Surviving severe me/cfs

Today I woke up from pain.

To be honest, most days I wake up from pain — and sometimes that means 3 a.m.

I take two different pain medications, and sometimes it’s enough to be okay during the day. There is a level of pain I am so used to that I don’t even notice it anymore unless I stop and pay attention. But nights behave differently. They throw everything at you.

I take pain medication at night even when I am not in pain, because I know it will come. The only question is how strong — and how many hours of sleep it will allow me.

I know why I am in so much pain today.

Yesterday I did two things.
I went through my yarn stash to see what I have for my next project, but I couldn’t finish — it was too much for my body. Later, I went downstairs on the chairlift to check if one of my cats had run outside. My caregiver had left early, and it was freezing, so I had to go.

Today my body is paying for it.

I often think about the Buddhist saying: pain is inevitable, suffering is optional. Sometimes it grounds me. Other times my mind refuses to accept it, and I simply give in to suffering.

I don’t know yet which kind of day this will be. The day is still young.

Here goes another year.

Living with severe illness means that years don’t feel like chapters — they feel like long, uneven stretches of endurance.
This one was the hardest yet.

I spent many months in crashes, unable to do anything — even to think.
My world grew even smaller.
My body grew even heavier.
My nervous system grew even more fragile.

This year I also lost my darling cat Pushkin — my little caregiver, who carried so much comfort and history in him — and later, unexpectedly, another little kitty found its way into my home.
Grief and gentleness lived side by side.
Loss and new love, too.

There were moments when hope was completely gone.
Continuing to survive felt harder than giving up.
And yet — I am still here.

There is new research, new possibilities, and the fragile idea that maybe, just maybe, improvement is still possible.

The world around me is getting louder, harsher, and more cruel by the day.
My nervous system doesn’t handle that very well.
And the inability to participate — to act, to help, to be useful — hurts in a way that I can’t explain.

I don’t dream of a perfect life.
I dream of a little more strength.
A little more stability.
Enough to participate in life again — whatever life is there to have.

I don’t know what the next year will bring.
But I’m still staying stubbornly hopeful.
And just for today, that is enough.