Am I running out of time?

As a singer songwriter living with chronic illness at the age of 44 time seems to become an issue…

Photo by Aron Visuals on Unsplash

Hi friend,

I have felt an existential angst lately. Well… I have felt that since becoming ill with ME/CFS — even at its mildest, half of my life was taken away.

The angst comes from an issue with time.

Every year in January, on my birthday, I have felt this the most. Another year gone and I was still lying in bed in a darkened room.

The angst was a quiet hum in the background and it got louder here and there and then dissipated into the background again.

But lately it has started screaming — for a good reason.

These past six months I have gotten better.

I don’t consider myself to be in the severe category of ME/CFS anymore.

While I’m still in bed a lot of the time, I can lie with the curtains open now, I can sit at my desk and paint for more than an hour, I can sit upright at the piano now, I can make no-knead bread and a bowl of pasta, I can train my singing voice, I even went to a café twice, visited my uncle and visited my friend AND I went to a chocolate shop and bought my own chocolate (I was so stressed about the new ways of paying!).

I want more! I have become even more hungry for life.

Don’t get me wrong — I am so fricking grateful and my thoughts and love go out to every single person still lying in their beds in pain.

But getting a bit more life after nine years of being 95-99% bedbound… that angst takes on a different colour:

I feel like I have to spend my time correctly, that every second counts, that all the things I promised myself I would do when I got better I will actually do. That’s a lot of pressure.

The thoughts going through me constantly are:

Am I doing enough?

Am I using my time wisely?

Could I be doing more?

Arg I am running out of time, this is going too slowly!

Is there something I could be doing that I’m missing because I am so used to doing next to nothing?

My brain can’t seem to fathom and organise all the small things I want to do in a day.

I have physiotherapy exercises that I am doing throughout the day…

I am taking an online art education on my own time…

I am practising ear training…

I am training my singing voice…

…and tending to a sourdough.

I have to write everything down and I have alarms on my calendar to remind myself of ‘all these things’ because my brain can’t remember them all, it’s not used to remembering that kind of stuff.

My brain feels overloaded these days, but I hope it comes around.

I am still having troubles with my creativity and I don’t know if it is something I can train, or whether I am still dealing with too much neuroinflammation for my brain to create new pathways.

I still remember how I used to be able to sit in creative flow for hours and have words and sentences come to me so easily. I miss that!

But my brain still feels very blank — and dulled. It’s like not much is happening and there isn’t much space in there either.

My parents often have to remind me that I am still sick and I can’t have the same expectations as an able-bodied person.

I know, I know… but I am sooooo sick and tired of being this limited. My patience is running out and that’s a good thing.

I want to get my life sorted, I want to play more music, I want to make more art and I want to get out into the world and share my voice and presence.

The feeling of running out of time is ever-present. I am 44 and still have a full life to re-build and I am nowhere near close to a full recovery.

Will my body improve enough in time? And will I have the capacity to do what I want to do in time?

Tell me…

Do you ever feel pressed for time?

Have you ever had existential angst?

How are you doing at the moment?

I’d love to know in the comments!

Have you listened to Lonely Birds?

Lonely Birds is a song about our western loneliness epidemic.

All proceeds will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. Please consider purchasing on Bandcamp to support the cause.