LIVING WITH IDIOPATHIC HYPERSOMNIA
“You just need to exercise more. Exercising gives you energy!”
“Are you eating right? These foods give you a natural energy boost!”
“You just need to drink more water!”
“It must be stress related, try meditating!”
“If you’re really that tired, just take a short 20 minute nap. You’ll feel much better after!”
Friends, family, medical specialists…they can all give advice. They’ll tell you to try this and that, while trying to reassure you about the million different ways that will help from feeling fatigue, but they do not work for me.
No matter how many years I spent with a nutritionist, on an exercise plan, or practicing meditation and wellness; the result is always the same.
At 24 years old, I have to grieve the life, and the energy, I once had. I have to grieve all the things I can no longer do, the limitations I now have, and the frustration that builds up because I always have to sleep after doing ANYTHING.
I have to wrestle with the anxiety that comes with wondering if I can be successful at all. How can I support myself when after a 4 hour shift, I’m too drained to do anything except sleep? How can I make up for all the time I lose everyday sleeping?
I have to wrestle with the helplessness, the uselessness I feel, as I watch all my friends work full time jobs, and build success while I'm stuck in bed asleep. I want to be with them, I want to be standing next to them doing the same and chasing those big dreams, but I can’t.
And it's not my fault.
But there’s also nothing I can do about it. There’s nothing ANYONE can do about it.
It does not matter how long I sleep, whether it’s 8 hours or 18, I will never feel re-energized.
It does not matter if I take a 30 minute nap or a 3 hour one, I will never feel any better.
It does not matter how hard I try to have a normal 7-8 hour sleep schedule like everyone else, I will always be tired.
Family and friends don’t and can’t understand what is wrong, and my doctors don’t care. It’s not right that it took 7 years for someone to take me seriously, seeing doctor after doctor, trying remedy after remedy. It shouldn’t be that hard to get a diagnosis.
I have to fight with medical professionals about having idiopathic hypersomnia. I have to fight to get a job; because as soon as I explain what IH is, I see the uncertainty on their faces. Questioning if I can be reliable and get the job done, that maybe we should play it safe and pick someone else.
I have to fight with the lady at the grocery store, or the coffee shop who says “Oh aren’t we all. I’m tired too honey, believe me.”
Many times though I don’t, because I simply don't have the energy.
I have to fight with myself. Every. Single. Day.
To force myself to get up.
No matter how heavy my limbs feel.
No matter how clouded my brain is.
No matter how many objects I walk into or trip over.
No matter how many hours of misplacing, dropping, forgetting or losing things because everything is still so fuzzy and foggy in my brain.
Typically, people spend a third of their lives sleeping.
But I will spend more than half of mine asleep, and the other half like I never got any sleep at all.