Blog

Survivor’s Guilt

A few years ago, when my ME/POTS was Severe, I could only dream of doing the things I can now. Still, when it comes to sharing my joys and triumphs on social media … I always feel a bit guilty.

Adrenaline, False Sense of Health, and Superhuman Willpower

I REALLY wanted to take O to the Junior Park Run yesterday. My mind felt totally ready. My body felt a little tired – but – I could feel the dregs of Saturday’s adrenaline still clinging to my body like a limpet, egging me on to do it.

Chronic illness changes a person. But who?

ME/POTS has definitely altered my priorities in life and imposed limitations on my capabilities. However, I am still the same person I always was in terms of personality and lust for life.

Still, something (well, someone) has changed:

… Pete.

Burden or Team Mate?

“When you first got sick, did you worry I would leave you?”

Pete asked me this recently, when he was in bed with a virus and I was looking after him.

My Baby Starts School Today. He’s ready … but am I?

O can’t possibly be starting school. We need more time, because, well … I’m not done making up for the time we lost.

PIP: In Your Own Words

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.

DNA delivered in 2mls of spit!

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.

M.E, Motherhood, and Missing Out on ‘Firsts.’

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.

M.E and Birthday Thievery

It’s my birthday – hooray! Except, thanks to three years of Severe ME / POTS, I’m a little unsure of my age.

Disability Benefits – End of an Era:

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?