Humans of ME/CFS

At first, I thought I was depressed. I had just got back from holiday and felt exhausted. My joints were so painful I could never get comfortable. I had heart palpitations and could not concentrate in my job to the point where my employers were concerned about my lack of productivity. I tried doing exercise to boost my mood, only to find I felt worse for it. I eventually quit my job as I felt it was draining me and I wanted to focus on being a musician. I was praying that the job was the cause of my exhaustion.

Eventually, I saw my doctor who was amazing and said it might be ME/CFS. After being prodded and poked and tested for everything, a specialist confirmed it was. It’s been a learning curve and there have been ups and downs. Now I feel that I have accepted it and have found a balance to keep me well enough to do what I want to do (although in a very low impact way)! Sacrifices have been made and I do miss my old life at times, although, I know how lucky I am to be mobile.

One thing I wasn’t prepared for is sudden intolerances to certain foods and things. I can no longer have caffeine and tiredness now makes me physically sick. When first diagnosed, I used to push myself as I was in denial. I soon learnt that my body will not tolerate that and will get its revenge! Also, the brain fog at times has been terrible. I forgot how to say the word “thermometer” for months. My friends and I do laugh about my brain fog at times (if I don’t laugh, I’ll cry)! “Flood lids” instead of “drains” is a favorite.

I think one of the worst parts of my ME/CFS is having to be reliant on my mother and sister so much at times. I’m in my thirties and, when I have a bad flare, they have to help me cook and read documents for me. Fingers crossed, I have now found a good balance between managing my illness and living my life. Thanks to the National Health Service, ME/CFS groups, and social media groups, I don’t feel alone in this and I can talk about my illness and worries frankly with people who truly understand.