My energy compassion Scale: Deciding when and how to create when living with chronic illness

When I gauge whether I’m ready for creativity I don’t only look at my energy levels, I look at whether it’s compassionate for me to create in this given moment.

Photo by A A on Unsplash

I often speak about the irony of how chronic illness is what opened my creativity, but it is also what has taken it away. A lot of us creatives living with chronic illness grieve the loss of some (in severe cases it’s all) of our creative faculties.

We cannot create in the same way we used to. Our bodies and minds are not always up for creating and we may lack inspiration, either because our worlds have become so small or because our brain neurons cannot fire as much as we would like. Our energy levels dictate whether we can create and often creation has to be broken up into tiny creative acts in order to get anything done.

Living with chronic illness or disability may mean that we have to juggle self-care and our creativity — it becomes a difficult balancing act, because to many of us, self-care is our creativity, but our bodies and minds may not agree. Forcing ourselves to be creative when we are exhausted or our symptoms are flaring up or our minds are inundated with fighting social services or advocating for the right treatment in the medical setting or simply dealing with difficult emotions like sorrow can lead to burnout — and we don’t want that on top of everything else.

When I gauge whether I’m ready for creativity I don’t only look at my energy levels, I look at whether it’s compassionate for me to create in this given moment. This summer, for example, I took a very long break from writing this newsletter because I was dealing with difficult emotions and inner states. Yes, my body was exhausted too, but my mind was just not in a space to create.

That’s why I call it the energy-compassion tool. When gauging whether we’re ready to create, we want to include both energy levels and self-compassion.

Here’s how I decide when and how to create when living with chronic illness.

Checking in on our energy levels and symptoms

As someone living with ME/CFS, the first thing I will gauge is the level of acid in my brain and body. This may not be relevant for all. I can be low on energy, but not have a lot of acid in my brain and body and so I might do a small thing, like edit a paragraph or look through my brainstorm of essay titles/ideas and choose one to focus on. But I need to be very careful if there is too much acid — in fact it usually means I need to rest completely.

I also check whether I have any additional tasks. I get magnesium drips four times a week and the visit from the nurses takes up a lot of my energy. I therefore make sure not to do anything too deep or taxing on those days. Yes, it leaves me three days for the deeper stuff and it’s highly frustrating, but I also know that if I push on those days, then I can’t do anything on my days off.

Evaluating our emotional readiness for creation

When I was editing my music (removing sounds during breaks in the vocals, checking that everything is ok or whether anything has to be re-recorded) I had to be extremely careful not to do this on a day when my inner critic was too loud. I do not always have the energy to deal with my inner critic, and it would sometimes get so loud that I got PEM (post exertional malaise) editing my music. I also found myself having to go into mental discussions with myself trying to convince my inner critic that the music was perfectly fine.

It’s tough on my mental health to create when I’m not emotionally ready. If I’m dealing with a lot of grief, I might take some time off, too, unless I find that I can channel the grief through, for example, song writing.

To gauge whether I’m emotionally ready for a certain creative task I might ask myself:

Do I feel emotionally prepared to handle the challenges of creative work today?

Am I feeling mentally strong enough to experiment without judging myself?

Different activities require different energy levels or emotional states

Instead of planning what to do in a given day, I make a mental list (sometimes I note this down in my journal) of the different things I can do broken down into tiny acts. My list a few months ago looked like this:

• Check whether all stems start at the same time for song X and Y

• Identify a new blog post to write from your brainstorm list

• Re-write the second paragraph of X blog post

• Write the introduction for Y blog post

• Tidy up chapter Z in book — use Trello

• Tidy up the file for song Z.

At that moment, my body and mind were not capable of anything deeper than this level of creation. I could have written “play around with a chord progression and hum some melody lines,” or even “Write a short poem using a random prompt,” but I know that I was not in this space at that moment.

I always map out small tasks that don’t require too deep creativity, but that are still vital for my creative work.

And then in the present moment I can choose what my body and mind feel most up to. Some days, I need complete rest and don’t do anything, or I might start the day off not feeling up for anything, but suddenly get a small surge of energy in the afternoon and then I have a list ready so I don’t have to spend precious energy coming up with stuff to do or breaking large tasks down into smaller tasks.

Having a menu instead of a to-do list helps me to stay flexible and it helps me to listen to my body and mind.

Be OK with having non-creative days and resting radically

Rest is an equally important part of the creative process as ‘doing something’ is. Rest is essential to clear the mind, and to give ourselves a break so we avoid burnout. It is simply more sustainable in the long run.

Radical rest means resting intentionally and before we get so exhausted that we are forced to rest. People living with ME/CFS have been forced to practice radical resting because any kind of exertion will not only make us sick (what we call PEM), it can take away our level of function and make us even more impaired if we aren’t careful.

When we rest intentionally we also rest all the mental and emotional chatter going on inside. This is really hard and it’s important to be kind and gentle in this process.

The way I rest is by putting noise-cancelling earbuds in my ears, put on a light series I have seen before or put on my playlist of guided meditations, turn the sound down, put on a mask and lie there, being conscious to relax my muscles as much as possible. Everyone is different. I know people who need complete silence. I need some kind of white noise so my brain doesn’t go haywire.

I need to find a balance between structure and flexibility. If I have no structure (like creating my lists of tasks or setting goals without deadlines) nothing will ever happen. But too much structure (like to-do lists or deadlines, both of which I stay clear from) will make me sick and is not compassionate. It’s important to find a balance that works for you.

Tell me…

How do you find a balance between structure and flexibility?

How do you gauge whether and how to create or not?

What creative project are you finding the hardest to work on right now?

Thank you so much for reading this post. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.

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Tiny creative acts: How I stay creative in the midst of chronic illness

What chronic illness taught me about creativity

This is what happened when I tried to embrace my disability

Meditation: A Self-compassion Pause

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