Being tired is not the same as fatigue.

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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.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

4 responses »

  1. Thank you, thank you, thank you so much for these words.

    So often, I forget what it feels like not to ache in every bone. What it feels like not to struggle, hour by hour, to keep my eyes open, my body upright, my brain functioning, when all I want to do is melt down into a fetal-curled ball of whimpering self.

    And I judge myself for it. It’s hard when you don’t even have a major diagnosis (lupus! MS! thyroid dysfunction!) to fall back on. I read about cancer patients undergoing chemo who can do more in a day than I can, and I wonder in shame what it feels like to have that kind of energy, drive, and focus. To have an internal model of what “healthy” feels like that I could strive to regain (I’ve had chronic fatigue since I was a teen, and I no longer remember what it felt like to live without it).

    Often, I don’t even notice how fatigued I am, how sore. I think the way I feel is “normal” until a (rare) dose of narcotics makes me feel like I can fly, simply because I can get up and walk across the room without having to brace myself for the experience first. And then my mind boggles to think how much I could accomplish if I felt that way every day.

    No one understands the experience of chronic fatigue unless they have lived with it. I, too, wish they could.

    Also, I’m thrilled to hear that you found a treatment that is helping you so much!

  2. Hello from a fellow human who is also constantly frustrated that you can’t share experiences with people! I really like your blog. :)

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