Monthly Archives: June 2014

Positive Thinking

This week I have been feeling good, the type of good I had almost forgotten existed. This improvement is I think, in part at least, due to the reduction in healthcare appointments. My feet have as they say ‘got with the programme’ and made a concerted effort to heal themselves. This means that I can now dispense with the unfashionable, but I have to say very effective, plastic/rubber combo, sock device I have been putting over my dressings. This device has lead to some very odd moments in my bathroom. If I had a camera in the room I would have produced some very entertaining footage.

Sexy foot protector
Sexy foot protector

A few weeks ago I was due to go away for the weekend and still had not perfected the art of putting the device on solo, after much thought my mum suggested putting on a nylon stocking so that the device had more of a glide. I have to say it worked like a charm and thus a six pack of supermarket, basic brand nylons were added to my disability essentials kit. Catheters, wheelchair, medication, nylons and I am good to go. I have alway wanted to make a slinky exit from a shower, shrug into a crisp, white bathrobe with my hair wrapped casually in an equally white towel. Yes, my bathrobe is white. However, most of the time it has a black stripe in the middle of it where it has got caught up in my wheelchair wheel, which is not that Hollywood.

Recently while at the railway station I decreed that in my next life I want to come back as tall as I am now, but have the use of all four of my limbs, just so I could have the experience of walking down the platform with some cool pull-along luggage in a matching figure flattering, long coat. Try as I might, I have never yet managed to achieve this look sitting down. Tempted by the displays of colour-coordinated trolley bags, I have on occasion experimented with a pull-along bag. This has mostly just resulted in my damaging the skin on my hand as a result of its unplanned union with the metal baggage handle and one of the components of my wheelchair. I tried to get a long, smart, wool winter coat once but my comparatively muscly arms and thin body means that any long coat that fits my upper body, made the rest of it look like a sack of potatoes.

I read an article by a writer called Melanie Reid who broke her neck in a riding accident and now uses a wheelchair. In it, she talked about her feelings when she was able to stand and walk with the aid of a robot called Rex. This got me thinking about my own feelings such as, “Could I walk down a railway platform with my glamorous baggage in a robot called Rex?” I concluded yes I could, but it would not be sexy, which sort of defeats the object for me.

Some years ago, I saw a consultant who told me and my parents that it was my comparative height that had put me in a wheelchair sooner than my peers. My mum felt partly responsible as I get my height from her side of the family. As I pointed out though, I would have ended up in a chair anyway and at least the height I am, I can reach more things for myself.

For the last few years I seem to have spent an inordinate amount of time bouncing around different consulting rooms being told to accept deterioration, that I am getting older. I felt as though, all of the medical professionals believed that it was someone else’s job to help me. Six months ago a new doctor joined my GP practice, he was like a breath of fresh air. You could go into the consulting room, explain your problem and he would work with you to solve it, he didn’t want to have to refer you anywhere else. He understood me when I said that when I was well I could write (like this blog piece), but when I felt unwell I could barely get out of bed. He actually thought it was worth trying to get me the ability to write back, rather than tell me to accept the loss as part of my deterioration. He made me feel that I was worth the effort on his part. It was so refreshing having someone recognise that I had to have a point to my life.

It was this same GP who started me on anti-depressant medication, something that I had been hitherto too embarrassed to ask about. I was troubled by the thought that my personality would begin to be controlled by chemicals and I would lose part of ‘me’ and also by the idea that my ability would be regulated by drugs. It felt like one too many things to be dependent upon. I was talking to a colleague at a conference recently and something she said really put things into perspective for me and made taking the tablets less troubling. She said, “If you were diabetic and it was insulin, you would take it wouldn’t you?” The upshot is, I have taken them for about a month and a half now at the proper anti-depressant dose and I feel human, not like a dead person any more.

The friends I have made at one of my support groups tell me about getting tattoos done to mark significant events and milestones in their lives. I was a bit tempted to have one done, but I thought that there was too great a risk of an infection, or poor spelling if I had words. I settled for a silver bangle engraved with ‘Resurgam’ (I will rise again). Four days later I promptly dented said bracelet on the engraved word, getting out of my wheelchair. Ironically, I feel that this makes it even more appropriate for me, I am a bit battered, but still rising.

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Wheelie Good Omens

I thought things were going well. It has been a whole three months since the accessibility equipment gremlins last came out to play, so long in fact that I was beginning to think they had been successfully rehoused. Alas no. I got up last Tuesday to the sound of a loud hissing noise, my brain hurriedly came out of bank-holiday hibernation. What the hell now I sighed inwardly?

Those who follow me regularly will be aware of all my gadget-related nightmares. For all of you newcomers, the bungalow I live in is about 40 years old and six years ago, when I inherited it, the inside was internally demolished and rebuilt, mostly by my Mum and Dad. The result was a very spangly looking ensemble, which was dutifully equipped with every gismo you can get to make living with disability easier. The result was very definitely rehab chic, open plan and pneumatic cupboards. There really was no (parental) expense spared. Everyone with disability knows the manufacturers always put a few extra 0s onto the price for good measure. The thing they don’t tell you about is the hell you will experience when all these bits of kit that make you more independent decide to break down. My life is punctuated with phone calls that begin “Dad can you just…..”. Things got so bad with my pushbutton front door, that when it stopped working for about the twentieth time I gave up and had it disconnected. There does come a point in your life when less really is more. I pointed out to my Dad, who was keen to give the door one last try, that struggle as I may with the average front door, once it is locked it will normally remain so similarly, when opened it will do the same and, save for an act of God, it will move between open and shut without engaging in small acts of rebellion.
Needless to say, the all singing all dancing door has now been officially downgraded and I have had about 8 months of stress-free living. Anyway, the hissing was coming from the bidet loo. Water was trickling out of the wash nozzle, even though the tap was off. My first thought was limescale, a big problem where I live, blocking the valve. I dutifully attacked the nozzle with a heavy duty limescale remover, but there was no improvement and loos are just about the one appliance you can’t live without. Meanwhile, my Mum had arrived to help with my household cleaning. She examined the loo, promising to send my Dad down when he arrived home from work.

I couldn’t help but think that something else going wrong with the house was a bad omen. I had a trip to London planned and I get a little sensitive when I am going travelling. I begin to imagine that these little things are a sign not to venture out. The loo was easy to fix in the end, it was just a washer, phew! Perhaps, my week would be fine after all.

Friday arrived and I had a knot in my stomach. My inner child briefly whined that London is big and scary and did we really have to go? Yes, I said, putting my foot down and dragging us both out of the door. I got on the train seamlessly, thanks to the lovely organised Virgin people in red that seemed to appear from nowhere proffering ramps. This has got to be the only way to travel. I felt my stomach begin to relax. I was on the train, there was only one stop, what could go wrong? I turned on my Daisy talking book player to make a start of, ‘The Bell Jar’ by Sylvia Plath. The machine’s automated voice informed me, “Low battery. Powering off in one minute.” Well I did ask the question. Let’s just say that I was relieved to have done the paperwork for the London meeting with my support-worker instead of trusting in technology.

Two hours on a train with nothing to do, other than to just sit back and wait for inspiration to strike. I figure it has worked for JK Rowling, then I really would be able to afford to write. I managed to grab one of the train staff as I desperately needed a cup of tea and couldn’t see any sign of the refreshment trolley. I asked for help from a passing member of staff in getting a cup of tea. This lovely young man went and got me one for no charge. This must be a week for good omens.