'M.E. myself and I' by Anna Redshaw

I feel so lost sometimes; lost somewhere between two worlds.

I have friends who live with illness who cannot sit up in the beds they’ve been in for months, drink through straws while lying horizontally, rely on bed baths and bed pans…

And then I have friends who don’t live with illness, who work full time, raise children, socialise at weekends, travel…

Where do I fit?

I just don’t know sometimes.

There’s a guilt that comes with progress. And that clouds my mind to the point that I’m assuming I’ve regained full health. It feels like winning the jackpot to regain something ANYTHING after being at your sickest.

In reality though, I’ve ‘just’ reached a point where I can toast my own bread and make my own coffee, shower a few times a week when I’m lucky, wear clothes more often than pyjamas. Those are things that some of my friends can’t even dream about yet.

Sometimes the progress I’ve made makes me forget (although forget may be the wrong word) that I am still very, very ill and very debilitated by that illness.

And then, when I’m around my non-disabled friends it is a stark reminder of how ‘other’ I still am. Three hours of socialising means at least a week of isolation and recovery. Washing my hair means no video call that same day. Mum popping in for 5 minutes after work means I can’t afford anymore conversations that day, except for with my husband.

This life comes with an intense sense of loneliness, even when surrounded with a lovely online community of people who understand. (How lucky we are to have access to online communities now, in ways that simply didn’t exist a couple of decades ago.)

IMAGE: Anna on her doorstep in pyjamas and slippers. Her face is out of shot. A pink mug of coffee is next to her foot.