Category: Humour

Most people celebrate their 25^th wedding anniversary by having a big family party or going on a cruise. In 2007 we celebrated ours by buying my first wheelchair. OK, so we did have a small family get together too and we went away to a hotel. Oh yes and we got our first Motability car, not sure where that comes on the scale of treats. Perhaps it’s just an essential.

Back to wheelchairs, Mary had been trying to talk me into getting a wheelchair for some time. She knew it would really help me and enable me to get out and about as I was able to walk less and less. I was too focussed on what people would think of me in a wheelchair, how I would look. I hated the idea that people would stare at me. By 2007 I could about manage to walk 25-50 yards on a good day before I was in extreme discomfort and really exhausted. Which meant I didn’t really get to leave the house much. Mary came up with a great idea that eventually convinced me to try a wheelchair. She said think of it as, “go further wheels”. I decided to try the idea and when we were given money for our anniversary, I bought a cheap, attendant fold up, push wheelchair from Amazon. It was made of steel, so it was heavy, and it only had hand brakes that operated on the tyres. No brakes to slow it while Mary pushed it.

This first wheelchair lasted about two weeks before we had to send it back as unsuitable. It was just too heavy for Mary to push. When I was in it Mary couldn’t even see over me. Mary is petite. Also, when pushing me down a slope it ran away due to its lack of brakes.

One day I was seeing the GP for a regular visit and explaining all this when she referred me to the NHS wheelchair centre. Within a very short time I had my first NHS push wheelchair. Because of Mary’s stature, it was custom built. They made it of aluminium, so it was very lightweight and also low slung, and it had drum brakes.

Let me describe the absolute joy of our first trips out in that wheelchair. First, we had the Motability car that had space for the wheelchair in the back and straps to hold it. We were living in Hartlepool at the time, so we went to the seaside most days. On a typical trip we would arrive in brilliant sunshine and then get out into the biting North Easterly wind. HartlepooI had that way of fooling you with its sunshine. I had a good selection of warm leggings and coats, hats and gloves. So wrapped up like a mountaineer, Mary would push me along the road towards the promenade. Hartlepool has miles of promenade, well-kept and wide. If it was down South it would be a very well used seaside resort, as it is in the colder North East, the promenade is not really busy, even in summer. The one problem with the sea front were the slopes down, or rather back up from the lower promenades. That’s when the amazing friendliness of people so often shone through. They would either help Mary push me up or push me up for her.

Most days the seas were dramatic and invigorating, Hartlepool is a beautiful place as is the whole North East coast. I so enjoyed our trips along the coast. I used to make up stories about the people we saw coming the other way. These trips out were the highlight of both our days. At some point I will post those stories in a fiction section on my site. Mary and I miss that first wheelchair, it was light, easy to use, and we were physically close to each other in it. In my later power wheelchairs, we are further apart.

You may have seen Little Britain, there is a character in it who uses a wheelchair. Whenever no one is looking he runs around and demonstrates that he has no problems walking. I think there is a widespread belief in many people that some wheelchair users are like that. Comedies reinforce that idea and I think I know where the idea originates. With illness, if they affect our legs at all, we often lose the use of our legs gradually, whereas accidents tend to be acute and leave people suddenly unable to walk. This is true of many neurological conditions, MS, Muscular Dystrophy, etc in fact some conditions have an up and down element to them. Good days and bad days. So, the fact someone is in a wheelchair doesn’t necessarily mean they can’t walk at all, perhaps they can only walk a few steps, perhaps they can stand. Maybe some days they can walk further than others. Unless you have experienced this, you may find it hard to grasp.

My legs first started to play up in the early 1990’s, sometimes working and sometimes not. In 2012 I was limited to a hospital type bed and a wheelchair full time. There have been many ups and downs over the years. Between May 3^rd 2015 and Jan 18^th 2018 there was a medically unexplainable miracle. I will post about that separately as it is a big subject.

My second NHS wheelchair was a push high backed reclining wheelchair. I was never really able to use it because it was too heavy for Mary to push and too heavy for her to operate the recline and tilt. After a few weeks they gave us a power pack, but it ground on our step and we had to ask friends from Church to get me outside. For a whole year I was unable to get out of the house except with help. Then finally the NHS gave me a powered wheelchair. It was powered in movement and recline and tilt. I also got a grant to add power to the leg lifters.

My current wheelchair, which I got in August 2018 is the best NHS wheelchair I have ever had. Everything was powered right from when I was given it. It has 6 wheels with a central pair of drive wheels, so it rotates easily in confined spaces. The suspension is brilliant, it articulates, so it copes with uneven ground well. That may sound like a gimmick but imagine going down an uneven road and you are in a wheelchair that doesn’t give at all. The whole thing just lurches left and right, you feel like it will tip over. With articulation the uneven ground is smoothed out so that you are not thrown around as much. There is a limit to how much unevenness it will smooth out and you still must be careful in a wheelchair not to take it on extreme bumps.

