In a way collapsing was the beginning of my recovery – as it meant I got a diagnosis and I started taking energy management more seriously – managing it, rather than using up whatever was available. Like most people.

It also started me off painting, one of the few good things ME has brought me. Just for therapy and gifts … here’s one…

It took me five years to recover from that level of exhaustion and since then I’ve been pacing myself carefully. Initially, I trained in shiatsu but couldn’t maintain it (although I’d love to take it up again in a more supportive situation). Then I set up a freelance academic proofreading business that has been a brilliant way to earn money from my bed and connect me with people all over the world. It’s increasingly part-time now but still very interesting.

Now, still pacing myself, I’m well enough to live relatively close to nature in a small wood, where the peace mostly outweighs the effort.

But I see pacing as a (very long) stopgap as I’m still in a persistent pattern of continuously improving and getting knocked back by trivial but energy-sapping things. And feel I need community and understanding to get out of this pattern.

I’m not especially interested in finding my ‘tribe’. I like all sorts of people, many very different to me. But, hopefully through a community, I’ll find some kindred spirits from different walks of life. One thing I’ve found with ME is the sense of connection I have with people who have lived very differently to me. (And I like that, and think it’s good for the world.) Sharing an experience of being chronically ill in such a critical culture seems important. And being sensitive to things that many people don’t notice… and being dismissed or invalidated however challenging our situation.

On the other hand, I’m very interested in living with people who care about nature – by benefiting our environment as well as appreciating its therapeutic qualities. And perhaps there are useful parallels between how we manage our own energy and how we use the planet’s limited resources. So it seems to me that being able to live more in tune with our natural rhythms – which is seldom possible unless we live very isolated lives – could help recovery immensely.

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