I’d like to say I was shocked by the comments I received in response to my ‘Disability Benefits – End of an Era’ post the other week, but sadly, I wasn’t. I’ve therefore decided to crank the volume up on making your voices heard as well, by quoting (anonymously) some of the things you told me.
I’ve done it! I’ve contributed to the world’s largest genetic study of M.E.
Here, I summarise the bumpy road for our community leading up to this M.E milestone.
Our children’s ‘firsts’ are important milestones in their rapid development – which is why it’s so heartbreaking when M.E stops us from witnessing them. Here, I talk about the recent ‘first’ I missed out on.
It’s my birthday – hooray! Except, thanks to three years of Severe ME / POTS, I’m a little unsure of my age.
PIP (disability benefits) are a financial lifeline to many people with ME/POTS. So what happens when you no longer qualify, yet you’re not well enough to work?
‘Mental load’ is something most women have to deal with. It is HARD to manage with M.E, given that merely ‘thinking’ can exacerbate numerous symptoms. Here, I discuss how I manage my mental load.
Taking on new projects or responsibilities can be exciting. But if you suffer with M.E and/or POTS, then be prepared for a little Mind vs Body backlash.
When I was healthy, I had one or two bottles of ‘good’ wine put aside – for years on end – ready for an occasion where I felt ‘deserving of it or like I’d ‘earned’ it. Not anymore. Nowadays, I drink the good wine. Here, I talk about why.
We did another ‘thing’ as a family recently: a road trip to Oxford for Pete’s cousin’s birthday bash.
I haven’t been to a large social gathering since before getting sick over six years ago. It’s been a looong time. It was FANTASTIC – albeit different to when I was well.
Here I discuss my son’s reaction to seeing an ironing board for the first time, and why it’s taken 4 years for the concept of ironing to (finally!) enter his radar.