Everyday Life

Every day is different. It's impossible to predict how I might feel when I awake in the morning. Well, I can expect dizziness and balance difficulties from the gabapentin, but otherwise every day is a crapshoot.

Oh, I thought of another symptom I've been having. Difficulty spelling! I'm a fantastic speller. I've never needed spell check or have looked up a word in the dictionary until recently. Also, I make more typos that are real words. Like typing work instead of word. I think I catch them all, although sometimes they get through. I sometimes see them when people quote my email in their reply.

Sometimes I have good days where I can so most of my normal activities. I need more rest. I sit down whenever I can, because I know I'll run out of energy at some point. I don't want it to be while I'm at work.

The haywire-nerve tingles aren't bad all day now, thanks to my beloved gabapentin.

I think the going-numb tingles are also better on the gabapentin, although they do still happen in my legs sometimes. Not much, and not severe.

Sometimes I feel vibrations. I first felt that about two years ago. Again, it happened off and on, maybe every six months or so. It will happen often for a while (days? weeks?) then go away for months. It's weird and kind of annoying but not painful. It's usually in my legs. I thought my phone was vibrating, but it wasn't in my pocket. At this moment, the back of my right upper thigh is vibrating.

Sometimes my muscles twitch. Again, weird and kind of annoying but not painful.

Muscle cramps stink. No two ways about it. They can get pretty painful. I've already described them.

Weakness is a major issue. Today I kept having to stop interpreting, because my arm was so tired it felt sore. After five minutes. That is definitely not normal. I'm having a problem with my right arm right now, because of interpreting (I'm right handed: the dominant arm works much harder in ASL) and because I'm typing. But I really want to get this out. Oh, and because I mashed a potato when I was making lunch. Mashing a potato takes a lot out of me.

Sometimes I'm too weak to walk more than a few feet.

The key to managing my problems is conserving energy. If I knew I had to go to work, whether my regular job or my part-time freelance interpreting job, there's no way I would be typing this blog. I would not spend my energy on this, because I would need it for work. I do not have enough energy for all the things I usually do. I would estimate that I have about a third of my usual store of energy.

With all of the accommodations that I'm making for my disability (which is how I see it--it's limiting my ability), I'm functioning okay. I just wouldn't want it to get any worse. Obviously I want it to get better. But my fear is that it will worsen. I do not want to lose my ability to drive. I also do not want to lose my cognitive abilities. If I'm physically weaker... I guess that's not the worst thing. Pain is something I can handle. I've had worse pain. Gallbladder attacks and kidney stone, remember? I know things could be worse in the pain department. If gallbladder and kidney spasms are a 10 (and they are), I would say that these muscle cramps get up to an 8 occasionally a 9. But I regularly have abdominal pain that gets to an 8 and back pain that gets to a 9. I can deal with pain.

Pain is not the end of the world. Forgetting what I'm doing, losing my train of thought, and not being able to think of a word I want to say are. Although I would rate my cognitive issues as maybe a 4, they are more bothersome to me. They affect me more, for whatever reason. Maybe because a good bit of who I am is tied to my intellect. If I'm not smart, I don't know who I am.