The patient voice is becoming such a valuable asset to medicine, medical research, pharma development and medical conferences. After all you can learn all the technical stuff about the anatomy and physiology in text books but you can never learn just what it is like to live with a certain condition unless you go through… Continue reading Attending (online) conferences as a patient.
Patient advocates seem to give off this impression of being fearless, great speakers and always knowing the right thing to say. I often looked patient advocates and admired their confidence and strength for the work they do. I still do. It has only been in the last few years that I have really identified as… Continue reading Worries of being a patient advocate
How can you feel like the odd one out at an ICU support group? I have written before many times that due to my asthma I end up in ICU a lot. I have written about my time in ICU and what happened but I don't think I have written much about the psychological impact… Continue reading Feeling like the odd one out at ICU support group
I was recently at the first event since the partnership of Asthma UK and the British Lung Foundation. It was fantastic to see BLF colleagues with the Asthma UK logo on their name badges alongside the BLF logo. Also being welcomed with open arms too was lovely. I was a bit daunted to attend this… Continue reading BLF-AUK Respiratory Action Plan Meeting
The past few weeks have been really tough, Im not going to lie but there have been some very dark times and hard times. Although my lungs and breathing have been manageable it has been bad enough to limit what I am doing and I have had to increase my steroids again to get me… Continue reading Looking back at #HealtheVoices19
You don't.... I like my life to be quite ordered. I like to know what I'm doing day to day, week to week. Many think I am stuck in my ways but I like routine. Routine gets me through, it means I know where I am. Recently I have found my asthma has been not… Continue reading How do you get used to to living in a state of instability?
The last week or so has been one which has been great meeting new people but also one of the toughest weeks of my rather short career. The blog post following this will be why I have had the chance to meet and make new friends, as well as have a great experience doing something… Continue reading long time no writing but now an explanation.
I spoke too soon. I wonder if I tempted fate by getting excited about the recent success of my oral steroid reduction. I felt not too bad after the first few days after I reduced but I then started to feel not great. I can't put my finger on what it was exactly but I… Continue reading Spoke too soon!
I hummed and hawed about this post and how to write it and what to write. I don't think I have ever started and restarted a blog post so many times trying to find the right was to express my thoughts. "Asthma charity may quit Scotland in London office switch". That was the heading of… Continue reading “Asthma charity may quit Scotland in London office switch”
Nights can become very long when you either can't sleep due to the high dose of prednisilone giving you insomnia or the nights when you reduce prednisilone and you hope desperately for a decent night sleep but instead you are up and down needing inhalers or nebulisers for relief and to try and combat the… Continue reading Up hill battles are they worth it?