Those of you that follow me know that I tend to be playful, silly, and I try to find humor in as much as I can. Life is too short to take seriously. I mean really, I’m short and people rarely take me seriously. I try to make light of my struggles because life is heavy enough, I don’t need to add anymore weight to it. The truth is, right now I’m struggling and this time I can’t ignore it. I’m not writing this for pity or for some kind of unnecessary recognition. I’m letting the words escape the prison of my mind because I’m exhausted from holding it inside.
I woke up tired this morning. This wasn’t a shock to me, I’ve been waking up this way for most of my life. This was a different kind of tired, not the usual sleepiness brought on by my sleep disorder (Idiopathic Hypersomnia or IH). The fatigue I experienced brought with it an overwhelming sense of hopelessness, a feeling that my life will forever cycle in this pattern of struggle I seem to be experiencing lately. I’ve experienced fear, uncertainty, and doubt, and I’ve always been able to make it through. Right now I’m terrified.
I’m currently suspended from my job while I wait for my doctor to fill out paperwork regarding my disorder. While it’s nice to have some time off to spend taking care of myself, I’m not getting paid if I’m not working and I’m already behind financially. The suspension is my fault, I called out a few times due to single-mom stuff. I knew one more occurrence would cause me to lose my job.
A little over two weeks ago my car was broken into and everything was taken, including the medication I use to regulate my disorder. Without that medication I have a really hard time staying awake (imagine taking a double dose of NyQuil every morning, while only getting 1 or 2 hours of sleep every night, and then trying to function normally) and an even harder time getting myself to wake up. A few days ago I slept through my alarms, all 4 of them. At one point I could hear the alarm go off, but I couldn’t get my brain and body to wake up. I was late to work which resulted in an occurrence and then the suspension.
I’ve already had so much loss, so much heartache, so much struggle this year and this finally sent me over the edge, something finally broke me. I don’t usually pay much attention to my IH, generally due to the fact that I can’t change it and what little energy I do have has to be spent elsewhere. Right now, I hate everything about it. IH has robbed so much from my life and I’m so angry that I cant just make it go away. I’m angry that I will never know what it feels like to wake up feeling rested. I’m angry that I can’t access information I have stored in my brain because the extreme sleep deprivation IH taxes my brain with a mental fog that prevents me from accessing it. I’m mad that I forget things within minutes, including those things that are precious to me like the sound of my children’s laughter.
To everyone else, IH just means I’m always a bit sleepy. Idiopathic Hypersomnia is neurological disorder that creates an insatiable need to sleep. To me, IH is a parasite that drains me of the energy, passion, and ambition to chase my dreams. It robs me of the drive necessary to improve myself and my situation. It creates a barrier that hinders my ability to perform at the level I know I’d be capable of if it wasn’t there. And it hasn’t always been there, which creates an even greater level of frustration for me.
Before the onset of my disorder I was able to achieve every goal I had set. I was able to stay focused and positive during the lows and fully take advantage of and appreciate the highs in life. IH undermines just about everything I do now. I know life is hard for everyone. I understand we all struggle in our own ways, and I’ve accepted IH as the one struggle I’ll never overcome. “Just take a nap,” are the words I hear often from those who don’t understand. I wish it were that simple.
This disorder is rare, affecting only 1 out of every 25,000 people and is said to be more disabling than Narcolepsy. Because IH is a silent disorder, it’s often overlooked or completely disregarded altogether. A large number of the IH population are unemployed. It’s extremely difficult to find a job that provides the flexibility needed to allow the proper care and management required to manage IH. Honestly, I don’t think I could find the courage to ask for time off because I’m tired. There’s a high prevalence of suicide among those diagnosed with IH and now I have a full understanding of why some choose to fall asleep and not wake up.
No one wants to sleep their life away. Times like this create the perfect opportunity for me to fall into negative thought patterns. I’ll isolate myself in my room for hours and cry over all of the memories I’ll never have, all of the experiences I’ll miss because I can’t stay awake (even after taking prescribed stimulants and consuming dangerous amounts of energy drinks). It’s painful to think about all of the opportunities I’ve missed and how different my life would be if I wasn’t plagued by IH.
I have a talent for people, a passion for connecting with others, a natural ability to bring people together and I pride myself on being someone others can rely in their time of need. There’s so many people out there that need support, that need someone to believe in them, people that feel alone in the world and are begging for a friend. I have a deep empathy for those people and I want nothing more than to be there to show them their worth in this world. I want to be strong for those that feel weakened by the daily struggles of life, but right now I can’t.
For the first time in my life I’m forced to admit that I need help. The solid foundation I thought I had built myself on is crumbling underneath me and while I’ve done all I can to hide it, I’m falling apart and it’s starting to show. How do you ask for support when you’ve been the rock that so many people lean on? I’m so afraid of letting everyone down.
There is one positive side to this disorder, lucid dreaming. Maybe that’s why so many of us want to stay asleep? In my dreams I finally feel what I perceive to be normal. I can finally live out the life I would have without IH. I can be fully present and cognitive while spending time with the ones I love. I can watch my babies grow and be the mother they need. I can give my partner the love and attention he deserves instead of leaving him feeling empty from always trying to meet the many needs that IH requires. I can find the stability that comes from being independent.
The rug has been pulled out from underneath me over and over again. I don’t know how to find the strength to get back up this time. I don’t want to burden anyone, but I’ve come to fear that’s all I’ll be. I’ve turned away so many offers to help because I don’t know if I’ll be able to repay anyone. I feel so lost and confused right now, like a mouse trapped in a maze with no escape. I don’t want to give up, I have so much to be grateful for, but I don’t know how to find my way out. So for now I’ll do my best to find peace in the situation. Maybe I’ll paint the walls of the maze I’m trapped in. I’ll keep smiling for others and help in what little ways I can, because that’s what I’ve always done.
I appreciate everyone who’s been there for me. I’ll find my way out eventually, I’m too stubborn not to.
Erin
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