The things people say

I am no angel, no really, I can hear you all objecting and saying Mike you’re perfect. Oh, that was just me. So I know that I say all the wrong things, very often, yes, very, very often. So, I am saying this in full understanding, but nevertheless I find it amazing.

We were on a respite holiday in Dawlish last week. Most days, weather dependent and in spite of Mary having a cold, we made it to Coryton cove for a coffee at the open air café. It’s lovely to have a coffee overlooking the sea. But, one day when we arrived we were greeted by a chap sitting at a table having a coffee, who said:

“My friend has a wheelchair just like that. He is quite spasticated.” I don’t know if he felt extending the word made it better; it didn’t. Or if he thought I wouldn’t see the connection to me; I did. Some people don’t think. I know he was trying to be friendly, but really that isn’t the way.

Another day we were waiting for Mary’s dad to join us. Mary got chatting to a local workman. He was sorting out the grass. She was admiring his handiwork. Note three things 1/ I was next to Mary. 2/ I was obviously with her. 3/ I was clearly in a wheelchair. The man started talking about how he had a bad back and was due to retire soon. His back was crumbling and may lead to him being unable to walk. He said:

“I don’t intend to end up in a wheelchair, I couldn’t cope with that. It would be awful. Being pushed around. There is no way I will choose that.”

So he was suggesting being in a wheelchair is a choice and that it’s a lesser condition to be in a wheelchair. All while I am sitting listening to him; unbelievable. Perhaps he thought I was deaf, or stupid.

It’s easy to say the wrong thing. I started by saying I do it all the time. But I think you’ll agree these two examples are a little more extreme than most. What does happen a lot are those little comments that we just don’t think about and probably don’t even realise we’ve said.

Someone once asked me if I remembered being normal. I hadn’t realised I was abnormal. Often I am asked if I am alright, just when I am sitting in my wheelchair. Now I hear you, that’s just being kind and thoughtful. But, do you ask the same question of someone sat on a chair? It’s a fine line, I realise, after all I know that I am in a fully supported wheelchair with shoulder straps, I have a neck brace and head support. So if Mary pops into a toilet when we are out and about or into a shop. Those five minutes that I am apparently alone, I may appear very vulnerable. I suppose I am and certainly if I had a collapse in that time I would be totally vulnerable. It just feels odd, if I am sitting, feeling fine when someone says, “are you OK?” I start to think, “why don’t I look it?” Ask yourself how would you feel if people kept asking you that. It does happen quite a lot. Even if Mary steps a few feet away to take a photo.

Of course the other extreme is worse. I have had people assume that I can just get up and walk. I guess they assume my wheelchair is one of those shopper buggy’s. Once I had a very odd conversation with an assistance person on a train. I should just say, this is very unusual. Of all the times we have had assistance, I have always had really understanding people. But for whatever reason this person was not. Maybe they were cross because they had been given the wrong information about my location on the train. So the train had been held up and initially the wrong person got off then back on the train. An old lady who had assistance booked for the next station and assumed they knew what they were doing. So on finally arriving with me they were not in a good mood. Instead of putting the blame where it belonged on the booking agent. They suggested that somehow it was my fault. After all as they said, “many disabled people can get out of their wheelchair, so how would the agent know I cannot.” You see the reason I was in a different carriage was because I had to have a wheelchair space and the agent had mistakenly booked me an ordinary seat. So the train manager had moved me at Taunton, then supposedly phoned Exeter. I had, of course, made my need of a wheelchair space clear to the assistance booking agent and I use the system a lot anyway so it’s on my records. But this person on the train would not accept that and still thought it must be my fault. Mary and I were made to feel as we had done wrong. I will repeat, this is the only time that has ever happened. But it’s another example of how people can say really odd things. To suggest I have a choice about whether I can walk or that I would not tell the booking agent I can’t is ludicrous. If the person had not been so stressed they would have realised that.

One last strange thing people say. I have been called ‘cute’, OK, that’s no surprise after all just look at the photos of me. It was said of me by a young girl when I was in a collapse, she said to Mary, “Ah, he’s so cute.” Maybe she thought I was a big baby? Mind you when I am in a collapse people often think I am asleep and comment on how peaceful I look. It has taken me a lot of time and practice at meditation to feel any peace when I cannot move. So no, I am not at peace in a collapse. Still at least I look cute.

People say odd things, we all do. I guess the point of this blog is that we all need to put our brains into gear before we speak. Me most of all.

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Inspiration versus concentration

I was trying to work out the other day why it’s so much easier for me just to write what comes to mind, whether that’s fiction or ideas compared to writing logical thought and complex notions (as with essays). It’s the difference between inspiration and concentration.

I can just put metaphorical pen to paper and write. Or literal finger to iPad. When we were on holiday for a week, I wrote 3 short stories and a 20 min playlet. Ideas just flow from my mind and onto the paper. I don’t find I have to work at it.

One of my carers asked me, “did you rest as well?” For me writing isn’t tiring if it’s just writing what I think, as I think it. Writing is tiring, when I edit it afterwards or when I try to produce something specific or create an essay answer.

The easiest thing for me to write is fiction. Story ideas just flow straight out of my brain and onto the paper. You get an insight into the world I experience inside my head, poor you. My imagination constantly creates imaginary worlds. Being limited in what I can experience in physical reality means my brain creates a world that fills that gap. I have noticed that since the level of my limitations have increased, my imagination has increased and hence my amount of fictional writing. But that was only able to even start after the new medication that increased my concentration. Before that my brain was far too sluggish and foggy.

Some very kind people come up to me or my wife in Wellington and Taunton and say they read my blog. They tell me that they find it helpful and even inspirational. I find that humbling. I just write what I feel and think and hope it may help. When I hear it impacts people that amazes me.

The reason there has been a long gap between posts on this blog site is because I have been putting together a book of short stories that I am about to publish on Kindle. Most are completely new Hilda stories and therefore comedy. I have had a funny summer, in more ways than one. Every humorous incident I have stored up and accentuated in the Hilda stories. I only have the time and energy to do one or the other.

My writing then is mainly inspiration with only the need of a little logic and concentration to edit it at the end. Most of what I write is written in one go with no breaks and only brief editing at the end. I can tell, I hear you say. But that’s ok because it’s a style that works for me and I would recommend it, if you want to start writing. Or even if you already write but find your style stilted or heavy. Inspiration is the way forward with a little bit of concentration needed to keep it on track.

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Mirror, mirror on the wall

One big advantage of being in bed a lot of the time is that I don’t see myself in a mirror very often. Recently we were on holiday in Dawlish at a convalescent hotel, it works really well because the rooms have call bells and a nurse is on duty. Two of the rooms are accessible enough for my use. I can even wheel my wheelchair into the wet room. Unfortunately they don’t have a wheeled commode I can use to have a shower. For our efforts in that direction read my blog “An unusual request from Amazon.” But I can wheel in to the sink to wash my hands, a small thing you might think; not to me.

Above the sink is a mirror, I don’t usually get to see myself in a mirror. So imagine my shock when I saw the face staring back at me. Is it the youthful, rugged, handsome face I picture in my mind? Of course not. It’s a fat old guy with hanging jowls and wrinkles, little hair and what there is being grey. Chubby little cheeks and generally a worn looking old face. Who is this! Oh, it’s me. At least when I’ve seen photos of myself they are either distant, poorly lit or retouched automatically by the phone. A bathrooms harsh light and big mirror does none of that, it just shows truth. The unvarnished, glaring, literal truth.

Mirrors are useful things, they reflect back at us the things in front of them. They don’t judge or modify, so they tell us the truth and we can work with that. But we are so used to our modern tech that we probably don’t even realise that most modern phones automatically adjust photos by type. So a face is recognised as a and the phone automatically treats it as a portrait which is then enhanced, softened and beautified. Even when that isn’t automatically done, often people do it themselves. The the image we end up presenting to the world via social media is a mask. We don’t do reality any more.

