Most of my friends know I have idiopathic hypersomnia (IH) – it isn’t a secret. And most have heard me talk about the challenges I face because of this neurological disorder. They know I struggle every day to get out of bed. And I don’t mean it takes me a minute to fully wake up – I literally do not obtain wakefulness. Ever. I may look awake but my brain is constantly encased in fog, often struggling to remember even the simplest of things.
They’ve heard me explain IH as the equivalent of a “normal person” being awake for 48 hours, falling asleep, and then having someone wake them an hour later. That is my reality. Every. Day.
And they’ve heard me say that there are no FDA-approved medications for IH, let alone a cure. Most folks with IH, including myself, have fought to get insurance approval to cover medications that are only FDA-approved to treat narcolepsy. Even with coverage, just one of my prescriptions costs over $500 a month. And there’s a stigma that comes along with taking these medications – most of them are highly controlled substances. I’ve been through almost every narcolepsy medication out there and I can tell you the side effects aren’t any fun, either. From dropping tens of pounds in a matter of weeks on Adderall to falling asleep and smashing my head in to the wall on Xyrem, it has been a wild ride. That’s why awareness is so important – we desperately need research and funding.
Everything I’ve written so far is part of my “open story,” and this is usually where I stop and tell them it’s okay. I’m not dying, I have a great support system, an amazing neurologist, I’m successful in my job, still working full-time, sometimes even managing to be a mother and wife. I smile. And then I change the subject. Because, let’s face it, the topic is a total “buzzkill” and nobody wants to hear the truth any more than I want to talk about it.
But today, for one day, I’m keeping it real. As difficult as it is, and whether anyone wants to hear it or not, I’m releasing the truth about what IH means for me and those around me…
IH is a lonely, lonely path. It’s difficult to form deep friendships because I don’t have the energy it takes to be a good friend. I know I’ll eventually let the other person down, so I keep everyone at arm’s length. I sometimes even turn from my family, usually as a way of trying to protect them from me.
IH means my son will always be an only child. The other choice is to stop my medications and sleep 20 hours a day – no, that is not an exaggeration. I would have to leave my sweet son without a mother for at least a year. And we would never get that time back. To me, that really isn’t a choice. I love my son too much to choose any other life over his.
IH means depression and agitation that can strike at any moment. I sometimes can only lie in my bed and cry – like I did this weekend and like I’m doing now. But it’s more miserable when I want to lie in bed and cry but can’t. Like when I’m at a social gathering (which isn’t very often) and have to run to the bathroom to hide until I can stop the tears from flowing. Or when I’m on a conference call at work. I’m a VP at a major corporation and I adore my job and the team I work with – crybaby isn’t exactly the image I want to portray. Thankfully, I can usually feel these moments coming and can almost always make a clean getaway before they hit. Why is that important? Because many people see tears as weakness. And if there is one thing I am not – it’s weak. What I am is absolutely exhausted.
IH means my ten-year-old asks me almost every day if I’m okay. How do I explain to my child that I’ll never be okay? How do I get him to understand he did nothing wrong and that I’m not going to bed to try to get away from him? How can I shelter him from this? How can I show him how much I truly love him when my eyes just want to close? Better yet – how can I possibly hide it all from him and trick him into thinking I am not sick? The answer to every one of those questions is simple. I can’t.
IH means my husband has it rough, too. That man is a saint and does so much for me and our son. And I just don’t have much to give him in return. I love him dearly and, yet, he really gets the short end of the stick. He gets the leftovers – any tiny portion of energy I have left at the end of the day is his. Unfortunately, I usually have nothing left long before that time comes.
IH means a lot of grieving. And, oh my goodness, the guilt. The wondering about what could have been – how things might be different without IH. Surely I’d be a better mother. A better wife. A better daughter. A better sister. A better niece, a better aunt, a better friend. A better person, a better me.
But that’s just it – there isn’t a better me. There is only me. This is my path.
This is IH.
Lydia Smith, Lake Wylie, SC