The soul crushing reality of being eternally tired
9/2/2024Read the original post first for this to make sense!
My doctor says that I have Idiopathic Hypersomnia. I originally didn't think it was, because I can't really nap or fall asleep during the day, but I guess that's a seperate issue. Looking back, the diagnosis makes sense, because although I have trouble falling asleep in the day, I still feel like I'm eternally fighting the feeling of dozing off. I guess I'm glad it's not ME/CFS, but IH is still a rare (rarer than ME/CFS), uncurable, life-altering disorder. There is medicine that might help with IH, but my insurance denied it. It's being appealed, and so hopefully they change their decision soon. I'm just so tired of living like this. Might make a blog post about all the ways that IH makes my life miserable.
It's actually getting to the point where it's disabling. The ADA's definition of a disability is "a physical or mental impairment that seriously impacts your ability to do one or more major life activities." Sleep is a major life activity, and without quality sleep, it impairs your ability to do most things in life.
I'm tired. So fucking tired, all of the time. And nobody knows why.
We thought it was sleep apnea, and it was. And an entire year went by before I got treatment for it. Being that tired for that long is just miserable. You become too lethargic to enjoy anything you once previously did. You become so incapable of doing even simple routine chores. You lose touch with reality as the world moves on and you aren't able to keep up.
I lived like that for a whole year. And after 2 sleep studies and waiting an entire year of being thrown through the American healthcare system, it doesn't work. Well according to the data, it was. It made my AHI (how doctors measure the severity of sleep apnea) go from about 9 (which for my age is considered moderate) to 0.5 (normal levels). This meant that it was working really well. But I certainly wasn't feeling it. It turns out the problem runs even deeper.
Since then, I've been on medicine to wake me up a bit, and I feel a little better, but I'm still much tired than I should be. Who knows what it is at this point.
It could be a side effect to my antidepressants, but I'd have no idea if that's the case or not because I can't really just stop my antidepressants. I also don't think that any medicine would make me as tired as I am, although I could be wrong.
It could be Idiopathic Hypersomnia, which is a disorder where you are sleepy all of the time, but I don't think I have it for one main reason. People living with that condition fall asleep multiple times a day, during the day. That disorder is charachterized by being unable to resist the urge to doze off, but I can't really nap even if I tried, even though I'm still extremely exhausted.
So that leaves one more reasonable posibility, and that is ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome, big name, I know). This condition is an interesting one, and it matches most of my symptoms. The main symptoms of ME/CFS are extreme fatigue all of the time, and worsening of symptoms after exerting yourself (this is called PEM, or Post Exertional Malaise). It's hard to say if I have PEM or not, but it would make a lot of sense if I had this condition. Unfortunatley, it is chronic and has no cure. But if my condition did turn out to be this one, I'm lucky to be on the mild side of things. ME/CFS is a spectrum disorder, and the people on the severe side of the spectrum are often left bedridden for life. Scary stuff. We need more funding for this condition. It is twice as common as multiple sclerosis, and yet is incredibly underfunded and underresearched. Even if whatever I have doesn't turn out to be ME/CFS, my heart goes out to anyone who does have it.
Just to be clear, I don't want to self dignose, I am not a doctor, but there is something clearly wrong with me and I am desperate to know what.
Whatever is wrong with me has left me in some pretty dark places. That is why I haven't been working on my website as actively. I feel like my fatigue condition has already made me so far behind in life. I can't take driving lessons, I can barely do my schoolwork, I am at risk of having to graduate late and take an extra year of high school, I struggle to find the energy to work on my hobbies, and overall it's just a really sad situation. If I had a diagnosis, at least then I could have a reason to take things easy and to give myself a break. But for now I'm stuck being treated like a normal person, and being held to normal people standards, even though I am barely functional half of the time.
Is it just depression? Is it some other condition? Is it a medicine side effect? Who knows. It is frustrating not knowing.
One day I'll have answers.