Have you ever been out in town and seen somebody who looks perfectly healthy get out of a car they had just parked in the spot for disabled people or seen somebody on a mobility scooter park outside and walk into the shop? If you are anything like I was before I fell ill, you might think these people are faking and milking the system for benefits and attention, but you'd be wrong, just like I was!
This week is Invisible Disabilities Week. An annual awareness campaign where patients and activists share their knowledge and experience of life with invisible illness and disability. In 2015 I became severely ill with an invisible chronic illness. Before that, I was very judgemental about others when it came to illness and disability.
I believed that if people ate healthy, did exercise and avoided cigarettes, drugs and alcohol that they'd not get sick and that wheelchairs were for people who couldn't walk - the real issue was that I was simply ignorant of the realities of chronic illness and invisible disabilities. I just didn't know any better.
Chronic illness has completely turned my life and the lives of my whole family upside down, restricting me to my house and often my bed for years, but if you ever saw me outside, you'd think I was still completely healthy because my condition doesn't cause any physical deformities and cannot be detected visually. I have an invisible disability.
I came across this fantastic list of guidelines for how to live successfully with Myalgic Encephalomyelitis and just had to share it. It's so refreshing to read a light-hearted account of life with this horrible illness. I'll be sharing this humorous look at life with M.E. below as well as explain the realities of each point in more detail to help with raising awareness. There's also an image you can share on social media.
So here they are, The 11 Rules For Having ME Successfully:
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.
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.
A year ago today I got my wheelchair! I was almost completely bedridden at the time. Walking just a few steps every hour or two just to keep circulation and muscles alive was a chore.
As a family we were house-sitting in the Lake District at the time. It was a long term arrangement, so was kind of our home away from home, but I had been confined to an upstairs bedroom and was unable to get out to see the countryside around me.
I would enjoy, for a few minutes, watching the birds at the feeders outside my window and the gorgeous orchids that adorned every windowsill. Although it was a freezing cold winter, I longed to go out and explore.