#I don't have a diagnosis of cfs but I'm like 99% sure that's what it is and has been for years | Explore Tumblr Posts and Blogs

samtheflamingomain · 3 years

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new diagnosis, who dis?

Well boys, she was a good temporary label, CFS was, but the science has finally caught up to my galaxy brain.

And that galaxy is uncharted territory.

I've got "idiopathic hypersomnia" (IH). I love when they say what they mean. Translated literally from Latin, it means "too tired (hyper+somnia) without explanation (idio+pathic)". Because it's shorter to say, will require less explanation, and the two are almost the exact same disease, I'll be referring to it at narcolepsy type 2.

There's no cure, no treatments, and few studies. The few that have been done show absolutely no improvements, and all end with "inconclusive". Long story short, nobody gets better once they get sick, usually around age 21, just like me, and it's all downhill from there.

Let's just quickly describe it for clarity. Narcolepsy 1 causes tiredness and sudden muscle paralysis or "sleep attacks" and traces back to a gene mutation that's treatable. N2 is characterized by having extreme tiredness but no paralysis, and no association with that N1 gene. You have to be sleeping an average of 10h/night (check) and have a normal-looking sleep study (check). The reason my doctor changed me from CFS to N2 is because a) he only just learned of it and b) I don't have a lot of symptoms of CFS, pretty much just the tiredness.

Practically, nothing has changed. I'm still fucking tired. But now I know there's a near-0 chance that I will ever feel awake again.

CFS patients are about 50/50 when it comes to successfully managing fatigue with medication and making life mostly "normal". A lot like depression, it can become a matter of throwing a dart at a board of drugs to try and hoping one's a bullseye eventually. Now there's no board.

So... not the best news. In fact, this is probably the worst news I've ever received. In one 45-minute phone call, any hope I had of getting better was completely obliterated.

My psychiatrist has been working with me for about 6 years. I've tried every drug under the sun for every goddamn mental illness, but there's one (1) symptom that has never, ever changed: my level of exhaustion.

While tiredness is a common feature of mental illness, every single time my psychiatrist asks what my biggest concern is, it's that I'm still tired. 10/10. I'm currently on the highest dose of Adderall and I don't have ADHD. I should be tripping on meth, but instead I'm nodding away as I type. It's a good thing I've never given into the obvious temptation of doing cocaine, because even cocaine would not make me wake up.

I've never had jet lag, but other people who have N2 find it helpful to explain that it feels like you're always living with jet lag. For me, it's like living with an anchor around my brain weighing it down. The kind of tired that just absolutely knocks you on your ass.

And it never. Ever. Ever. Goes. Away.

In many ways, I'm grateful to have found my forever diagnosis (hopefully). I scored a perfect 50/50 on the diagnostic test, and alongside what appears to be a completely normal sleep study, I'm pretty sure they've finally gotten it right. It's common enough that it's being studied, but rare enough that there's not much money in making drugs for it. So I'm extremely, extremely depressed and hopeless.

I thought one day I'd be better. I really did. I'm a pretty jaded person, but today I realized just how much holding onto that sliver of hope that I'd one day "wake up again" was keeping me together. I've always wanted to travel the world. That's out. Same with holding down a full-time job. CFS, like depression, can be hard to treat - but it's almost never impossible. Now the opposite is true. Chances are 99/100 that I won't live long enough to ever wake up rested ever again in my entire life.

If I'm not living to hopefully one day get better, what am I living for at all? I always say I can't imagine living another week/month/year of this, but I always do, because there was always that chance that the right medication was just around the corner, and my life would "begin" again.

But now, the "right drug" isn't "just around the corner" - it's stuck in traffic on the DVP West at rush hour. From the day a disease gets recognized to the day it's cured is not going to be any less than 15-20 years.

I'm seeing my family doctor (GP) in a week. At that appointment, I will be requesting a MAID evaluation. One cannot obtain legal euthenasia in Canada when you only have a mental illness, or an illness where recovery is possible. Now, I have an incurable neurological disorder with 0 quality of life.

I'm not waiting another 7 years. I'm not waiting another month. I did my time. If I'd known it was never going to change from day one, I wouldn't have bothered slogging through it. So why keep going now?

Maybe I'll stick it out a bit longer, try and experience a few things on my bucket list, but 90% of that list involved me one day being awake.

This is it. The last straw. The final card in the shitty hand I was dealt in life. Deal me out.

#idiopathic hypersomnia #narcolepsy #sam #depression

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