I have looked at some peoples social media photos against the person in real life and wondered who they hired for the social media photo. Mind you people probably think that about me. No, reassurance kicking in, I have been recognised from my blog photo by people who don’t know me. Image is so important to us, how we see ourselves and how we want to be seen.

What a lot of people may not consider is what a wheelchair user thinks about their image. Don’t we care what we look like, because after all don’t we look like dorks anyway, wrapped up in all sorts of coverings, all sorts of bags on the side and back. Supported seating, special controls. Yes I can call myself a dork, it’s only discrimination if you do it. Have you ever wondered what Stephen Hawkins must have thought about how people viewed him? A brilliant brain in a broken body. We do have feelings about how we look, we just don’t have a lot of choice. I was saying to one of the wheelchair technicians how lacking in style wheelchairs are. He said “they are NHS after all.” What’s that got to do with it. The NHS pay wheelchair companies a fortune to make them wheelchairs, they just need to specify ‘make them look nice too,’ it wouldn’t add cost if done at the design stage. It’s all about motivation and political will.

I obviously cannot speak for every wheelchair user. Apart from anything else, some of them look very cool, in their swish wheelchairs. I can only really speak for myself. I know when I go out on a summers day, wrapped up as if it’s winter, because I feel the cold, I look naff. I don’t know what the weather will do later and I can’t update some things, so I dress for the coldest possible. Plus I don’t wear shorts, partly because I don’t believe in inflicting my legs on unwary passers by and partly because of the conveen leg bag that would then be on full show. I know some wheelchair users have got beyond such embarrassment, I haven’t.

I think that fully supported, tilting power wheelchair user and cool looking are mutually exclusive terms. So I am thinking there needs to be a new perspective on this. We need to be the trend setters. After all, why not? If it can be fashionable to have your underwear showing and the clothing ripped and worn, why can’t fashion become visible urine bags, inappropriate clothing for the weather and all the other indignities we have to put up with as wheelchair users. Yes, I think I can cope with being a fashion icon. Wheeling down the cat walks of Paris and London:

Imagine the scene a Paris cat walk, cameras flashing, TV cameras following every move, crowds packed in, a commentator announces:

“Mike is sporting a baggy pair of sweat pants in fetching blue, the sweeping flow of blue nylon with inner liner checked cloth is actually a cunningly disguised waterproof cover, that flash of red is the inner hood of his coat, highlighting his head. You will notice the sky blue bag draped at a jaunty angle on the rear, and the way Mike’s legs are wrapped completely within the faux fur lined foot snuggle and yet the zip is left open to show some of the interior white fur lining. Adding to the whole effect we have thrown in a smattering of alternating colours and textures by adding padded cushions on the headrests and hanging brightly coloured bags on the sides. These side bags, which we have called “multi purpose fashion panniers” are available in a range of colours and styles to suit your tastes. As a humorous and yet functional addition Mike is now demonstrating the water bottle holder attached at a slanty angle on the side arm. As Mike spins round at the end, oops careful there Mike, there’s no sides on this stage, I think you’ll all agree this is a fashion we will be seeing in the high street chains soon. You will be jealous if you have no wheelchair.”

Some of you know me well enough to know what a joker I am. But I am making a serious point. Being in a wheelchair you can feel like a Wally and you don’t see yourself very often in a mirror to really judge. But we are aware of it and I for one do like the idea of looking a bit more stylish. Even if such a thing is impossible, even before I was in a wheelchair. So maybe we should set the trend for a new fashion style. Who knows maybe wheelchairs will become the new must have fashion accessory, just like people who wear glasses just for style reasons.

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It’s not the despair, it’s the hope

There’s a comedy with John Cleese that has a great line in it. At a point in the story when the main character is almost ready to give up, he says, “it’s not the despair Laura, I can cope with the despair, it’s the hope.” By which he means, if he could just give up on trying to get to the headmasters’ conference in Norwich, the aim of his quest, then he could relax and let go. The despair he would then feel would be bearable because he would no longer be fighting. I understand that feeling very well.

Poster from the movie clockwise

Illness is often characterised as a fight, we talk about fighting against cancer, fighting a disease, we even fight a cold. We congratulate people who ‘overcome’ an illness. In cancer wards there is often a bell to ring triumphantly at the end of treatment. We celebrate and see a victory in overcoming illness. Now don’t misunderstand me, of course it is brilliant when people get well, and we should celebrate that. There are definitely illnesses that respond to being fought against. I also know that the mind plays a big part in all illnesses, so positive attitudes help in getting well, whatever is wrong with us. But there are also illnesses that do not respond to fighting. There are illnesses actually made worse by fighting.

Have you ever seen or heard of a Chinese finger puzzle? It is a tube that goes over two fingers, one on each of two hands. You then try to pull your two fingers apart. The harder you pull, the tighter the tube grips them. This is because the tube is designed to compress onto your fingers as it pulls apart. The only way to remove it, is to stop pulling, stop fighting, to actually push back the other way and remove it. Another illustration would be sinking sand, struggling makes you sink deeper. There are things made worse by fighting and struggle, and that is true for several illnesses too, as I know from experience.

Chinese finger puzzle
As you pull fingers apart the puzzle/trap grips more

You can see that an illness like that makes you look like a quitter. Because the only way you improve is by resting, stopping, what appears to be giving up. The only way to improve at all is by not fighting it. It’s counter intuitive and contrary to the way of the world. We are brought up, especially as men in my era to be fighters. We are told to try hard, push forward, try and overcome. When we have a cold, everyone’s attitude is to ‘suck it up’ and carry on. So why not be like that with all illnesses.

Here’s the thing, I am, and I was a fighter. I was first ill in 1990 and I carried on working, fighting, ignoring the illness. It’s both the advice I was given and the type of personality type I am. The effect on me was to make me worse and worse. I was physically strong, oh yes and often stupid. In the 1980’s I loaded a moving van with all our family’s possessions single handed, upright piano and all! There was no tail lift on the 7.5 tonne van, the only thing I could not load on my own was the washing machine. I had to get help. With the piano I put one end on the van and lifted the other up and slid it along. The washing machine was a dead weight and the van too high above me. I used to move car engines around without hoists. Yes, I was young and stupid. I am not showing off, I am saying I pushed myself beyond. When I had pleurisy in one lung, I drove, in agony, from South Wales to Scunthorpe on Christmas Eve so the family didn’t miss out on Christmas celebrations. Yes, I was in hospital that night, but I made the drive, in agony. Illness does not easily stop me. I am not a quitter.

Yet illness felled me. I could push no more. There are limits to human strength. I am not superhuman. I get so frustrated when people say I should pull my socks up or look at things differently or that illness can be overcome by positive attitude. These are such stupid comments. Not every illness can be overcome by attitude or strength. If positive thinking could make any difference, then I would never have been ill. If strength would help, I would not be ill. There are some things that just cannot be overcome by positive mental attitude or by fighting it. There comes a time when giving up really is the best and only option. Then at last you find rest and peace. Then at last healing can begin. I come back to my opening quote “It’s not the despair, I can cope with the despair, it’s the hope.”

Once you realise that all the fighting in the world is only making the illness worse, then coming to terms with it and learning to accept it really is the best way. Yes, you have to go through the despair of realising, ‘this is it.’ You may initially rail at the frustration of your limitations, but in the end, you can come to a place of peace and actually start to feel better. I have found that once I got through that period of angst and kicking against the limitations, I could make the most of my circumstances. Once I stopped wasting the little energy I had on anxiety and frustration, I could use it to enjoy the day.

If you have a similar illness that is not improved by fighting against, then learn from this. Stop fighting, accept your limitations and find the good things within your limitations. Obviously, this doesn’t apply to illnesses that you can fight against, but only the ones you can’t.

