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Little Glimmers of Hope in an ME/CFS Crash

Sunflowers and birght red flowers in a pot, that I recieved from a friend during my current illness crash.

A couple of weeks ago, I was asked to tell a story at one of the Amsterdam storytelling locations, the Mezrab. The topic of the story was supposed to be about miracles. Now it is no secret to those who know me that I have been struggling recently. I am now five weeks into a big crash, meaning I have been too sick to spend more than a couple of hours out of bed at a time. I have definitely not left the five-minute walking radius of my house for quite some time. And I don’t seem to be getting any better. In fact, I think I might be getting sicker. So when I was asked to tell a story about miracles all I could think was, ‘Tja, fuck off! There ain’t no miracles in my life right now’.

Honestly, ever since getting sick, I have always carried a little ball of grief around wherever I go and however healthy I have been. But at the moment that little ball of grief is not quite as little as it was. It´s actually turning into a big gaping hole of loss.

Once again, it feels like I am losing everything I´ve built up; I am too sick to perform stand-up, I’m too sad to write it, I am not well enough to search out jobs after losing mine, I can’t go out and see my friends, I see very, very few people, and I definitely don’t meet new people, or hang out with acquaintances. There is just a lot of loss.

If I wanted to be the perfect poster girl for chronic illness, I could now say that after getting the invite to tell a story about miracles, I spent more time reflecting on my life and I found the little miracles even during a really tough time. But I am not the perfect, chronically ill little angel. I am a real person, and I don’t want to pretend that I’m okay with my situation right now. I’m not. Very few humans would be. It straight-up sucks! I don’t want to glamourise an illness that is very real, very painful and quite frankly rather depressing.

The reality is that I have spent an exorbitant amount of time crying when I was well enough to cry and avoiding feeling when that was all I could manage. But, much like most people, I really don’t enjoy being sad, feeling stuck, or feeling like ‘woe is me’ all the time. Even though woe is me sometimes! So, I have been working at trying to feel grateful for the small things. Every night, I write three things I am grateful for. But it often feels fake and forced.

However, sometimes things feel different. A couple of weeks ago, when I was feeling down and a little grumpy, my housemate was too. We decided to take the two-minute walk to the lake together and lie in the sun. When we got there, both feeling restless and discontent, she pulled out a little sketchbook and crayons. She started drawing the scene and asked me to join. Now, I am no artist, and she is a fantastic artist, so at first, I was a little hesitant to join and ruin her artwork. But she just passed me a green crayon and told me “Just draw the grass, you can do that”. And so I did.

Together, we drew the summery lake scene. We dotted the bushes with red berries, and we drew silly goldfish in the water and giant swans that were way too big. And at some point, both of us started feeling a little better, even a little silly. And that evening the things in my gratitude list felt much more real, and I felt a little less empty.

A week ago, a friend came over and cooked for me, making sure I had leftovers so I didn’t need to cook the next day. She brought me chocolates that said “Powervrouw”, which means power women. Physically that isn’t too accurate right now… I barely have the power to make a cup of tea sometimes! But, cheesy as it was, it brightened up the days whenever I opened that chocolate box.

Two days ago, a friend came across, and when she came in, she had a bunch of brightly coloured flowers for me. And now every time I look at them, I feel a little more cheerful. They brighten up the suddenly very Autumnal skies.

Sometime recently, a good friend even offered me a cup of tea for support. Something I have learnt since living abroad is that this is not universally a ritual done when supporting someone. In the UK, if someone has had bad news, feels sad or negative in any way, offering them a cup of tea is more than just making a cup of tea it also means “I am there for you, and I am caring for you, I get that life is shit now”. After drinking the tea he just sat and hugged me whilst I cried. Because there isn’t really much to be said anymore, then years in, he’s been there with me for the entire time I’ve been sick. We’ve said it all.

I guess what I am saying is that when things are hard, you don’t need to find the everyday miracles in your life by yourself. In fact, you don’t have to at all. Sometimes, you can rely on other people to help bring the glimmers of hope and let you feel a little better. It’s okay to need other people. Other people want to be there for you too, so you can let them!

Oh, and of course, I was too sick to actually perform at the Mezrab and tell a story about miracles. So I had to cancel. But if I had been well enough, this blog post is pretty much what I would have said!

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