For some of us, the chance to lie around in bed all day would be a real treat. But for many ME sufferers, this is their whole life. Spending day after day looking at the same room, the same pictures, walls, and bedclothes. It’s no fun! And the longer you stay there, the more you begin to lose contact with the outside world.
“Severe ME Day” (8 August) is a day designated by the 25% ME Group for us all to specifically remember those with Severe ME. We are equally determined to make sure that ME sufferers who are unable to leave their beds, or their homes, are not forgotten or overlooked on that day. You matter to us. Your struggles are at the heart of all we do – to find treatments and a cure for this horrid illness.
So we asked you to send in your photographs: to be pieced into a virtual Memory Quilt (or photo montage) of you all.
We didn’t ask your names or any details of your conditions but we thanked those of you who shared their stories anyway. Suffice it to say that many have struggled years, some even decades with this cruel illness. Helen H volunteered to ‘stitch’ the photographs together and regularly found herself in tears as the stories unfolded. But there were uplifting stories too, of small gains and of hope.
We’re thinking of you all. Today and every day.