Living with Idiopathic Hypersomnia
What has it been like living with idiopathic hypersomnia? I’ll explain as best as I can.
One of the first questions people ask me when I talk about idiopathic hypersomnia is, “what’s it like?” That’s a fair question. The first way I answer is, imagine sleeping for an entire night and feeling like you’ve gotten no rest at all. That’s the first “feeling” I experience when I wake in the morning.
Then, there’s that yawn that’s always trapped in the back of my throat. It’s waiting to come out. Always there. I can feel it right now as I write this explanation.
So, what do I do? I yawn to try to get rid of the feeling. What happens? It’s replaced with another yawn trapped in the back of my throat.
It’s a vicious cycle I battle throughout every single day.
After that? (Yes, there’s more.) Inside my body, I feel like I’m running a marathon while I’m standing still. I don’t know how else to explain the exhaustion and pain.
What I’ve found most interesting is that, when I talk about idiopathic hypersomnia, few people realize it has anything to do with pain. However, when your body is always fighting to stay awake, it’s painful. Every muscle in your body is struggling to help keep you awake. It starts in your back (feels a lot like tension), and then creeps into your arms, legs, and everything else.
How is This Manageable?
Some days, if I keep myself VERY busy, I can’t feel that. When I say very busy, I mean — constantly moving or my mind EXTREMELY busy. The main reason is that my mind was so distracted and my body was moving so much I wasn’t thinking about what I was experiencing. When I worked for a local non-profit, it was the perfect remedy.
It was an excellent balance between keeping my mind and body busy. I spent part of the day keeping my mind busy in the Finance Office (or at camp — wherever they needed me), part of the day keeping my body busy in the daycare, and then I had an opportunity to combine the two (mind and body) working during the after-school program.
Yes, I was mentally and physically exhausted all the time. (And I was SORE at the end of the day.) However, I was getting a solid night’s sleep, waking up without any trouble in the morning, and managing to get through the day without feeling like I was going to collapse. I did drop like a rock by 8:00 pm every night, though.
I left that job after four years to go back to freelance writing full-time. (I had been writing part-time during those years.) While I miss being constantly busy, I felt like it was time to refocus my priorities. Now I’m consistently busy writing, but it’s a different kind of busy. That’s another story, though.
It’s a Constant Learning Process
Living with hypersomnia has taught me many things — even before I received my diagnosis. I used to hear a lot of negative talk throughout the years, like this for example:
“There’s no reason for you to be as tired as you are — you don’t actually do anything.”
I heard that from someone who claimed to be a friend of mine. Needless to say, our friendship soured, and I had to move on. Hearing things like that not only hurt, but it confused me. Why would someone who claimed to be my friend say something like that?
At the time, I was working full time while my husband and I were raising three children (at the time, they were six, seven, and eight — they’re seventeen, eighteen, and nineteen now). The kids were involved in every sport the school offered, my sons were in Boy Scouts, and my stepdaughter was in Girls Scouts. So, our household was extremely busy.
As you can see, comments stick for a long time, and I still feel the need to defend myself. That’s part of what this sleep order is doing to me. What else is it doing to me? It’s teaching me to spin things into positive situations as often as I can.
Idiopathic Hypersomnia Doesn’t Define Me
Even though this is a frustrating situation, I refuse to let it define me. Yes, I’m writing about it now. However, I’m not doing that because I’m not allowing idiopathic hypersomnia to become who I am. Instead, I’m writing about it because I’ve felt alone for years.
No one knows what I’m talking about when I say, “I have idiopathic hypersomnia.” They either shrug, say something weird about insomnia, or talk about narcolepsy. Or, they say that they must have it, too, because they’re always tired. That tells me more people need education about idiopathic hypersomnia.
I work hard to make the most out of all my “waking hours.” I make it a point to get up early (I’ve tested this and, the earlier I wake up, the better it is for me — it may not be for you, but it’s been working great for my symptoms.), and work. I did this when I worked for the non-profit, too. It’s when my mind is clearest; I can produce the most work, and work the most efficiently.
Around 11:00 am is when medication starts wearing off, so I work on what I refer to as mindless tasks. That involves filing paperwork, printing out information, and other administrative work that will lead me until lunchtime. At that point, I have six hours of work under my belt, and I feel good about what I’ve accomplished.
So, I eat — and crash. My pulmonologist always asks me if I nap. At first, I would say, “no.” He’d say, “that’s great.”
So, naturally, I thought I wasn’t supposed to be napping. Now? I don’t care. My body needs to sleep for between two and three hours, so I do, and I’m honest with him when he asks.
When I wake up, I finalize any deadlines or other tasks I have for about two hours. That way, I have a full eight-hour workday. I feel like this is a positive way of living with hypersomnia because I can:
● Finish my workday around 4:00 pm or 5:00 pm depending on how long I nap.
● Spend the rest of the day with my family without having to worry about pending tasks.
● Better manage my stress — which is a critical step for those experiencing idiopathic hypersomnia.
● End my workday earlier if I feel like I don’t need to nap (which does happen sometimes).
Do I feel like I’m fighting exhaustion all the time?
I admit that, even though I have strategies in place, I have weeks when I’m exhausted and nothing seems to work. I’m on the most potent medication my pulmonologist can prescribe, so that’s not an option. During those times, I have to accept that this sleep disorder has ebbs and flows.
What does that mean?
I’ve noticed that, like when individuals experience seasonal affective disorder, a lot of factors will affect the symptoms I experience with idiopathic hypersomnia. I’m not saying that I’m experiencing depression, because that’s not the case. Though, I’ve read that some people with IH are on depressants — I’m not. I’m making the comparison for the sake of seasonal change.
The main reason is that I’ve noticed how outside stimulus, activities, stress, and moods contribute to IH symptoms. That’s why I mentioned above that managing stress is a critical step for those who have an IH diagnosis. If you’re experiencing high levels of stress, then that could potentially add to your fatigue — just like anyone else who doesn’t have this sleep disorder.
What Does All This Mean for You?
I’m sharing my stories about idiopathic hypersomnia because I want you to know you’re not alone. Even though it’s not something widely talked about in comparison to fibromyalgia or bipolar disorder, there is support. For example, you can find support and resources at The Hypersomnia Foundation.