What’s it like to be in a wheelchair? You discover that roads are much bumpier than you realised before. You also notice all those little steps, 1- or 2-inch steps than seem non existent when you were walking but feel like ski jumps when you are in a wheelchair. As for a 2- or 3-inch step, a wheelchair positively leaps in the air and comes crashing down over some of those. In the case of my current power wheelchair it has about a 2-inch clearance under the battery shroud, so it also grounds. Most roads have lowered pavements these days, but not all lowered pavements are equal, some are quite a bump, and some have a drainage channel running in front. Then you get those people who think lowered pavements are an OK place to park. Leaving us to travel a long way looking for the next one.

Mary must operate my wheelchair when we are out on the public streets due to the collapses counting as fits or seizures. She is excellent at driving it. There is a rear control on my chair, but Mary can’t see over the chair when using it, so she uses the front control. That makes us wide. Pavements in Wellington are not as wide as us, especially where shops put out signs, chairs, bins etc. Then there are those funny moments when people are walking towards us. They see us two abreast, my hands on my lap and I am mainly looking around, not ahead. Yet they still seem to assume I am operating the wheelchair and walk straight at Mary expecting her to step left and let them pass between my chair and her. Which, of course, she is forced to do. We are then repeatedly enforced to stop because of this.

Slopes are really fun. The front two wheels of my six wheel chair often come up into the air when I first go up a sharp slope. It puts Mary’s heart in her mouth and makes me very glad if I am wearing brown trousers. Slopes generally can be terrifying. The best trust game I know is when I or someone else operate my wheelchair backwards down a ramp on the accessible transport. I am being told I am lined up and going very slowly. But I must trust the people telling me or operating it. I always prefer it if Mary is there to confirm instructions or if she is operating it, I totally trust her. One or two inches either way and I would be off the ramp and crashed in a heap.

The other fun thing about a power wheelchair is that it stops when you take your hand off the controller. Well, it stops in about a foot or so at top speed. Very exciting if you are heading towards a road at the time. Controlling a power wheelchair generally is an experience that really should be for the youth of today as they are joystick controlled. Our son’s and daughter operate it like experts. Mary and I took a while to learn. I don’t know how older people manage. The joystick is so sensitive and frisky that we had ours adjusted to be less sensitive, but it still involves a lot of skill to get it round our house. Anyone would think the Victorians hadn’t thought people would use a power wheelchair in the house in the future, short sighted eh? As for British roads in the average town, they are just not wheelchair friendly at all.

Wheelchairs are life changing, essential bits of equipment. Embarrassing to get used to being in. Tricky to use in many settings, but I could not do without it. It enables me to get out of my house into the world.

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I realise my recent blog posts have been a bit serious. Actually, I’ve a lot of fun with my carers. I thought I’d share a few stories.

At Christmas one of my carers did some decorating for me. She attached a knitted Santa to my hoist bar, that my daughter made as a child. A hoist bar is the metal bar that hangs beneath the electric hoist mechanism on the track attached to my ceiling. Santa was attached in such a way that he was staring straight down at me. He looked like he was strapped to a railway line upside down.

I have two slings I use when hoisted. One is a day sling for transfer into my wheelchair or reclining front room chair, as its name suggests, you wear it all day. The other is a toileting sling to transfer onto the commode. When using this second sling Santa has a rather shocked look on his face, well who wouldn’t. I was so glad when the decorations were taken down, mind you Santa looked relieved too.

In order to make my wheelchair seen better at night and so I can see in the dark, I have bicycle lights on it and reflective tape. At Christmas I was given some waterproof LED strip lights. I decided they would be a great extra safety feature. I was not thinking “let’s pimp my ride.” Nor did the idea, “this will make me look cool.” Cross my mind for a moment. So, I asked one of my younger carers to fit them, as I knew she would understand the need for ‘safety’ and ‘visibility’. I didn’t ask her because she would understand the need to make my wheelchair look good, because obviously that wasn’t on my mind anyway. Then at Church the next Sunday evening I demonstrated just how safe these lights made my wheelchair by switching them on and rotating my wheelchair. I have demonstrated the safety feature several times since, to lots of people. Kids love them.

I enjoy a bag of chips, well who doesn’t. Every now and then Mary goes to visit her Dad and I have a carer for a full day. On these days I look for an excuse to go out to the park via the fish and chip shop. Funnily enough they don’t object too much to the idea. We always enjoy sitting in the park eating chips watching the world go by. Sometimes being cared for is very hard work.

I tend to have a good laugh with my carers. It’s important that the carers I choose have a good sense of humour and all of them do. Sometimes we laugh so much I am nearly in tears. Laughter is a great medicine; it is also good way to deal with embarrassment. One of my carers noted that there is a warning sign that I am about to go into a collapse it’s when I become quiet and stop joking around. I start to stare into space and become unresponsive. When it first happened for her, she thought she had offended me.

