In my head
Behind my eyes
I'm on the moon
Jumping, flying

In my bed
I fertilise
A field of dreams
Multiplying

But here they stay
My heart, my hopes, my wedding day
And here they fade away
And leave me pillow-deep in grey

I have been
A hundred girls
A hundred times
Fantasizing

I was going
To change the world
To claim the stars
Electrifying

But here I'll be
No care, no cause, no cure for me
I'm nobody
Held hostage by this lack of energy

And I wander through the night
And I wander through the ocean
And all the dark places in my head
But I never leave my…


When I first became disabled with ME/CFS, I didn’t have a connection to the disabled community.

I didn’t want one, either. I googled fibromyalgia support groups not long after I was diagnosed and everything I found made me want to run away. These groups were all full of older women who seemed to have given up on life.* All they did was complain. They reminded me of my grandmother, who’s been sick my entire life, and whose only response to my illness was “well, it’s not as bad as MINE.” …


Four walls deep in the world I lie
A wildling from a wilder time,
The thought of it is how I cope:
All covered in leaves and bees and hope.

Four miles deep in the woods I walked
And listened to all the birdlings talk,
A sparrow telling its friends a joke
All covered in leaves and bees and hope.

And when I came out of the woods,
I did not think of cans or shoulds,
I thought of how the froglings croak
All covered in leaves and bees and hope.

And when I had to go to bed
I kept the woods inside my head,
A seedling — no, an envelope —
All covered in leaves and bees and hope. …


It’s World Mental Health Day again. For five years in a row now, I’ve sat down on this day and written about what mental health means to me. Over the years I’ve talked about the importance of making care accessible; the need to be proud of ourselves even when we’re sick; and the role self-compassion plays in helping us heal. But I’ve never talked about oppression. And I think it’s time.

Because mental health doesn’t happen in a vacuum. We live as a part of social systems, and those systems are often set up to harm us. This is particularly true for marginalised people. As an autistic person, I know that if I had been accepted for who I was as a child, if I hadn’t been taught to see myself as inadequate, if the doctors trying to “cure” me hadn’t prescribed literal abuse, my situation might be very different today. I might not have spent decades grappling with C-PTSD. I might have been a happy person, if only they had accepted autistic lives as valid. …


How do you learn to be satisfied with a life made small by chronic illness? It’s like Harry grew up at Hogwarts and then, in his early twenties, got shoved in a cupboard under the stairs for the rest of his life. His only comfort the knowledge of the spells he once cast, the friends he once had, the adventures they once shared. His only grief that now those things are gone. That’s what it’s like to be someone like me. …


Image for post
Image for post
Drawing of a woman sitting up in bed with a laptop. She is wearing a black shirt and a pink butterfly headband. A watercolour rainbow is spilling out of the laptop and making a wave across the room. A small black duck is riding the wave. Art by Salome Mutter.)

Audio version available on Soundcloud!
Part 1
Part 2

Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. With that in mind, here is a masterlist of activities pitched at a level severe ME patients can manage.

This part of the list is different in that it focuses on things you can do on your device. Ideally, of course, you wouldn’t use your device when you’re resting at all. But distractions are important, and you may as well have more options than scrolling endlessly through social media. …


Image for post
Image for post
Drawing of a woman sitting up in bed with a laptop. She is wearing a black shirt and a pink butterfly headband. A watercolour rainbow is spilling out of the laptop and making a wave across the room. A small black duck is riding the wave. Art by Salome Mutter.)

Audio version available on Soundcloud!
Part 1
Part 3

Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. I decided to fix this by writing a masterlist of activities pitched at a level severe ME patients can manage.

I’ve been bowled over by the response to Part 1 of this list. Thank you all for your kind words and feedback! Today we’re moving on to Part 2 . Part 1 covered activities you could do with your eyes closed in silence, while Part 2 consists of sensory activities you can do in your bed. …


Image for post
Image for post
Drawing of a woman sitting up in bed with a laptop. She is wearing a black shirt and a pink butterfly headband. A watercolour rainbow is spilling out of the laptop and making a wave across the room. A small black duck is riding the wave. Art by Salome Mutter.)

Audio version available on Soundcloud!
Part 2
Part 3

Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. With that in mind, here is a masterlist of activities pitched at a level severe ME patients can manage. Every activity on Part 1 of this list can be carried out while lying in bed motionless with your eyes closed, no audio required. …


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I keep thinking back to World Mental Health Day. I keep thinking what I would have written if I was brave.

I would have written that this is hard. That behind all those cute explanations of self-compassion and love I made lies a person that just doesn’t know how to do it. My brain has a hole in its bucket, dear Liza, dear Liza, and any love I put in just comes dribbling out. I think I act like someone who loves themselves, and these days I’m getting good enough to feel it sometimes, too. But my base state, the state I have always lived in, is the one that tells me I’m not good enough. Call that by whatever label you want, the end result is still a lifetime soaked in shame. Right back to kindergarten, when I remember hating myself for being able to read better than the other kids. Right back to memories from third grade that still make me put my fist in my mouth. Because my brain has spent years telling me I’m not worthy of love, I’m not worthy of other people’s kindness, and I’m certainly not worthy of my own. I’ve been in therapy for 13 years now. …


What have I learned about mental illness this last year?

I’ve learned it changes names on you a lot. I went from having BPD to having never had BPD to having autism to maybe also having bipolar to definitely also having bipolar and I still don’t know if I have OCD or ADHD. I’ve stayed the same person the whole time, but the labels have gone scrambling. All I can do is scurry after them trying to catch up.

I’ve learned it’s harder than I ever thought it was, and I was pretty sure it washard. The last year has been an agony of flip-flops, manic to sobbing depressed, from so anxious I can’t sit still or think to so blissed out I forget to eat or sleep. I’ve learned it sneaks up on you, and that life with mental health is a life about always being ready. …

About

Sarah Stanton

Disabled writer. Autistic hodgepodge. I got fifteen chronic illnesses so you don't have to. (She/her.)

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