A new relationship is always exciting; the excitement of discovery, the bliss of love, the newness of learning about each other; it was all that, and more! But my new relationship came with a whole world of other stuff which would have a massive impact on our lovely new-ness. Becoming part of his care routine, meant I wanted to learn how to manage everything so that we could be a “normal” couple together.
Despite his serious spinal injury, David is generally in very good health. With paralysis and confinement to a wheelchair 24/7, comes a list of other things that many of you probably won’t ever have considered. His intercostal (chest) muscles don’t work, so his breathing is generally quite shallow and he can’t cough very deeply. This isn’t often a problem, but give him a cold or God forbid, a chest infection, and suddenly it’s fairly serious and a little bit scary. I had to learn through a specialist chest physiotherapist, how to perform an assisted cough to help him clear any phlegm from his chest. (FYI bit like a punch/Heimlich manoeuvre-combo-thing!). Then there’s the skin issues and the risk of pressure sores, and tiny little bits of broken skin that take weeks to heal.
Everyday things we take for granted like going to the loo. He has a supra-pubic catheter: a special tube which is fed through a hole in his abdomen: this drains his bladder into a bag which during the day is strapped onto his leg (gets emptied several time a day, more often when Guinness is in the equation). Pretty much all the time, it works fine, but when it occasionally gets blocked, or the catheter site gets icky and infected, then it can cause a lot of problems. Middle of the night autonomic-dysreflexia, emergency catheter changes in car parks, urinary tract infections, high blood pressure, it’s all ‘stuff’ that happens. The catheter that takes the wee away from his body is changed every few weeks, and so becoming his care giver, I needed to learn to do this confidently. It’s a sterile procedure which requires a degree of sanity, sensibility, and calm. None of those qualities have ever been particularly prevalent in me!
So off to Stoke Mandeville I went. I was taught, examined, checked and rechecked in the art of catheterising by a senior nurse. She granted me safe passage to yet another tick in my new found list of nursing abilities. Then I did a course on ‘living with spinal cord injury in your family’. It was interesting and funny; and although I felt I knew a lot already, I was growing with knowledge at every step.
And then I had to be “signed off” on bowel management.
Now…we’re really down to basics. We all poo. We all need to empty our bowels on a daily basis, it is part of our existence. Varying disabilities dictate that this isn’t always done in the same way: I had absolutely NO idea about the intricacies of bowel movements until I met David!
We all do it! I already knew about, and had been involved in his routine, but as part of me being his ‘carer’, the powers that be deemed that I had to be trained as a healthcare professional to sign me off in administering his care. Forgive my flippancy here, but for 14 years it was absolutely FINE FOR the NHS to supply him with care through agencies which he had to direct and often teach, but when suddenly he wanted his partner in place, they insisted I went on courses aimed at district/community nursing staff, and that I was certified in the same abilities.
Anyway, so to a poo course I went (it might have been called something more ‘surgical’). It was run by a brilliant, funny woman at Stoke Mandeville Hospital. As usual on such courses, she did a brief intro and then came out with the ice-breaker of all ice-breakers: when was the last time you lost control of your bowels in Tesco?
Now, being a fiendish Waitrose addict, you will understand that this question left me cold to the core. But she gave no other shop option, so I was forced to admit that “not recently” was my final answer.
And so over the next 8 hours, I learnt about dealing with, the management of, and the care of my boyfriend’s bowels. There was a fake bum in the room. That alone was enough to render me hysterical. The bit where we discussed colour, texture and quantity had me helpless in my seat. Not your average way to spend a Tuesday; but if I meant I got another tick on my list of skills, then it was worth all the childish sniggering. I got a certificate at the end of the day; it’s not on a wall anywhere. I’m not entirely sure where and how one should display one’s ability to perform bowel management.
Someone, somewhere reading this will be thinking “why the hell did you take this on?”. Another one of you will be thinking “Oh my goodness, you are incredible.” I’m not amazing, or incredible, or giving up my life, or sad. I am in love; that is all. I am, and always will be in love with this man. Part of his life is complex, and so part of mine dictates that I share that with him. So I deal with poo. And wee. And scary night time spasms that wake us up and mean that neither of us gets any sleep. And I hate those nights, and those days when it is all a bit frightening and I can’t (despite all the certificates and training) figure out what I need to do to make his body calm and take the pain away.
I believe that I am good at managing his care. I am irritatingly vigilant; poking and prodding whenever I get the chance. But I think I look at him differently to how a carer or a nurse does. I want to be good at it, because I want to keep him well and healthy. The better he is cared for, the better his long term health and the longer I have him in my life for. And if that means I get to squeeze the odd spot along the way, or clean out a tiny wound or two, then all the more fun for me! I didn’t have to take on any of his care; that was entirely my decision. And I don’t regret it one single bit.
In between all the day to day life stuff, we’re pretty crazy busy. I still run my business (if you haven’t looked at the rest of this website yet….it’s here) and do my own thing; I go to the gym (really), I bake and cook (hence the gym membership), I read, I write, I garden (yes, really!) and when time permits, I sit down, look at the daffodils and I do nothing. Next time I’ll tell you about a ‘day in our life’ because sometimes I wonder how we find enough hours to get it all done!
I apologise for a lack of blog posts from either of us in recent weeks. Three weeks ago, we had to say goodbye to our beloved Labrador, Millie. I am not ashamed to tell you that I was absolutely devastated by her loss; I still am. I miss her more than I can put into words. I couldn’t write for a while; I couldn’t see why any of you would be interested with my words – it all felt stupid and irrelevant when I felt so sad.
But so many of you have told me how much you are enjoying this and have asked me to write more. So I will, I promise. Thank you, all of you for your messages, emails, texts and support. It means so, so much to know that you are reading this and enjoying it. Much love to you all xxx