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The Forever Night Of ME/CFS

The Forever Night Of ME/CFS

I went over my limits and crashed the other day.

When I don’t crash,
I feel stable,
Like I could have a good day,
And some small part of a dream could maybe happen.

When I crash,
I am uncertain,
I am afraid,
I don’t know if I will get worse,
Or how long it will last,
Or if I will ever return to the condition I am in now.

It is a fear of the darkest unknown there ever was.

Absolute loss of control of my own mind and body free falling into an abyss darker than night.

Too dark to pray,
Too dark to hope,
Too dark to even think of anything,
But to hold onto whatever last bit of light I can find.

Or succumb to the abyss.

And maybe.
Maybe if I hold on tight,
Days or weeks or even years from now,
With luck,
See the light of day again.

Memories tearing like tissues of all the dreams I thought might be made real,
Tearing into pieces so small they float away,
Into the forever night of ME/CFS.

I remember their presence but the dreams are gone,
Fleeing my mind like ghosts.

Only a void remains,
And the pain of knowing I caused this.

I went over my limits and I lost it all.


I wrote this in a raw, emotional state the day I crashed. I didn’t mean to write a poem and I’m not sure it is one, but dividing it into lines and adding commas made sense to me when I wrote it.

This is meant to be an expression of what we all feel when we crash. Which is important for us to share so we know we are all going through the same experience; Especially when so much of the world is constantly telling us we are crazy and our experience is "in our heads". What we feel and experience is NOT crazy and we are NOT alone.

Sometimes the truth about this illness is that we suffer and it is important to express that honestly so ME/CFS patients around the world can relate and know we are not alone in our suffering. But is is also true that there is always hope and beauty intertwining with that suffering. There are vines of hope and beauty growing through us and everything around us at all times.

It is also true that the decisions we make affect our health so it is hard not to blame ourselves. I think every ME/CFS patient does to some extent. But the bigger truth is that having ME/CFS severely limits our options often to only choices that will hurt us and we are left trying to decide between terrible or horrible; Trying to eek out shades of what is worse and what is even more worse. Having to constantly make such horrific decisions in the first place is part of having ME/CFS and no part of that is our fault. ME/CFS and everything that comes with it is an illness.

I will survive, I don’t know how my health will be impacted, but i will survive. This crash does not mean anything is over, it doesn’t even define anything. The world is constantly changing and we are constantly changing too even if it doesn’t feel like it. We have no idea what the future holds. Our condition and circumstances can change in an instant. As mysteriously and quickly as we became ill with ME/CFS, things could just as surprisingly get better. I know because they have gotten better like this for me in the past and I had no idea these positive changes were coming.

If anyone reads this and feels intense negative emotions or suicidal thoughts, please reach out to someone you know to communicate with. There are many ways to reach out and get help or find someone to talk to in chat or video or on the phone. The ME/CFS community is here for you and wants to help you. This is an extremely devastating illness and the emotions we have to face are intense. Do not face them alone.

The piece of writing above is an expression of what we all experience during our darkest moments when we crash and I hope it makes you feel less alone seeing it expressed and documented plainly for you and the world to see.



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