Grind Studio

Zeraph Dylan Moore

I'm a disabled artist with CFS/ME, a complex nuero-immune metabolic illness that causes me to be limited to my house and often my bed. Explore my life making art with CFS/ME through my blog and videos!


Tidal variants: staying steady within the shifting landscape of illness

Aug 25, 2017 | Posted by Zeraph

It’s been tough lately. Sometimes I don’t want to write about that here, because I’m not sure that suffering is instructive, that it has value that can be transmitted to others. But it is sometimes the truth.

I’ve been pacing using a heart monitor for about a month now, which entails using a heart monitor to “pace “myself, that is, to stay within the energy envelope allotted to me each day by CFS.

At first, there was a clear trajectory of healing. The more I rested the better my heart rate was, and the more I could do without raising it problematically high.

However, as I started to do more, my heart rate jumped up and hasn’t come down with any consistency. I still had energy to do some things, and that meant a lot of painting and being able to express myself in ways that are often off-limits to me due to my disease. But I knew that in a way, I was on borrowed time, benefiting from my earlier rigorous resting. I knew I would run out of energy eventually, and there didn’t seem to be anything I can do about it. And that has come to pass, with the last couple days being very low energy with lots of pain.

What I find hardest to deal with about all of this is the jitteriness and anger that it produces. I am so frustrated by not being able to do things that I want to do, and my frustration has no outlet. I would love to exercise or clean or spend hours painting like I used to, because these things give me a way to work through challenging emotional energy. I’ve use these methods to cope for a long time, and CFS has mostly put them out of reach.

However I really do treasure the time that I have had recently when I have had more energy and have been able to do more. I read a book, I painted quite a bit, I talked to people. Sometimes in these interactions, there is something close to freedom. I want to have that, to have more of it, to increase it. I’m dedicated to that goal, but the path is anything but straightforward. It involves constant problem-solving, endless determination, and undying patience.

So I struggle on. In a lot of ways I’m just praying for strength, reaching out to the world around me in the hope that it will in some way fortify me. This is a struggle not just to bear up under my illness, but to actually make headway in defeating it. The scope of the struggle is so great. If I was looking for a teacher of patience, I found it.

So I keep on. I hope along the way there will be enough moments like there have been in the last few weeks, times when I’m able to do things that nourish me on the deepest levels. If I have that, it will help me keep my head steady and resolute in pursuit of what I need to have to make my life worthwhile again.

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