Sometimes It Is Not Good to Be Me...

I'm scheduling an appointment with the doctor.

They are not open between 1200 - 1300 so I have to call back at 1300. I should be able to get in today, they are really good about not overbooking. At first I figured this is an off-day for me, but the thing that drove the decision to stay home has gotten a lot worse and I am not interested in being out tomorrow.

One of the less pleasant side effects of distrophia myotonia II is the sleeping problems. I can't sleep. I use something to bring sleep on, and it works well usually, but I have been on it for around 5 or 6 years and it is not perfect. This week is a good example.

The problem with not sleeping is two-fold. One, of course, is that I don't function without sleep. Forget I don't function well - I just don't function at all. Most people are not at their best without some kind of sleep; but I am completely stulified by it.

The second problem is that I don't move when I lie in bed not sleeping. It tightens everything up to a severe degree and makes it impossible to get out of bed and do normal things. After not sleeping right since Saturday... well... definitely not good. Saturday night I was on call and did not sleep well. Very normal. Sunday I should have fallen right to sleep, but nothing happened until 2300, so I was short a couple of hours. Monday night I could not wear myself out at all, even on a very empty stomach with stuff to do. Last night? I guess I finally fell asleep around 2130 but then was up too early, not tossing and turning (ha, ha) and my mucles were so stiff that when I bent down to give the cat her breakfast I could not rise at all. Not even a little. I called Luis and he got me up. Embarrassing to say the least.

So I called out, knowing I couldn't walk, couldn't do anything. And now, hours later, everything still tight and aching - especially my hips and buttocks, and legs. Usually when I am bothered by intense pain, it is my back. It hurts, too, but I am becoming a pro at tuning it out.

So as soon as the clock tolls one, I'll call the doctor and set up an appointment.

For whom does the clock toll? It tolls for thee.

I am afraid. I don't know what will happen. I worry sometimes that I will end up in a wheelchair, or worse. I try not to let this crop up in my mind and always remain upbeat and sunny despite this. It won't kill me. At least, it shouldn't. On the other hand, if it takes away my life one muscle at a time, it is not okay. I don't have much muscle now. I need every little bit I can get.

I wish I just had a cold or the flu. It would be better than this. For one thing, it would go away. This, well, this I will have for all my days. And usually... I can live with that.

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