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Towels have so many uses

I used to think towels were for drying. Or maybe, if it was big and multi-coloured then lying on and changing under on a beach. Now I have a very different view of towels. Two hand towels every day are used by my carers, one for top and one for tail, I didn’t even know I had a tail. Now here’s the clever bit, somehow the two towels double as modesty towels and drying towels. I know, amazing dexterity and swapping must go on. Actually I do have another towel, a large towel used for the lymphatic massage, no it doesn’t do the massage, it’s not that clever, it covers me up, but let’s not confuse things.

I have discovered that modesty is something carers are keen to maintain. It’s quite funny really when you think about it, they are washing your personal bits and making sure that you are covered. It’s like washing a car with a blanket over it, just uncovering the bit you are washing. I understand why, just seems funny. Humans are strange when you think about it. We have some bits of our body we hide and some bits we display. These vary over the years and in different societies. Anyway, that’s an aside. The point is we all get embarrassed if we are caught part dressed. We even allocate bits of clothing that can look identical to other bits as under garments. I digress again.

Over this last year and a half there have been a few funny moments, that come as a result of having my bed in our main room and my main care visit mid morning.

One time I was mid being washed and dressed, in the early days of one of my carers. She didn’t know all my family and friends. The door bell rang, so she left me with the two towel setup and answered the door. A lady we knew was at the door, she walked in past my carer saying she was just there for a quick visit. As she was so quick and confident, my carer assumed she had a right to come in. I heard her walking into the kitchen next to my room and I called through, “I’m not dressed, you’ll need to come back later.” OK so me in a towel is no different to any other Holywood Hulk rippling in muscles lying on a bed, but it seemed better for her to come back later. I thought she may prefer it and I certainly did.

Another time the district nurse was visiting and Mary was asking about a mark on my nether regions. Checking it wasn’t a pressure sore starting. In chatting, after showing her the mark Mary left my bottom exposed, the nurse covered it back up. Not surprising, there’s only so much excitement someone can take, oh yes and it was the correct thing to do from a modesty viewpoint. You see there is a right time and a wrong time to see a bottom.

Then there was the time, fairly recently in the hot weather. I was so hot I couldn’t face wearing joggers. I don’t really have other trousers, joggers are nice and soft. So I said to my carer I would just wear pants. She pointed out that it would be embarrassing for me if a visitor came. I said none were due, so it seemed fine.

Mary was out with friends at a meal and she phoned to say she was on route back. My carer needed to leave, so as Mary was due back any minute she left. Unfortunately, I had a collapse in those few minutes. Mary then came home, accompanied by two new friends, a husband and wife. Not knowing I was lying in my underwear she brought them in to meet me. I don’t think they were at all phased. But I felt embarrassed and being in a collapse couldn’t cover myself up. Mary was too distracted by the new people to notice. They only stayed a few minutes. Ah, the joys of limitations. Which also takes me back to an earlier point, what’s the difference between multi coloured underpants and swimming trunks? A button fly I suppose, but if it’s buttoned up, not a lot. Yes, it was.

I have been in Nursing homes where in the middle of a wash with two carers, the door opens and a third stands there asking a question. I have considered selling tickets, but maybe they’d ask for refunds. You can feel very exposed. I am sure the carers in those situations don’t think about it, obviously they should.

Hospital was the worst. I was in hospital last during the flu epidemic they had early 2018. It meant that they used the dining room as a side ward and my bed didn’t have curtains. They had to move a very unsatisfactory mobile screen around my bed if I needed a wee. It vaguely covered about a third of my bed, with a lot of effort they could borrow screens from another bed and totally screen my bed. But the ward was under staffed due to the extra patients, so it was hard to find staff to get a bottle let alone move screens. I don’t think modesty and dignity were words I thought of during that week. I won’t even talk about the time I used a bed pan.

Back to the towels. At least now, at home, I have a regular cover of modesty provided. Isn’t it great that something as simple as a towel can act as a modesty screen and a drying aid, and a beach bed and a massage cover. If you have read “Hitchhikers guide to the galaxy.” Then also a means of interstellar travel. Amazing things towels, they have so many uses.

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Flash, bang, wallop, what a picture!

I have always enjoyed photography and still do, even in a wheelchair.

My first camera, in 1972, was a Kodak Instamatic, it took cassette films of about 12 negatives and I had to badger my mum into processing it. Of course I could only afford black and white photos, or rather only convince mum to get me black and white. It was a few years later when cheaper colour, processing included with films came in.

The first photo I took was on Christmas morning at Church. Everyone leaning into the photo and many still excluded, this was a camera where you didn’t see what you were taking. The viewfinder was next to the lens and it wasn’t until you got the photos back you realised Aunty Fanny had no head and Uncle George wasn’t even in the photo. In these days of digital photos via phones, it’s difficult to comprehend such limitations.

I used to so love photography, as I grew up the cameras and equipment I had improved. I started processing my own photos, both black and white and later colour. When I met my wife, Mary I was able to invite her up to my darkroom, quite genuinely, without any puns about enlargers or seeing what develops. We both used to love going on photo expeditions then processing the photos.

Before we met, Mary had gone to the same camera shop as me, looked at the same two SLR cameras and decided against the one I bought. Not because she thought it a worse camera, but she thought it was a bit gimmicky. The traffic light exposure system didn’t appeal to her. It appealed to me. Red for too dark, orange for almost, green for go. Good old Pentax ME.

Later on, I did find working in photography took the joy out of it for me. Probably like the plumber whose house needs taps fixing, or the cleaner with a dirty house, or the builder with a broken door. When we were married, Mary had to give me a nudge to take photos of our children. Taking hundreds of photos of other children took the novelty away.

Oh how I wish digital had been around when I ran my photography business in the early 1980’s. I had to pay all of the up front costs of film and processing, hoping to sell enough packs of photos to make money when I did a photo shoot in a store. Portraits, weddings in fact everything I did would have been simpler and cheaper if I could have shown the results instantly to clients and just processed what they liked. Plus of course with digital you can take unlimited numbers of photos, instead of the 12-15 in medium format or 36 in 35mm per roll of film. Then with digital, you just print the ones that work, oh the joy. Mind you I now have tens of thousands of family photos on my PC when I used to just have hundreds of negatives. So there are limitations, digital makes us lazy. With film you shoot sparingly. Plus of course now everyone has a camera so I guess professionals find it harder to sell any photos. Most people just can’t ‘see’ the quality difference.

Fast forward to me now. Photography in a wheelchair. It’s a challenge, have you thought about angles and heights from a wheelchair. When I used to take photos I would, crouch, kneel even lie on the ground to get the angle I wanted. It did surprise me no one called the police or an ambulance when I lay on a path at night in the 1970’s taking time delay photos of passing cars. Back to now. At the very least I would want to be able to use a tripod and take higher angles. In a wheelchair, especially one without a riser, everything is one height. At least within a few inches. You can use a selfie stick to increase angles and heights a bit, but they are not ideal. The last one I used broke, fortunately just after removing my phone. I also find now that I just don’t have the physical and mental energy for photography, both taking and editing. If I take photos at all these days it tends to be on my phone. Mary takes most of our photos now and there are a lot unedited. You are probably thinking, ‘edited, What is he on about?’ If you just take photos and use them, that’s great. I have the curse of a professional past. It’s hard for me to look at a photo without seeing tonal, colour or cropping issues. That’s just the basics, if I really look, I can tweak a photo for ages.

Much as I enjoy the convenience of PC photo software, I miss a darkroom. There is something about the direct connection of chemicals, an enlarger and handling the negative and prints yourself that you lose with digital. Yes it’s messy and time consuming and takes skill and trial and error, but there’s nothing quite like it.

