an insight into my life with severe asthma, advocacy, awareness & research
Chronic illness takes so much away from you. It can leave you unable to hold down a job and therefore no monthly income reliant on benefits but more than that it robs you of your ability to socialise. The catalyst for the post was a photo that came up on my TimeHop memories when I… Continue reading The value of volunteering when chronically ill.
The short answer is NO and there needs to be a big changes for that to happen. I have actually written this blog post twice. The first incarnation was me getting my feelings off my chest but I decided not to post it as it would not be helpful to anyone. Instead I have decided… Continue reading Are patient co-authors an equal part in the research team?
7 years ago I had the privilege of being invited to join the Asthma UK Centre for Applied Research (AUKCAR). At the time I had no idea what I was getting in to. I had no idea what patient and public involvement (PPI) in research was and to be honest was a little daunted at… Continue reading Leaving the Asthma UK Centre for Applied Research
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
With the new year fast approaching I like to reflect back on how the year has been and what I have achieved. Last years post can be found here . My thought for 2019 was: 2019 is going to be a great year, a year to focus on achieving the best health I can and enjoy… Continue reading 2019 the good, the bad & the ugly
How often do we read or hear that asthma is "just asthma" and an inhaler will fix it all. Everyone knows someone who has asthma but not everyone knows how bad asthma can be and that it kills people. 3 people die each day in the UK compared to the 10 across the United States.… Continue reading Are asthmatics who post on social media one reason why asthma is considered as “just asthma”?
Being on sick leave seems to be an all too common occurrence for me. It is never just a day either its weeks and weeks which feels like months and months (well sometimes it is months). Often people say to me they would love to be off for as long as I have been off… Continue reading Sick leave- what do you do??
On Tuesday 1st May is was World Asthma Day. I normally do something during the day, or post a video etc raising awareness about asthma, how serious it is, how critically under funded research into asthma is. This year however I didnt do anything I just wasn't well enough, my chest was far from good… Continue reading World Asthma Day
The first week of annual leave I really felt a little bit of a mess and just didnt know what to do with myself and everything seemed really negative and falling apart around me, but a week in and half way through my annual leave I feel things are starting to get back together and… Continue reading Taking time helps to heal
The last few days I have been down in Manchester at the Annual Scientific Meeting for the Asthma UK Centre for Applied Research. It was a great few days. all kicked off by an entertaining dinner with the centre director and post grad and network co-ordinator who learnt the value of Twitter and what you… Continue reading #aukcarASM15
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