It is hard to believe that I have been involved in the Asthma UK Centre for Applied Research for 5 years now. Time has gone so quickly. I have had some amazing experiences as a result fo being involved, met some wonderful people and made friendships that I hope will last for a long time yet. I say this often but AUKCAR has been life saving and life changing. I have no clue what I would be doing if I had not had that chance meeting that set about a series of events which has put me where I am now.
The annual scientific meeting held in London this year was a celebration of all the hard work and research that has been done to help benefit those living with asthma or affected by asthma. Asthma UK originally funded the centre for 5 years so we had to reapply for further funding for another 5 year period. It was announced during the meeting that we have been awarded funding for the next 5 years which is incredible.
I love the ASM’s because it is a chance to meet people face to face. The centre is virtual so a lot of the work is done via email or teleconference so seeing the people you work alongside is not a common occurrence. It also gives us the chance to meet other members of the patient and public involvement (PPI) group.
This years meeting I was speaking twice and presented a poster too. For the first time I was presenting about an academic bit of work on my own which I was a little nervous about but once I got up there it was not too bad (also the team who were part of the work were in the audience so had to get it right). The poster was also related to the piece of work too- evaluating the impact of PPI!!!
The final talk I was giving was when I fell to pieces a little. Not quite as bad as 5 years ago when i was in tears and the audience were in tears, it was only me this time. It was the talk I gave along with 2 friends and PPI colleagues at the NHS Research Scotland Annual Conference. To summarise the talk was originally celebrating the NHS at 70 and we gave our accounts of how medicine has changed with the NHS. Allison started speaking about her experience fo asthma with her mother, then Elisabeth spoke about growing up with the NHS and then I spoke about the NHS today and changes in medications. (I am going to write a full blog post dedicated to our talk in the next week or so).
When I originally gave the talk in October I had not long changed consultant, had started new medication for my asthma and things were looking up. This is part of my original talk:
“I have been in and out of ICU and HDU more times than I can count, it has almost become routine when admitted to hospital now. Once stable I would then be moved to the ward to further stabilise before being ready to go home, once I home I would then begin the arduous task of weaning down my oral prednisolone dose to my maintenance. This I now hope is a thing of the past. I am 4 months into a trial of mepolizumab and it has had so many positive effects. I have not been admitted to hospital since April and am on the lowest dose of oral prednisolone I have been on for as long as I can remember. It has been truly life changing. Advances like this have given not just me but given others their life back. If it was not for research, mepolizumab would not be an option and I would still be on the rollercoaster I was on before”.
It was only just before I was going to give the talk at the ASM when I realised how much has changed in such a short space of time. Never would I have thought when I first wrote that talk that life would have changed so much.
I have been back in hospital and intensive care, I have not got back down to a lower dose of prednisolone and I am no longer working. I am still on the mepolizumab injections as it has reduced my eosinophil count. It highlights just how fickle asthma can be and how you can never predict what the future will hold.
In a way I think maybe it is a good thing that when giving the talk at the ASM I was able to tell the audience what I had said back in October and then tell them how life has changed in a matter of months. No one unless you’re living with it can really see the unpredictable nature of asthma and how debilitating it can be. Even with the best plans and management it can still rip the carpet out from under your feet. The emotion I showed on stage is the emotion I try and keep buried down because as it does is remind me of what I am not able to do. PPI has given me so many positives but there is still the longing for the life you want or the life you once had.
Having a platform such as the AUKCAR ASM or the NRS gives the opportunity to show everyone what is often hidden behind closed doors when it comes to asthma. It is so misunderstood and if people who struggle to deal with controlling it don’t speak up then the perceptions of asthma will never change. I hope that some of what I do will help make a change and help researchers, Dr’s, nurses, other health care providers and the general public about asthma and what it is really like.