7 May 2016
It will make sense to you when I describe it, but off the top of your head, would you have guessed that I have to spend time thinking about skin every day? Of all the worrying conditions that accompany paraplegia, this has been the most unexpected.
The most obvious result of the tumble is that I’m paralysed. I have nerves and muscles that talk to each other, but not to me. I have skin that responds to hot and cold, sharp and faint; but I don’t feel it in my brain. This means that I can easily do harm to myself without noticing. If, for example, I roll up to a hot oven and open the oven door and (without meaning to), open it until it rests on my lap, I can easily burn myself. My legs might try to move, but I might not notice. In another example, I might shift from my bed to the wheelchair, and in doing so, scrape my leg or my backside across the top of the wheel – knock a bit of bark off, as they say – and carry on without knowing.
As it happens, I’ve done just that. Try knocking some skin off and then sitting on it for 8 – 12 hours solid and see how that goes. Wait! I’ll save you the trouble. It does not go well. On the upside, it doesn’t hurt. On the downside, a wound that takes a long time to heal. I’ve learned that, with skin, a lot of the healing has to do with circulation. The first best treatment is bed rest (Nooooooo!) to stay off the wound entirely. A pressure wound that isn’t even severe (the skin has broken down, first one or two layers is missing) can still take a couple of weeks of bed rest to heal completely.
I am not made for bed rest. Don’t get me wrong, I like a good lie in followed by an afternoon nap as much as the next person, but flat out in bed (or worse, lying on one side or the other – not on my back) for days on end is enough to make me psychologically unfit for anyone’s company. Including my own. Without devout bed rest, instead of taking a few weeks to heal completely, the wound takes a few months. Seriously. Months.
Most of you won’t be surprised to find that I am a delicate flower, at least with regard to my skin. In one of the more surreal moments of my stay in the Auckland Spinal Unit, I had two nurses – one from India and one from the Philippines; one on one side of the bed and one on the other – arguing across the top of my damaged body about whether my skin is royal skin or baby skin. I finally had to interject that perhaps it is not one or the other, but both. Some of you may remember that I was on bed rest for 10 days as a result (as a result of the skin, not my impertinence).
My latest scrape happened in September. Although the skin is all grown back now (8 months later), I still wear a dressing on it every day. I started taking a zinc supplement more or less by accident over the Christmas holidays, and that actually sped things up a bit. It took several weeks to work out the best kind of dressing and tape to use – my royal baby skin reacts badly to some types of medical tape and taking dressings on and off only makes things worse. The nurse, who comes to see me once a week (down from twice a week visits for the first few months) to make sure the progress is still happening, tells me the skin will remain vulnerable for up to two years. I don’t want to have to think about this. I don’t want to worry about one more stinking thing – staying in the chair is quite enough, thanks. But here we are. And here we will be.
I can’t change my skin, but there are things I can do to help myself. I can use high end products like a Roho hybrid seat cushion and a fancy Metzeler mattress (thanks ACC!). I can get stronger and make sure my transfers are top notch – lift rather than slide, pay attention while I’m doing it. I can eat and drink well to nourish my skin. I can take care of any break down so it doesn’t go downhill fast. I can be vigilant in checking to make sure I’m not wounded – can’t feel it, so I have to actually look with mirrors and ask for help from Steve or from my carer. Looking after myself has a lot more detail to it than it used to; or maybe it’s just new and seems more intricate. I used to think of myself as pretty low maintenance, so all this focus on my skin and my diet is taking a little getting used to.
I’m not fool enough to think this means skin problems won’t happen again, but I will do my bit. Doing these things gives me a sense of control over a little bit of this life, and as one of the specialists recently said to me – the point of taking care is so that if something new or interesting comes along, you’ll be fit and ready. That’s pretty good life advice right there.
A wee addition: I provided a ‘lived experience’ to a pressure wound symposium a couple of months ago.
Every post you write Claudia I learn something absolutely new; realize how much we / I take for granted. Then I go places – attempt to understand the rawness of what you are experiencing. This got me thinking about the common perception swung around that we only use 10% of our brain – which I googled – and it’s not true. And yet, skin in the game of things as you describe now suggests to me that we are all walking around in a sort of cotton wool cocoon / brain connect protection. It’s something of a miraculous bubble that we can go on living like this; shielded from not one but many many realities. Devout bed rest required indeed. Thank you again for opening my eyes. Sending me down the rabbit hole too! Singing praises for those hybrid cushions and fancy mattresses. … ‘new or interesting’ … your brain may not connect with the hot and cold of things but it sure is sparking when it comes to inquiry. love across the Tasman sea xxx
and a ps totally get that low maintenance kind of girl you are in the very best sense(!) but this, making it all the more challenging.
While you may now be a Kiwi with a bit of Aussie thrown in for good measure, but you are still a southern born steel magnolia. Strong, sweet,and easy on the eyes, but very delicate.