Who am I? it is important to reflect and decide who you are in life, your dreams and goals, your passion and purpose. But when you are diagnosed with a severe chronic illness it can become a bit blurry.
When you can no longer do the job or hobbies you used to do or think and learn and read the way you used to, it can seem like all those plans you had for your life are a distant memory, an impossibility...
The truth is that although things are very different now, it's still possible to find joy and meaning in every day and even discover or fulfil your purpose.
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 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.
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.
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.