Terrified, I took to Instagram. Then a stranger saved my life
Between the ages of 30 and 34 I had to be blue-lighted to hospital several times.
Sitting bolt upright in bed, gasping for air in the dark, I frantically searched for my inhaler on the cabinet beside me.
Within seconds I was inhaling the medication, and the breathlessness began to subside, enough at least for me to slip back into a half sleep again.
It had been like this for seven years, days and nights spent battling the asthma symptoms that were destroying my life. It felt like it was never going to end.
Throughout my early thirties I lived in fear, never knowing when a full-blown asthma attack would strike, or whether I would survive it. And if it hadn’t been for a stranger who came to my rescue online, my situation might never have changed.
I was 29 and otherwise fit and healthy when I first developed signs of asthma. I’d always loved going for long walks outdoors but suddenly, I’d become out of breath after just a few minutes.
One afternoon, I was out walking in Cumbria where I lived with my then-boyfriend when I couldn’t catch my breath at all. I felt like I was suffocating and it was really frightening.
Luckily, we were passing a café so my boyfriend helped get me inside where someone called an ambulance.
When we arrived at A&E, I was still struggling to breathe. Thankfully though, there was a respiratory specialist there who immediately put me on a nebuliser – an electric machine that sprays a fine, liquid mist of medicine through a mouthpiece or mask – to help me breathe and steroid medication to relax my airways.
It was very worrying as I’d never had any health issues before and had no idea what was going on.
After a few hours, once I was well enough, I was sent home with a rescue pack of medication, told it was probably asthma, and advised to see my GP. I was stunned.
I’d assumed I’d had an allergy to something. Asthma hadn’t even crossed my mind.
But when I did see my GP, he just looked at me, said, ‘Yes you have asthma,’ then passed me a reliever inhaler, adding: ‘You know how to use that, don’t you?’
All I remember thinking was, ‘Wow, this is a life-changing diagnosis.’
That first year was awful. I was constantly breathless and had to take lots of time off work sick. Any time I tried to exert myself in any way, like doing chores, trying to go for a walk, even just answering the front door, I’d get breathless.
Sometimes it just happened for no reason, even when I was in bed asleep.
I’d use my reliever inhaler as instructed and the symptoms would subside a little but after a few minutes they’d just start up again.
Eventually, I was using my inhaler several times a day, which was way too much.
If you’re using your reliever three or more times a week, that is a sign your asthma isn’t well controlled and you need an urgent review of your treatment, but I didn’t know that then.
Twelve months passed and I was finally assigned an asthma nurse through my GP practice, but I have no idea why I wasn’t given any advice until then.
She prescribed a brown preventer inhaler, which should have stopped swelling and inflammation building up in my airways and was to be used twice a day. And thankfully I found this did help to manage my underlying asthma symptoms like breathlessness and wheezing.
But I was still having an asthma attack once every four months.
These types of attacks were different. My chest would start to feel tight, and I would struggle to breathe in at all. It felt like something was sucking the air out of me, or there was an elephant sitting on my chest so I couldn’t inhale. It was terrifying.
My reliever inhaler was meant to help prevent a full-blown attack if I felt one coming on, but it didn’t always.
So more often than not I would need to go to hospital to be given oxygen and put on a nebuliser again in order to recover.
The worst attack I remember having happened after a work Christmas party.
The combination of the walking between venues plus smokers outside made my chest get tighter and tighter. I excused myself and made my way home but once I got there, I collapsed outside my front door.
Luckily my neighbour spotted me and called 999. I was admitted and taken to a ward where I stayed under observation for three days.
Leaving the hospital, I felt exasperated that my life was being limited to a point where I couldn’t even enjoy a night out with my workmates.
I’d already limited my social life because talking over the noise in a bar was impossible when I felt wheezy and dancing in a nightclub was out of the question – I’d get out of breath just going up the road.
But it was other things too. Like not being able to work properly without needing regular breaks. And the one thing I’d always loved doing – walking and taking in the stunning landscape of the Lake District – had to stop too.
I felt like life was passing me by.
By the time I turned 31 – an age I seriously questioned that I would reach after having so many terrible attacks – I was exhausted. At 33, I was having monthly visits with my asthma nurse and my condition was becoming more and more severe.
I was having more frequent episodes of breathlessness, had constant chest tightness and an audible wheeze, and was taking a maintenance dose of steroids every day, including using my blue inhaler up to 15 times a day.
Desperate for answers, I would ask my asthma nurse and GP why my asthma was so bad but neither could ever give me an answer. They’d just tell me everyone’s asthma was different and I felt very dismissed.
According to a new report by national charity Asthma + Lung UK, I am not alone in my experiences.
People with lung conditions are being diagnosed too late, or not getting the right treatment – leading them to become seriously ill and needing hospital care.
I was at the end of my tether and put a post up on my Instagram page saying, ‘There has to be more to life than this’ and tagged the word ‘asthma’ at the end. It was kind of a cry for help – I was at the point where I didn’t know what else to do.
That Instagram post was the best thing I could have ever done as a local girl, called Claire, responded to my message. She reached out asking if she could help and passed on her contact details.
As I poured my heart out to this kind stranger on email, telling her about my years of struggling with my asthma symptoms and the fear I had of the future, she consoled me.
She told me that she understood, that she had gone through the same kind of ordeal and that it sounded like I had severe asthma, as she had, and that I needed to fight to get the right treatment.
‘You need to ask for a proper diagnosis from a specialist asthma centre and research the treatments you think might help you,’ she explained.
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Suddenly it all made sense. No wonder the usual asthma medication wasn’t working for me.
Claire had already told me about a few other treatments and therapies that were available and suggested a specialist asthma clinic my GP could refer me to, the same one she attended, where they could help.
There, the doctors carried out tests, which included ruling out any allergies, lung function tests, and an electrocardiogram to check my heart function. These all confirmed that I had severe asthma.
It meant I was eligible for specialist biologic treatments, and I was prescribed an injectable drug – which targets and removes cells that play a key role in severe asthma – to self-inject once every eight weeks.
I started on the drug in November 2022, and now, aged 36, it has completely changed my life.
I can talk on the phone without having to use my reliever inhaler, go dancing with friends or for walks and days out without worrying that I might end up in hospital.
Between the ages of 30 and 34 I had to be blue-lighted to hospital several times with an asthma attack but haven’t had to at all since I started on the new drug.
For seven years I felt that nobody was taking my condition seriously. If it hadn’t been for Claire, I might still have been in the same boat, or even worse, not be here at all.
A stranger on Instagram literally gave me my life back, and I couldn’t be more grateful.
Lucie is supporting Asthma + Lung UK’s Saving Your Breath campaign which is calling on the government to improve diagnosis and treatment for the millions of people living with a lung condition. To sign their petition, click here.
For more information or advice, go to the Asthma + Lung UK website at www.asthmaandlung.org.uk or call the helpline on 0300 222 5800
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