Posted in Explaining ME

The Rabbit Hole

Those lucky enough to share my friend myalgic encephalomyelitis know only too well the depth of the rabbit hole that is ME/CFS.

Before I was diagnosed, I knew of ME/CFS.  A class mate of my sisters had the illness as a teenager, yet knowing about it made me somewhat naïve. Why?

Because I knew the limitations this girl faced, I assumed ME/CFS was like any other physiological illness and that meant there were doctors to treat it.

How wrong could I have been?!

When I fell ill, I was sucked down that rabbit hole. The one that topples patients on their heads and leaves them at the bottom, with no rope to climb up from.

Doctors can’t answer questions. There is no cure. Turning to the internet isn’t of great use. There appear to be research papers to prove the illness is caused by just about anything and worst of all, there are doctors who say it’s a psychotic illness.

Then there is the strangest argument, that GET and CBT are cures. If they were, would there really be as many of us sick?? (10,000 of us in Ireland alone).

I do agree CBT can be a tool for patients, just as it can help anyone dealing with a life altering experience, because ME is exactly that. It is life altering. But a cure?? No.

Imagine, there isn’t even a biomarker yet. The way in which patients are diagnosed, is by eliminating all other illnesses. There are tests to determine illnesses such as cancers, MS and Motor Neurons Disease, but a patient with ME/CFS has to endure countless tests, some for years, before finally being diagnosed. And then, they are pushed out doctors doors to figure it out for themselves.

While grappling with the illness, most of us losing our hobbies, our work and our social lives with 25% of patients becoming bedbound; we also have to educate those around us. Teaching them how to support us, while working out our limitations and living carefully within them, a lot of us becoming housebound.

Some patients are lucky to have doctors enter our lives who, while scratching their head, are unable to offer help but they will at least acknowledge our illness is real and they will listen as we scratch our way through burrows. For now, this is the best a patient can hope for.

If Only They Would Listen

If only they would listen.
Not to bombs and guns
Instead to one another,

If only they would listen.
To have the minds to stop,
To think, and to give in,

If only they would listen.
To the cries of those they
Hurt, the ones who suffer
Losing, all they have to love

If only they would listen.
Realise both sides are men
Each with women, children,
Wanting to remain.

If only they would listen
Understand they each
Can win, if both agree
To differ and respect
The will to live.