Once upon a long ago, I promised I’d keep writing this blog and tell you about the highs and low of life with an occasionally-grumpy tetraplegic. So you came along for the ride up until the point we got married, and then I kind of disappeared! No one to blame but myself, but life yet again threw us numerous curve balls to dodge, and hurdles to jump and things like ‘updating the blog’ began to fall down the list. If it’s any consolation, I missed writing it. I was desperate to tell the story of our wedding day a thousand times over! You may have seen it on ITV’s ‘Extraordinary Weddings’ show at the time; I was the one who cried. A lot.
Short version….we got married; it was fabulous, it was everything I dreamed of and more. And yes, I do want to do it all over again! I felt like a princess, I cried buckets, I danced all night long and had the best possible time. And I drifted away from it all on a cloud of bliss as a wife of a very special man. It was perfect and it was made ever more magical being surrounded by so many of our family and friends. We were honoured with amazing gifts, blessed with crisp autumn sunshine and then had a dream honeymoon cruising around the Mediterranean, basking in our ‘just married’ bubble of happiness.
But life, as it always does after such a monumental event, settled back to normality pretty quickly. As winter struggled towards spring, we suddenly found ourselves in a difficult situation AGAIN of having no carer to help out. I’m the contingency plan; no carer to help and I have to take over. We spent months trying to recruit and had a few disasters to manage along the way! One of the issues was finding temporary cover from agencies that had little or no experience of high level spinal cord injury; which meant I couldn’t stray far from home in case of an emergency. I should explain that David needs specially trained carers, it’s difficult to hire people through a general care agency; they could help him out with going off to a meeting, going with him around town or get him dressed. But his personal care; well that was all down to me until we could find the right person and then put them through the necessary training.
Someone recently asked me how I separate the two very different sides of our relationship. One minute I’m his wife, his person, his lover, his confidant and trusted soul. An hour later, I could be tending to his personal needs, helping him shower, dressing a pressure sore, changing a catheter in an emergency, filling his car with fuel, making his coffee, or helping him file paperwork. Sure, many couples do those things together (probably with the exception of personal care!!) or split household duties, but there are elements of care that are hard to share; especially with the people that love you the most. When we don’t have a carer to share some of those responsibilities, every bit of it is down to me. There are many people in similar situations who don’t want their partner to be part of their care routine; they want the line between ‘caregiver’ and ‘partner’ to stay intact. I chose to take on some of David’s care, not right for everyone but it works for us. That said, after nearly 14 months of being his full time carer; I was relieved when we eventually found a replacement. In all that time, I had 2 nights off – and that’s exhausting. Last autumn we celebrated David’s 50th birthday and then embarked on a drive to the south of France towing his racing dinghy for him to compete in the European Sailing Championships. Hard work again; but we were surrounded by our sailing family and the aches of boat rigging were dulled with assistance from the local vineyards and a never ending supply of moules frites.
And then in a fit of insanity (seriously) we thought November was the ideal time to take the back of the house off and completely renovate the kitchen/dining area. The “it’ll absolutely, definitely, 100%” guarantee from the builders that it would “surer than a sure thing” be finished in time for Christmas turned out to be fake news. We endured 6 weeks living in the lounge, 20 feet away from a tarpaulin keeping the snow out – with a microwave, a kettle and a basin whilst I gazed longingly at the hole that would one day (halfway through February!) emerge as my dream kitchen. I can hear you all thinking: “sure, that doesn’t sound too bad”. Well, let me try and explain….and bear in mind we had decided to take our house to pieces throughout the coldest and wettest winter many of us can remember….
Part of David’s spinal cord injury means he suffers from Poikilothermia – basically he has no ability to control his temperature. Ideally he needs to live in a tropical hothouse; he is otherwise freezing, and with low body temperature comes endless spasms, an entirely new level of grumpiness and the only way of keeping him happy is to wrap him in tin foil, park him near a roaring fire and remember to turn him every 15 minutes. David could only move around 2 rooms. Every meal was microwaved (it gets seriously boring after about 4 days). I had no fridge for wine. I was making 437 (approx.) cups of tea per day for the builders. Everything, every single teeny tiny minuscule thing in the house was COVERED in brick dust. And the weather was nothing short of baltic. It snowed; 3 times over that period – and let me tell you this, wheelchairs and snow DO NOT MIX well together! Himself was caged up for days on end as he merrily wheeled dust around the bits of house he could get to and tried to avoid discussions on paint colours. House renovations are never easy, but my goodness….we don’t do things by half do we!?
All in all, the first 18 months on married life have been hectic to say the least. And as I write this, we are about to embark on the biggest adventure of all. In 5 weeks’ time, we fly to Tokyo. Whilst I’m idly dreaming of conveyor belts delivering endless sushi and the opportunity to buy ‘Hello Kitty’ shaped things, the purpose of this trip is for David to compete in the Hansa World Sailing Championships in Hiroshima. Having finished 3rd in the Europeans last year, he’s excited and well and truly up for the challenge. The logistics of getting us and his boat to Japan are terrifying! Several weeks ago we dismantled the GB boats and carefully packed them into a 40ft flamingo pink container which is now on a ship in the middle of the Pirate infested Red Sea. They are due to arrive in Hiroshima before we do, then we will rebuild them and the GB sailors will do the important sailing bit! We’ll then dismantle the boats again, fling them back in the container and it might arrive back in the UK when it’s hopefully too cold for himself to want to go sailing (I live in hope….).
I’ll have many adventures to report on as we travel around Japan; we know it’s not going to be easy, we’re having to make a lot of compromises, but we’re going to have a blast! Having ignored you all for far too long, be prepared for many more blogs in the not too distant future.
Sayonara for now xx