Help! My body is trying to kill me

When I say rare I don’t mean ‘rare’ like Debop Y2K merch I mean there was a 1 in 400,000 chance that I would get this and I got the golden ticket in the health tombola.

I’ve been diagnosed for just over a year now. Indeed, I intended to write about it last week to mark World Rare Disease Day on February 28 only to find, perhaps fittingly, that I was too sick to write at all.

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Still, I'm very lucky, there is an effective treatment for this incurable condition. Twice last year, I lay in operating rooms, once in Prague, once in Glasgow, was put to sleep and had my jaw winched open and a surgical balloon inflated in my windpipe like a cartoon snake eating a hippo. The first was not so successful but after my second, I was told, a camera threaded up my nose and down my throat, that I, ‘Have a lovely hole’. It’s true, I breathe beautifully.

You would think 12 months is long enough to understand a condition like this. But it is mercurial, like fighting with your own shadow and I have been very much in denial, treating it like a prolonged cold I couldn’t quite shake to be remedied with Berocca and positive thinking.

When people asked me how I was, I replied, ‘Oh fine, you know, being held together with lipgloss and hairspray’.

Sometimes, if I was feeling candid, I’d admit I was, ‘up and down’ but I never explained that up meant I could manage a few hours a day out of the house and down meant I was sleeping 80% of my life away. I’ve been grateful too for my illnesses' invisibility that allowed me to keep up the pretence of the cheerful, happy woman I am when healthy even if it came at a cost.

This is not all due to Subglottic Stenosis. Like many of the estimated 4 million people in the UK who have an autoimmune illness I also have a secondary autoimmune illness, Erythema Nodosum, potentially triggered by the first condition. This means if I go below a certain dose of steroids, angry, red lumps emerge on my legs and I become so fatigued I cannot move. My mind still rattles away just as it always did but my body is cement, a too-strong gravity.

I used to be known for my energy, a whirlwind, running around cities with a huge coffee in my hand, chatting six to a dozen, making one million plans.

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Always impulsive, spending what little money I had on a plane ticket to take me somewhere else. I crossed the border from Vietnam to China by foot over the Friendship Bridge. I took night buses across Paraguay and started weight training in muscle gyms in Asuncion. I travelled solo across Siberia, catching my trains at 2am from Russia’s bleakest stations that smelled dry fish, lard and spilled beer.

In the last year my world's become somewhat diminished. It happens in increments, like a map being folded smaller and smaller. First you restrict yourself to the city, then to your neighbourhood. Soon going to your local cafe is an excursion.

Finally, you stay home where you walk around in your extensive range of pyjamas, huddling in thick knitwear until you need to spend weeks in bed. Your own private island that your family visits. Your toddler cuddles up with you to read, your dog and your cat roam across it searching for toast crumb treasure, your husband lies on the pillow next to you and tells you that this will pass, that he loves you.

'You stay home where you walk around in your extensive range of pyjamas, huddling in thick knitwear until you need to spend weeks in bed – your own private island that your family visits' (Image: Newsquest)

Good things have come of this too. I appreciate every sweet moment with my son. On good days, a trip to Queen’s Park and an ice-cream afterwards is as good as a week at Disneyland. I didn’t die, I’m not dying, at least no more than everyone is and every day I get to watch him grow, learn and just be around him is magical.

Similarly, if you want to test your marriage, go through a period of illness and see how your partner shows up. My love for my husband is stronger than it's ever been and he feels the same. He loves me as much as ever even when I am able to give almost nothing, medicated, swollen up and shiny like a helium balloon version of myself. I’ll never fear getting older with him.

I’ve also mostly stopped being so afraid of people's perceptions of me. Instead, I started using my energetic inner-self that doesn't get to show off enough as a sort of camouflage for this illness. On better days, I dress up, wear my nicest or most outlandish clothes, I’ve dyed my hair scarlet red and fuchsia pink. I laugh and joke with anyone when I am out in the world because it’s such a joyful novelty.

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I am lucky. Beyond the island of my bed and this sickness I have a truly happy life waiting for me. I am lucky that I have access to the NHS and excellent consultants and that there are treatments that can help. While there might be some downs, I can believe there might be some ups to come as well.

I'm lucky that when I'm well again I will know to be grateful for every single day. I am also lucky I now understand that I need to admit and accept that my body is trying to kill me, and that people around me have embraced my vulnerability and limitations with kindness and patience.

In spite of it all I feel very lucky, often truly happy, and that, healthy or not, is even rarer than a 1 in 400000 golden ticket.