'M.E. myself and I' by Anna

There’s a voice in my head that tells me my very presence here is insensitive to those who do not have the level of freedom I currently have.

So often I feel between two worlds. I am not well by any stretch of the imagination. Plagued by symptoms daily, even after all this time it’s jarring to witness the misinterpretations and assumptions that people jump to. I know, particularly by this point 15 years in, that I shouldn’t care and it shouldn’t matter. But some days it does.

When I shared about my, what are frankly minuscule, improvements since The Uterus was removed, so many people from within my own community somehow came to the conclusion that I was saying I didn’t have M.E. anymore. Pals? Come on now. A whole world of suffering exists between Very Severe M.E. and remission. Focus should indeed be put on those who cannot in any way be visible because of the extent and severity of their symptoms. My existence doesn’t mean theirs isn’t also true, and vice versa.

I am mostly housebound. If you pressed me for details, I would say that I am currently able to leave my house for a few hours per week. Of course it depends on the week and the day and where I’m going and who I’m with and what’s happening tomorrow and the day after and the day after that, and the weather actually, and so many other things. My life is more nuanced than I ever thought possible.

I am not representative of the M.E. population. None of us are. It’s too varying.

But I am representative of me; where I’m currently at. I am trying to celebrate that. Twenty minutes sat here at one of my favourite places. A 10 metre walk to the bench. A 10 metre walk back.

And I’m showing up here today, for me. To allow myself to relearn to be here in my own corner of the internet. For the version of me today who will suffer for this, and the versions of me who could never have done this at all.

The vast majority of my life is spent not allowing myself to do things because of pacing and Post Exertional Malaise and living very carefully because, in my eyes, a return to Severe M.E. is always just around the corner. Trying to allow myself this bit too.