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 being a very part time researcher (from home), ME advocacy with ME Action Network, watching Netflix, going online and using relaxation resources.
In the summer I enjoy sitting outside in my garden. On good days (about once a month) 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.
2017 edit: for the past year I’ve been getting involved in ME advocacy/activism since my terrible experience of lack of appropriate healthcare when I was paralysed (see this post). This involves stopGET ( www.stopGET.org ).
Surprisingly, I’ve just started very part-time work on a research project into chronic illness with Catherine Hale and the Centre for Welfare Reform. This is very encouraging personally. I’m working annualised hours from home. I’m also very interested in the topic of the research. I’ll explain more as it goes along.
There are probably several different narratives I could tell about my history with ME. 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 relapsing, remitting style pattern earlier on, with the better periods being fairly normal. Over time I acquired more symptoms and it’s much harder to get over setbacks, the repercussions of exceeding my energy limitations became longer lasting.
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, possibly full ME remission and mild POTS. 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.
2017 edit: I’m finding that my cognitive ability has improved but my problems walking are increasing and can be very disabling even within the house (such as getting stuck upstairs for a month recently).
Update: in December 2014 I was also diagnosed with PoTS. This diagnostic journey is chronicled here on the blog. It also confuses which symptoms and treatments are good for which condition, which maybe worth bearing in mind. I wrote a post comparing ME and PoTS and a post encouraging everyone with ME to check for POTS.
I have other experiences which are relevant to the creation of this site.
- I am a psychology graduate and have written a dissertation on health psychology
- I am a qualified to teach adults and have teaching experience
- I have worked for disability charities and understand the Social Model of Disability and accessibility requirements
I am not a chartered psychologist though, see here.
If you would like to share other free/cheap resources or tell me your story, please write to firstname.lastname@example.org