ME/CFS And How I'm Learning To Live With It
I'm writing this blog because there is a silent group out there who have daily struggles that others are completely unaware of. I don't often talk about my "disability" because it puts me in a box, but very occasionally I feel the need to shout it from the roof tops.
Frustration plays a huge part in living with ME and my quick pen and ink sketch says it all. I am in a constant loop of wilt and recharge. ME stands for myalgic encephalomyelitis , otherwise known as Chronic Fatigue Syndrome. I also have Fibromyalgia which for the most part is controlled with strong painkillers. ME though..... that's a different story. There's not much that can be done when your brain muddles and your body just wants to flop!
When I hear of my fellow artists booking up for craft shows and events where footfall is high, I want to join them, but the reality is that I can't. Everything I do has to be balanced with rest. A long day at a craft event might finish me off for days, and it has in the past. Incredibly frustrating when I want to just go for it like everyone else.
So I take a much slower, more gentle approach to my work. It means that I forge my own path. Openings, launches and galleries , the networking scene, the who to know people are in the distance. By evening I'm whacked, and I just can't keep up. If I do make it, I find it difficult to string a sentence together in a coherent way, so I say nothing . Not particularly helpful when you are there to meet and impress people and discuss art.
I've learnt that peace and quiet is not that bad. I've learnt to take each day as it comes, and that work pressure is not synonymous with productivity. I've learnt to accept that it doesn't matter if it takes twice as long to reach my goals. At best my "work" is part time. I've learnt to prioritise the important things. My lessons have been hard and my patience sorely tested, but there is a peace now. After all, art cannot be rushed.
Quietly, gently, my way will be found in the knowledge that the constant, through everything, is that I love my job. There is a saying that "If you love your job you never work a day in your life!" It is what keeps me going. One day, I might just be "normal" again - that's what my husband says!