Our patient experiences and opinions on how our care could be improved.
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It’s M.E. awareness month, and we’ve been taking #ThisisME selfies describing how our M.E. affects us.
Taking part in this campaign and sharing other people’s #ThisisME selfies has made me reflect on how far I’ve come but there are so many more people still experiencing severe M.E., unable to do everyday things for themselves and being house- or bed-bound.Read More »
I’ve written a case study on the difference the charity Pharmacist Support has made to me, to show how donations can transform the lives of pharmacists with disabilities. When I see other people in my situation, I feel very fortunate to belong to a profession that looks after peers who fall on hard times, especially when I see the love for the charity on social media and pharmacists’ fundraising challenges.
A few weeks ago I bought a mobility scooter and it’s been life-changing! Here’s a blog about what I’ve been able to do since and how it’s made my world so much bigger and better.Read More »
Great quick blog explaining to healthy folks how our rest isn’t by choice and it’s not even a “duvet day”, it’s because we’re too ill to do anything, and trying to will result in even worse symptoms. Having a chronic illness isn’t a chilled out lifestyle choice, it’s debilitating.
I’ll make this quick for reasons that will become apparent. I wrote yesterday about putting myself into ‘Standby’ mode.I realised that I could’ve done a better job of explaining that after people told me to enjoy my rest and relaxing time, and that I’ve earned it.
I’m not managing to do a great deal this weekend and I’m mostly lying about in bed. If you have a busy life working or parenting or whatever, then that might sound ike an attractive proposition. However, I’m not happily ‘chilling out’. I’m stuck in bed because my body isn’t capable of doing much else at the moment. It’s frustrating, dull and impractical. Alas, it’s not fun.
My symptoms are numerous and can vary wildly at any given time. This weekend’s particular version of ‘standby’ mode essentially involves feeling really ‘shite’, due to nausea, pain, palpitations and breathlessness, and with fatigue, some unsteadiness and…
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On Friday I watched the award-winning documentary Unrest at Sheffield Doc Fest.
The film includes clips from the video journal of director and US M.E. advocate Jennifer Brea since she became ill with M.E. in 2013, along with interviews with some of the other 17 million people worldwide with the illness, exploring their experiences with healthcare and the impact M.E. has had on their lives.Read More »
This week has been NHS Experience of Care Week, and on Wednesday evening there was a Twitter storm where patients, carers and health professionals were encouraged to share their evidence about experiences of care in the NHS, using the hashtag #ExpOfCare. Here’s a summary of my tweets and those of others with M.E. who have joined in this week.Read More »
This informative and thought-provoking 17 minute TEDtalk was given by M.E. campaigner Jen Brea on becoming ill and the attitudes she encountered.
Yesterday I attended the most exciting event in my 2016 calendar – the launch of Action for M.E.’s new five-year strategy at Speakers House at the Houses of Parliament in London.
This is a guest blog for M.E. awareness month by Anna Wood, a severe ME veteran of 8 years and physics education researcher. Anna writes about how work defines our identity and how not being able to work due to M.E. affects this.Read More »
The first guest blog for this year’s M.E. awareness month is by Pippa from Spoonie Survival Kits, little bags of happiness that act as a pick-me-up on harder days. Pippa writes about studying with M.E., starting the Spoonie Survival Kits fundraising venture, and how you can support the project.Read More »
A Prescription for M.E. 