Posting this since it's been a big part of my chronic illness journey, and I'm sure some can relate to it. Maybe it'll even help / inspire someone.
Over the last year or so, I've been coming to grips with this thing called Asperger Syndrome. (which, in case you hadn't heard, has now been lumped in together with Autism Spectrum Disorder....but that's a different discussion). I knew several years ago that I qualify, but hadn't really explored or let sink in, just how much it affects my life. Basically my brain is "wired differently" and while I have some strengths, there are some important things that are a lot more challenging for me than a "neurotypical".
Important things like....
- executive function..... decision making, organizing, task management, multi-step projects, etc. etc.
- filtering information (or other inputs), focusing in on the more important facts / ideas
- self-awareness ..... "just listen to your body", "you'll know if the treatment is helping / if you're herxing", etc. I'm glad if that works for you, but it doesn't so much for me.
- of course social and relational things ....... communicating...
So you can see why understanding my body, working with doctors, navigating vast amounts of (sometimes contradictory) "information", making treatment decisions, following plans, and so on, might be a challenge for me.
Plus then there's the fact that, as my brain processes many of these things differently, it also takes more time and mental energy...... You ever watch someone in a social situation, and you can see that the wheels are turning upstairs (they're not stupid), but they just don't seem to keep up with the flow of the situation? They might be autistic. People are generally just too fast for me.
Then the overload of sensory inputs, information, decisions, people things I don't really intuitively grasp, etc., all add up over time. My life has become less and less structured for me (high school, then college, then working a relatively independent job, then too sick to work) and more complex (more people / options involved, not much help navigating).... I feel like I've been trying to "do life" extremely out of sync with my actual physiological design parameters......square peg in a round hole type stuff. Trying to be someone I'm not. Not having help in the areas I most need it.
Naturally, what they call "autistic burnout" hits. Apparently it's pretty common. I do still think I could well have some chronic infections (or something else) because after 6-1/2 years, you'd think I'd recover from a burnout. But the two major issues seem like they would make each other worse.
Plus I've recently been diagnosed with obstructive sleep apnea, which may or may not be a newer development. I am a few years older now and I've put on 20 lbs this year, after all. When my PCP was sending me to a sleep doc, I almost skipped out because I've been through all of that before........well, I'm glad I didn't!
(I have to say, if you have any hint at all that you may have apnea, get checked out. Yes, that includes snoring.... big warning sign. Also, there are apneas and hypopneas too.... partial cut-off of air. And something called Upper Airway Restriction Syndrome which is similar but you don't wake up fully, it just ruins your sleep without you knowing how. In any case, if you don't wake up rested, see a sleep doc if at all possible.)
The good news is that, now that I know about
these two big problems, I have been able to start working on them. Even understanding the Asperger's has been a huge relief. More work is needed there but I have something to work on. And I'm trying to use a CPAP and am waiting on an oral appliance (hold the jaw
open / tongue forward) for the OSA. So I'm very thankful for all of that.
Anyway, if you've read this far, thanks! I feel better, and like say, maybe it's helpful for someone else.