• Susan Elaine Jones

What to do when you're housebound with a camera

Lockdown stardate 43973 (22nd May 2020)

60 days in for most people in the UK. (I made a little Excel spreadsheet to calculate it.)


69 days in for me since my last none-socially distanced trip outside (I started early, I take maintaining my health quite seriously).


Last week was ME Awareness week, and I shared a fundraising page with friends, with the casual tagline of "I've been housebound half my adult life".


A friend tagged me on Facebook about this BBC article of a photographer who was documenting their response to lockdown, and kindly said that I had "already done it". At first I was confused, but realised they meant my Relapse portfolio (subtitle, "Things to do around the house with a camera when you have literally no energy for anything else").


How I hadn't thought to share my Relapse portfolio for the lockdown before now is a bit beyond me. I have had a few shared jokes with other ME/CFS sufferers about how little my life has changed, I've felt kind of guilty for not being more "thing" about the whole thing. But, in all honesty, my life has changed very little for the many, many years of being housebound with ME/cfs.


6,108 days with it to be precise. And counting.


Because even though I'm delighted to be having a good spell of physical health right now (I can even go running), the ME is still there. At the minute (well, past 6 months), it has been fuzzing and fogging my brain so I haven't been able to read any books, find finding words very tricky, and concentration and memory are badly affected. Which also means the very few jobs I could be doing on my computer are all badly held back as they're just too challenging.


Fortunately, I've learned a lot of patience and dogged determination from this illness. Which helped me build a photography portfolio; get a first class degree through distance learning; organise a few death awareness events (one of which was also meant to be last weekend, but is now planned for the never-never), and co-organise the local ME support groups (for which we are bracing ourselves for an influx of "post-COVID-and-still-not-any-better" members as it looks like this virus may also kick start the Post Viral Fatigue (PVF), which then may become ME...).


So, these things will get done. With pacing my energies sensibly. Not pushing too far beyond sensible limits (well, often enough to stay sane, not so often as to exacerbate the ME/cfs and worsening the symptoms for more than a few days. That way, years of housebound are found.) Everything just takes time...


So, with a bit of your time, maybe enjoy the Relapse portfolio.

And, consider donating to the ME fundraising page. in case we can give years of useful time back to people currently housebound/bedbound with this bugger of an illness.