'M.E. myself and I' by Anna

I sometimes find my life with M.E. to be a battle between Doing This Is Asking For Trouble, and, I Am Allowed To Do The Things When I’m Well Enough To.

As with almost everything with M.E., it’s a grey area. Society talks about how this is our one life and we must grab it by the horns; do things while we can. Seize the day! Live each day as if it’s your last! But you simply cannot do that with M.E. It’s unsustainable.

This is not the kind of life where you can repeatedly throw caution to the wind. The consequences are severe and vast and far-reaching; disproportionate with the event that caused them.

Instead, with M.E. I was told it must *always* be Pacing over ‘Booming and busting’. But sometimes I allow myself to merge the two. Because life happens. The conditions for me to be Able are far from lenient. Weather dependent, temperature dependent, symptom dependent, severity of symptom dependent… If these align, then I might dare to do a thing, even if it’s at odds with good sense.

I often think we should be congratulated on our restraint. We wanted to have a day out recently. Days out aren’t really a thing for us. It’s an hour here and there, or a few if we’re lucky. In the end we didn’t manage it at all. I needed to be as okay as possible for something else the week after. And as someone who has long since been unable to have it all, I had to make a choice. I’m a naturally sensible person but it’s still frustrating to theoretically have to sit on my hands. I have to compromise with myself every day.

I’m hardly wild. I’ve known my limitations for a long time now and never push my luck to a point that borders on abject denial. I might have a scoot round the block, or a coffee out, or my sister might pop in, or I might go to visit my parents where I’ll sit on their sofa instead of my own.

But even when I experience this relative freedom, there is the knowledge that it’s all fleeting. This can help savour things on a whole new level but also be bittersweet. I’ve had times before when I’ve managed to get out on my scooter, and then simply not wanted to come home. Not because my home isn’t lovely, but because home is where the suffering will kick in and where I will have to remain until it’s lessened its grip that little bit again.

The internal battle between Doing This Is Asking For Trouble, and, Allowing Myself To Do The Things When I’m Well Enough To can come down to an issue of frequency for me. I can’t do much, and I can’t do it very often. But at the same time, I’m not doing much so maybe I can get away with doing it again quite soon… This is something that loops through my mind, and there’s never any knowing or any guarantee which argument will win.

Add in my experiences of a more restrictive and severe severity of this illness and it becomes even more clouded as to what I should or shouldn’t be doing. 2010-2014 Anna would be delighted to have these options. But 2026 Anna has the experience of the 2020 relapse that demonstrated how far one can fall if you dare to live even a little.

All this to say, I’m increasingly allowing myself to make it up as I go along!

It’s worth noting that I have the privilege of being in a position where I am looked after during the days and weeks after Doing A Thing when my health dips beyond what it ‘normal’ and standard for me. One of our earliest conversations after moving in together was my now-husband saying he’d rather come home to me in a heap but delighted to have got out for a scoot, than to come home to me in a heap but with an immaculately clean and tidy house.