scalding hot showers and never feel it, but come out a blistered red. When I say my hands and feet are hurting, it means they’re really hurting.
People can’t SEE this pain though. They just have my word to go by. I have two young kids and a husband who works shift work so I can’t just give up. I have to power through the days and do my best, which means making sure meals are done and the kids don’t hurt one another. Talking on twitter or doing a blog post is usually dictated and is my only real means of escape because we’re at an isolated post, and I can’t game (another reason I play BDO, where I can AFK or just stare at the screen and make progress). Tylenol and other medications don’t help. There’s no inflammation, it’s from lesions sitting on certain sections of my brain and spine, telling my body I’m in dire pain and triggering all my pain nodules. I’ve tried cannabis to ease symptoms but it doesn’t make the pain go away, it just makes me care less and I can’t function like that – and I have to function. I have to be able to take care of my family.
Some days, like today, I’m really angry. I’m frustrated that I can’t do what I want to do. That I can’t use a can opener unless it’s electric. That everyone around me is so loud when I’m just trying not to drown in pain and I can’t focus because MS takes that dignity away from me. I slur my words and just get so frustrated so easily because I’m trying to balance everything and function like a normal human being under insane conditions. Let us add the fact that I have a child with autism and a learning disability, and a second child on top of that, at an isolated post – and well, you have a small window into how life is going for me lately. I don’t like to complain or whine to people because I know that makes it even harder to be friends with me, and I have few friends. No one wants to be around a sad person all of the time. No one wants to hear them moan about how much pain they’re in each day. People don’t like that. Don’t even pretend they do, because I know otherwise. I’ve experienced it.
I’m just so tired. I want a break. I want a single day without all of the pain and confusion and anger that I constantly feel. I haven’t been away from the kids for more than an hour or two since our first was born five years ago. I can’t drive. I feel like a prisoner and it’s not anyone’s fault that this is life. I keep trying to make it better, trying to change it, trying to be a better person – over and over. Today, it’s just not working.
Thank you for listening.