Posted in Archive, march 2022

Bandages & Bruises

Last night I spent hours upon hours sitting in my local hospital A&E waiting room. I witnessed paramedics having to treat patients on board their vehicles as the hallways were already overflowing. Drs were having to discuss treatment and admit/discharge from the waiting room. It was heartbreaking. I’d have left if it weren’t for the fact my jaw had been out for three days and desperately needed relocating.

When I was called through, the Dr passed me the penthrox and told me to use it for five minutes and she’d me round to relocate me after. They left the curtain open to keep an eye on me. I vaguely remember feeling giggly. I’ve had this medicine a few times and that’s my normal response. But never this long. Next thing I know I’m coming round having lost consciousness and somehow ended up on the floor. They quickly got me back on the chair, manipulated my jaw into place and bandaged me up. The bandages must remain on now untill I see my neuro.

Ready for mass

I mentioned at the time I had considerable pain on my left pain but this was ignored. Despite falling unconsciously and somehow to the floor they never thought to look me over. I now have a significant bruise, my pain is high and I’ll be heading to the walk in tomorrow to get checked over. When I was diagnosed with EDS it was impressed on to that swelling and bad bruising always need to be looked at.

Whilst I appreciated the hospital was indeed ran off its feet. People like myself with chronic complex conditions can’t afford to slip through the net. I hope the demand eases off them soon.

Posted in may 2021

Looking forward

Recently I’ve been on a bit of a rollercoaster of emotions. Hence why I didn’t automatically return to blogging following my son’s operation in March. I wasn’t sure where my head was at and needed to work through it. A handful of events had triggered it and I was up and down more than the seesaw at the park.

I’d had an assessment where I need to provide extreme detail of all my conditions right from the start to now. You can imagine how emotionally exhausting that can be, explaining to someone why you had to give up your dream midwifery degree, relieving the rapid decline in health over the years and what I do to cope. I hadn’t anticipated it to affect me so strongly but it did.

It’s taken awhile but my head’s back where it’s stronger. I think during these covid times where we don’t have our usual coping mechanisms it’s quite easy to feel sucked under. Previously I could have rung up my friends and been at the soft play laughing over a fruit shoot, while the kids ran themselves to sleep. Spirits lifted, dark cloud averted.

Im looking forward now, and focusing on the future. On the post lockdown adventures with my family, with having friends in for a brew and a natter. But also accepting that lockdown has taught me that I don’t need to be on the go and out every day. If my body’s saying no then PJ’s, Disney and baking is it. That’s perfect too.

What are you looking forward to?

Posted in Archive, february 2021, poems

Dislocations; Smashed Avocado Toast

It’s the breath stealing, heart racing moments.

Nostrils flared, knuckles white with a fierce grip.

Head back, focused. Can’t swear.

Sausages. Bananas. Smashed Avocado on freaking toast.

Hospital? No. What can they do.

I’ll only spasm and dislocate again at one, then again at two.

Pass me Olaf, he needs his teeth done.

Sausages. Bananas. Smashed Avocado on freaking toast.

Fifth Knee dislocation of the day.

The spasms. Just. Wont. Stay. Away.

Still need to be a Floogal Rescue Machine.

Sausages. Bananas. Smashed Avocado on freaking toast.

Posted in Archive, January 2021

Welcome to 2021

2021 has arrived! We rang the new year in a quiet manner, a nice drink, a dislocated thumb and an early night after realising we were out of bandages (and spasms were forcing my thumb to remain out). I hope all of you had a lovely NYE and are healthy and safe at the start of this new year.

So what does 2021 hold in store for me?

As you may know from my facebook page I have set up my own holistic health coaching business which is designed to help people who are disabled/dealing with invisible illnesses. Holistic Health coaching is a partnership that will empower them, pin point problematic areas and find realistic tools to help improve quality of life, improve pain management, mental health wellbeing, and more.

Business logo. Purple background with line drawing hand palm up open with branch and stars. Words saying Dystonia & Me Holistic Health Coach.
Dystonia & Me Holistic Health Coach

Enabling others to improve their quality of life is a passion of mine. My own struggles in that area, along with fighting for help with mental health, pacing advice and more stuck me as how much holistic health coaches are needed. I know that I could have benefited greatly from one in the beginning. I look forward now to helping others, for anyone interested you can contact me here https://www.facebook.com/DystoniaandMeCoaching/