When I had my last spell of better energy at the beginning of the year I was wildly over-optimistic about what I could achieve. I increased my activity level too much and too fast, leading to a horrible crash that lasted most of February. It was a reminder that I need to find a steadier, more sustainable pace of recovery.
This time round I’ve been more realistic about my capabilities, so when my hot flushes resumed last week to wreak havoc with my sleep, I was better prepared for the necessary slow-down. I’m not happy about the situation, but a slow-down is better than a full-stop.
A couple of articles have really helped me cope with the set-back. First, ME/CFS Self-help Guru’s post about the challenges of managing improvement and then Toni Bernhard’s article How Chronic Pain and Illness Fan the Flames of Uncertainty in Psychology Today. Thank you both for your wise words.
The thought that’s been in my mind lately is that “convalescence is work”. In the digital age we view so many things in binary terms. When applied to health it’s tempting, but too simplistic, to see yourself as either well or ill. This is especially true for chronic conditions which fluctuate and are riven with uncertainty.
In my mind “wellness” pretty much means “able to earn my living by working at a job” and illness means being unable to work. So every time I feel an improvement in my health I start thinking about finding ways to earn my living. Which is pretty stupid really when I still can’t reliably manage the business of day-to-day living!
So, for now, I have to think of convalescence as my work. The pay is uncertain, as is the duration and nature of the tasks involved, but it’s the most important thing for me to be focused on right now. I need to work out how to convalesce effectively in a constantly changing and somewhat insecure environment.
I’ve started making a list of things I need to be able to do reliably and without adverse effects on my health before I even think about work in terms of job, career, self employment etc. Although in some ways it’s a dispiriting reminder of how far I have to go, I hope it will be useful as a benchmark for measuring my progress.
And because everyone needs regular time off from work to refresh mind and spirit, I’ll be including leisure activities on my list. On Tuesday I spent a very happy hour watching the tide come in on Goring beach.