Doctors could only help me so far... So I set out to find my own ‘remedy’
Getting changed after my dance class, I spotted blood oozing from my hips.
‘What’s that?’ I muttered, confused.
My skin was paper thin across my hip bones and I reckoned I must have cut myself doing floor exercises.
It was September 2015, and though I loved my food, my appetite had recently gone through the floor. My weight, too, apparently. Later, my mum Sylvia, 49, quizzed me over dinner. ‘Why aren’t you eating?’ Staring at the plate of food in front of me, I suddenly felt exhausted. ‘I just can’t,’ I shrugged. Dinner didn’t interest me... but there was something I craved. Constantly.
Crisps or anything salty. Even odd snacks like powdered stock cubes!
For the past month, I’d also been suffering constant nausea and frequent panic attacks.
It was draining, and starting to affect my school work – as well as my dancing and swimming.
Doctors had no answers, so for a year I struggled on.
Until April 2016, when I came down with a vicious stomach bug...
For days, I drifted in and out of consciousness, suffering dreadful diarrhoea, vomiting and hallucinations.
The hospital wouldn’t admit me in case I was infectious.
But when Mum and my dad Arthur, 55, found me passed out at the top of the stairs in the middle of the night, they drove me straight to A&E.
I was admitted, given a saline fluid drip.
Over the course of the day, my condition improved, confusion cleared.
Doctors were baffled, but I was well enough to go home.
Months passed and I still wasn’t myself. I was exhausted, and my weight was still dropping – reaching 6st 13lb.
I’d been accepted into university, but instead of looking forward to it, I worried how I’d cope. Then... In June 2016, my sister Ruth, 21, mentioned my symptoms to her friend, who’d just qualified as a junior doctor.
‘She said it sounded like Addison’s disease,’ Ruth said. ‘Oh really?’ I replied.
Straight away, I logged on to my laptop and began researching online.
I learnt Addison’s is a very rare disorder of the adrenal glands, the organs responsible for the production of stress hormones like cortisol.
‘The symptoms are the same as mine,’ I gasped.
I asked my GP about Addison’s disease. She didn’t know enough but said she’d look into it. She called later, reckoned it looked likely and insisted I go in for tests first thing. Only... I was due to be having minor surgery to clear a sinus infection the next day. ‘That’s not a good idea,’ she warned. On her advice, I called my surgeon, who confirmed that the op shouldn’t go ahead. He explained that if I was missing vital hormones because of Addison’s, the
Mum and Dad found me passed out in the night
anaesthetic might react badly with my body. It could have killed me! The next day, a blood test confirmed Addison’s. Finally, I had answers. The doctor explained that the illness had destroyed my adrenal glands.
It meant my body could no longer produce the steroid hormones cortisol and aldosterone it needed.
It even explained the panic attacks, which were a result of the missing hormones.
And what we’d thought was a nasty stomach bug earlier in the year was actually an adrenal crisis.
Terrifyingly, that had been a medical emergency, could have left me in a coma.
It was a good thing I got to the hospital when I did!
Despite knowing I’d live with the disorder for the rest of my life, I felt relieved.
‘At least I know what’s going on now,’ I told Mum. She shook her head. ‘You’ve had such a close call,’ she said, holding me tight.
I was given medication to counter the effect of the missing hormones.
Even with treatment, the condition still had an impact.
As Addison’s left my salt levels extremely low, I was vulnerable to fainting spells.
Low salt is common in Addison’s, and when I told my doctors that I found eating salty or sour food helped, they were happy for me to continue, as long as I wasn’t eating too much fast food.
I’d always liked very salty snacks, but I now knew it was a result of Addison’s.
But then I found a novel alternative. I began eating pickled onions!
They weren’t an obvious choice, as they have low sodium levels. Nor are they a treatment for the disease.
But eating something with such a strong taste satisfied my intense, uncomfortable cravings, which could often be as severe as my symptoms.
Pickled onions really scratch that itch!
‘Anyway, they taste really good!’ I laughed to my friends.
I’d buy the strongest ones I could find, putting away a whole jar each day. The smell wasn’t always pleasant for my family and uni housemates but thankfully no-one ever complained.
I’ve since switched to a more effective hormone replacement, so I’m eating fewer pickled onions. Much to the joy of those around me! Living with Addison’s means that there are still certain things I can’t do.
I’ll never be allowed to drive and I can’t drink very much alcohol. And I can’t really be left alone, as I’m at high risk of fainting.
But I don’t let it hold me back. I go rock climbing with my boyfriend Erik, 24, and now compete in open-water swimming competitions.
And in August this year, Dad and I took part in the Great Scottish Swim to raise awareness of Addison’s.
We raised £1,500 for the Addison’s Disease Self Help Group charity.
Helping others in this situation is important to me, so I’ll be shouting about it for years to come.
Buying the strongest I could find, I put away a jar a day
Me and Dad after our big swim Looking good on my new diet!