I find it very interesting that with the higher and higher definition photos and video we can now get, the latest style is low quality, scratched, black and white and out of focus. I guess we kick back and long for an earlier simpler time. Even current movies wash out the colour and deliberately shoot into the lights to get flare, they use hand held and out of focus shots. Still it’s helpful with clothing, I don’t need to buy new ones when my trousers get torn, just claim it’s a fashion statement. Torn joggers are the same as jeans aren’t they?

I wonder if we will reach a time when disability will be the desirable norm. People have become too perfect so they will want to be limited and broken. Just musing, not being serious. Although it’s not that far fetched, glasses for fashion rather than need are a real thing.

On a related topic. No it’s quite distant, but my mind jumps. I often hear people say they wish they could have a Blue Badge. I guess my answer would be, “wouldn’t it be great to have any plus without it’s associated negative.” A Blue Badge is a necessary thing for many people who struggle to walk far. Not all problems are visible, they may not be in a wheelchair, they could have heart or lung problems. I do object to able bodied family using the Blue Badge of their disabled family member. If you are thinking you fancy a Blue Badge, remember they come as a result of limitations, not as a prize.

Back to photography, (you knew I would get back to it J-B, didn’t you). The other weekend we were taking a group shot of Mary and I with a couple of our family who were visiting. Thinking the Quaker garden would be an ideal backdrop we headed there. But we forgot to take a tripod. Mary tried balancing the camera on a bench arm, a bin lid, a bench arm and brick, bin lid and brick then eventually the bin lid with a brick on its end. We all stood with an arbor behind us. An arbor that was home to a wasps nest as we discovered. Not the ideal location to stand still.

Self timers don’t go well with swatting wasps. Neither do smiles come naturally when you are avoiding being stung. At first I tried to operate the self timer, but discovered that the 10 seconds timer was insufficient for me to wheel back to the group and line up. So our son pressed the button. In the end we did get photos. Even some where we were all smiling.

Photography is great fun, I do still enjoy taking the odd photo and it is possible to take good ones, even in a wheelchair. I try to do things I used to get pleasure from, wherever I can. There are new limitations, but some can be overcome. In case I have waffled too much, very unlike me. Let me summarise.

1/ use a selfie stick to increase the angle you can take photos from in a wheelchair.

2/ take lots of photos, you can just use the best

3/ use a self timer, if necessary get someone else to start it

4/ have fun.

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Flying round the world in my bed

When I was a child, I used to gather all the neighbour’s kids and we would sit on my bed and imagine we were flying to far off lands. Imagination was always my strong suit. I was inspired by ‘Bedknobs and broomsticks’, a Disney film we saw that year. If you’ve not seen it, I probably wouldn’t bother. I would get all the younger children so convinced that we were flying, they could almost see the ground pass beneath them.

I have found imagination very useful in illness. When you spend a lot of time in bed, being able to travel in your mind is a useful skill. There is a technology that makes things even easier. Computers, they have become able to produce such realistic imagery that you can feel you are travelling without leaving your house, or in my case, bed.

I have a flight simulator and the joy of it is that many of the planes have auto pilot, and even when they don’t, I can fly them very simply. I have flown a real plane, back in the early 1980’s, but don’t expect me to fly you to New York, I only had a few lessons in a Cessna. With PC simulations I leave them set on easy and just drift along looking around at the scenery. Mind you the other day I was so intent on looking at the scenery that I crashed a Boeing 747-400 in London. You probably read about it in the news, or you would have if it was real. Flight simulators are great fun when you are limited in bed, flying anywhere in the world, slow in a hang glider, or high and fast in a jet, there is nothing quite like it when you are unable to even walk. I am so looking forward to Microsofts new flight simulator due out in 2020 it’s so realistic, it almost looks like a real plane, that’s if the demos are anything to go by. The current Microsoft simulator, FSX is no where near as good, you do need a good imagination to believe you are flying in that. There are people who buy complete artificial cockpits, controls, multiple screens and realistic seats. They go on imaginary flights all the time, although I guess they come down to earth when they look at their bank statements.

Modern PC car simulations are much more realistic. The problem is they are much more tiring to operate. I can’t use a steering wheel as they all seem to come with pedals and the alternative, which is hand controllers, are a bit twitchy and take a lot of concentration. But a quick crash around Scotland, on Forza, driving into other cars and people’s front gardens is great fun. The realism is amazing on a powerful PC. Trees, grass, shadows, water, dust, flowers, reflections on cars and sun glinting. You could believe it was real. That is apart from the fact you can crash into anything and not get hurt. It’s especially fun as in my case I can’t drive any longer in the real world.

Why am I talking about simulators? Because I believe they are a great idea for anyone who is as limited as I am. If you spend a lot of your day in bed, as I do, it’s a thing to do that is not too tiring and yet not totally inactive. Many things I do just involve watching TV or are too tiring, like puzzles or reading. Even writing this blog wears me out. As I mentioned earlier flight simulators can be really easy to fly, no effort. My favourite thing to do is choose a mission where the plane starts out flying above interesting scenery and then leave it in autopilot. There’s an option in FSX to view outside from the wing, above, side or behind, as well as in the cockpit. Plus, you can move the point of view within that. You can also skip to other planes nearby. The most realistic part of FSX is the sky, flying through the clouds is brilliant. When you are many thousands of feet above the earth the scenery below looks more realistic too. It’s a very freeing feeling.

I am fortunate because I can take myself on a similar trip in my head when I can’t use a PC. I do so often when in a “collapse”, the times when I lose muscle function for about 10-15 minutes at a time.

I would recommend a simulator on your PC if it can run one, for anyone in my situation. If you only have a tablet, like an iPad there are basic flight sims available for those. I realise that escape into your imagination doesn’t solve underlying problems. But it can give you a break and that is helpful. Often, it’s what you need most.

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Laugh and the world laughs with you

“I have just had my third breakfast, so I should be OK till lunch at 1:30pm.” I was talking to a supervisor from our care agency, she was there to ‘sign off’ my new carer on using my hoist. I explained to her that I have three breakfasts on Friday mornings, one extra to my usual Winnie the Pooh style, two breakfasts, because of the late care visit. What do you mean, you don’t even have one breakfast? That’s not my fault. I eat a little and often, it’s how I maintain my svelte figure. That is if svelte means slightly overweight, which I’m sure it does. Don’t look it up if you don’t already know it’s meaning.

I like Winnie the Pooh, he may be full of fluff, but I think I am too, at least I must be judging by how much is in my belly button every day. I like his comments, my favourite being when Rabbit built a really high, but short wall as a defence against heffalumps and Winnie the Pooh said “But they could just go around it.” And Rabbit says, “Around it, around it, no one gave me the specifications.” AA Milne was no doubt thinking of the Maginot Line, the WWII French defence against Germany that they went around. There are books on Winnie the Pooh wisdom, I wouldn’t go that far, I just find them fun with some bits of insight.

Winnie the Pooh does have a lot of good habits, he’s a relaxed and laid-back bear, doesn’t worry too much about how he looks. Sticks his head in honey pots. OK, so not all his habits are good. He also chats to his slightly depressed friend Eeyore, rather than ignoring him. He gets flattened by his bouncy friend Tigger too. Oops another problem. Insecurity doesn’t bother him, look at his friend Piglet. But best of all he has two breakfasts. First breakfast and second breakfast, brunchfast a meal between breakfast and lunch. I just improve on it with a third breakfast on Fridays.

For some reason the idea of this amused the care supervisor and she decided that being part of my care team would be fun. I do seem to amuse people who visit me, often I amuse them unintentionally, but it is fun being part of my care team we have a lot of laughs. My carers are chosen because they are good company as well as good carers. It’s a prerequisite when I chose a carer, they need a sense of humour, who else would put up with me. I’ve said before that humour is the way to cope with embarrassing situations and I would recommend that method to anyone struggling at receiving care.

