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Idiopathic Hypersomnia – A Turtle Going Uphill Through Molasses in January

Idiopathic Hypersomnia – A Turtle Going Uphill Through Molasses in January

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Words escape me. I am a reader, a writer, and a highly educated woman with multiple degrees. Eloquence is high on my list of valued traits. Communication is one of my strengths, and something I’ve always been commended for. And yet, words escape me. I stutter, I stumble, I am tongue-tied. It’s like trying to grab water in your fist.

That is part of what it feels like to have brain fog, a symptom of multiple chronic illnesses, including my idiopathic hypersomnia. You can’t find the words you are looking for, even everyday words. But I am not stupid. I do not have a low vocabulary. I have a Bachelor of Arts in English; communicating in a clear and concise manner was something I was trained to do. But words escape me. Not just once in a while. All the time.

Brain fog is just one aspect of IH. It isn’t even the biggest aspect, nor the most important. However, it matters because how can you convey what it is like to have constant all-consuming fatigue if words escape you?

I would say that my fatigue is a “maelstrom,” or a “torrent” within and surrounding me, but the connotations of such descriptions bring up thoughts of fast and wild disasters. Fatigue is much more subtle and slow. It is not the quick death of a bullet to the brain. Fatigue is more like walking through thick, high mud. Like swimming through honey. Like drowning in an ocean. Like being in a bog, surrounded by impenetrable fog. Like a turtle going uphill through molasses in January. It is all of these things simultaneously. It is wearing a lead straitjacket while trying to escape drying cement. It is slow, and it eats you alive from the inside. It is the thick, heavy, slow, drained, helpless, hopeless feeling.

Imagine dealing with all of that, day in and day out. Now experience all of that while trying to be a competent part of society. Subtract caffeine. Add heart palpitations and a minimum nightly requirement of eleven hours of sleep. The hardest part of your day is waking up. The second hardest is getting out of bed. The third is staying awake. An eternal struggle. Stay awake. Be productive. Accomplish your tasks.

Imagine doing all your normal tasks (and they have to be done well and in a timely manner) when you haven’t slept in three days. Now imagine doing that every day. Can you? I can. Because that is what I do every day, because idiopathic hypersomnia means that I need a minimum of eleven hours of sleep in order to feel like I haven’t slept in two or three days. I cannot remember what it is like to feel refreshed, rejuvenated, and awake. It’s been years. I would, without hesitation, amputate an arm or a leg if that was the cure. Think about that.

Take all of that and tell me that fatigue isn’t debilitating. I dare you.

But you know what? No matter how many people read this, there are still going to be those that think fatigue isn’t debilitating. But life keeps going. So, just like that turtle, I will keep going, even if it is always uphill through molasses in January.

Caitlin Swinford
Germantown, MD



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