What’s beyond fatigue?

September 12, 2014

Regular readers might have noticed that I haven’t been around much the last few weeks. It’s pretty obvious from the “Posts by Date” in the column to the right, anyway.9-12-2014 4-32-39 PM

Sometimes I miss writing because I’m busy doing fun things. Sometimes it’s because I don’t have anything in particular that I want to write about. But far too often, it’s because I just don’t feel up to writing.

I’ve wanted to write several times this week. But those topics have to wait because I’m just too tired to do anything productive these days. Now it’s 4:38pm and I just shut off the tv after watching for several hours. I feel well enough to sit at my desk and type these words. But I don’t know how long it will last.

And I struggle to explain this to friends who don’t have chronic illnesses because I don’t know how to describe it. I’ve said it before and I’ll say it again: we don’t have the vocabulary we need to describe these feelings. Sometimes I don’t know how to explain different kinds of pain or different kinds of nausea. This time I don’t know how to explain this feel of being so exhausted that just having a conversation with someone is tiring.

I canceled a date tonight. He was very sweet about it. He offered to bring takeout and a movie to my place so I wouldn’t have to do anything. But he doesn’t understand – we’ve only been out a few times, so I’d feel the need to talk to him, and talking would just take too much effort. How do you explain that to someone who’s never felt that kind of exhaustion? How do you explain the feeling that picking up a remote control is exhausting? How do you explain that reading takes too much energy, because even if someone else holds up the book, you just don’t have the energy left to think?

I felt this way in the past, but when things improved, I really hoped I’d never feel this way again. No such luck. Now, as I’ve felt the fatigue getting worse and worse over the the past few weeks, I’m left to wonder: what’s beyond this level of fatigue? What happens if I continue to feel worse? Somehow, I think I don’t want to know.


When I can’t trust my feelings

September 8, 2014

I’ve noticed a pattern, and I don’t like it.

It starts out when I’m in a lot of pain or extra tired or unusually weak or suffering from some other symptom in the extreme. Sometimes I’m upset or stressed out, sometimes I’m not emotional at all. After all, I’ve been dealing with these symptoms for a long time. Sometimes I’m fairly zen about it. Sometimes not. The pattern plays out either way.

The details vary, but something or other upsets me: a friend’s comment, a lover’s actions, a parent’s advice…. something. I respond by explaining why they upset me. I think I’m being reasonable. I always address issues head-on. Only instead of the usual productive conversation, they’re hurt. They’re upset. They can’t understand why I’m so sad/angry/hurt. Their reaction is just wrong! We talk. I feel bad and I don’t know why. I apologize. And eventually I have to admit that I’m not seeing things clearly.

This happened again today. It happened 2 days ago, also. It happened several months ago. It’s happened sporadically over the years. And I don’t know how to stop it. Because I don’t know that I’m not seeing things clearly until after I say something that someone else finds hurtful or offensive. I don’t realize it until it’s too late.

Until now, the people I care about have been very forgiving. They seem to understand that sometimes I’m just not myself. They know that whatever it is, it’s not intentional. They know that when I feel better, I return to myself. They know that even when I seem irrational, I care about them. But I wonder, will something happen some day when they won’t forgive me? Will it go too far?

This has happened twice in my current flare, so I know how to be extra careful. But what happens during the next flare? Or the one after that? Who will I hurt next? Who will I accuse of doing something terrible, when they were only trying to help me? I know it will happen, sooner or later. I just wish I knew how to stop it.