With each hospital admission and each trip to critical care it is taking more mental strength than ever to get back to base line. I think with this past december and a few traumatic things happening including the death of my granny and also the death of a friend who suffered from brittle asthma too died in her sleep very suddenly and unexpectedly. Having brittle asthma does put you at a higher risk of having a fatal asthma attack. The attack I had just recently which put me in the high dependancy unit was described as being not quite as life threatening as my previous attack was. The consultant who said this does know me and was trying to make me feel better as I was feeling pretty down about being not just in hospital but in the high dependancy unit for new year. As the nurse said it could have been like 2 years ago when I was in ICU and didnt realise it was New Year until the 3rd of January so I guess this one wasn’t quite as bad.
The comments of the Dr have really stuck with me more so than normal and I think it is because with each attack I get over it is taking longer to recover, and I do feel that with each time there is that little bit more freedom taken away wether it be through medications, ability, work, travel. It may have been meant as a positive but with knowing so many people now who have died of asthma and not just any asthma but the same type of asthma I have is really scary. What scares me more is the relationship I now have with my consultant who despite me writing, emailing, calling has not addressed any of my concerns. Even on previous discharge letters there was requests for a plan to be put in place, follow up with immunology because of the allergic reactions I have been having and various other things. For me it is embarrassing when I am asked by other consultants who see me acutely and ask why nothin has changed and I have to say because my consultant doesn’t think anything needs changed. I am so fortunate that I have fantastic friends who have helped me a lot with my asthma, but also my own knowledge of asthma (but dealing with your own condition is a bit different from text books) and the support of my GP surgery and asthma nurse there who are happy to support me until the time comes and I find a team who can manage my asthma and allergies well. Part of me wants to move back to Southampton and see my old consultant who would drive up from the Southampton hospital and see me in Winchester hospital and thats not something that happens often and at the time I didnt realise the significance of it but now I do and am eternally grateful for his support. I am hoping that perhaps they may agree to see me but will just need to wait and see. Sometimes as a patient we are the best judge of how we feel and what our bodies need to function so for now I am going to need to listen to my body drop my steroids or up them as I need and get myself through until I can get a better idea of what is going on. The only benefit just now of being on high dose steroids is that I am not having nearly as many allergic reactions as I was having!!!
I am really looking forward to getting back to work. Getting back to normality and back to doing what I enjoy. Its odd I am looking forward to the feeling of being tired because I have been busy at work rather than exhausted because all I did was breathe and not do much with my day.
There are good things happening though there is the AUKCAR Annual Scientific Meeting in Bristol, SPEAK Asthma things, then a Research Nurse open day which I am attending, along with various other things with Astra Zeneca. So there are lots of positive things to look forward to.