Where to find information and support on M.E. Read More »
Not sure who to ask about a new symptom or health problem? Read More »
How can we become more empowered, and what do health professionals need to know to enable this?Read More »
Being awarded PIP at long last has opened up lots of other help such as travel cards, a blue badge and discounts for those who help me when I’m out and about.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…
View original post 271 more words
For #WorldMentalHealthDay this year I’ve written about PTSD in general, and then more specifically about trauma due to experiences as patients with chronic illness.Read More »
When I shared this article from The Mighty on Twitter it seemed to resonate with others going through a tough time, so I thought I’d share it on my blog too. I recommend signing up to The Mighty’s email list as they’re always great articles by people living with chronic illness. 10 Things to Remember When […]
There’s a gaping chasm between what’s provided and what people with M.E. need. From where I’m sitting, as a patient first and health professional second, the only way to get what we need is to collaborate. In this blog I show the ways patients are becoming more involved in research and healthcare.Read More »
It’s the start of the 2016/17 flu season and people with M.E. and carers may be eligible for the free vaccination at pharmacies and GP surgeries, so I have updated my original blog post with this year’s information.
Here’s a helpful article about the disbelief, denial, anger, guilt and overwhelming sadness we can feel. Read the article and see my Sources of help & information page if you’re struggling with grief and need support.