Friday, February 06, 2015

I'm exhausted, but it could be worse.

I'm exhausted a lot.

Which is no surprise, because I've pretty much been exhausted for, oh well, for ever at this point.

But it could be worse.

I know this because it has been worse. For that I'm grateful.

I'm still learning about chronic fatigue syndrome. I get flare-ups - days in which I'm not sure I have enough energy to get out of bed, let alone get things done.

But it's not as bad as it's been.

I'm sleeping better. The sleeping pills I took worked like they were supposed to! I took them for a few weeks. I started getting tired earlier, and after 3/4ish weeks, I didn't need them anymore.

I go to bed almost every night before midnight, without taking anything.

I know, I know, for some of you midnight is really late. For me, it's a gift. I was going to be bed before at around 3 to 4am. Sometimes I didn't even go to bed until after the sun rose in the morning, so when I tell you that I am THRILLED to be going to bed at 11:30, reading a bit, and out by midnight, I am not exaggerating.

Would a 10pm bedtime or an 11pm bedtime be ever better, probably, but I'm not going to split hairs. As long as I can get to bed by midnight, I'm happy. If I can go to sleep on the same day that I last woke up on, that's a good day.

Getting 7 hours straight of sleep a night is awesome and I love it.

I still have to nap most days. And that's okay.

I am definitely much more productive on a good day. Of course, I'm next to useless on a bad day.

The steroids I took have kept the migraines at bay, but they are coming back. Boo. I was crossing my fingers that they wouldn't but was warned that it would probably work for about 3 months. Well, I got about 6 weeks, and so that is what it is!

I am assuming (but don't know) that my iron levels are still low. But I won't get it retested for a while. Given there's not much we can do, there's no need to check it too often.

My shoulder and chest are better and aside for one more check-in with the occupational therapist and I'm strengthening things up at home, which is good.

There's a part of me that still wishes for things to be even better, for less pain, more energy, but I'm also trying really hard to remind myself that today is today. It can't be what yesterday was (or 300 yesterday's ago or 1000 yesterday's ago).

Because really, things are (mostly) going well right now. I hope saying that doesn't jinx me. The rest of winter and spring should be pretty boring for me - there is nothing major coming up, which I'll take - no surgery, no procedure, no therapy. Of course, we all know too well that can change quickly, but I hope it won't. Granny has a procedure coming up (nothing major) and I want to be there to support her as much as possible.

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