Why hello there people of the internet! It's been a minute since I've done a blog post... or rather, a blog post that means something. I'm going to be honest with you, even right now I'm feeling too tired to write this post, but I'm gonna do it anyway because it's something I've been wanting to do and I feel like it's time to share again.
There's a lot of reasons why I have been MIA on my blog, social media, and kind of life in general lately... and they all feed into each other.
From trying to balance my life as a Mom, work, a relationship, my health, and healing from trauma, to dealing with a chronic sleep disorder, things in my mind have felt chaotic.
Even now as I am trying to write, my brain fog is so unreal, it's really hard to string together exactly what it is I am wanting to say.
To be blunt, I've been really struggling with my sleep disorder, IH, (Idiopathic Hypersomnia), lately. On top of it, my trauma has been hitting me at full force, which always exacerbates the sleep, (as if IH needed a reason to be made worse).
I feel kind of dumb writing about this again, because I think it's hard to feel like it could be relatable. Or understood. Which is why I think I don't even want to talk about it all. But, whether it's IH or something else, I guess I'm writing it because we all deal with stuff that people don't see or understand.
For those of you who are new around here, my sleep disorder, Idiopathic Hypersomnia or IH, is a rare and chronic sleep disorder which for an unknown cause makes you feel sleep deprived no matter how much sleep you've gotten. It can be incredibly debilitating and make it really difficult to function day to day.
As my disorder is chronic and has no cure or solution, I've had to learn to accept it for what it is. Over and over again. I'm in one of those stages currently where I am having to accept it. It's because there are times where it randomly isn't so bad and other times where it takes a dip. It's during those dips that I just have to accept that my days start later, I have less time than most people to get things done, and that the time in a day I do have isn't going to be as affective.
It's honestly really depressing and each time I take a dip it's incredibly disheartening. Something I have done in the last couple of months since things have gotten worse is join groups on Facebook, follow Instagram accounts of those who share my struggles, and pages or groups that share the latest research and updates. It's helped to find a community of people who deal with same things and I honestly don't know why I didn't do it sooner.
I think part of what is so hard in dealing with uncommon chronic illnesses can be the lack of understanding. Lack of understanding for ourselves, from doctors, researchers, family, and friends. It creates this constant questioning of reality and feeling of isolation.
I think that's why it's so important to talk about this stuff, as not fun as it may be. For me, just spending time reading through comments in the IH Groups I am a part of has helped me keep my reality in check.
We all seek understanding. I often have people ask me about my sleep disorder and it can be kind of hard to explain. So, I've put together some comments all from different people, on what it's like to live with IH:
Living with IH is like running a race as fast as you can without ever having moved past the starting line.
Living with IH: It's spending more time asleep than awake... sleeping your life away and having no control over it.
Living with IH is you on your fifth day of no sleep with a newborn baby.
Living with IH is like being dead without the death certificate.
Living with IH is like waking up feeling like you’ve pulled an all-nighter even though you had a full eight hours of sleep!
Living with IH is like coming out of general anesthesia in a recovery room... every day.
I've often said I have the energy of a sloth that took a sleeping pill.
Living with IH is like being in a nightmare you can’t wake up from.
For me, it’s like constantly suffering the torture of sleep deprivation. The urge to sleep can be so bad that I have to go to sleep, but then after I wake up, I feel as sleep deprived as I did before. Sometimes I feel it takes all the energy I have just to breathe.
Its like having the pure exhaustion you feel from the flu, Every. Single. Day...
I don't need to eat, drink, or use the restroom, I only need sleep.
When I finally open my eyes in the morning my first thought is that I can't wait for a nap or to go back to bed tonight.
My husband will never have to worry, the only other love in my life is our bed.
It's sleeping so long that you wake up aching from laying down for too long.
Its my bed being the only place I ever want to be.
It’s like finals week all-nighters stressed and overwhelmed everyday.
Living with IH is craving sleep like a drug addict craves their drug.
Living with IH is telling your kids you don't want to hear them unless there is blood or a broken bone.
Living with IH is when your eyes are open but the hamster inside your head is dead.
Living with IH is wanting to do so many things but your body physically won't move.
When the need for sleep consumes every minute of your day, you might have IH.
Don't make plans with someone with IH unless it involves sleeping.
If you sit in your car for an hour after you get home because you can't get the energy to go inside, you might have IH.
Living with IH is like being the Energizer Bunny whose battery won't ever recharge. It is the feeling of being constantly obsessed/driven by the need to sleep despite a true heartfelt desire to participate in everyday life, but even living an ordinary, everyday life seems so very elusive. It can feel like life as you perhaps once knew it was insidiously stripped away from you & you are having to fight the invisible enemy of sleep deprivation constantly without adequate energy or any effectual tools/weapons to actually do so.
It's like putting your foot all the way down on the gas, but your car is in neutral.
Living with IH is like living in a paralyzed body but occasionally being able to muster up the "energy" to get up to pee or eat.
IH is like living with crippling anxiety and depression. You're angry at yourself for sleeping your life away but you can't get out of bed because your soul is sadly tied to the bed never being able to leave.
Living with IH is like constantly in a dissociative state and only being able to understand 10% of what's going on.
A faulty computer. Having to shut down multiple times a day for updates that don’t do anything.
Having IH feels like an addiction to napping. I wake up and think of when I will sleep next, I'm out with friends and I'm thinking of when I will sleep, I'm driving and thinking of the next opportunity. But no matter how much sleep I get, I'm still going through withdrawal and it consumes you.
IH is like being a cell phone with a bad charger, you never know how much battery life you have, if any, between charging sessions. All your apps are slow and drain the battery faster.
Living with IH is like driving in fog. You can know where you want to go but you can only see what’s literally right in front of you and not beyond that and you can crash at any moment.
Everyday I say, “ I swear this Is really the most tired I have ever felt".
My sleep doctor said living with IH is comparable to an average person being forced to run a regular day after being awake for 72 hours straight. For myself IH is having the most amazing family and activities surrounding me yet the most joy from my day comes from the ability to go to sleep.
Neck deep in quicksand. The more you move, the more you try to do, the worse, harder, and more painful it gets. The easiest thing is to stop moving and let it take you, but you know there's no open cave underneath like in the movies. There's only death. Not always physical death, but emotional and mental death. Death of all your dreams, aspirations, goals. Death of keeping your house clean. Death of spending time with friends. Death of hikes through the woods. Death of your chance at living.
Living with IH Feels like you took sleeping pills and are being forced to stay awake and function.
Living with IH is like driving with the e-brake on.
Living with IH is like baking a three layer cake with the ingredients to make only 1.5 layers, but not knowing it. Then having people be upset with you because your 3 layer cake is smaller. They make you believe you did something wrong and ask you why can't you get anything right.
Living with IH is like sitting at the bottom of a pool and watching life happen around you.
Getting stimulant's to deal with hypersomnia is like getting a pogo stick to get around town
Thank you to everyone who shared their thoughts for this post. Everything everyone submitted was so great, I shared the ones I personally am relating to the most right now. Things will get better. I know they have to get better. But in the meantime, I just ask for patience as I try to figure out life as "Sleeping Beauty."
Do you deal with IH or other sleep disorders? I would love to connect! Please comment below!