8:14pm March 12, 2014

Being tired is not the same as clinical fatigue.

youneedacat:

I know I’ve mentioned this in a few posts but I wanted to give it its own post, because it’s incredibly important for able-bodied people, and for disabled people who are otherwise fit and healthy, to understand this.

Being tired, even being exhausted, is not the same as the kind of fatigue that people with chronic illnesses are dealing with day to day. And I knew this, intellectually. But after going on steroids to treat adrenal insufficiency, and getting some stamina back, it’s like a revelation.

I haven’t really had much in the way of clinical fatigue since I got on steroids. I only feel it on my bad days, and my bad days aren’t all that bad compared to how they used to be.

I do get tired. I get exhausted. But even at my most exhausted it’s not the same.

Fatigue, when talking about in a medical sense, is more than exhaustion. It’s a sense that everything is drained from your body. You don’t just feel tired, you feel sick. Your body doesn’t work right.

I wish I could just upload the feeling into people’s heads so they’d understand it’s not the same.

Like, take the feeling of clinical fatigue, wrap it in a package, and hand it to all the people who think that chronically ill people are just lazy.

And then take the feeling of ordinary tiredness without clinical fatigue, wrap that up in a package, and hand it out to people with chronic illness so they’ll remember that they’re not just lazy or tired.

Because that’s so hard to remember in the thick of things. It’s easy to think that you’re only dealing with the kind of tiredness everyone else gets. It’s easy to start believing that you’re just not trying hard enough.

But if you ever get the chance to try a treatment that works, and works big time, and alleviates a good chunk of that fatigue. Then it’s crystal clear that if anything you were working harder than most people do, and for less results.

Because that’s what keeps coming back to me. So many things are so easy now. I was working harder than I’ve ever worked in my life, and getting nowhere. And now I’m barely working at all in comparison, and I’m improving every day.

So this understanding is important for healthy people because they often expect too much of us. But it’s also important for sick people because we expect too much of ourselves.

Also worth noting: it’s good to have a doctor who will stand over you with a stick and keep you from burning yourself right back down to bare rock as soon as you start to feel better. Because the other thing fatigue means is that you’ve drained all your reserves and have none left. You don’t go from okay to tired to really tired to hauling yourself along to collapse. You go straight from okay to collapse, with very little warning.

Don’t push yourself, and don’t let anyone else push you while you’re building the reserves back up. Even though it’s frustrating as all fuck and feels like a betrayal by your body if you ever used to do anything physically active. Your body tried, as long as it possibly could, tried so long and hard that functions like “thinking” and “moving” shut down just to keep you alive. Cut yourself both some slack while the emergency tanks fill up again.

Thank you.

It’s very hard to remember that, because now that I can exercise, it’s all I can do not to constantly get up and exercise throughout the entire day.

I’ve already injured a knee by exercising in a way my body wasn’t ready for. (I have hypermobile joints and my muscles are not anywhere near strong enough to give the extra support those joints need when they’re working.)

And I’m still not sure to what extent my neuromuscular problems are going to kick in, or when they’ll kick in if they do. Because at minimum, they were clearly massively made worse by the adrenal insufficiency. And at most, they were barely there at all without the adrenal insufficiency to make them really obvious. Plus I’m on Mestinon which seems to make the muscle weakness problem diminish a lot. So it’s very hard to tell if and when, that will become an issue.

But exercise makes me feel so good that I really have to stop myself from doing it. Like if I could, I would be getting up and doing between twenty and forty jumping jacks every ten minutes or so throughout the entire day. The knee injury has messed up that plan (although I still plan to do some at my doctor’s appointment tomorrow, just to see the look on the guy’s face – that’s worth some extra pain). So now I’m doing about 15 minutes of seated aerobics a few times a day, and constantly wanting to do more. And it’s good to have a reminder to slow down.

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