Showing posts with label London. Show all posts
Showing posts with label London. Show all posts

Friday, 6 July 2018

Health updates - Summer 2018

And now for all the boring stuff. I'll keep it all as brief as possible!

Here's what's been happening since my trip to London...

The experiment 

On the advice of the London physio, my own little miracle worker decided to try and unlock my thoracic spine (which we believe has been locked since childhood). As this being locked is causing immense pressure and strain on my c spine (meaning that my head has less support and the neck is struggling to keep it upright daily as the c spine is doing so alone), unlocking it would help bring about some strength and stability. Maybe even decrease the neck dislocations.


She explained to me how this slow process would go. I would lie down on my front and she would gently touch along my t spine, encouraging the vertebrae to open slightly. There are apparently four stages to this process, although with my issues she was reluctant to even suggest that we get to stage three. She was hesitant, as she has never attempted this on a patient who dislocates/ has EDS, but as I was keen and London agreed it was the best option for me, she was willing to go ahead with the treatment.

We would start at stage one and build up, I would see her one a week to try and progress to the next level. It was somewhat experimental, and neither of us could predict the outcome. Firstly because, well, everyone is different, and secondly because she has never performed this treatment on anyone with complex issues. I could sense her fear, so I really appreciated her agreeing to proceed.

I lay down and she gently touched along my mid spine -tiny, little nudges. Not even taps. Muscles that hadn't been activated in years began to spasm as the vertebras were moved. Odd twinges along my sides, radiating from the spine. It was a strange feeling but not unpleasant. The movements were so tiny yet so powerful. I left that day with an appointment for the following week.

Unexpected side effects of the bizarre kind

Within minutes of leaving the clinic my gag reflex went into overdrive. I started making the strangest sounds as my body lunged forward, violently spasming along my diaphragm. It wasn't painful, but was annoying, and uncontrollable. As well as hilarious. I sounded ridiculous. Something almost goat-like. Bicky was in stitches. This was a very unexpected side effect from what seemed like a simple manipulation of my spine.

Friday, 1 December 2017

Health updates - Winter 2017

Howdy folks!

So few health updates...
(See previous here).

Head, Shoulders, Knees and Splints

As mentioned in the summer, I've started seeing a physio at last -one who knows a bit about EDS and willing to keep me on. Through her I was also put in touch with an occupational therapist, who was able to fit me with suitable to finger splints as well as a few other hand/ arm supports. The ring splints are truly amazing! I have so much more movement in my fingers, and they dislocate a lot a less. From typing, to even coughing into my hand, my fingers were honestly just crumbling and in a state of dislocation 24/7. So these have helped a lot. These tiny bits of plastic really do so much work. An exoskeleton of sorts. Next I need to inquire about something for my knee.


I also had a visit to the house to see what could be fitted. I turned down most things -I have issues getting in and out of bed but don't feel I require anything yet, I don't feel I need bars at the toilet as I have the bath one side and cabinet the other side so use them to sit down... The one thing I accepted was this beauty of a perching stool. The slopped design of the seat means that I can get far enough to the sideboard to chop vegetables, do the dishes, etc, but I'm also leaning on the seat comfortably. Perfect on days when I can't stand for long.

Wednesday, 4 October 2017

A big cripple baby thank you


Apologies in delays in getting this up, and apologies also for it's shortness -my fingers are in a right state at the minute, so writing and typing is very difficult. I'll do a post tomorrow on health updates.

Without further ado however, a big thank you to my bestie Sarah for organising a recent fundraiser in our local town -The Cripple Baby Gameshow, hosted by musicians and general funny men TPM.


Which took place in The Spirit Store (cheers Mark and Derek!). In what as an amazing night, full of devilment, cheese and laughs, the event raised a massive €1,600! Which will go a huge way towards my treatment and tests in London. The raffle received a massive response with donations from -

Secondly, thank you to the contestants and everyone who helped out on the night in so many various ways, and who donated or helped out with props! - (in no particular order) Emer, Serena, Dara, Sarah, Tasha, Breanainn, Christina, Evan, Nikita, Kyle, Mark, Romeo, Anthony, Charlotte, Frankie, Fahy, Isabel, Mr. Price for donating decorations and Conlon's Food Hall for the yummy curry.... Forgetting a million of individuals I'm sure, there's a few people that I don't even know that helped out in all sorts of ways! A massive thank you to all, and to everyone who came along of course, from the bottom of my heart.