Posted to CFS-Severe, 1 May 2004.
This message was posted to the CFS-Severe mailing list, a mailing list for those with the most severe types of CFS/ME, on the occasion of International CFS Awareness Day. Each awareness day, many people with CFS/ME post to different groups to improve "awareness" of CFS/ME, and I didn't feel I had the energy to do that this year so I posted this message instead.
Dear Severeies,
This CFS Awareness Day I wanted to talk to those who are probably the
most "Aware" about CFS of anybody I can think of.
Us.
You and you and you and you. And me.
These so severely affected that literally every second of our days and
nights is governed by this stupid goddam diseease. We never get even a
tiny break, we always have to work out if our bodies can "afford" an
activity in advance, even if that activity means taking one swallow of a
drink, or turning over in bed.
This disease has betrayed us. Doctors everywhere have betrayed us -
although with some notable exceptiions. The governments around the
world have betrayed us. Our friends have often betrayed us. For some
of us, even our families have betrayed us.
So what do we have left?
Ourselves.
Our determination to KEEP ON LIVING at any cost. And sometimes the cost
is so high it would be mind-boggling to anybody who didn't have severe
CFS and didn't understand.
So we need to keep up the good fight for another year, guys. Keep on
hanging in there by any means we can. KEEP ON LIVING in this non-living
type of living death.
Just hang on, however you can.
With a round of silent applause for us all,
Ricky
