The 8th of August is Severe ME Day. Last year I wrote about how it affects me, and other than struggling more with communication it’s not changed much.
I’m one of the lucky ones – I have the support I need, and I’ve massively improved from my worst where I spent a lot of time paralysed, had to be flat almost constantly and couldn’t tolerate much light, sound or touch. Eating was such a struggle I ended up underweight. Some people are like that, or worse, everyday. Some people with Severe ME die.
Now I can be propped up, watch easy television and videos, listen to podcasts if they have a transcript I can read (or don’t require concentration), and have lots of hand holds with Johan. On good days I can have hugs, be hoisted into my wheelchair or be washed. Once a month or so I can go out on adventures so long as they’re close by. I’m happy to have improved, but I still miss a lot of things.
These are some of the main things that I miss:
- Special events. I’ve missed multiple weddings, a couple of funerals and a lot of Sammie’s special days over the years. Not being able to be there for people hurts.
- Talking to friends and family. Other than Johan, my care workers and, to a lesser extent, Sammie, I don’t talk to people much. Communicating is now one of the hardest things to do, as it takes up a lot of my energy and I often forget to respond. This is probably also related to also being autistic.
- Seeing friends and family. Even when I try to make plans for friends to visit or to meet up locally, there’s no guarentee I’ll be well enough on that day. Having to cancel seeing friends is one of the hardest things about having a fluctuating illness.
- Being independant. I tolerate having other people help me with washing, dressing, toileting, teeth brushing, moving and other stuff, but I really want to do them myself. Sometimes I’ll do things by myself even though I know it’ll cause payback afterwards.
- Getting washed/changing clothes frequently. Touch is incredibly painful for me, so I can only tolerate getting my body washed (even with wipes) or changing my top on my good days, which is roughly once a week. Hair washing is even less frequent (5 times so far this year), which is why I get it shaved off when I’m able to get to the barbers.
- Hugs. I love hugs, but they’re really painful and cause payback. Sometimes that’s worth it, but it means I can’t have them as much as I would like.
- Independant mobility. I don’t really miss being able to walk (possibly as it was painful even before I got ME), but I do miss being able to get around by myself, either by crawling or self propelling a wheelchair. My current wheelchair requires someone else to push it, and I’m not currently well enough to use a powerchair.
- Tidying/cleaning/organising. Johan is not good at this. I wasn’t great at it, but I was better than he was. I now need to rely on other people to sort out my room (or the rest of the flat), and though we have a cleaner who helps, it’s not how I’d like it. I don’t have the energy to direct other people in how I want it done.
- Feed myself soup with bread. I’m very stubborn especially when it comes to eating, and will feed myself unless I absolutely can’t. I can’t manage cutlery properly so if I have soup I need it in a Sucup (special cup with lid and thick straw) which means I can’t dip my bread in it.
I’m very lucky to be able to do what I am. Today I’m thinking of all those with Severe ME who are unable to do things I enjoy, and the family and friends of those who have died to this illness or its complications. It sucks.