When I first got ME/CFS, I was so utterly exhausted, I slept many hours a day and I slept at night too. Later I was introduced to one of ME's most horrible symptoms: insomnia. I know the frustration and despair that comes from not getting sleep for nights on end, so in this post I will explain how I overcome insomnia whenever it creeps back into my life.
It's quite ironic that people think having ME/CFS means we sleep all day when really we're just utterly exhausted, mentally and physically drained, but unable to sleep, especially at night.
I found myself nodding off in the day, trying hard to stay awake, and then at night when it's finally okay to go to sleep, my body and mind are wide awake and in no mood for rest, buzzing and restless, despite still feeling utterly wrecked.
It might surprise you how often people with chronic illness are asked what they do with all the free time they have at home. I think many healthy people have no idea how difficult it is to deal with unrelenting symptoms on a daily basis. I hope to shed some light on this by sharing with you what a day in the life of Severe ME is like.
Every Wednesday the ME community comes together on Twitter to raise awareness of this debilitating chronic illness. We share recent media coverage, research news, our personal experiences and more. Making new connections and supporting each other. I often join in and share various ME awareness pictures during that hour.
Below you will find the graphics I shared during the last ME Awareness Hour. I hope this will help you understand what life is like with ME/CFS. If you have learned something new or find this post might be helpful in any way, please share it or download the images to share on social media and help raise awareness.
Sandwiched between 2 hot water bottles, under layers of clothes and blankets, medicated - multiple times, in the dark with sunglasses on, my phone's screen dimmed and the blue light filter on so that I can bear looking at it for a few minutes at a time.
This was me yesterday after I had a nap on the sofa where I toppled over after lunch, in a bundle of pain and tears as the previous night's insomnia caught up with me and my body was flooded with pain in every muscle and every bone.
One of the most frustrating and debilitating symptoms of ME/CFS is the shaking and trembling after minimal exertion. Something that healthy people might get after a strenuous exercise. I was lying in the bath relaxing last night when I felt the shakes coming on. This is what I get for walking just a few steps to the bathroom and getting undressed. I started feeling a bit of the internal tremors at that point, I imagined it might come to the shakes, and then as I lay in the tub to rest, before washing, they suddenly started up. (see the video clip below)
This is just the start, it then takes over my whole body and that's when holding my phone, or anything else for that matter, becomes very hard.