Tomorrow is World Asthma Day aka WAD!
This time last year I didnt think too much about it and never even thought I would be where I am today. I was focused on my Step Dad’s 60th birthday which happened to fall on WAD. I have never really done much for WAD. However last year for some reason I was compelled to put together a photo montage of how asthma effects me and what I can still do despite having asthma.
So much has changed both good and bad. It has been a huge rollercoaster. Sometimes I just want to jump off and other times I want to stay on it and never get off. Starting with the bad. My asthma has been really bad. My lung function is at an all time low, I find I am symptomatic a lot of the time, I am taking more medication than my 88 year old Granny and the rest of my family put together and this still doesn’t give me the quality of life I once had. I will however still fight for the life I want. I will not give up- mainly because I am too stubborn and won’t let my asthma win no matter how hard it tries!! (this is one of my downfalls as I fight it too hard and often don’t get help early enough- I am working on that though!!)
So for WAD 2015 I have put together another photo montage called “My Asthma Year”
So onto the GOOD!!
This year from WAD 2014 to WAD 2015 has also been awesome. What started as a bit of awareness making the video snowballed into something I would never have even considered possible. I am now part of the Centre Management Committee for the Asthma UK Centre for Applied Research (www.aukcar.ac.uk ). I am also a Patient and Public Involvement Lead (PPI) for Children and Young People within AUKCAR. It has still not quite sunk in the role I have been given and how much my work is appreciated by those in the centre.
I started off by being invited for coffee with the PPI Leader from the centre to discuss ways I could become involved and help. My particular interest is children and young people as my life as a young adult has been so effected by asthma, it would be great to use my experiences to help researchers help other asthmatics.
So from a chat in May 2014 to May 2015 and I am in the position I am in is totally brilliant and one I would never have expected. I remember at the start not really knowing exactly what I was doing back in May last year. The thought of reviewing a lay summary terrified me a bit but after the first few I found it fascinating and really enjoyed doing it. I was not sure how many I should be doing etc but as and when the requests came through if I had time I would sit and read the summaries and comment. Because I found I really enjoyed it the time aspect never bothered me. Many who I would meet with from the centre commented on how much I was starting to do. I was not aware of this and didnt see it as a lot. From a personal point of view the Centre came to me at the perfect time as I was reducing my hours at work so reviewing summaries and patient information sheets filled in the time nicely. It also gave me something productive to do when waiting for my nebulisers to finish.
Later that year I was invited to the 1st Annual Scientific Meeting in Oxford with the AUKCAR and found myself speaking infront of all who attended. My public speaking was not the best and I was very nervous. Breaking down in tears was not my best moment but ironically it got the point across to many just how serious asthma can be and how much it can effect peoples lives.
Since joining AUKCAR I am so proud of what I have been able to contribute and in so many different ways from speaking at the meeting, taking part in teleconference calls, reviewing lay summaries, reviewing participant information sheets and ethics sheets, being part of 2 patient advisory groups, reviewing PhD proposals, helping students who are under taking PhD’s in the asthma field, helping to start our Children and Young Peoples PPI focus group, being part of a focus group surrounding the volunteer database which is one of the aims of AUKCAR to set up. The list is never ending on all the different opportunities I have been given as a result of joining AUKCAR. I am so grateful for it and those who are involved. I will never be able to express in words how much of a positive impact AUKCAR has had on me.
I am not doing anything particular for WAD. I will be thinking of all those who have died from asthma. Particularly the 7 friends I had to have all died as a result of asthma or complications such as cardiac arrest due to an asthma attack.
I will leave you with the post I made a year ago about WAD 2014