I am going to get practical here. If you are about to receive care or newly receiving it there is a big obstacle most of us must overcome: Being naked in front of strangers, or even those we know, maybe especially those we know. Some will find this more of an issue than others. Some will find it more difficult with the same sex than the opposite sex. We are all different. But most of us find the idea of having someone undress us, non sexually, embarrassing. (I suppose some people might find getting undressed for sex embarrassing, but that’s not what I am looking at here.) Then the concept of someone washing us as an adult is so alien to us that we struggle with it anyway. If you manage to cope with that but need someone to wipe your bum or generally sort out your toileting needs, then things get really difficult. So how do we cope with all that?

My suggested coping method is laughter, fun, and humour, that is what I have found helps. If you laugh and joke it will break the ice and overcome your difficulties. Laughter and humour are very powerful tools, don’t dismiss them. They enable us to cope with situations that we think are beyond us. When we laugh or smile our body releases chemicals that help us relax. It also releases tension in you and any in the air. I am not saying laugh and all embarrassment goes, it still takes time to get used to coping with being cared for. But believe me, if you are laughing and joking with your carer you will not notice the embarrassment as much. I should also point out that the professional approach of carers really helps. I think if they were unsure and unprofessional it would be much more difficult. For me the thing that has taken longest to get used to is toileting. Laugh and the world laughs with you, even when they’re wiping your bum; did I quote that right? But even that is easier to cope with if you don’t treat it too seriously.

On a related topic, being cared for makes you feel like a child or a baby at times. Sometimes I will make a joke out of that. It’s a way of coping with that idea and not letting it niggle away at me.

I will end by encouraging you. If you are newly receiving care, it becomes easier over time, especially if you take it less seriously. If you are about to receive care, try out some or all of my suggestions. If you are a carer, paid or unpaid, thank you for all you do, we appreciate your care and support. If you are reading this out of interest, I hope it has been insightful.

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A room with a view

What a picture, what a photograph. No I shan’t finish the song. As I lie in bed about 90% of my time, shocking I know, then the view from my window is fairly well known to me. It would be better known if I spent more time looking out of it and less time looking at my iPad or PC and sometimes the TV. When I do look out I see a beautiful courtyard garden, created by Mary and filled with flowers.

Spring in our garden

I had a thought the other day. How is it that in just a few weeks, mud, water, heat and light transforms into a mass of greenery and flowers. Not just thin or low growing flowers, but thick stems and large leaves and flowers. Think about it, the change is really incredible. I watch that garden over the weeks and occasionally get to go into it in my wheelchair. Last I went into it, the part by our washing line was so full of plants that I think only a single sock would fit on the line. OK, maybe that’s an exaggeration, but the area had gone from an empty open space to encroached by raspberry bushes, lilies and sweet peas. All sides overhanging towards the middle. How is that possible in just a few weeks. What an amazing creation we live in, such variety, such complexity, such beauty and it all happens so quickly before our eyes.

The lilies that burst out next to our washing line

A few weeks back a very kind man on Facebook built me a bird table. I now get the added joy of watching birds pop by for brunch, or afternoon tea on the wing. It’s sort of a fly through, but without the intercom or payment window. I think I prefer a cheeseburger myself, but the birds seem to enjoy the mealworms. Mealworms, the name sounds like it should be tasty, but they don’t look it. The other day a pigeon tried to raid the bird table. I have nothing against pigeons, nothing for them either. Fortunately it couldn’t get into the table, try as it might. Whereas blackbirds, that I do like, can come and go at will. Mind you, one family of blackbirds have made a nest in my garage and I am not sure that I appreciate them pooping on the garage contents.

Bird table

What I enjoy most is stormy weather. When the rain hammers down and the wind blows, there is something dramatic about it. Yes, I know, you are out and about in it getting cold and wet, I’m sorry. Actually I used to really enjoy walking in the rain and wind and working in stormy weather. I think it’s because my day job was in an office. Getting out in nature, even raw nature was a treat. Even now I enjoy going out in my wheelchair on a stormy day. I really enjoyed looking out at the snow earlier this year and last. My wheelchair can’t travel in snow, but I can enjoy looking at it. Whereas rain and wind are not an obstacle.

The problem with wheelchairs on a stormy day, especially electric ones, is protection. I have tried so many waterproof covers. None are big enough to cover me and the chair. Not even ones designed for scooters. Because scooters are shaped differently to power wheelchairs. In the end the only way I could protect both was with a two layer approach. I have leggings that I sit into. Like child pushchair leggings (see my blog “Kids stuff.”) that protects me to waist height, sort of. Then I have what is described as a full wheelchair cover. This reaches to my lap. I have a Trabasac tray that latches onto my chair. I hook the top cover under that and that keeps my top half and most of the chair dry. But, the sides of the chair still get wet, especially my side pannier bags, they are waterproof fortunately. Plus water can collect in my rubber arm rests as they are cupped. Also the rear of my chair is only covered part way down. It’s a partial answer and looks more effective than it actually is. Normally when I get out of the chair there is a puddle of water by my feet, wet panniers and water in the armrests. I also find bits of me are wet.

Me covered as much as I can be

Back to my wonderful view. My bed is electric and profiling. That means it goes up and down and can shape, legs and head can raise and lower. So I can sit up and change my height. This gives me a range of views out of my window. At a higher setting I can see the path outside the patio door at the end of my bed. This door is too narrow and inaccessible for me to use in my wheelchair, but it is good for a view. When I was first in this bed I used to be dazzled by the sun. It comes straight in every morning. So a friend fitted a blind for me, now I ask my wife or carer to adjust it so that I can see the garden but don’t get dazzled. It’s a shame to shut out the sun, but helpful to keep your eyesight.

The good thing about our view is that it’s one way, most of the time. We have a private garden with a normally locked gate. So when my Carers get me washed and dressed I always used to get them to leave the curtains and blinds open. Until that one time the gate was left open for two days and we had three delivery men all of whom decided to try our back door, just as I was naked on the bed. It’s Murphy’s law that whenever you are on the toilet, in the bath or undressed that’s when a delivery arrives. Well at least you aren’t lying in front of the window with the delivery guy peering through it knocking.

The other view I have from my bed is a TV on a wall bracket. It doubles as a PC monitor. In case you are wondering why I would have a PC rather than a laptop, it’s because of weight. A laptop is heavy on my lap. The wireless keyboard and mouse I need for a PC aren’t, everything else is on the side. If you are bed bound and like computers, I recommend a PC with wireless keyboard and mouse. Unless you don’t find weight on your lap a problem. If you copy my idea, just use your LCD TV as a monitor, most have more than one HDMI input. You just swap between them to use your PC. Oh, I’m getting like a computer helpline here.

I am going to have a quick aside here, I used to work on a computer helpline part time. One person phoned me up and I gave them the advice you will always get with computers “just shut your PC down, wait ten seconds and start it again.” They said they had shut it down, waited ten seconds and started it, then instantly said everything was back on. The desktop was showing and everything had restarted. This was before SSD hard drives that can be almost instant to restart. I was puzzled for a moment then I realised what they had done and I said “did you switch off the button on your screen, then turn it back on?” They had, so we started again, this time I was more detailed in my instructions.

I find that using my iPad quite a lot, to watch films or write this blog, my vision gets closed in. So it’s helpful to look out through the patio door to the outside. My room with a view really comes into its own. I can enjoy what I see all year round.

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The long goodbye

(No it’s not about death, nor is it a fictional thriller)

Carers are more than friends, but not quite family, they are professional and yet close, carers are in a group of their own. Because of this it’s very difficult when it comes time to change carers. This happens for several reasons. They may leave the agency you use; they may move, you could move or sometimes events conspire to make it impossible to continue with a carer.

