In a daze

It’s one of those summer days when the heat suddenly rolls in overnight, enveloping the city in a haziness that I can’t shake; it’s oppressive and overwhelming—inescapable. The heat weights me down and pulls me backwards, lulling me into a daze. Summer days like this follow me into the winter when I can never quite shake the heat wave of sleepiness within my brain.

This week, September 3 – 9, is idiopathic hypersomnia (IH) awareness week, and as an IH patient, I want to keep telling my own story. Excessive sleepiness as a chief complaint may not rank high on many lists when it comes to possible debilitating chronic illnesses or medical issues, but perhaps these words can help someone who is suffering from IH not feel so alone, and help my friends and family better understand how this chronic illness affects me. (If you are one of those people and haven’t read this, I suggest you do that first.)

Lately I’ve been noticing more how IH affects me—perhaps some of these observations are just me getting older, but it doesn’t always feel that way. I see my disorder manifesting in me and changing me—for better or worse.

There are numerous symptoms of IH that aren’t just sleepiness: confusion, difficulty concentrating, always losing things, problems with memory, easily distracted, irritability, brain fog, difficulty expressing and understanding verbal communication, getting lost easily—to name a few. Ten years ago I may have been overwhelmed with sleepiness, but I definitely didn’t have some of these symptoms.

When I was younger and I lost something I would be distraught—because I almost never lost anything. Now, I hardly ever know where the key to my office is. In college, I could recognize people from my lecture classes and know their names having met them once, but now I need to meet you multiple times before I remember who you are. I often forget where I read something, heard something, learned something, and I don’t feel like myself when I do. I used to be able to recall a conversation perfectly and now when I pay back an interview I did the previous week, I don’t even remember asking some of the questions. This could be just me getting older, but I’m not sure it is. I feel as though the traits that made me unique are withering away and I will never get them back. I worry that this is the beginning of a downhill slope and that things will only deteriorate more.

Each morning I swallow a stimulant that perks me up and clears some (or all) of the haze I feel (depending on the day). It can be unreliable—sometimes it gives me complete concentration to let me accomplish what I want to, but other times I never quite wake up and I push all of my tasks to the next day, hoping that tomorrow I’ll feel better. It can also affect me in ways that make me self-conscious like my symptoms sometimes do. I can be talking a mile a minute, thinking I should stop, but I can’t help myself and I keep going. I tell my friends, if I’m talking too much, please tell me. Reign me in because I need an outside force to snap me out of it.

Most of the time I have fully accepted that IH is a part of me. That I may never know what actually being awake feels like. Or what a good night’s rest is. Recently I was on the phone with my mom one Sunday morning, around 11 A.M., I had woken up about 30 minutes prior, gotten my bearings and called her. I was still a bit out of it and I said that to her. “I’m sorry you have to sleep so much,” she responded. My first instinct was to brush it off—that’s just how it is, it’ll never be any different, doesn’t matter, it’s fine, I just have to deal with it—but this time it when she said it, it wasn’t pity that I had to defend against, it was sadness, and I felt it too.

Maybe she recalls this exchange differently, but in that moment it felt OK for me to be truly sad about my IH—and that it was OK to want something different for myself and to feel the loss of many things I’m sure I’ll never be.

Chronic and invisible illnesses affect so many of us and even the same disease can manifest in different ways. I’ll never be cured of IH, but staying open to discussing how it affects me and having friends and family who listen is one of the best treatments. 

If you’re interested, I’ll be writing about how idiopathic hypersomnia has affected me and others all week; keep reading, sharing, talking, and listening—not to just me, but to anyone who needs it.