A writers’ life

When I used to picture my future life as a writer. I was sitting on a sun-soaked veranda in the South of France, sipping an espresso and glancing out to sea wistfully, while conjuring up scenes of fantasy and adventure. Instead I’m lying in bed in a small room in Wellington, looking out at our tiny courtyard garden, writing about the frustrations and daily joys of life with a long-term disability. Yet it is that reality which has led to me living out the life of a writer, not my childhood fantasy.

Mind you, right at this point in the blog I’m sitting in a conservatory on a sunny day, at Cleeve Spa Hotel. It’s attached to their new coffee shop and is a great place for me to sit and write. My cup of cappuccino is beside me. I have a view of trees and distant fields through the large picture windows. There’s a gentle squeak from the coffee house sign as it blows in the wind outside. Just enough to give ambiance and interest. Playing in the main part of the coffee house I can hear the strains of background music. This is not a busy place yet, good for me, but no doubt not good for business. I can’t imagine it will stay that way, as people discover this oasis on the outskirts of Wellington that serves food and drinks from early till late in such lovely surrounds.

Conservatory at Cleeve Spa coffee shop

My bottom is reminding me I’ve been sitting in my wheelchair for quite a while. Even though I have a battery powered ripple cushion, a result of generous donations from friends and family, my sensitive bottom still feels the pressure. The “occupational”, is that the right word, hazard of a permanent wheelchair user who still has feeling below the waist. Not that I would want to lose that feeling, many other problems would ensue. My gluteus is not very maximus. It never was, but since the illness I have tried not to put on too much weight. The easiest thing to do when you spend all your time limited, is eat. The easiest things to eat are sugary, sweet things. I can polish off a whole packet of biscuits, or bar of chocolate, not the small ones. So, I had to make a choice. A few months ago, I was going through one of the regular bouts of sickness I get. It put me off most food, but particularly sweet stuff. After I recovered, I just made a choice to continue not eating sweet things. Although I had lost the sugar cravings, the desire for sugar was not gone. Christmas was very difficult, and Easter a complete nightmare. But I continue and it is not just enabling me to continue at my current weight but even lose weight. Important when you are hoisted and have a limited width wheelchair. I’m not yet in danger of fading away “to a cough drop.” As my mum would say.

Back to ripple cushions. I had only heard of them as being mains powered, for beds or armchairs. There are ones, again mains powered for wheelchairs. But what is the point of a non mobile ripple cushion for a mobile chair? A ripple cushion is an alternating air-filled cushion, they work in different ways, but the principal is the same, pressure changes on different parts of the cushion, so that you get a ripple effect. In the case of a bed mattress, as I have, the pressure change moves up and down the bed. It’s like moving a patient regularly to prevent pressure sores. The same applies to cushions for chairs or wheelchairs. But I’d not seen a portable one for a wheelchair until a few months ago although I thought there must be such a thing. It was developed by one company and brought out in 2017 and it’s called an Alerta mobile cushion system, this has been amazing for me. I can now stay much longer in my wheelchair. I still find the discomfort builds up after a few hours, so I must recline my chair to alleviate that. The key difference is that I’m sure I will not get pressure sores, it’s just uncomfortable after a few hours in one position. The device prevents sores by the ripple effect of alternating the pressure in different areas of the cushion, but no device can prevent discomfort from sitting in one position. Wheelchairs by their nature restrict you to one position. I am fortunate that I can profile my wheelchair and so alleviate that.

Because of a combination of things. The profiling wheelchair, the Alerta ripple cushion, Conveens (see my blog Not so public convenience), and my new medication we can plan a trip by train to stay with one son and hopefully also see the other and his wife. Train assistance and wheelchair accessible taxis play their part too.

One extra factor has made planning this trip possible. A hospital type bed at our son’s house. I first looked at hiring one. Once I’d recovered from the shock of the price quoted and they assured me that wasn’t to buy one, I looked on Ebay. A wonderful gentleman was selling, not just a profiling bed with sides, but everything else I needed thrown in, all for £99. One problem, it was over a hundred miles from where my son lives. Transport looked costly. Then this amazing guy volunteered to drop it off for the cost of the diesel; £20. There are some very generous people out there. Now I will be able to travel to our son’s house, have a bed to sleep in that I can match to my wheelchair height and slide onto. Not ideal, but I can do it for a week. I will really look forward to my hoist when I get home.

Those more astute of you, I’m just buttering you up, will have noticed that my blogs include a wide variety of types. There are autobiographical, fiction, poetry, thoughts, theology, experience and I am not the only author. Mary has so far written one piece with more to come. The blogs were written over several years, some are very recent, and some over ten years old. Some were written when I was taking my OU degree in English Lit and Diploma in Creative Writing. Yes, that’s right, that means I know nothing about writing. Each type of writing is categorised but depending on the type of device you are reading this on, those categories may not be obvious. A word of warning, if you are reading this post on a phone, watch out for that lamppost ahead! I feel I must say that now as one of my readers nearly walked into one while reading my blog.

It takes me a while to finish off a blog, so as I finish this blog it’s 4.30am and I’m sat in bed. It’s still dark outside, but at least it’s warm. When it’s cold I have a woolly blanket to put over my shoulders. A friend from church knitted it while praying for us, so we call it our prayer blanket. I used to sit in a small pool of light from my bedside light, but now with all my smart switches (see my blog It’s a smart world) I have light all around me. Sitting, surrounded by light is where I will leave this blog.

There are many other blogs to explore. Please feel free to comment and if you enjoy them, please click like.

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Author: Mike Nevin

I decided to write about the funny side of being cared for. I am a full time wheelchair user with daily carers. It's my experiences with my carers that inspired this blog.

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