Although May 12 is ME Awareness Day, a global day of "Millions Missing" protests and demonstrations by people with ME, their carers, family and friends, many patients are too ill to leave their beds and would be lost and hopeless if not for the able bodied supporters who take their places at these rallies and make some noise for those of us too ill to do it ourselves.
I have recently been asked by a few healthy friends how they could practically help our cause. So in this post I will list some ideas and links to other initiatives that would greatly benefit from any support you can give.
When I was first diagnosed with ME/CFS, I felt lost. Chronic Fatigue Syndrome was a condition I had never heard of before and my doctor didn't seem to know much about it either. What got me through was the support of other patients I found online. And they continue to be my support as the years go by! For this reason I have created an ME/CFS community online.
It consists of a few places on social media where bloggers, vloggers and other content creators with ME/CFS (and their carers) can share their content to help support the ME/CFS community better.
My hope is that newly diagnosed patients, or anybody struggling to manage life with ME, would not struggle as much as some of us have to find the support and resources available to them.
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 will post the graphics I shared during the last ME Awareness Hour below. 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.