Last birthday, with 3 of my carers (blurred for anonymity)

Over the years we’ve had that happen more than once. One carer became just focused on me and lost sight of the fact that she was there to support us as a couple (if a carer doesn’t support Mary they are missing a vital part of the job), yet another was only employed temporarily to cover for a carer who was long term ill, some are holiday cover, while others have moved jobs or become ill, or leave to have children, whatever the reason we have to say goodbye to a carer it is never easy. As I come up to my birthday, only one of my current carers was with me last year. Many times, we have kept in touch, although that isn’t always possible.

There is a kind of bereavement losing a carer. You become so close, even to ones that you know for a short time. I guess it’s the level of intimacy both physically and mentally that is involved in care. I blogged about this before, “Care, a strange relationship.” When you no longer see a carer regularly it’s like losing someone very close. An aside here, I keep saying ‘a carer’ which makes them seem very impersonal. That’s because I want to keep confidentiality. I would rather use their names, but that would be inappropriate. So just replace ‘a carer’ with a name of a really close friend or family member when you read that.

I really hate it when we must change carers. Being a person who dislikes change doesn’t help. But the fact I am a people person makes it very difficult. I invest time and energy in getting to know my carers. Energy is a valuable commodity for me. More valuable than money, I have very little of it. So little that it’s one of the reasons I have carers in the first place. Not only am I physically limited, unable to stand or walk. But I also have very little energy reserves. So, I must budget it for the day. If I used my energy getting washed and dressed, I wouldn’t have energy to enjoy the day. By enjoy, I don’t mean much more than be bright enough to laugh, joke and chat, watch TV, eat my food and write this blog. All these things take a colossal amount of energy.

If you have ever had a serious illness, very serious, not a cold, you will know that the smallest thing can be exhausting. My carers don’t just help me because of my physical limitations, although obviously I need that, they help me reserve my energy. So, when I then chose to expend some of that energy on getting to know them, that is an expensive choice on my part. I have allocated a part of my daily budget of energy on them. That’s a mark of how I value them, I make that choice. I enjoy their company.

When I lose a carer, I feel like I lose a big part of what makes my day and a part of what I look forward to, it’s like I lose part of me. Each carer I have is unique and has qualities that make them special. I wrote a blog all about my wife “The most amazing carer of all.” Because I recognise that Mary is my main and best carer. But my other carers are also really incredible, they have got Mary and I through difficult times. They have put themselves out, above and beyond their jobs. It is their cheeriness, strength, aid, comfort, help, encouragement, smiles, warmth, friendliness and wonderful nature’s that get us through. I know most of my carers past and present read this, that’s not why I have been positive, it’s because it’s true. Many of my carers have been kind enough to say they enjoy being with Mary and me. The reverse is true in spades. They really are the most incredible people and I value them so much.

If you are reading this and looking at going into care as a profession, know the difference you will make. You won’t always get to look after people who have mental capacity. Not everyone you look after will show appreciation. Some people can be downright rude. But often that comes from a place of pain. You will still be transforming their lives. They may not be able or choose to say it, but you will be a great blessing. Just as our carers are to us.

Every time I lose a carer it’s like a long goodbye. Painful, slow, drawn out. I want to avoid it, but I can’t. I just have to look back at the good memories of wonderful times spent with them and if we keep in touch, look forward to meeting up in the future.

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A walk in the dark

Have you ever been wheeled along with your eyes closed? Perhaps on a hospital trip, or have a childhood memory of this happening? Maybe you’re a wheelchair user and you’ve been pushed along with your eyes closed, so you will fully understand what I am about to say. For those who haven’t, prepare to exercise your imagination muscles.

I have occasional ‘collapses’ which I’ve written a lot about elsewhere, so I will just say, I stay conscious but lose the ability to move or open my eyes. If I get one while Mary or a carer is operating my wheelchair it is a very strange experience. Being powered along or even stationary when somewhere new in the dark is odd. Even familiar places become voids of darkness that my other senses reach out into, trying to explore.

As a writer I have a very good imagination. I can build up pictures in my mind with full colour, smell and even feel. But I find that what is lacking is scale, a sense of how big somewhere is. Roads seem shorter, rooms smaller, everything is compressed. In the words of estate agents, bijou. This is what I find most when being wheeled with my eyes closed. My mind fills in the colour and shapes around me, based on what I hear, smell and Mary’s description. But everything is much smaller than reality. How do I know? Because I come around from collapses when I am on route or arrived somewhere, I am always surprised by the real size of the place.

Today we headed to the Cleve Spa, there’s a surprise. Just as we were heading up the High Street, I had a ‘collapse’, they have become less often on my new medication, so this took me by surprise. The first thing I noticed as it’s been a few weeks since I have been travelling up the High Street in a collapse, was the noise and hubbub. Your senses become much more attuned to sound, smell and vibration when you can’t see. The cars seemed noisier and smellier, the people louder, no not smellier, the path bumper. I found myself trying to work out where we were. I failed, because just as I thought we were passing Boots, Mary said “OK I am just turning you to face the traffic lights.” Not far out I suppose, but a miss non the less. One of my carers was crossing the other way with her daughter. So, she got a welcome from Mary and a hello at I hope the right point from me. Although judging by how far away she sounded as she said hello back, I guess we met part way across the road.

The traffic light crossing at Wellington (Photo from Google Earth)

The next thing to negotiate and to confuse me, not a tricky job, was Greggs. No, I wasn’t confused by the cakes. We often pick up a snack there for tea. Apparently, there were several people, a dog and a mobility buggy outside the shop, but Mary got us inside so quickly I was amazed at how she achieved it. I am sure she either beamed us through or jumped over them. Maybe they just melted away because I didn’t hear any bumps or bruises, nor did I feel us jump. I know Greggs from when I am alert, so I was picturing the tight space as Mary negotiated the route inside. Mary told me there were a few people ahead of us. Not wanting to leave me outside unattended, after all you hear of baby snatchers, there are probably the equivalent who would take me away, I am very cute and cuddly. Seriously she needed to keep an eye on me, so I didn’t get up to mischief. We both queued, Mary is a wheelchair genius at manoeuvring. Then after we were served, snack in hand, Mary’s not mine, we left and continued en route to the Spa.

Greggs on Wellington High St (Photo Google Earth)

I concentrated on where we were next. Normally I can tell by the smell, which shop we are near, meat as we pass Tim Potters, the butcher etc. Once Mary said to me, as a way to pass the time as we walked while I was in a ‘collapse’, “what can you smell?” Expecting me to smell the flowers we were passing. I said, “creosote, dog mess, and petrol fumes.” Not the answer she expected. But this day my senses must have been on mute because the next I knew we were on the wheelchair tipping part of our route near the hairdressers Black Sheep. It’s very narrow and the camber is awful for wheelchairs. I became so aware that distance has no meaning in the blackness. There is also a kind of comfort that comes from being in the dark. You remember as a child when you shut your eyes to make bad thing go away? You feel safe even when you are in danger. That’s what it’s like for me at these times. When we are crossing a road or on uneven cambers, I don’t feel fear. Which brings me to the road we had to cross next.

Narrow path & uneven camber, not obvious in photo (Photo Google Earth)

To get to the Spa on foot in a wheelchair you must cross the road by Courtfields School and The Young Peoples Centre, right by the BP garage. Somerset roads dept have fiendishly put a slightly higher curb on the dropped pavement either side of the road here and a left a deep furrow in the middle of the road. This is a fast bit of the road and we really need to cross it fast. Mary can only see left after she starts to cross, due to parked cars. Add to this the fact cars are often leaving the garage, the school and the youth centre, oh yes and the Spa and any gaps in traffic on the main road get used fast. We need a big gap to cross and hope it is clear left. But we must be slow to enter the road because of the curb, then in the middle because of the furrow and at the other curb. With my eyes closed I know all this and yet I feel safe. It’s much scarier with your eyes open.  Maybe I should close my eyes every time. Maybe I should have closed my eyes every time I got into scary situations when I used to drive. Don’t worry I am joking.

