Severe ME Day… My friends talk about their severe ME.
“I wish the the doctors and the governments of this world would realize that:
Even though we can’t undo the damage done and we can’t give life back to those of our number who have already lost it, there are so many of us still breathing. They have a chance to make sure we continue to do so. Sometimes living with this disease, and being part of a community of fellow M.E sufferers, feels like watching a train speed towards a brick wall. If only we had more help to make that train turn, we would get our lives back. I don’t think there could be a group of people more prepared to be utterly alive and to dance through everyday than all of us, if only we can get that chance.
The biggest sadness is that, unless something is done, I know I will come online again one day to hear we have lost another one of our family of friends. Either someone I know and love or someone who is loved by somebody I know. I am also afraid that one day you may come online, and it will be me.
Nobody should live with the knowledge that their life and the lives of their friends are only so uncertain, because no one important cares enough to push for change.
We will go on fighting as we have always done, and we will go on laughing too. Because that is the bravest defiance we have. But we need more and more people to join us by raising their voices to say ‘this is wrong’. the tide of public opinion could change everything for the better. If only it will turn…..”