Category: Illness / Disability

insomniac can't sleep due to Chronic Illness EDS POTS

Once upon a time I could sleep.
Well, I assume I could. Surely I wouldn’t have got this far in life without it? Plus, my mother used to assure me I slept with my feet in a grow bag, hence being a fairly tall girl (taller than my husband). So in order to grow so proficiently I must have slept, right? I bet I slept at night too. When I was supposed to.
Often I dream of sleeping. Of drifting off into a blissful slumber and waking up refreshed and invigorated (HA!). But even they are daydreams, not those cool dreams you normal folk have.
You see, I don’t sleep anymore. I haven’t slept properly in years. Even if by some small miracle I do drift off, it’s short lived and not particularly restful. If I’m super lucky it’ll be combined with night sweats and bad dreams. The kind of dreams that leave you with a terrible feeling in the pit of your stomach.
More often I just lie here, restless and uncomfortable, wishing sleep would come. I listen to the sounds of the house. My cats milling about, my husband snoring (count to ten, you’d miss him if you smothered him), that random noise that you never quite know what it is. I drink my water like a good girl and make endless trips to the loo like an old lady with bladder issues. I write on Facebook and play games on my phone. I go slowly and quietly mad.
This is my life. If I had any less sleep I could probably start hanging out with the gang from Twilight.
What’s the point of this post?? There isn’t one. I’m rambling. I’m making no sense I imagine. But you know what they say, misery loves company. If you’re awake in the night and reading this, at least you know you’re not alone!
To the rest of you… sweet dreams. Don’t take your sleep for granted and remember, a tiny part of me kinda hates you for your sleep pattern right now!!

By Jennie at This Little Life of Mine

Hi everyone! My names Jennie and I’m a 29 year old mum with several chronic and debilitating conditions. I’d like to share with you what life is like for those unnoticed disabled. People like me who struggle on a daily basis, but look fine on the surface. Hopefully through blogs like mine, and others, we can spread awareness and gain a little understanding.

So, I’m disabled. You wouldn’t think it to look at me, but I am. It’s a cruel joke that one of my conditions actually genetically predisposes me to look young and healthy, whilst internally I have the body of a seventy eight year old. (That’s a direct quote from a doctor.) Sometimes it’s nice to look normal. To slap on a smile and pretend to be just like everyone else. But mostly it’s hard, and exhausting. So very exhausting.

Imagine spending every day carrying a tonne of bricks on your back. They’re heavy. They grind you down. Your body creaks and aches from the weight of them. You never get to remove your load, not even to sleep, so even lying down the sharp edges jab into your already battered body. Sleep is impossible. Surely someone will help you? Nobody would let you struggle through life that way?? The problem is, your bricks are invisible. None but you can see them. So how can people help? They see you shuffling and stumbling from the weight, to them you’re just another young drunk. On busses and trains they hog seats, not knowing you’re ready to crumple. Your exhaustion, they say, can be cured with a little rest and some good sleep, a better mental attitude. As for your bricks? Well, surely they can’t exist. If people can’t see them, they can’t be there.

People soon stop attempting sympathy. Friends don’t call anymore. Whispers start about how all you seem to think about is the burden your bricks have on your life. Soon, your bricks have taken everything from you.

This is life with an invisible illness. Please, I implore you, if you know anyone with an invisible illness, help them carry their load. It means everything just to have a hand to hold on this hard journey.

The ramblings of an insomniac.

My Heavy Load – Living with an Invisible Illness