#mecvs

My BFF who I love and hate

Since 2009 this timer is the most important item in the house. She is my BFF with whom I have a love-hate relationship. Everybody is ruled by the clock I reckon. ME/cfs patients even more. I can do a lot compared to the bed bound ones. I can take a shower for a whole 10 minutes, for example, or walk my doggies. I can read and write and go to the store all by myself. For people struck by ME/cfs, that counts as ‘high perfoming’. 

My BFF helps me through the day. She tells me when to sit down or to stop folding laundry. She tells me when to log out or how long to speak with my other friends on the phone. And when. I am happy we prove to be a good team.

#MillionsMissing their own lifes

I am one of the millions missing my own life. At least half of it. I have been down with ME/cfs since 2009.World wide there are over 17 million ME/cfs patients. Many ME-patients pass their lifes unseen and unheard. So this number could very well be much higher. As you may know, there is little or no medical help, no cure and, for many patients, no hope. 

Locked up for life. Convicted without a crime.

Then suddenly there is the MEaction Network with a global protest against ME/cfs being neglected by the medical world. In the form of a virtual march, by name #MillionsMissing. People were asked to sent in their shoes. The empty shoe represents the absence of ME patients in social life, from work, from family days. Try to imagine what it means to miss basically out on everything. To be locked up for the rest of your life, like a criminal with no fair trial. Jailed by your own body and guarded by the ME-monster. The tagged shoes tell the story of people like me. Although i could not be there in  person, I am proud to have some flip flops placed in Washington to represent me. To all the people who made this possible, #thanksamillion!

What is next?

This was the first of a series of protests. Hopefully not the last. On june the 6th the Irish wil put out their shoes. Here in The Netherlands, where I live (half a life) we hope to get our own #MillionsMissing protest soon. Unless a miracle happens and a protest will no longer be necessary.