Thursday, 1 September 2016


September always gives me a slight, quiet shudder, I almost don't know it's there, but I feel it. It's the anniversary of my going to France to study for a year and becoming ill, with what turned out to be the Coxsackie virus that I'd picked up before going  - most likely when waitressing. Though feeling like hell, I went back to France twice - train/ferry/bus - when no one could tell me what was wrong,  really dragging myself.

Really dragging myself.

Then I got flu in France. As soon as I could, I came home.  Got the bus/ferry/train again. I remember passing houses in Rouen and thinking of Madame Bovary.

Then the nightmare began.

That's thirty-four years ago.

I will be grateful forever to Professor Behan for diagnosing me, telling me why I felt like I was dying.

I will never forgive those who did not believe me. Never.

It has just gone midnight, I have a wee tear, I am not given to self-pity but sometimes I do think, this is all very fucking sad.

I do hope maybe there will be effective therapies in my lifetime. 

“Despite the heterogeneity of CFS, the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients,” said Naviaux. “And interestingly, it’s chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death. In CFS, this slow-down comes at the cost of long-term pain and disability.”

Dauer state, I like that.


Tina Rodwell said...

34 years of not having freedom is harsh and I will never forgive those who did not believe you either X My son 11 3yrs in and ... Well what can you say apart from you are a hero x

nmj said...

Hey, Tina, That's a very good way to put it, not having freedom. So sorry about your son, may he rest well and recover... I constantly pushed myself in first decade, so little information back then, and I foolishly did all the wrong things, not listening to my body, meaning I ended up bedridden. Those who didn't believe me are no longer in my life, haven't been for many, many years, but they caused havoc at time, one in particular - though we share blood - I am much better off without her. Sadly, you just can't forgive the trauma of not being believed, unless, perhaps great apologies are made. Wishing you all best. x