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.

Sunday, 1 July 2018

Ehlers-Danlos Syndrome: A message to the newly diagnosed

I first wrote this piece for Irish EDS & HSD as part of EDS awareness month in May, and thought I would share it here too. See the original article here:

If you are newly diagnosed, hope you find it helpful. 

And if you do have either EDS or HSD and would like to write something for the Irish EDS & HSD page, please get in touch through IM'ing the Facebook page!


For anyone that has been newly diagnosed with Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder, I know you must be feeling a mix of emotions -afraid of what the future holds, but also relieved that this long mystery has finally been resolved. Like many sufferers, like in my case, you may have waited years for this part of the puzzle to be answered. Now you’re faced with even more questions, and you may come to realise that there isn’t a lot of medical help in Ireland. This makes the future even more daunting than it was before.

You could be wondering what was the point in fighting for a diagnoses all this time, what was the point if there is no cure and you’re surrounded by specialists who tell you they are not qualified, ask you to spell the condition, or are just very dismissive in general. 

I know you’re tired, but I promise things get better. Here’s how I have coped the last few years since my diagnoses:

Thursday, 5 April 2018

Repeal - A film review

As a proud Repealer I was very excited to hear about a new short film on the issue, written and directed by Karl Callan with the aim of showing his audience the faces behind the 8th amendment.

Three stories, from three Irish women, depicted in poignant scenes by actors Maureen O'ConnellLynette CallaghanAidan O'SullivanMichael O'KellyNiamh WalshRebecca ThompsonMaria FiorentiniPatrick BokinConor Waldron and Sofia Bwcka.

For those who have been out canvassing, handing out leaflets, engaging in those everyday discussions on the subject, you'll know that real testimonies about how the 8th effects women and sometimes families, has a far greater impact that opinions and sometimes facts alone. Putting ourselves into their shoes can be difficult, but seeing and hearing situations from those who have lived them is a step in the right direction. It's a step towards helping those on the fence, those soft yeses and those soft no's, make a responsible voting decision on May 25th this year.

"I researched the stories, spoke with women I know who had been through similar situations. I also spoke to medical professionals and learned of the difficulties they go through as a result of the restrictions put on them.I wanted to make sure the film was as realistic as possible"

- Karl Callan

The feature opens up with the story of Samiya.  After a dramatic beginning we quickly change to the scene of Emily, abortion from another point of view. We know immediately these scenarios, before the scenes even really come in to focus. Cut to later in her story, a stark change in circumstances, another dramatic and poignant segment.

Be pre-warned for serious content warning throughout. I realise you may already know this if you are aware of the theme of the film, but there really is no holds barred.