My bed is supplied by the district nurse and it can rise up and down as well as profile. That means the head and legs can separately raise in various ways. The reason it’s height adjustable is so my carers can reach me without hurting their backs. Whenever my bed is adjusted in height or I am hoisted, I like to sing an appropriate song. “You raise me up…” Or “up, up and away…” You get the idea. I am sure hearing the exact same song every time is a delight to my carers. I can see it in their faces when they look bored. Or when they say, “not again!”

My riser recliner chair has a ripple cushion as does my bed. The cushion on my chair consists of fingers of inflatable pipes. So, any unsuspecting person sitting on my chair gets a surprise every few minutes when the ripple effect kicks in. It’s as if a hand massages your bottom. My bed is not quite so dramatic in its ripple effect, although when someone has perched on the edge they have been surprised to feel the rubber tubes ripple.

While thinking of riser recliner chairs reminds me of the first time, I had one years ago. It was before I had a hospital type bed and when I could still stand for short times on good days. I was sitting in the chair and I wanted to get up, but my legs wouldn’t let me, they were too weak. This was one of those days my legs were not working. But I thought to myself, “I’m in a riser chair, why not use the chair to help me stand.” I can be such a genius. I powered the chair upright and as it rose up, I slipped down the chair and into a heap on the floor, where Mary found me a few moments later. Had I used my brain I would have realised that if my legs were too weak to lift me out of the chair, they were too weak to hold me up. Instead I had to wait in a heap on the floor for the Deane helpline people to arrive and assist me back onto the seat. I’ve had a lot of instances over the years where my desire to try and stand has overcome my common sense. I think sometimes it just feels silly that my legs won’t work, and so I think of course they will, then I try them and find they don’t.

I have a lot of smart technology to assist me. My main one is Alexa; it connects most of my other smart devices together, so I can use my voice to control them. One of my main ones is a doorbell with camera and intercom. It’s my favourite way to surprise, I mean greet, someone at the door if I get to use it before Mary or my carer answers the door. When someone rings the doorbell, I try to get to the intercom first so that a disembodied voice can say “Hello!” It’s always fun watching the reaction on the camera.

One day the postman was standing waiting with a parcel having rung on the bell. Mary was upstairs, so the front door was unlocked, I said “Hello, I can’t get to the door as I’m disabled, can you please just put the parcel inside the door.” He nearly jumped a foot in the air and was looking around for where the voice came from. The problem is, it only works on someone once.

My time with the carers is a time I look forward to. We have fun, it’s a laugh and they’re a support and help. We have interesting conversations about all sorts of things, and we become friends.

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Have you ever said something and then realised it could be misunderstood? I find that happens all the time with my carers. Here are a few classics.

One day one of my carers had come in from a very cold outside. I was warmly wrapped up under my duvet. She got the water ready to give me a bed bath and pulled back the duvet. When she touched my skin she exclaimed “Wow! You’re really hot!” Then realising that could be misconstrued she corrected “I mean your temperature, not your body.” Sometimes we just need to stop digging.

One time Mary was sorting out care for her elderly Dad and after finding out they were really organised she said “They’re on the game.” Meaning, of course, really on track, up to speed or on their game.

When I stayed at a nursing home once I was asked by a 17 year old carer how old I was. When I told her I was 57 she said I looked much younger than that. Still glowing with the joy of being told I looked youthful by a young lady I was unprepared for the next carer who came in. She was in her early 20’s and asked me the same question. I gave the same reply and awaited the response in eager expectation. “Oh, Umm, yeah, I guess so.” She mumbled looking at me quizzically. Talk about highs and lows.

Another time I had received a minor pressure mark from a sling used to transfer me in a nursing home. It was inside my thigh quite high up. The sling used is called a toileting sling and has an obvious use and less obvious ones, transfer to baths and showers. I am convinced they were designed by and for women because the straps that go through your legs come excruciatingly close to a part of the male anatomy that doesn’t want crushing. They also cut into your legs. I now have my own toileting sling that is much better padded, but this happened a few years ago. Hence the minor injury. A few days had gone by and two carers were checking to see if things were better. In a nursing home you always get two carers at a time. You can read a bit about that in my blog Body mapping.

I asked how things were and one of the carers said “Your groins excellent!” She said it with a surprising degree of enthusiasm. That’s one comment I was happy to take out of context, in fact I quoted it at the breakfast table, the dinner table, at tea…. Oh yes and I have posted it here.

There is one last mis-quote which I have touched on in my blog Not so public convenience. I was at a nursing home and had suffered an injury from using a urine bottle in my wheelchair. One of the carers asked if I had ever used a Conveen. I said I hadn’t, so she suggested I try one that they had. One of the nurses who was on duty and doing the rounds was drawn into the conversation. She said, “Oh no! He’s much too big for the Conveens we have.” One thing men like to do is boast about the size of their manhood. But, before I go any further I should point out, they only had the smallest size in stock and I am average. Conveens are primarily measured on width. Still I had a moment of feeling good about myself. I didn’t mention this at breakfast.