Today I had the privilege of meeting some fantastic people at a meeting I was speaking at down in London. My trip is slightly tainted in sadness as I have had to curtail my trip by four days and miss most of the European Respiratory Society Annual Congress because I have not been able to fully recover since my stay in hospital the other week. It’s amazing how much longer this admission is taking me to get over. I just can’t seem to quite get the puff back. But I must not wallow in what I can’t do but be pleased that I managed to get myself to London to speak in a session led by Monica Fletcher who is amazing in the work she does to better educate healthcare professionals about asthma and how to look after someone with asthma. It was an amazing room and kind of like a chat show as we were in comfy chairs on a stage with everyone watching us. Myself and two other asthmatics were there in the session all sharing our story of living with severe asthma. The audience was a mix of scientists and industry professionals (I think!!!).
The two other patients I met were awesome and I am proud to call them my friends. Anthony who has had difficulty with his asthma meaning he wrote his dissertation while attached to 2 IV’s in hospital and still completed and got his degree, but is still hindered by his asthma. Not only did we have asthma in common but also a love of sport and dreams of playing sport for a lifestyle!! (Even if he is a die hard Liverpool fan). We often talk about how much of a impact asthma has had on our life and it is not always a positive but Anthony told me about a time when asthma actually saved his life. Asthma prevented him going to watch his beloved Liverpool on the day of the Hilsborough disaster, he would ordinarily have been in the away stand with the Liverpool supporters had his asthma not been bad. We try and look at the positives of asthma sometimes and I guess this is one of those times. If you believe in fate which I do then I guess….it was an absolute pleasure meeting Anthony. I have managed to get him to be involved in AUKCAR too!!!
The other asthmatic who was there gives me hope of a better future and faith in medication. Poppy who is younger than my who had such severe asthma, she spent so much time in hospital, so many sleepless nights awake with asthma, had her life totally controlled by asthma, was not able to do what she wanted because of it but now lives the life she would like to, has a job she loves, does loads of asthma public engagement stuff and it is all because of one of the new biologic medications Xolair. This drug has totally changed her life around. Going from incubated and in a coma to now working as a TV presenter and absolutely full of life is amazing to see. It gives me such hope that there will be a new medication out there soon that will be able to help me and give me some of the life back that I once had.
It was lovely meeting these two as it is not often that you get to meet people who really understand what your going through. They get it. We can each relate to each other. Even though our asthma stories are very different they are so similar at the same time. We have all felt that fear of an attack and what will the end result be.
I found the session quite emotional as well. I think because we were kind of laying ourselves out there and sharing our fears and whatlife is really like. I remember the look on one woman’s face in the audience when I spoke and said how I just wanted to be able to plan my life a bit and gave the example that I was in intensive care two weeks ago and had to are the decision to cancel some engagements I had when I was down in London. Iam not sure what shocked her more that we spoke of critical care admissions as if they were nothing or thatI had not long come out of hospital and was there? She sat open mouthed. I just remember than. I was glad I came down even though now my chest feels tight, I feel exhausted and ache, it was definitely worth it, not only for hopefully educating the audience about what it like to live with severe asthma but also to meet some amazing people.
One other thing that struck me was how other people pick up with your not well when they have experience of looking after someone who also has severe asthma. Anthony’s wife was down and she said she could tell straight away I was not great because of the way I was speaking. I hadn’t noticed but I guess when you are on alert to look out for signs of your loved one struggling you notice the little changes in the way we talk etc.
I am heading back home to have some sleep and get ready for lung function on Monday!! I get the joys of going to lung function every 2 weeks for the foreseeable future!!