These two photos were taken 48 hours apart. One is M.E. on a good day. The other is M.E. on a bad day.
I am a person with chronic illness. I have M.E. and two auto-immune diseases. Good days are when I can get out and about using my mobility scooter – this has become my lifeline. Due to muscle weakness and joint pain, I would not be able to leave the house without it.
Bad days are when I’m bed bound and I can’t do anything mentally or physically because my body just stops functioning all together. I NEVER have a day when I feel totally well.
Myalgic Encephalomyelitis or Chronic Fatigue Syndrome as its often called, is a debilitating and life changing disease, and one I feel I’m lucky currently to only have at a moderate level.
Even though my life is completely different than it was a few years ago (I was a fitness instructor and personal trainer before I became an author.) most of the time I’m not bedridden or permanently in a wheelchair as some sufferers are.
I spend the majority of my time at home. I use crutches, a rollator and a mobility scooter to get around, as pain and weakness in my muscles and joints makes walking for more than a few steps very difficult.
M.E. is more than feeling ‘a bit tired’. M.E. is a chronic, multi-system condition affecting the whole body. The World Health Organization classes it as a neurological disease. The effects of M.E. are devastating enough to leave 25% of patients housebound or bedbound and an estimated 75% unable to work. M.E. affects 15 to 30 million women, men and children around the world and often begins after contracting a virus.
If you’d like to know more about M.E. and how it can affect you or someone you know, there is a lot of information here on the M.E. action website. https://www.meaction.net/learn/what-is-me/
I am also a great supporter and advocate for disability, both visible and invisible. Many people living with chronic illness often face barriers in their daily lives including a lack of understanding and negative attitudes. Some choose to wear the Hidden Disabilities Sunflower to discreetly identify that they may need support, help, or just a little more time in shops, transport, or public spaces. The sunflower lanyard is NOT simply about being unable to wear a mask, as many now think it is due to the pandemic, but is there to help those that live with hidden disability to obtain help (should they need or want it) when they are out and about.