One of my favorite phrases is “I am so sick and tired of feeling sick and tired”, because it means exactly how it sounds. And it’s true - I really am tired of being not only sick, but tired as well.
Now, most people with any sort of chronic autoimmune illness will absolutely tell you that it’s hard to convey the type of pain that they go through, however that is only half of the issue. The other half is the lethargy that comes with it too! This is even more difficult in my experience to explain, and here is why:
At the core of any autoimmune condition, your immune system becomes a bit too overeager, and starts attacking you. This of course causes the symptoms of said condition, however if you recall the last time you may have had a fever, you probably remember feeling weakened. I’m intentionally using the word weakened here rather than “tired”, as to most people if you say tired, they think “tired” as in sleepy - but the feeling isn’t the same.
Okay, maybe you either haven’t been extremely sick in a while, or you just don’t remember what that felt like (I certainly wouldn’t blame you for not “holding on” to that feeling) - let’s try a different approach instead:
Go ahead and pick any muscle (say, your core muscles, or a leg, or an arm, etc), flex, and hold it. Try to hold it as long as you can. While holding it, try going back to the beginning of this post and start reading it again. If you get back to this point, start again. Then again, and again, and again.
Eventually, you’re going to start feeling “tired” - maybe a small amount of pain depending on the muscle you were flexing, but probably what happened is your concentration started to break, and whichever muscle you were flexing started to tremor as your ability to hold it in that flexed state started to wane. And then you let go.
Unfortunately, you can’t just simply “let go” of a chronic condition.
Now imagine that you had to go through your whole day in that state. You can probably see how going through this day, after day, after day - starts to get old.
The end result is that it really starts to feel like you’re constantly in this “Low Battery” state - you could get a full 8 hours of sleep without any interruption, and still wake up feeling weakened. Your immune system derives the energy it uses to attack itself, from… well, yourself. This means that as you do the “normal” things to recharge, that energy just gets used to put you back into that state. Oh, and don’t forget - most people with an autoimmune condition (especially if it’s GI based) tend to have all sorts of nutrient and vitamin deficiencies, so you weren’t capable of reaching a “full battery” either way.
So you start the day with say, at 75% (and that’s being extremely generous here - for me it’s more like 50% on a good day), and before you even start doing anything (including getting out of bed) those reserves start to drain, no matter what you do. Every action you take (or even taking no action) brings that number closer and closer to absolute zero.
By the time I’ve started my shift at work (which is generally no longer than four hours long), I’m already critically low - this is in spite of the fact that I try not to do much before my work shift for the day. I don’t do any hobbies, I don’t go out for errands (unless I really have to) - hell, I usually don’t even eat before work either. Why? Because by doing so I’d risk triggering a flare-up that could end up knocking me out of commission for the day. I might have something very lightweight, but certainly not anything near what people would consider an actual breakfast/lunch/dinner.
Realistically, by the time I’ve ended my work shift, I’m at the Last 10% of my reserves. Can you imagine spending a whole day doing nothing, then only going to work for a few hours (I work from home too - so no commute times), and then being left with basically nothing?
I like programming, I like playing games, I like hanging out with friends - but it is incredibly difficult to do anything further when you have nothing left. How about cooking a nice meal? In my world, that looks like this: You hope you can somehow will yourself to spend the last bit of your resources preparing and actually cooking that meal… only then for it to probably then triggering a flare-up, leaving you in lots of pain. It’s tougher to endure the pain when you don’t have any energy left. Each and every single thing that I do comes at a very real cost. It’s difficult to hold back from snapping at people when someone says “Why didn’t you do
$SOMETHING_RANDOM_HERE? It would’ve only taken you 15 minutes to do!”…
This takes a lot out of you to endure each. and. every. single. day. With no end in sight either. Others may admire your strength, but often I do not feel strong. If there was a way out of this loop, I wouldn’t hesitate to take it. I’m told this does not negate the sentiment of me being strong, but I guess it’s difficult for me to feel strong when I constantly feel so weak. It is reminiscient of feeling like you’ve done everything right, only for it to always end wrong.
… I should also point out, that this doesn’t actually even include fighting the physical pain. That in and of itself is a whole other gauntlet, and there truly are no words to describe just how horrible it is to experience both of these at the same time (especially since the two tend to cause a negative feedback loop - one worsens the other, which in turn then makes the other worse, causing the other to worsen, ad nauseam).
In a perfect world, I’d never go past 0% - but unfortunately I often do go into the negatives, and in a way, end up “in debt” for the next day’s worth of energy.
The worst part? You would think I would have an easy time falling asleep every night because of this - but no. There is a reason I’ve tried to make the distinction between the words tired and weakened in this post. Tired, to most people, implies a “fair balance” of physical and mental exhaustion. That is not the case here, weakened leans heavily on the physical exhaustion - however in order to stay mentally alert you can’t really be physically exhausted. That is what the muscle flexing exercise was supposed to demonstrate, but ultimately unless you were to attempt that exercise all day (preferably doing something other than re-reading this post a billion times!) you’ll miss the nuance of being stuck in that state all day, and every day.
So it’s kind of like, I’m “awake” in the sense that I rarely reach the end of my day mentally taxed (in a healthy way of course) - my brain doesn’t want me to fall asleep because, to it, I haven’t done enough. I certainly feel physically exhausted, and find it really hard to concentrate because my mind doesn’t have the energy to do so, but I lack that (healthy) mental restlessness that comes from actually doing something for most of the day.
As you can now see, while I probably could find something to write about every day for this blog, finding something to write about isn’t always the issue…