I live in a small terrace house in England with my partner and my miniature Schnauzer. My activities are limited at the moment and mostly involve watching Netflix, going online and using relaxation resources. I have a novel planned out about a community of people with ME who move in together. I’m hoping to use it to learn how to write fiction, but so far I haven’t been well enough to get past the planning phase. My cognitive ability is returning more quickly than the physical side though so I’m hopeful.
In the summer I enjoy sitting outside in my garden. On good days (about once a week) I can go with my dog to the park on a wheelchair ‘walk’, or go out for a coffee. I find the sensory stimulation of going out is often too much, so a powerchair isn’t enough to make the outside world fully accessible to me.
There are probably several different narratives I could tell about my history with ME/CFS/Fibromyalgia. The simplest explanation is that I developed it as a repercussion of glandular fever when I was 19 in 1998. It took a few years to get a diagnosis, partly because my sister also had ME but my experience was quite different from hers. I had a definite boom and bust pattern, with the boom periods being fairly normal. Over time I acquired more symptoms.
I used to be able to maintain part-time work through general pacing, although I usually felt ill. For a period of time a decade ago I was 95% recovered and working full time hours. Over a few years I had downward steps following viruses. Then in 2012 I had a sudden, severe relapse and I haven’t bounced back from this.
I have been mostly housebound/bedbound and my legs turn to concrete when I try to walk more than a few metres. I seem to make reasonable improvements and then setbacks undo it. Since 2012 I have been concentrating on learning more about relaxation techniques, alternative approaches to CFS/ME and current research developments. I was finding it difficult to read (as if I’ve developed dyslexia), which made it hard to access information. I hope I can help you by providing resources all in one place. My difficulty finding accessible, affordable tips was the motivation to start this blog.
I am no ME guru, as I am still virtually housebound myself. I hope that one day this page will contain my recovery story.