The ‘collapses’ generally last 10-15 minutes and with this one I came around as we climbed the steep hill to the Spa. Another interesting walk in the dark. As usual it took me a while to get my bearings mentally. I must replace the mental image I have created with the reality I then see. Add to that the slightly strange effect the ‘collapses’ have on my brain anyway and it takes a while to fully focus.

I don’t begin to comprehend what it must be like to be blind. After all, I am only losing vision for minutes and even then, I am being wheeled around. So, I don’t have the added difficulty of trying to feel my way around. The only insight I gain into blindness is the increase in other senses and the disconnect between the mental image I create and reality. What it does do for me is to help me realise that when an able bodied person tries to gain an insight into disability by using a wheelchair or hoist, they can only get the merest glimpse, just as I do in these times of being unable to see. It’s a helpful glimpse and I strongly encourage it, but it must be recognised as only a glimpse.

I hope you’ve had a chance to exercise your imagination or been reminded of previous times. Darkness is something that can be comforting as well as holding an element of fear. It all depends on perspective and the situation.

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Mistakes, I’ve made a few

“I was wrong.” As Mary said this, I tried not to look surprised, but I was. It’s not something she says very often, annoyingly because she isn’t often wrong.

I, on the other hand make mistakes as a hobby. Mistake is a word that definitely features in my dictionary, it comes right after spelling and just before grammar.

When we make mistakes, it’s tempting to hide the fact. I remember as a child we had a large glass coffee table. It was great for playing card games on, you dropped something and as you picked it up you could glance under the table at your brothers and sisters’ cards. Oh no, now they’ll know I cheated. What you couldn’t drop on it, we discovered, was anything heavy.

The sound of breaking glass is not a sound I enjoy. It brought back memories of when I was even younger, and I slammed a glass door in my sisters’ face when she was chasing after me. Why do children run with their arms outstretched? The scars on her arms are still there as a reminder of that unfortunate episode. The breaking coffee table was a scar waiting to happen. All of us children froze, this was the era when parents punished you for being naughty. Unlike today when you might get put in the naughty corner. We were not looking forward to dad coming home and seeing his expensive coffee table in pieces. At least mum was due home first. I will leave to your imagination his response. If you were born in the 1960’s you will understand.

School was always a place where I exercised my mistake muscle most. Primary school in particular was a training ground for error making. We had ink pots when I went to school. No, not quills, plastic pens to dip in them.

Not like this
Like this

I went to school in Buckinghamshire, they didn’t believe in new-fangled things like biros, Mary’s school had those, her birth county was far ahead of mine. The fun thing about ink pots is that they have actual ink in them. One day a friend showed me an amazing trick. He turned the ink pot over in one swift movement without spilling any ink. I was so impressed, I decided to copy him. No, I have no idea what was happening in the class, I’m sure there was a lesson going on, the teacher was probably talking, you can’t expect me to remember everything when there are ink pots waiting to be turned over. I swiftly turned the pot over, but my hand couldn’t turn all the way 360 degrees, so the ink poured onto my desk. Why the teacher chose that moment to stop talking and look at me I don’t know. I do know that we still had the cane in our school, and I was very familiar with it. My bottom said hello to it again that day. Maybe that’s why I have such a soft bottom today, it’s like tenderising meat, it got pounded so much as a child. I later found out what I had done wrong with the ink pot trick. In order to turn the ink pot 360 degrees, you must start with your hand upside down, strained slightly ready to spring (see photo).

Correct starting point for ink pot trick
This is how I started the trick

Never let it be said I don’t learn fast. There was no way I wanted to be caned again, I was feeling sorry for the headmasters’ arm. So, I was very good for a long time after that. It was not my fault what happened next, I know you’ve heard that before, but hear me out, I was innocent. We had a swimming pool at our school and in summer term it was open immediately after school for pupils to use. It was only small and positioned six feet outside the staff room so the staff could keep an ear out for problems with us kids, this was a 1970’s safety feature instead of lifeguards and for extra safety they put a hedge all around the pool, including between the staff room and pool. This was the days before health and safety went mad, you know the days when the odd child dying or getting injured was not seen as such a problem. Those halcyon days often mentioned with rose tinted glasses on social media when we used to do dangerous things and get hurt or killed. The days many want to return to, but those who were injured are happy have passed. I know we had fun; I’m just adding some balance.

This is to give an idea of the pool
The actual pool had a hedge around it rather than a fence.

Back to the swimming pool. One afternoon my mates and I were playing in the pool and I had a great idea for a game. Lifeguard and drowning children. What child doesn’t like drama. Every child in the pool was up for the game. I arranged two groups. One smaller group of lifeguards and everyone else to be in the pool screaming out that they were drowning. It was a warm summer afternoon; the staff room windows were open just 6 feet away over the hedge. You probably know where this is going.

As my mates started screaming “help, I’m drowning!” and the pretend lifeguards were shouting “you save that one, I’ll get the other.” Teachers started to run out of the staff room. I don’t think I had seen them move so fast. Fat teachers, thin teachers, large teachers, small teachers, the gym teacher, and the headmaster, they all came running red faced and panicked. As they rounded the hedge, they desperately looked around for the children to rescue. Instead they saw lots of surprised and happy children.

Isn’t it amazing how you can go from being really popular and looked up to by your mates, to the scapegoat? When the teachers had finally caught their breath and calmed down, they looked to apportion blame. Isn’t that always the way? Every finger of every child pointed at me. My bottom got another hammering. Oh well, more tenderising.

Do you find when you make mistakes you want to hide? Pretend it wasn’t you, or just gloss over it. In this day and age, we tend to act as if there are no such things as mistakes. Everything is just relative, shades of grey. There seems to be no right or wrong anymore. Yet we all know that’s not true. Perhaps all that’s happened is we’ve lost the courage of our convictions. It’s no surprise when we end up being led by liars and cheats if we refuse to draw a line in the sand and say, ‘lies are not acceptable’. If truth becomes a flexible commodity to be strained and tested by social media is it any wonder, we don’t recognise truth anymore. The idea of absolute truth has been refuted and abused. So, what are we left with?

I made and still make mistakes. The reason I know that is that I recognise there is such a thing as right and wrong. There is good and evil in this world. People do both. There is a God who loves us and unlike the headmaster, who caned me when I made mistakes, God loves me in spite of my mistakes. You see when I drop ink all over the desk of my life, God doesn’t shout at me or cane me. When I smash the glass table of my life, God isn’t cross with me. When I do stupid thoughtless things, that seem like fun to me, but are problems to others God doesn’t call me to his office in the sky and look sternly at me, preparing a metaphorical cane. No, God accepts me, mistakes, failings, stupidity and all. Then rather than leave me in a mess, he helps me change.

I can look back at laugh at my mistakes because I have a God who loves me. I can look at the grey uncertain world around me and know that whatever lies abound, there is absolute truth. Jesus said “I am the way, the truth and the life. No one can come to the Father (God) except through me.” People often say, ‘how can you be so upbeat and joyful in your situation?’ This is how. It’s because despite all my mistakes and faults, God loves me.

I will end where I began, Mary doesn’t make many mistakes. She made one big right choice when she chose to follow Jesus many years ago. She made another great choice when she took me to Church in 1981 and I began to follow Jesus. Don’t dismiss my faith as being OK for me but no good for you. No matter what mess your life is in, God loves you. No matter how much trouble you are in, God loves you. He is there to be found. There is a great free course that gives an opportunity to explore about Christianity with no strings. It runs all over the world, it’s called Alpha. Check out a local one at

If you want to know more, check out a local Alpha course

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Music, barking dogs and dancing lizards

Where else could you see someone dancing with a lizard? It’s not something I’ve ever seen before and I watch Britain’s Got Talent every year. I should point out, in case you are picturing a lizard doing a two-step on its hind legs, that the lizard is held in the man’s arms. In reality that’s no different to holding a child and dancing. It just isn’t something you see every day.

