I can be really well, feeling good, physically and mentally, as long as there isn’t too much going on in my life.
When things get busy, or stressful (although the two are linked), both my mental and physical health take a quick downturn – again both are linked. Although I don’t use my wheelchair any more, if I am honest there are times when I think if I have to go out I really would like to use it. But actually, I am learning to balance life so I don’t feel like that. To choose to be at home more.
When I go out into the world I very much feel like I have to perform, be a high energy person, I think part of this is running on adrenaline. I have to be big in order to get through interacting with lots of people. This takes up huge amounts of energy and leaves me in an energy deficit for a while afterwards (I use spoons as a metaphor, like many with a chronic illness).
This summer I didn’t make it to Greenbelt as I had a wedding to go to. I did book tickets, thinking I would turn up on the second day, but I rethought this immediately, and cancelled the tickets. I am so glad I did. First of all, Greenbelt has an amazing system to let you arrive and leave early if you have disabilities and I wouldn’t have been able to take part in this.
And secondly, and more importantly, I spent two whole days on the sofa recovering from the wedding. And another day in very gentle potter mode. There is no way I could have handled the drive to the festival, let alone the festival itself. Luckily I had crossed these days out in my diary as I thought this would be the case.
I’ve followed Michael Nobbs for years – he is an artist and a writer who suffers from ME. His main focus is being sustainably creative, he has limited energy, but still creates by working 20 minutes a day. His podcast is one that I find very encouraging as he does these 20 minute work sessions and encourages us to do the same.
When I was at my illest I went on a special course run by a hospital in London and they taught us to do things in 20 minute sessions, learning to pace properly. I still use the principle, although I broke the timer they gave us due to overuse!
His voice and general pace is very gentle, similar to my home pace… in one of his podcasts last week he told us about the Katie Green Bean podcast which was now available. I trust him, so I followed his recommendation.
Wow, Katie was a revelation. She speaks gently and slowly and is very honest about the fact that her creative work takes time.
It really does feel like hustle is the way of doing things. I’ve written about it before. Katie is radical and counter cultural.
I’ve now gone back and watched most of her videos, I’m savouring each of them and don’t really want to catch up as she doesn’t release them that often. What has really made me think is her manner. Katie isn’t being super up beat and positive, the way that I am when I run workshops or do anything in public. That’s not to say that she is dour or negative, quite the opposite. I don’t know, she has a gentle, calm creativity which shines through her. I am jealous. But it has made me think. If I wasn’t having to put so much energy into my interactions, then I could do them and not be so negatively affected by them?
I’m not sure… but Katie’s videos have really made me think hard about how I am when I am out in the world. Would I be happier and have more energy if I didn’t force things so much? Until I watched these videos and felt this deep resonance running through me that THIS is how I want to be I hadn’t realised this is what I did.
I find them deeply relaxing and gently encouraging.