“I was diagnosed with asthma when I was three but my severe asthma diagnosis didn’t happen until I was 22. My preventer inhaler wasn’t working as well as it had done, I was coughing a lot, and I couldn’t walk. I also had a nagging pain in my chest and had to really push my GP to get any action and get a chest x-ray which is when I found out I had a ‘pneumothorax’ – a collapsed lung.
“Then after more tests, I also received a diagnosis of severe asthma. I thought, ‘Trust me to have something different to most people!’ Fortunately, though, being diagnosed with severe asthma got me good support from a respiratory nurse – weekly home visits, someone at the end of the phone to ask questions, and access to a consultant’s appointment when I needed it.”
Having good support is important
“There’s only one GP where I live but I like this because it means you get one-to-one support; you get to know them and they get to know your health needs properly too.
“I also get great support from my husband and friends, and my parents, who are used to going to A&E at 2am – it’s become their normality! Fortunately, I haven’t been in A&E for two years now because I have an adult social service care package, which means I have a personal assistant to help me with daily activities such as making a meal. This helps me avoid overdoing things and ending up back in hospital.
“The nurses on the Asthma UK Helpline have also been very helpful. After talking to them, I felt empowered to go back to the GP and tell him what I’d learned from them!”
Managing my triggers and my medicines
“My asthma triggers are dust, mould, pollen, animals, bleach, wood smoke, and cigarettes. Unfortunately, these are everywhere! I’ve never worked out how to avoid them all, but I just limit my exposure to them. I’m also allergic to aerosol, which means I can’t use aerosol-based inhalers – I have to use a dry powder inhaler instead. I also have a nebuliser at home in case I need it, but I haven’t needed it for 18 months.
“I am allergic to loads of different preservatives including the preservatives used in inhalers. Symbicort is the only asthma inhaler that doesn’t give me bronchospasms (where my airways suddenly tighten), and that's thought to be due to the preservatives in the inhalers. My consultant was so relieved to find me a medication I could take without an adverse reaction. It does give me ‘the shakes’ though, but when compared to a bronchospasm these are nothing!
“I use a free app on my iPad to help make sure I’m taking all my medicines when I need to. You just type in all the meds you’re using, and the alarm goes off when it’s time to take them. It also knows when you need to put in an order for a repeat prescription.”
Keeping as active as possible
“On a good day I can play badminton from a wheelchair with a carer pushing me and I also like to swim. I’m trying to use a walking frame too, which makes me feel good. I use less of my reliever inhaler when I’ve done some exercise so I like to do as much as possible when I’m well.
“Respiratory physiotherapy is also fantastic! I have learned to breathe in a new way - through my nose. It helps me to relax and seems to help my breathing problems.
“But a bad day means not moving far at all, even the bathroom is a distance. Just breathing takes a lot of effort sometimes. And when I go down it’s a very gradual climb back up to feeling well again. I have to balance activities to make sure I don’t get over-tired. I’ve learned to pace myself, which means I can do a few simple tasks for myself, but make sure I rest afterwards.
“If I’m feeling tired, I try to keep going, but I don’t overdo it. If I feel I can’t do much, I don’t. I’m allowed to be tired.”
Volunteering is a great way to contribute
“For me volunteering takes the place of paid work, and is a way for me to contribute when I can’t work. I’m on Asthma UK’s Readers Panel, which means I am able to use the skills I do have to review their asthma information and advice and help a good cause.
“I’m also a media volunteer for the charity Leonard Cheshire disability, helping with campaigns by sharing my story. And I do one hour a week at the local library sorting books. Volunteering gives me a purpose and helps me feel like I’m positively helping others.”
Raising awareness of asthma
“The biggest issue for me is that my asthma’s often not taken seriously because I don’t wheeze. For example, I’ve been told by GPs, paramedics and A&E doctors: ‘Well, you’re not wheezing so it can’t be asthma.’ I dread seeing anyone who’s not a respiratory specialist basically in case they deny me treatment because I’m not wheezing.
"There are lots of people talking about this, on forums for example. I wish healthcare professionals and others would accept that we don’t all wheeze; asthma can be different for different people. It would be great if there was a label for people who don’t wheeze. It would help others understand.
“That’s why I watch what Asthma UK is funding. I think research into severe asthma needs to be prioritised so we can learn more about it, especially why some people with asthma don’t wheeze. I think the general public doesn’t understand severe asthma. People say you’re unfit when you can’t do something.”
- We involve people affected by asthma at all stages of our research programme. Find out how you can help support our research.
- Read our page on exercising when you have severe asthma for tips.
Last updated December 2016