I’ve spent a couple of days feeling generally sorry for myself. Anyone with ME/CFS or a similarly energy-sapping condition will probably recognise the feeling of frustration that your life is on hold, that attempts to do normal, everyday things, let alone things you enjoy, can result in an exacerbation of
symptoms. It is, in short, a huge bummer.
But then I remembered that I didn’t start this blog to wallow; I wanted to start a positive, helpful discussion about living with chronic illness. So here are some positive things I’ve experienced:
I found some other health professionals who have ME/CFS, one of whom, a fellow GP, has just set up a Facebook group for medics with the condition. It’s comforting to know that there are many others with the same condition and I’ve encountered many great people from various backgrounds on social media who have helpful things to say. I was especially relieved to find other doctors with ME/CFS as I was feeling really isolated in my field of work and felt my condition was something I had to hide from colleagues.
On another positive note, although I’m starting to get really fed up with resting, I can feel a little improvement because I’ve forced myself to rest. Patience and discipline really are key in managing ME/CFS. It’s all too tempting to try to return to ‘normal’ activity as soon as you start to feel better but I’ve learned from experience that this just leads to more setbacks. So I’m trying to view the rest as something positive and even pro-active that I’m doing towards my recovery, or at least remission.
A final positive for today is that I’m making tiny steps to being more assertive. I’m naturally not an assertive type so I have to make a real effort in this area. Nevertheless, I did tell a friend that I would have to end our phone call as I was getting tired. Usually, I would have ignored signals from my body that it was time to stop, because I miss my friends and want to talk for longer. But on the other hand, it felt good to take control and know that I was doing something to manage my illness better.
So I’ve managed to remind myself that I’m not going to be a hermit forever and I will have fun again. I just need to be sensible and patient. What do you do when you are feeling fed up with it all? It’s ok to be angry, it’s ok to be pissed off, but you don’t have to be angry and pissed off alone. Feel free to vent here, on Twitter, or in your own Facebook group. Or find a willing friend to moan at. Just remember to ask them nicely to go away when you’ve had enough.