Month: May 2016

18 May 2016

I’m surrounded by people every day. A carer who brings me breakfast and helps me in and out of the shower, a PT who keeps me on track to get stronger, an OT who helps me learn new skills and teaches me about my equipment, my dearest partner who laughs with me and hopes with me. And friends. And colleagues.

One might think that I don’t have a chance in hell of feeling lonely. One would be wrong.

I spoke to another paraplegic on the phone just a few evenings ago. He is designing a specialised bike for himself and others and he wanted to talk to other paras who might find such a thing useful*. As we talked, I realised how nice it is to talk to someone else who has the same life issues that I have. And I realised how isolated I’ve become in my grief and in my … uniqueness. Unique amongst my friends and family, of course, not unique in the world. But sometimes it feels that way.

I don’t socialise like I used to – partly because it is currently impossible for me to do some of the social activities I used to do (like tramping/hiking/bushwalking), but also partly because it is easy to get into a habit of doing the easiest possible thing, which is to go to work, come home and stay home**. I can understand, for the first time in my life, why and how people become house bound. It is so easy to do, and so easy to make excuses, and frankly, so easy to sit here and wish things were different, all the while feeling a mix of self-pity, resentment and guilt (for the self-pity and resentment).

I do my best to let other people in – I’m working up a ‘wheelchair challenge’ at work so people can have a go in the chair and see what it’s like, I talk to people who are interested in my situation, I’m part of a facebook community designed to connect people with spinal cord injuries and their families, I read the blogs of people in similar situations, and I watch youtube videos of people demonstrating different wheelchair skills. All of these things help, but honestly, none of them are quite like that phone call. That feeling of sharing a predicament in real time.

The power of writing this down is that I can reflect and think and become inspired to do. Every day, I ask myself “what did I do today to make myself stronger?” Sometimes the answer is “I took a nap”, sometimes the answer is “I learned a new chair skill” or “I went to the gym”. This discipline has been helpful because it helps me to acknowledge even the smallest steps in getting stronger, more capable and more independent.

Maybe I need to add “what did I do today to make myself less invisible?” so that I can answer “I sought out another para and talked about how annoying it is to be ignored at a counter because the clerk can’t see me”  or “I had a coffee with another wheelchair rider who wants to get a dog” or “I went to that bike shop that specialises in adaptable bikes so I can take part in social sporting activities”.

In the mean time, I will pout and listen to my favourite song about loneliness.

*please please please DO NOT send me a hundred links of bicycling equipment already modified for disabled people – he is designing something special, not me. And yes, I know (and he knows) there are many on the market already.

**Occupational therapists who specialise in this kind of rehab know this, so there is a focus on getting out and about – making sure I at least have a route I can do fairly easily to get to a cafe or the gym or a park or somewhere, anywhere.

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.