Blogging while disabled: A quick cross-post from my social media

I woke up this morning. This may not, in fact, sound like much of a surprise. I am obviously not in a coma, so technically speaking I wake up every morning. However, to give you some idea of what I mean, let me detail how I woke up yesterday. Yesterday, after drifting in and out…

Welcome!

Welcome, new readers. Your support is greatly appreciated. Please be advised that, due to the way my brain functions, my typical pattern of online presence consists of 1-5 days of intense activity, followed by weeks or even months offline. I am trying to learn to engage on a more regular basis, but my disabilities don't…

Reblog: I identify as tired — Chavisory’s Notebook

This brilliant post describes my life almost perfectly. https://chavisory.wordpress.com/2019/05/27/i-identify-as-tired/ I started wondering something explicitly for the first time recently, and that is: How many autistic kids who fly under the radar for years, or forever, present primarily to non-autistic observers as exhausted?I wonder this as I continue recovering from a recent production, and my main…

Yet Another Essay About Chronic Fatigue

So, here’s the thing about living on the margins of disability with chronic fatigue and brain fog of uncertain etiology (i.e., unexplained symptoms). Have you ever had a bad cold or hay-fever and you had to take a big honkin’ dose of Benadryl or Nyquil one of those other medicines that makes you all spacey…

Being tired is not the same as fatigue.

Yes, this. Very much this.

Ballastexistenz

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…

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