Ill for 16 years

In February, I “celebrated” my sickaversary.

The details of my falling ill are etched into my memory. I had a team outing from work on a Friday, became nauseous and vomited horribly, recovered slightly but on Sunday I became shivery and unwell -The Flu. Then on Monday, 25 February 2008, I called in sick to work.

After that, my life has never been normal again. What followed were years of searching with misdiagnoses and hopes that it would be transitory – whatever ‘it’ was.

That’s 16 years ago…

Since then, I have never been out to dinner with a friend and I have never been to a museum. I experienced my son’s childhood from a distance. U was completely absent at birthdays, holidays and special moments. I disappeared from my own life and lost my independence.

Now I can say that I have created a different life. Things I find important I’m doing from my bed, I’m trying to help people, set myself challenges (drawing, being creative) and trying to be involved in the lives of the people I love.

But my life is not complete – I am incomplete. I have become more ill than I should have been. If doctors had been knowledgeable about ME, I would have been given some guidance.

I mainly was advised not to rest and to avoid contact with fellow sufferers

Instead, I mainly was advised not to rest and to avoid contact with fellow sufferers. I was also told that nothing was known about ME. Because there was hardly any research into the causes of this disabling disease, I discovered much later. Just as I myself discovered much later that all the exercise I was trying to build up was actually making me much sicker.

Moreover in the early years of my illness, I received hardly any empathy except from my family. I lost most of my friends and was insulted time and again by treatment providers. All of this combined doesn’t  makes this an easy article.

I am furious. Anyone can get sick, but not everyone is let down by (para)medics. All patients are equal; some diseases are apparently just not worth investigating or treating

And that has its influence on someone…

I think about what is and what shouldn’t have been. I think of fellow sufferers Céline Corsius , Lauren Hoeve-Oostveen and all those others who are no longer here. I think about the developments of the past few months and the seeming shift towards people with PAIS (post acute infectious syndromes like LC, ME, Lyme and Q fever)

I think about myself and the human being I became by necessity. And I cry.

Martine

mail your experiences how yo fell ill with ME and what happened after to meglobalchronicle@gmail.com

Table of contents