Idiopathic hypersomnia is me feeling like a bad sleep apnea/CPAP advocate because I don’t fit into one perfect box. CPAP makes me feel better, more energized, healthier. But IH still gets me every day, attacks my brain with sleep, makes me feel inadequate.
IH is me planning this post for months but never ever writing it, because my brain is too tired to do basic things. IH is me hopping on the computer to write, but forgetting my login password and then giving up because the process of initiating the password reset, checking email and resetting it seems too daunting.
IH is me scrolling through Facebook for hours on end, doing absolutely nothing at all because my brain can’t possible handle doing anything else.
IH is the tears that are starting to well up in my eyes as I think and write about this.
IH is me not wanting to start anything, because I know that I may not have the energy to finish it.
IH is the voice in my head telling me that I am lazy, that it’s in my head, that I am failing everyone because I am not following through.
IH is not having the mental energy to respond to emails, and the subsequent anxiety of emails. IH is avoiding my inbox because I know that I don’t have it in me to focus on emails and the people that need my attention, even for a five minutes.
IH is guilt. Lots of guilt.
IH is preferring cats to houseplants, because cats are there to encourage me to take care of them each day. Houseplants I kill because the watering can is too heavy in my heads and my body is too heavy to carry itself across the room to the windowsill where the plant is.
IH is a long explanation to everyone I come across. It is explaining that I have “idiopathic hypersomnia” and that it is “similar to narcolepsy” and that I don’t actually have narcolepsy, but I might, but we can’t pinpoint it, so I am stuck with this diagnosis. Yes, it’s a funny diagnosis, no, we don’t know why I’m sleepy, yes, I understand that idiopathic means “we don’t know” but I promise you that there’s a valid reason. I don’t have the energy to explain it and my brain doesn’t work well enough most of the time to say much eloquently, but there are either chemicals in my brain that are lacking of too much of something. Also, it might be that the receptors are broken. I’m not sure. But it’s real, I promise you, it’s very real.
IH is pride and relief when your doctor tells you that you’re one of the worst cases that he has seen, because you feel validated and like what you’re going through is real.
IH is your son waking up in the other room in the midst of writing this and you knowing that it might never get done, because the sleepiness causes your focus to be so horrible that you can’t do anything and some days you cry about it.
IH is taking twenty milligrams of extended release Ritalin and twenty milligrams of quick release Ritalin and then taking a five hour nap anyway.
IH is knowing that you’re an amazing mom, but doubting it because you fail at everything else.
IH is being good at your job, but terrified that someone thinks that you’re going to put their kids’ safety at risk because of your illness. It’s wanting to be secretive about it, but also straightforward about it, because it affects your life in so many way.
IH is setting boundaries around how fast your body wears out but ignoring them because you don’t want to seem like you’re lazy or not helpful, and then ending up even more exhausted than before.
IH is going on vacation and sleeping for eighteen hours and then beating yourself up because you just paid $2000 to sleep the day away in a nice hotel in an exotic locale.
IH is willing to try any type of drug or medication to feel better – even if it is $15,000 per month and comes with potentially horrible side effects. IH is worrying about being able to complete the process to qualify for the drug because it’s long and drawn out and has lots of steps that you’re not sure if you can follow through on.
IH is getting a burst of energy and getting excited, telling yourself that you are going to do all the wonderful things, and then having that energy tank and having your hopes crushed, because you know that you may never again have the energy to follow through on any of it.
IH is cursing the capitalistic system every single day because you know that without it, you’d be able to take time to care for yourself and your family without so much worry.
IH is getting anxious when your baby takes a three hour nap – because what if he has it too?
IH is real. It is crushing. It is depressing.
However…
IH is being efficient – knowing your energy is limited and getting things done in a short window of time.
IH is showing your kid that you’re human and that you can do wonderful and difficult things despite it.
IH is people saying “But you seem so energetic” and “But you seem just fine” because even though you are tired, you care about people and do the absolute best that you can for the ones that are important to you.
IH is being grateful for the fact that what you are feeling has a name, and that others are experiencing that feeling every day with you.
IH is my life and the life of many others. And we live that life the best that we possibly can.
Thank you for explaining it so well. You are correct that people who DON’T have it, truly don’t understand. I know it is REAL.
Thank you so much! It is so hard.
I have been on a new medication that is helping a LOT – three days in and it’s already helping. The new energy is great, but it’s already easy to take for granted – to feel normal and rested and be able to do things. I almost forget how being that tired feels – but I don’t forget the pain.