When you’re on a night out with friends and you go into anaphylactic shock just from laughing too much, it puts a downer on the evening. But that’s what happened to me a couple of years ago.
We were having a good laugh when my tongue and throat swelled up. One friend called an ambulance, while another helped me use my EpiPen to stop me choking and suffocating to death. They stroked my hair, telling me I’d be OK as I lost consciousness before being whisked into intensive care. Quite the end to a night out.
I’m allergic to strong emotions. Any changes to my body’s status quo – whether I’m laughing, crying, sad or stressed – can cause a chemical reaction. It happens almost every day and I’ve been hospitalised more than 500 times. When I feel it starting, I get upset and try to suppress it, otherwise I’ll have a worse reaction – it’s a vicious circle.
I have a rare condition called mast cell activation syndrome. When a nettle sting gives you a raised, itchy bump, that’s caused by histamine, a chemical that comes from your mast cells. In my body, those mast cells are hypersensitive.
They release too many chemicals in response to a minor attack – like a nettle sting or a food intolerance. My body even does it spontaneously – releasing the chemicals for no reason. So I’m allergic to nothing and everything, all at the same time.
Russian roulette meals
When I was younger, I’d frequently get ill and have strange reactions to different foods but we assumed I was just sensitive.
Then one day, at 18, I had my first experience of anaphylactic shock. I was at a big public event when I suddenly felt shaky, dizzy and found it hard to breathe. I was taken to hospital with a police escort.
I was unconscious, so I missed all the excitement, but when I came round in hospital I was frightened. Doctors reassured me this can happen with our bodies, once in a blue moon, so I went home thinking, “I’ve had my once-in-a-lifetime reaction.”
If only I’d known.
After that, I had eight reactions in two weeks that landed me back in A&E. I now deal with this severity of reaction at home on a regular basis. But back then, if my tongue was swelling, I’d immediately get medical help.
My most recent reaction was at 1am when I woke up in anaphylaxis. It happens so often in the middle of the night, I keep my EpiPens by my bedside. Obviously, in the beginning, I was terrified, but I’m used to it now.
We searched for a specific trigger for a long time – if I had a reaction after eating tuna, I’d assume it was fish. I was down to eating only chicken, potato and broccoli for months and became malnourished.
I was also struggling to keep up with my studies and gymnastics training. It was modern-day torture and beyond frightening, as I never knew what would cause a reaction next. The medics were just as baffled as me.
It took two years to be diagnosed. I’m now on medication and there’s a protocol in place to keep me safe. I’ve recently moved out of my parents’ home and live on my own but have a personal assistant here five days a week.
I’ve got assistive technology, too. If I press a button on my watch, the lights on the front of my house change to red and an ambulance is called.
All my friends and family are EpiPen-trained. It’s frightening for my family, wondering which reaction is going to be my last. I feel like a ticking time bomb.
I’m allergic to body sprays, cleaning products and scented candles. Eating is still a bit like Russian roulette. A food that’s fine today could give me an allergic reaction tomorrow.
There are lots of foods that will land me in hospital and some that hopefully won’t. Because of the chemicals released when I’m digesting food, sometimes it’s not what I’m eating but the digestion process that triggers anaphylaxis.
I’ve had to accept that this condition could kill me, but I took some control back when I planned my funeral aged 20. I know that’s not normal but by being organised, I know I’m having a Beyoncé song!
I also have directives at the hospital about situations where I do or don’t want treatment, so my family won’t have to make those awful decisions. Being an athlete, I’m a perfectionist – even when I’m dead, I want everything to go right.
Strength to carry on
Gymnastics has saved my life – not just the physical fitness, but mentally. I can go to the gym and focus on that.
If you’re doing backflips and you’re not focused, you’ll land on your head. Sometimes, my condition means I can’t feel my arms and legs, like when you get a dead arm.
So when I whack my shin on the beam, there’s a big bump – and any injury can cause a reaction. I badly damaged my knee in 2019 and went into anaphylaxis.
Sweating can make me react too, but I’ve lived with this for so long I know how far I can push myself. It’s the same with laughing – it doesn’t happen as much now that I’m better medicated and can feel when I need to calm down.
The only people who tell me I should stop gymnastics are those who don’t understand me. It gives me so much more than it takes away. The allergic reactions will happen anyway, even if I’m sitting at home doing nothing, so I may as well be out living my life.
I do have to avoid social situations sometimes. I go on a risk versus reward basis. I study menus beforehand, take extra medication and hope for the best. I need to know where the nearest hospital is, that I’ve got my care plan and enough medication.
But I only go on holiday in the UK because getting me on a plane won’t go too well.
I can cope with anything but I’m allowed to have bad days. There’s no point pretending it’s OK – because I’m not OK with it.
If I could click my fingers and be cured, I’d do it instantly. Keeping myself alive is a full-time job.