Blog

Crystal Ball Christmas

If M.E has taught me anything, it’s that time is not a given. That, and fear of relapse is a real head-fuck.

SHIT. My earplugs are breaking … PANIC!!

Most people with M.E and/or POTS have SOME sort of aid they simply cannot live without. Mine is my earplugs.

Chronic illness = letting people down.

So, I’m in this not-so-fun predicament today where I kinda need to choose between my partner (Pete) or my five-year-old son (O). Hmm …

Miracles DO happen!

Yesterday was a VERY rare day for me. I was almost entirely symptom free. And now, I’m just flabbergasted.

Six things I learned from my time in a wheelchair

Wheelchairs are great. We all know that. Still, as with most things in life … it’s not all spokey dokeys and rainbows. So, here are six crappy things I never knew until I found myself in a wheelchair for three years.

Compassion for … Compassion Fatigue?!

“All you ever talk about is your health.”

Have any of you had these hurtful words uttered to you? I have … and I’m guessing many of you have too.

Becoming an Ambulatory Wheelchair User: The Choice.

Once upon a time, back when my ME/POTS was severe, I used an electric wheelchair on the rare occasions I could leave the house.

This was a truly difficult, no scrap that – I mean fucking awful – decision to make.

Here, I explain why.

It’s That Time of Year Again

It’s that time of year again. And I don’t mean Chris Rea starting his drive home for Christmas at the stroke of midnight on Halloween, Ho-Ho-Ho.

No, I mean every October my ME gets a little worse and I start wracking my brain to figure out why.

Conversations with POTS: Standing up for Not Standing Up

“F**k, I don’t feel so good. I really need to sit or lie down. Like, RIGHT NOW.

This is what goes through my head every time I find myself in a situation where I need to have a meaningful conversation whilst standing up.

But … why is that?

I fucked up. And that’s okay.

“You’re going to be okay. You’re going to be okay. You’re going to be okay.”

“… But, what if I’m not? What then?”

Those are the thoughts racing through my head, as I fight back the tears and terror of never knowing if today will be the day that I relapse.