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anarra

Utah

Hopeful Since 2015

Followers 752 Following 384

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Living with an "invisible illness"

Mar 12, 2016
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At age 14 I developed a fatigue that was completely debilitating. I would wake up to go to school at 6:30 and by the middle of my first class I would fall asleep, and this was after 8-10 hours of sleep! 18 years later and hundreds of tests I finally have a diagnosis. 2 years ago I was diagnosed with Idiopathic Hypersomnolence, a rare sleep disorder that is very similar to Narcolepsy. In simple terms my body is constantly being signaled to fall asleep. I am in a state of sleep deprivation at all times and because of that I have a LOT of odd symptoms that most won't ever understand. For example, the average person falls asleep about 10 minutes after laying down, I fall asleep within 1-2 minutes without stimulation. That means if I'm at work or school and I'm not keeping my brain active I'll fall asleep almost immediately. Most wake feeling rested, I can sleep 12+ hours and feel as if I haven't slept for days.

I was recently prescribed a stimulant to keep me awake (which I'll have to take for the rest of my life), and then prescribed an anti-depressant to help with some of the other odd symptoms I deal with. I am medication sensitive and very hesitant to even take something for a headache so being on heavy meds like this was insanely scary, and I should have followed my instinct to stay away. I was on the depression meds for only 2 months and decided to stop taking them because of the side effects. It has been 1 week since stopping and I'm in more emotional and physical pain than I've ever been in. I can't eat, I can't sleep, my concentration and memory have been absent and my motivation to do anything had disappeared.

I've struggled immensely with this disorder. No one wants to sleep their life away. It's painful to think I might miss most of my life due to sleeping through it. This disorder is progressive and most that dwell on that never make it through school, never have a career of any kind, end up losing driving priveledges, and many end their own lives because of the frustration of knowing they had the capacity to live a normal life at one time, but can't seem to connect the dots to return to that life anymore. My study of Psychology has taught me that mind over matter is real and I may not be able to completely beat this, but I can stay ahead of the negativity that follows and stay positive and happy despite it all. Being here has helped to keep moving forward when I feel that pull to give in. I thank everyone here that has messaged me or interacted with me in any way. You help me in ways you'd never understand ❤️

VIEW 5 of 5 COMMENTS
tmax:
You will make it, it's very tough with sleep problems!!
Apr 7, 2016
stgeorge:
Must be a struggle, certainly is an eye opener into something I know little about 
Apr 13, 2016

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