The complex story of loving someone with mental illness

The one where they got secretly married (nay neH)

Yes, yes... nay neH is "Just Married" in Klingon

So I've briefly mentioned this in a couple of my last posts and I'm sure some of you were like, wait what, did she just swipe over all that gossip of eloping? Like some kind of celebrity. And yes, yes I did.

But now I'll get all basic bitch and gush about my wedding day for those who want to know the full story -so if you're uninterested look away now.

The planning

We're both (myself and Bicky) quite practical people. Laid back, too. Bicky works in the wedding industry so sees his fair share of nuptials. While they're all wonderful celebrations for the happy couple and their families, it's just another, average work day for him. I've never had this childhood fantasy of a fairytale wedding day with a huge white dress, cake... None of that stuff. We're both also (super duper califragilistic) atheists, so a church was never going to happen either.

With all that in mind, and not wanting a big party or fuss or such, I always assumed if we were to bother getting married that we just wouldn't tell anyone. Perhaps, not at all. People might find out way into the future, if one of us was in hospital for example, but I would be content in never mentioning it otherwise.

After a brief discussion last winter (2017) we decided to get married in secret (but to tell people afterwards, as we kinda wanted to wear rings). That was it really. All very practical conversations.

• We applied to give our three months notice of intent to marry on March 5th, 2018. 
• Picked a registry office that was open the day we wished to wed.
• Booked a hotel in to stay that night, the stunning Farnham Estate. 
• And then a house in Achill for the week for our honeymoon (we just told people we were off on holidays to Achill).

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.

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!

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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: