I don't think I have much more to add at the moment other than dh has taken early retirement and this year has been such an eye opener for him, for the first time he's witnessed my daily struggles, attended every hospital appointment and followed an ambulance nine times. We are more in love than ever.
My mother died and I regretted going to the funeral, some good has come from her death though in a most unexpected form. My eldest brother has slowly begun to realise that he had been manipulated and controlled by her his whole life and that I'm not a nasty evil person. We have spent more time together this year than in the previous forty and in his late fifties he's found love. I lost an evil narcissistic mother and gained a big brother, he cares about me a lot and that feels nice.
There was an annual grandson in 2017 but not this year, and we are planning on going to NZ next year. I had my cabin pressure test recently and to fly I need 4L of oxygen and ventilation to do so safely.
My skin has changed, I no longer look grey, my hair which I thought had thinned due to my age is lustrous and curly again, I have nails that aren't soft and flakey, my eyesight has improved but my cognitive function is the best bit. I enjoy playing backgammon again, I can watch a whole movie without falling asleep, throw dinner parties, go to the pub, do crosswords and a fiendish sudoku. I also discovered a wonderful community of supportive women, some of whom I really hope to meet in person one day.
My youngest dd has got a diagnosis at last, there is no cure and she will always be disabled, but she is one kick ass lady not only did she struggle her way through a Chemistry degree when most people would have given up but went on to secure a fully funded PhD too, we remain closer than ever. Her diagnosis also solved the conundrum of my excruciating head pain.
My son with ms got married in July, his sister came from NZ and her daughters were bridesmaids. Nineteen of us went on honeymoon with them and the cousins played on the beach, visited castles and created precious memories.
This summer has been wonderful, I have been high on the colour of leaf buds, blossom, dandelions, butterflies, roses, grass and the sky.
So how did I survive the unsurvivable injury? Doctors haven't been able to answer that, at first it was assumed my paralysis was partial but investigators showed that my diaphragm is completely inactive. I was very fit when it happened and didn't stop moving until the second injury, both of these things helped without a doubt, it gave my body a chance to work out a different way of surviving. But it's still unexplained from a medical point of view.
I've had a strong Christian faith all my adult life, to be frank my life was so shit I had to have something to cling onto and I truly believe that there is a plan for everyone, I don't know why my plan has to involve so much pain and suffering but I have to trust that there is a bigger picture that I can't see. There has to be a purpose, maybe it's about educating medics about listening, maybe the next time a surfer is hit in the back of the neck the advice will be immobilise but do not lay flat, maybe medical text books will change and a paralysed diaphragm won't mean a tracheotomy and permanently being ventilated. I don't know, but I trust a higher power than me does. Some good will come of this, it has to.
It's simply not my time to go, it's never been my time to go, when it is my pain and suffering will end and I will be reunited with the people I've lost who matter to me, that will be nice.
I have no anger, no resentment but I do have sadness over ten lost years of seeing the world in all of its glory. I can clearly see ways in which the NHS could work so much more effectively and gaps in nurse training that put lives at risk every day.
Thank you for holding my hand.
I'm very happy to answer any questions and I do mean anything.
I was completely ignorant about spinal cord injury, I would see someone in a wheelchair and know that their legs didn't work but I never though about how else they were affected so ask away, nothing is off limits.