Eleanore Vs. Sleeping Life Away

Dear sleepy things, awake things, and things that are somewhere in the middle,

I am currently sitting next to this sweet, sleepy little marshmallow, and he has caused me to think about my own relationship with sleep; so far, it has not been pleasant. I never remember a time in my life when I had a regular sleeping pattern. I have always slept far too much or too little, and no matter which it is, I never feel rested. Last year I was diagnosed with Myalgic Encephalomyelitis, more commonly (and ridiculously) known as Chronic Fatigue Syndrome. Though I was diagnosed with little explanation of what it meant to have this disease, upon my own research I found out that most sufferers of CFS/ME have the same problem. Sleep just doesn’t seem to like us.

In fact, one of the symptoms of CFS/ME is sleeping for as long as you like and still feeling as if you have barely slept at all. Considering I also have anxiety, depression, and a slew of other illnesses, sleep has never been my thing. This is unfortunate as I am a human, and need sleep for, you know, human reasons. This also means that I can only go so far before I inevitably run out of energy. To replenish my energy, I have to drop everything on my “to do” list and take a nap. Some days my naps are only 30 minutes, while other days they last hours, but no matter what one thing remains constant- I always wake up feeling guilty.

Most of my life I have been drowned by comments such as, “I wish I could stay in bed all day,” or, “I wish I could lay around and do nothing, but I have to go to work.” As I have said before, I would trade with that person in a second if it meant I would be healthy and able enough to work a steady, full time job. Each time I wake up from a nap, though I may have a tiny bit more energy, I feel dreary and heavy, my depression surging through me. I slowly check my phone, look at the time, and the same thought never fails to cross my mind – I fear like I am going to waste my life sleeping it away.

I’m often told how I don’t try hard enough or work as much as I should. Aside from this all being complete bullshit, I can’t help but think about my college days. At the time, I was taking a full course of classes, worked three jobs, and still had to do everything else to keep myself going. I was living in an abusive home, going to doctor appointments constantly, and was trying to survive through all my physical pain and business. There were nights I would be out from 7 a.m. to 8 p.m, then would come home to homework, cooking, and all the nastiness within my household. It was difficult to say the least.

To get through my days I would take any chance I could to sleep. I would sleep in my car in the parking lot of my college or I would take a nap at 10 p.m, wake up at midnight, and keep working until three in the morning until I finally got to sleep…before doing it all over the next day.  Throughout this period of my life I kept trying to convince myself what everyone else kept telling me; I wasn’t sick, I was just faking it. I could do all the normal things regular people do if I just tried hard enough. Turns out, I was extremely wrong, which doesn’t take a super genius to figure out.

You’d think being officially diagnosed with so many illnesses would be enough to convince me, but still I kept running. I fell into an even deeper depression, my anxiety was out of control, my physical pain was unbearable, and ultimately I ended up collapsing in the hallway due to sheer exhaustion. As I grew older and received more help for my mental and physical health, I finally accepted the lesson that life had been trying desperately to teach me, but that I had always ignored: I was not like everyone else, and I just had to stop pushing myself, or I would not survive.

As I grow I have learned that the only way I’ll ever be happy is if I come to terms with the fact that I operate differently than others. I need stop resisting my body and learn to move with it, rather than against it, and often that means resting when needed. I’m beginning to understand that when it comes to chronic illness, part of being well is having compassion towards yourself and towards the fact that though others may not be willing to understand you, you have the choice to understand and love yourself.

I encourage you, dear reader, as I encourage myself, to give yourself grace and compassion in every way you can.

I’ve become, a simple souvenir of someone’s kill.
Like the sea, I’m constantly changing from calm to ill.
Madness fills my heart and soul as if the
Great divide could swallow me whole, oh how I’m breaking down.

~Sleeping Sickness – City and Colour



1 Comment

  1. Sleep and I are not friendly either. I’m an insomniac. At work today on zero sleep. Feeling like a zombie.

    I obviously don’t know all there is to know about Chronic Fatigue Syndrome but it strikes me as a misnomer as well, particularly because I’ve heard there can be a lot of other symptoms, like physical pain, associated with it.

    I doubt anyone would make such thoughtless comments if they actually knew what it felt like to be trapped in bed, missing out on life.


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