"I’ve never had to go to hospital with my asthma, and have always managed it pretty well. It wasn’t really playing up until I started training for the London Marathon in 2009 – I went to my regular check-up and told the nurse that my usual medicines weren’t keeping control of my asthma, and that I was feeling breathless."
A long journey
"When I was diagnosed with severe asthma around nine years ago, I felt justified, and that someone was finally listening to me. I’m not as badly off as some people who can’t climb the stairs without their inhaler."
Finding the right combination of medicines takes time
"When I was first diagnosed, I wish I’d known that the combination of medicines that works for a while won’t necessarily work forever. I used to give myself a hard time when I started getting symptoms because I’d think, ‘Why haven’t you sorted this out yet? It clearly isn’t working.’ But the reality is that it probably was working to begin with, but your body becomes resistant, and you just have to keep trying.
"My asthma nurse worked with me to help me find the right balance of medicines. It took around five years to find the best combination for me – I spent six or seven months on each one, so I felt I’d given it a fair go."
Monitoring my symptoms helps me work with my asthma nurse
"I see my asthma nurse every 8-12 weeks, whether or not there’s a problem, and she renews my repeat prescriptions each time so I’m not in danger of running out. She also checks that I’m using my inhalers correctly and getting the benefit of my medicines each time.
"I keep a record of my symptoms online – I didn’t like any of the existing asthma tracking apps, so I made a spreadsheet in Google docs. That means I can share the link with my nurse online without having to be seen in person, and she can keep hecking up on how my stats are changing over time.
"To anyone who’s just been diagnosed with severe asthma, I’d say: As long as you manage it well, you can do everything you want – just work with your asthma nurse to find the combination of medicines, and take them in the right way."
Knowing your triggers and capabilities makes life easier
"I don’t get breathless day to day or around the house, but if I do anything which starts to raise my heart rate, I’m looking out for that heavy breathing, tight chest and cough. Cold air is a trigger for me, and also hot air and humidity. I’ve also found ibuprofen can trigger symptoms. I recently slipped a disc in my back, and the first pain medication I was given was ibuprofen-based. I had to use my inhaler four times a day until my medication was changed.
"Having severe asthma doesn’t stop me being active. I do a lot of aerial gymnastics so sometimes I’ll be hanging upside down in mid-air from a silk and realise I need my inhaler. I make sure it’s always on the side of the crash mat, and we have a buddy system (two people to each silk) so there’s always someone who can help me out."
Prepared for anything
"I have a couple of copies of my asthma action plan around the house and have given one to my silks teacher, and if I go on an activity trip I make sure there’s a copy for the leader too. My fiancé feels much more prepared now he has a copy. I work in the same campus as him, so he is my asthma buddy - I also pair up with a colleague who also has asthma and we buddy each other.
"I wear a Medicalert bracelet so that even if I’m unconscious people will know how to treat me. If I was in a car accident, the fire fighters would know that in a smoky environment I needed oxygen more than most people. I do lots of international running events and it’s reassuring to know that someone could call Medicalert and get all the information from my asthma action plan in their own language. If I have a bad reaction to a run, I'll analyse it to find the cause and change my training accordingly. For example, if it was running up a hill that brought on an episode, I'll factor in more hill training to my plan, and take it slow and steady to build myself up."
Saving money on your medicines
"One practical thing I’d say is: get a prescription pre-payment certificate. I have an annual one and pay by direct debit, so I pay around £10 a month for £60+ of medication. If you have severe asthma, the cost can really add up, so don’t wait until you’ve been paying out £8.40 per prescription for six months and then think ‘I have to pay for more?!’"
More people need to understand severe asthma
"There are lots of people who think of asthma as ‘just a breathing thing’. When I first met my fiancé, he said, ‘People can die from asthma? But how? Don’t they just take their inhaler?’ He didn't really understand it until he saw me have an attack in front of him. I think that scared him, and he was much more aware of things that might give me an attack after that!
"People have even said to me: ‘You’ve had asthma for a while now – it must be about time you grew out of it!’ I explain that every case of asthma is different, and that not everyone grows out of it."
- At Asthma + Lung UK we're campaigning for fairer prescription charges. Find out how you can get involved.
- Help other people to understand your severe asthma better with our top tips
Last updated September 2016
Next review due September 2019