I’m often asked how ME/CFS affects me/my life. As I’ve been asked several times recently I thought I’d try and tackle that question. When I get asked I shy away from it. Not because I don’t want to explain but because it’s so much and so difficult to explain. It’s taken me years to even remotely understand it myself so it feels like a huge thing to try and explain to people who don’t have it themselves. It is also so much to explain, as there are so many symptoms. Not everyone with ME has all the symptoms, the symptoms can come and go, get worse or better, suddenly appear out of nowhere a few years down the line, fluctuate, and be amazingly unpredictable. I end up not going to the doctor when I get new symptoms because a) the docs don’t really know about ME and usually can’t help anyway and b) I think it’s probably just another ME symptom so live with it.
I also find it difficult to explain because it feels so overwhelming, there’s so much to explain, and the brain fog and lack of energy can mean to take that time/energy explaining can mean using all my energy and causing pain; basically a flare up of symptoms (known as a crash). So, explaining the illness can make me ill.
Lastly, if I’m not having all the symptoms when I’m explaining I find it hard to recall what they are and how they make me feel. Lastly, lastly – talking about it uses valuable time/energy that I’d really like to use elsewhere, plus talking about it can be quite depressing.
Anyyyyway. I thought I’d tackle trying to explain one of the symptoms today as it’s one of the worst for me when I get it. I’ve got it today so will try and explain how it feels. It’s part of the pain symptoms. I don’t always have it but when I do it’s so difficult to get out of bed and do things. It makes me incredibly grumpy as it’s so painful. It’s all over body pain, feels like there’s poison instead of blood in my vains. It’s so hard to explain. It feels heavy and sharp, achey and dull. My joints feel like fire, my muscles and organs feel like there are needles in them. I just closed my eyes to focus on it to find a description and realise, maybe, that one of the reasons I can’t explain it is because I spend so much time trying to ignore and avoid it, when it’s this bad, as it can feel too much to bear. It’s interesting that when I’ve done guided meditation for pain, they guide you to focus on the pain, that which you are trying to get away from, and that seeing, feeling, perhaps actually accepting the pain can help to dissipate it.
So, that’s good, writing this today has helped remind me to try and lean into it. Accept rather than avoid and fight. And it may pass quicker…pic of me was on a good day 🤓
Here’s a pic of me on a good day 🤓
romskiwrites 