I cannot get up. I don’t want to get up. I am safe in bed. I’m not safe when I’m not in bed.

But I have to get up.

So I sit up gingerly, carefully, cautiously. I push my duvet back and slide to the edge of the bed. I look at my slippers on the floor. I must put them on carefully so my pyjamas don’t touch the floor — but my pyjama bottoms are too long.

Lily Bailey shares he experience of suffering from OCD. Post continues below.

I roll the hems up, then carefully step into my slippers. I hold my breath. I don’t know why; I just do it.

Getting changed is painstakingly slow as I must be careful of every movement. A lot of the air feels bad and my clothes must not touch the badness.

I do my best to be careful, but it takes me 20 minutes to get changed — and part of that is because I’m overthinking what to wear.

Which clothes will be safest?

None will be safest. I know that.

But I can change them every few hours.

It will be fine.

I am desperate for the bathroom now — I had to get changed first because I cannot leave my room in my pyjamas — but now I hop through the kitchen, careful not to brush against anything. There are so many dangers to avoid in the kitchen. Everything is bad. The chairs, the table, the dresser, the cupboards, even the doors.

I get to the bathroom, and it is a relief.

But it’s a scary place.

Terrifying.

Again, I do everything gingerly, carefully, cautiously.

Then I’m standing in front of the sink. My reflection in the mirror looks gaunt as I wash my hands eight times. I shake them dry because I cannot use the towel. The towel is bad. I look at it, and it is alive with badness, the fibres of it moving, breathing, screaming.

I am lost inside myself, and I am screaming because I am so scared and feel so unsafe, but I can’t do anything and no one can hear me.

I open the bathroom door with my foot, and then I grab the paper towels. I use them as a barrier between the cupboard doors and my hands as I make my breakfast.

I inspect all the spoons to find one that meets my criteria of what is safe and what is not.

I don’t find a single one.

I decide not to eat.

I put my coat on to go out to the ponies. I put my hat on, even though it is already hot. The sun feels too close. My Wellingtons feel bad on my feet.

I walk to my ponies and guinea pigs, and I feel numb. I am lost inside myself, and I am screaming because I am so scared and feel so unsafe, but I can’t do anything and no one can hear me.

My screams are silent.

I tend to the animals in a way that is probably strange. I know that it is, but this way I avoid touching them as much as possible, even though I know my pony wants a scratch behind the ears.

I tell him I’m sorry.

He doesn’t understand.

 

View this post on Instagram

 

I was discharged from in-person therapy today! Still have to undergo the rest of my treatment plan for the brain inflammation, but the psychiatric effects of the inflammation are now generally low-level. And I took a selfie because when my mum saw me she said my hair looked like mermaid hair and that made me happy. It’s also the first photo I’ve been able to take of my face for a long, long time, so please ignore how awful I actually look. I’m not at the stage where I can actually do any makeup again (though my handwriting is back to normal now!!). Also, this is only the second time I’ve been able to wear my hair down and properly brushed (well it was still a bit knotty here…) because my brain inflammation attacked the habit-forming mechanisms, making it hard *not* to do things, and I COULD NOT WEAR MY HAIR DOWN AT ALL. It sounds super silly, but I was genuinely terrified of wearing my hair down. Just as I became terrified of books and donated nearly all of mine as I couldn’t stand to be around them…

A post shared by Madeline Dyer (@madelinedyeruk) on Jun 14, 2019 at 11:53am PDT

I collect the letters from the mailbox on the way back. The moment I’ve touched the letters, I feel dirty, horrible. Thousands of people have touched these letters — I know they have — and they feel alive, just like the towel in the bathroom felt alive. Thousands of people’s fingers are now touching my hand.

I open the door with my other hand. Put the mail on the mail pile, flinging the offending letters there as though they are hot coals. But they have already burnt me.

I wash my hands, six times, seven. Maybe eight. I don’t count anymore. I just scrub them. The natural oils of my skin were destroyed long ago, and the soap sticks to my hands.

It’s reassuring — until it isn’t. When I realise it’s never going to leave my hands. That sticky residue.

My hands are not clean.

I am crying.

I run to my room, opening and shutting the door without using my bad, bad, bad hands.

I get changed into better clothes, and then the hand-washing begins again. It has to, because the clothes were bad.

And then I’m wondering, What if I didn’t pay enough attention when I changed my clothes and now the badness is on the new ones?

Am I changing them again? Yes.

I sit for the rest of the morning on my bed, lost in my haunted mind.

***

Lunchtime comes. Lunchtime goes.

I am hungry, but I am not hungry. Not hungry enough to face going out there. The kitchen is a war zone. All the surfaces are alive — and I am pleased I know this now because I now know that they were always alive. I just didn’t see it before. I was blind.

But I’m not blind now. So I can be careful. I will be careful.

I will never be careless again.

I need to eat, and so I make myself a sandwich, washing my hands twice between each movement I make. I open the fridge door, I wash my hands, I get the butter out, I wash my hands, I get a kitchen towel, I wash my hands, I reach for the — no, I’ve done it wrong, I need to wash my hands…

It takes me hours.

I am drained.

I am scared.

People ask how my day is going, my phone screen lighting up with their messages.

But they don’t really want to know. Not this.

 

View this post on Instagram

 

This was taken the exact second before she turned and sneezed all over my face. #pony #shetlandpony #shetlandsofinstagram #horses #equine #ponies

A post shared by Madeline Dyer (@madelinedyeruk) on Oct 3, 2018 at 3:31am PDT

At one point I trip and my foot leaves my slipper. My sock touches the bad, bad, bad floor.

I start crying.

I change my socks, gingerly, carefully, cautiously.

I better change my jeans too, just in case. And wash my slippers, yes.

I get tangled up in the order of my instructions, do them all wrong — but no matter how hard I try or what I do, it will never feel right.

My head is spinning.

My mother makes dinner. I feel okay eating it, because I haven’t prepared it and so I haven’t gotten it all wrong and bad, bad, bad.

It’s time to go out to the ponies again, so I get changed. I am tired, and my movements are more clumsy now.

I make mistakes when I’m tired and the voices screaming in my head get louder and louder.

They are drowning out my other thoughts — the real me. I am silenced.

I am trapped, and I remain trapped until I climb into bed — relief pouring through me that I’ve managed to stay safe for another day, trapped in such a dangerous world.

I am a prisoner.

Please help me.

Because tomorrow will be worse.

It’s only getting worse.

***

This was what my life was like four months ago when my OCD was nearly unbearable. Shortly after, I learned that I also had severe brain inflammation as a result of a neuropsychiatric disorder. Even though I was 24, I’d developed Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS). The basal ganglia — the part of my brain responsible for emotion and habit formation — was being attacked by antibodies and was greatly inflamed.

The scariest thing is to realise it took six months for doctors to identify that my OCD was the result of PANS. Without prompt antibiotic treatment, I wouldn’t have got better at all. I am now nearing the end of my first 40-day treatment and it’s with great relief that I can truly say I’m feeling so much better.

This post originally appeared on Human Parts on Medium on July 11 and has been republished with full permission. For more from Madeline Dyer, you can find her here or on her website.