Meet Olivia

Making a positive out of what could be really negative

I have brittle asthma, also called difficult to control asthma, unstable asthma, uncontrolled asthma, severe asthma, therapy resistant asthma but all these things mean the same, my airways are twitchy and constrict when something hits them they don’t like. I like to think it’s a bit like having a stroppy teenager only I cant tell them to stop unless I medicate my lungs and even then they don’t always stop and start working how they are meant to!

My lungs impact almost all parts of my life. I try to live my life but I always need to take into consideration how my lungs and breathing will respond to what I am doing. I am a qualified nurse but my health has stopped me working on the wards, working out in the community so I now work part time based in the hospital looking after home peritoneal dialysis patients. They have to come to me rather than me going to them. I have also had to give up playing sport- something, which I love and wanted to make a career out of but thankfully I am still involved in lacrosse and am assistant manager for the Scotland Women’s Senior Lacrosse Team. Obviously all this is dependent on my lungs and that I am well enough. Much of my time is also spent in hospital due to the severity of my attacks I find myself visiting the intensive care unit and high dependency unit far to often for my liking!

One such opportunity is that I got involved in Patient and Public Involvement (PPI) with the Asthma UK Centre for Applied Research. It has really changed my life around. I know that sounds silly that something can make such a difference but it has. PPI is about getting patients involved in research. Its not about being a participant but working along side researchers to ensure their research is actually going to benefit the people with the condition they are researching. Being part of the PPI group I get to do a range of activities such as being a co-applicant on research grants, reviewing lay summaries about research projects, review patient information leaflets to make them understandable for those who do not know all the research or medical speak. It is something I can do no matter how I am feeling and can do it anytime I like as much of it is online via email although there is some face to face meetings. You can do as much or as little as you want, I tend to do a lot as it fills in my time when I am not working but if it had not been for my asthma and health I would otherwise have been in employment.

My proudest achievements

From being involved in PPI this has lead to other events such as speaking at the NHS Research Conference in Scotland the other day where I was the only patient there but was talking about how important it is to have patients involved in research and not just as participants. I also published and article for the British Medical Journal writing about how to best deal with an acute exacerbation of asthma. Through the AUKCAR I have also been able to help set up a children and young peoples group called SPEAK Asthma to help with PPI too. My proudest achievement so far that has come from being involved in PPI at AUKCAR is being featured in a book called ‘Healthcare Heroes’ which is a collection of stories about people who have made an impact within their area of interest whether it be because they are a patient or engineer or artist.

The point of me telling you all this is to show that despite all the things that a condition can take away and stop you doing there is something out there that can keep you occupied and take your mind off thinking about what you should be doing but cant do it because your breathing isn’t great. This is applicable to any long term condition, all conditions are different but all conditions can take away your independence and ability to do some much loved hobbies doing PPI has changed that. From having asthma that stopped me doing so much for so long I can now use all that time and experience of living with it to the good now and help with research to possibly help make a change for the future.

If you want to find out more please visit my blog: www.anonymousasthma.me