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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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 »
Since the launch of M.E./CFS: a guide for pharmacy teams, it’s been shared by a national community pharmacy organisation and has featured in a magazine.Read More »
The M.E./CFS guide for community pharmacy teams which I have been working on with Action for M.E. is now available online.
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This M.E. research round-up covers the following studies: Faulty pain receptors, What can cerebrospinal fluid tell us? Reporting on M.E./CFS in the media. Read the research round-up
This M.E. research round-up covers the following studies: Potential blood test, Brain function worsens after exercise, Trial of an arthritis drug, Recovery experiences. Read the research round-up
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 »