Monthly Archives: April 2014

Babel Fish Anyone?

I have to apologise to those of you who had a two-lined post delivered to your inbox. This was technological incompetence on my part and happened because I am at the time of writing this on a mobile phone, undertaking a weekend’s bed-rest trying to heel ulcers on my feet. I touched what I thought was the ‘save draft’ button and 30 seconds later realised I had published what was a very meagre post indeed.

I started the week feeling comparatively limber from a disability standpoint. This is, I think, due to the switch to British Summer Time and the lighter nights and mornings it brings. This is in addition to the mega-strong anti-inflammatories my doctor prescribed.

I woke up last Sunday to bright sun and a lovely breeze, this saw my independence skills sprouting anew. They have been a little dormant this past winter with one thing and another. It was what my mum calls “a good drying day”. I decided a change of bedsheets was in order as I was spending the afternoon at my parents’ house; meaning that my Mum could dry the sheets, iron them and put them back on my bed. This was the method in my forthcoming madness anyway. So how did I achieve my aim? The procedure goes thus:

1) pull back duvet.
2) fling self bodily onto bed in a starfish position.
3) Claw at bottom sheet until elastic pops off corner of mattress.
4) hold corner of sheet and roll to end of bed. This should successfully remove sheet for washing.

Begin the same procedure with the duvet cover and realise one minute in that the cover has buttons at the bottom and not the simple press-studs I was expecting. This makes for a much longer job and feels like Occupational Therapy. For a brief moment I am transported back 30 years to my first class at school. Along with the toys, learning aids and physiotherapy equipment there were a selection of fabrics stretched over a wooden frame all of which had different fastening. There were zips, buttons, toggles, press-studs and Velcro . There you would sit relentlessly grappling with whatever torturous ensemble came your way. I hated the buttons, and still do all these years later. They are what clinches me buying an outfit or consolidates its rejection, or in the case of the bedding situation vow to emerge undefeated!

This I did some one hour later when I put the lot on a boil wash. I rolled back into the bedroom to flick on a DVD. I hunted for the control in all the usual places and a few unusual ones, like my bathroom. Sounds unlikely I know but I have found it in there more than once. It was nowhere to be found, I gave up and went to have a cup of tea. The kettle boiled and all was silent, except for the washing machine in amongst the usual sounds associated with it doing its work I could detect an ominous ‘clunk’. The control had been gathered up in the sheets and had been merrily working its way through the clean, rinse and spin cycle. I was horrified, surely it would not survive and I was about to be plunged into televisual limbo, as the emergency control was at the top of the television set and tantalisingly just out of my reach. I thought I had just created the words first ornamental TV.

I retrieved the control from the drum, dried it, changed the batteries and pressed the power. I have to say I did this more in hope than expectation, I nearly passed out when the little red light blinked on and News24 came on the screen. This is a marvel and triumph of Swedish engineering as far as I am concerned!

After all this activity I felt like I deserved a bit of a treat. I ordered a box set of Law and Order I had never seen, just before I discovered ulcers on my feet and got told to rest and elevate them. I thought at least I would have something good to watch. I waited for the postman in great expectation, opened the parcel put the DVD into the machine only to discover it was in fact dubbed in French. Babel fish anyone?

(For an explanation Google ‘Douglas Adams’ and ‘Babel fish’).

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The Creative Muse

As most of you know I have been experimenting with all things artistic recently. I was faffing around on Youtube last week and came across ‘Art Journaling’, this is a way of expressing yourself using words, colour and images that are personal to you. It really has got me thinking. I had not intended to use art to comment on social or disability issues, I just wanted a bit of down time as I am often told that I ‘do’ disability too much, that it has an all consuming influence on my life and is destructive and negative. All in all a counter-productive force. When discussing a persistent episode of writers’ block a friend remarked that I eat, sleep and breath disability and even holiday in it as well. She felt that I needed a break from it all and art was to be my attempt at the great escape. This was just going to be about me in a soul sense; no big political statements, but freedom in the true sense. That aim fell apart when I opened ‘A Short History of Drawing’ by Andrew Marr, in the introduction he discusses the stroke he had and the frustration he felt when trying to draw during his recovery. He notes that for the first time he was hit by the realisation that drawing was an activity that very much required the use of both hands. I had a flashback to a time when I had to be constantly reminded to, “Put your left hand on the paper when you are writing and drawing” great, unless it happens to be your weakest side! I think this perhaps was part of the reason I never found drawing or doing anything on paper therapeutic or enjoyable in the psychological sense. Essentially, Mr Marr’s book is about his own art journaling. He uses drawings taken from life and photo’s to recall and record significant and domestic events in his life. Colour is used as a powerful tool to add to the tone and dimension of the image created. This makes quite mundane images more significant and this effect is added to by his short descriptions. It inspired me to attempt to do something similar. I have long wanted a way to record random quotes and phrases that have impacted upon me, prior to the journal they were just dotted about in notebooks or on hard drives in no particular order, meaning that they were not easy to catalogue and therefore tricky to find when the mood was on me. By turning them into a visual form it made them more expressive for me and forced me to organise them in a more logical progression. I have learned to love experimenting with colour and contrast and I can do this now to find the combination with the greatest impact for me. I have moved now to combining computerised text with my images which actually makes it feel more ‘mine’, which is fantastic if you don’t like your own spidery handwriting. Art for me now has become less of a distraction from my cares and woes and more of a therapeutic aid to mental recovery, which is a powerful tool to me.

This was my first attempt. The girl in the picture is part of a background by the artist and art journal maker Jennibellie
This was my first attempt. The girl in the picture is part of a background by the artist and art journal maker Jennibellie

Catheter Life Charts and Other Dispatches

I never fail to be surprised by the bureaucracy within the NHS which then gets thrown in my direction. This week I was scheduled for a routine catheter change, something that has been part of my life every six weeks for almost a decade. The change itself is relatively simple; a short but not necessarily sweet procedure and, until last year, I thought beyond the imposition of NHS paperwork.

It seems I really tempted fate because some well meaning healthcare operative introduced the ‘Catheter Life Chart’. This is a multipage booklet that looks at the process of, need for and alternatives to a urinary catheter. This form was introduced with the aim of reducing ‘unnecessary’ use of catheters and thereby their complications such as the infections having a catheter in situ can cause. I bet you’re thinking great, sounds really positive, what is there to whinge about?

The problem is that the form is not designed for us long-termers, who are managed in the community by a health care team. It is so clearly meant for the hospital ward. Questions include: reason for insertion, removal, change; does the patient understand why they have a catheter; does the patient know and understand how to manage and care for it. I have watched a fifteen minute treatment appointment creep up to almost an hour, just because of this form. I complain fiercely at every appointment, the nurse always tells me orders from on high say it just has to be done! To be fair she did add in the box for additional comments that, “The patient thinks this chart is a complete waste of time and resources”. A small victory for all the prodded, poked, relentlessly scrutinised and documented disabled populace. Two weeks ago I was reading The Times journalist, Melanie Reid’s “The Spinal Column”. She talked about the relentless questions and repetitive documentation that she has also experienced. When you are in clinic or being admitted into hospital, you are suddenly bombarded with these questions about your day to day care needs, ironic really as I often think as I am answering, “Yes, and when I was struggling to get my jeans on without falling out of my wheelchair this morning, nobody cared. And they won’t care tomorrow when I’m home once again either.”

If these questions were asked with a view to your needs being met and your life changing for the better, which of us would argue? But to be constantly asked the same questions with no expectation of improvement and to do it at every appointment you have, becomes ridiculous. Just look back through the notes, my answers have not changed, because my disability hasn’t!