Wellington is a brilliant place, one of the best places we have lived. Lovely people, excellent facilities and lots of activities. All wrapped up in a small package. They say, ‘Good things come in small packages.’ We live just off the High Street and you could not be nearer to the shops, dentist, doctor, optician, park and restaurants. This blog is about the park, which is not far from us and very accessible. Lovely smooth wide paths. The only bit I can’t access is the bridge and waterfall.

Every Sunday afternoon during June, July and August from 2:30 till 4:30pm the Friends of Wellington Park (FOWP) lay on a musical extravaganza. OK so maybe I am using hyperbole there, but it is fun. Not every week will suit every person, there’s a programme to tell you what’s on. I’m not sure that a man on an organ is quite my thing. But jazz, country and western, brass bands, rock and roll, and pop are. I am fairly eclectic, actually my spell checker nearly made me eccentric and maybe that’s nearer the truth. But I do like variety, some would just say I get bored easily.

One Sunday afternoon, we joined a brave group of folks to shelter from the weather and listen to some Country and Western. The shelters, of which there are quite a few, were very full. We couldn’t even squash into the tent designated for wheelchairs and scooters. Although I should point out we arrived late, as it took extra time to get me ready after lunch. So, we hid under the trees behind the disabled tent and under a brolly and waterproof covers. A lovely lady from the FOWP, who always seems to spot us and help, directed us to a gap in another tent. I squeezed into the edge and Mary sat behind me. As usual Mary spent time moving things around to make space for my wheelchair, before she could sit down. We still needed some waterproofing for the rain that blew in and we didn’t really enjoy being behind each other rather than beside each other. But at least we had some protection from the rain as it decided to really pour down. Have you noticed how in England we have so many ways of describing rain? Pouring, dripping, damping, drizzle, hammering, misting, torrential etc. Anyone would think it rains a lot here.

It was a little damp

Our son in law is from Utah, where it’s so dry that if you leave biscuits or cereal out, they get dryer. Whenever he visits us it seems to rain. He just seems to miss all our long hot dry spells. Yes, those long hot dry spells that you’re just forgetting about because of all the recent rain. One time when he was here, we explained that leaving biscuits out of the box here overnight would make them soggy. Finding that concept hard to grasp after Utah, we suggested he try it. He was amazed how soggy a biscuit becomes here overnight when left out. Perhaps we should return to a rather wet park in Wellington.

The music was great, toe tapping (in my head) fun, punctuated by the occasional bark from a couple of dogs that a family nearby had brought to enjoy the music. I’m not sure the music was improved by the punctuation and the barks were very sharp and sudden. There was also the odd drift of cigarette smoke from just outside the tent. I am sure that the person smoking was trying their best not to inconvenience anyone, but smoke has a way of going where it will. Smoke is not ideal for my chest. FOWP have setup a smoking tent at quite some distance from the other tents, but I think these smokers were probably with their family and thought being outside the tent was enough, it wasn’t.

It must seem like the worlds against you as a smoker, ostracized, frowned upon, pushed away. I was a smoker many years ago, so I have some sympathy. The problem is with the nature of smoking, its too extensive in its generous spread of smoke. When one person smokes everyone around joins in with their experience. It’s like music, except the thing being shared abroad is carcinogenic, smelly and unhealthy. If the smoke was just going down the smoker’s lungs, then that’s their free choice and they have a right to make it. But they don’t have a right to make that choice for everyone else. The worst part is that everyone else only gets the unfiltered smoke. Anyway, rant over, you can see I object to being forced to breath smoke, especially as it is bad for my chest.

At last the rain let up and the sun came out. Mary and I moved to a more spacious and smoke free spot. I was able to recline my wheelchair more fully and we had a good view of the area in front of the bandstand. This area is often used for dancing. Line dancing on country and Western music events, other types of dancing at other times. Well let’s be honest, line dancing gets a look in at almost every style of music.

The sun came out and we moved

One time I was brought to the music in the park by one of my carers when Mary was on a respite break. I jokingly said she ought to join the line dancing. It was only afterwards that I realised how lucky I was to have a carer who wouldn’t turn the tables on me and take my wheelchair onto the dance floor. I feel embarrassed enough being in a wheelchair without using it to dance. That is spin the chair around on the dance floor. I never danced when I could walk. Correction, none of my efforts could be classified as dancing when I could walk. I particularly came to realise what a near miss I had when I saw another wheelchair on the dance area, spinning around, going up and down and having a great time. They were really enjoying themselves. I would have just been mortified. I am very shy, no matter how it may appear otherwise. If you meet me in person and more and more people are, you will see for yourself.

It was in the dance area that we watched the dancing lizard. You knew that I would get there eventually. One of my blog readers tells me that however much I digress, I always seem to get back to the point where I started. Of course, most Wellingtonians will not be in the least surprised reading about dancing lizards. The lizard owner is probably your neighbour, friend, family, work colleague or dance partner. You may be the man himself thinking ‘why is Mike writing about me?’ But anyone reading this from elsewhere may have a moment’s pause and think, ‘A dancing lizard?’. I remember the first time I saw the man dancing with his lizard I thought ‘fair enough, a dancing gecko, why not?’ Then I looked up gecko on Google and realised it wasn’t a gecko. But it is some kind of lizard. I may have also fleetingly thought, ‘why is he dancing with a lizard?’ The lizard always looks very happy and cosy, snuggled against his chest. I haven’t seen the lizard move in time to the music, but maybe it does, perhaps it does the odd head dive at appropriate moments and I just miss it.

I have blogged before about the refreshments at the music in the park. How many places do you know where the price on the ice cream are lower than you pay, unless the shop makes a big song and dance about it being a sale, or special offer. In the park their price is 70p for an ice cream that says 75p on it! Nothing about special offers or sales, that’s just the price. Don’t get me started on the massive pack of mini Cheddars for 50p, it’s a steal. I’ve just thought, I hope no one from Friends of Wellington Park is reading this, or next time the price will go up. Hey guys from FOWP, it’s really expensive your food and drink, I think you should leave it at that price. Phew! I think I got away with it this time.

I think everywhere we have lived has had its fair share of special places, people and activities. But Wellington really does stand tall in comparison. Despite the occasional inconvenience, this town is brilliant. The park really makes it for me, and the summer entertainment is a massive highlight that we look forward to each year.

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A Shocking Trip

Lying on the bed in an anti-room of the neurosciences ward, I’d felt some trepidation. Electricity and I have never been great friends. You might say we were no longer on speaking terms, ever since 1989 when 415 volts 13 amps of electricity tried to kill me. OK, maybe it was my foolish oversight, but being electrocuted and burnt by a washing machines mains capacitor was quite enough to put me off electricity for life (See my blog “Ambulance Transport” for the details). I had therefore not been very happy when in 2007 a neurologist referred me for a nerve conduction study, and I discovered it involved running electric currents along my arms and fingers until they jumped. Yes, it hurt, not really badly, but it was the reminder of the previous electrocution that was the worst part.

Now 12 years later and in a declining health condition my current neurologist wants to rerun those tests to see what has changed. I’ll tell him what’s changed, I now know what’s coming and I worried all the night before.

So, lying on the bed awaiting the test I was practising meditation. I’m hoping practice makes perfect and that at some point it will work. Actually, I can relax quite well when I set my mind to it and that’s what I did.

Waiting for the test

I am going to back track at this point, as the process of getting to hospital in a limited state has its points of interest. If you think preparing to go to a hospital appointment is complicated generally, try it when you have limited mobility.

First, I must call the hospital and ask what tests will be done. If they need to test me lying down or sitting up, then if it’s lying down, as this was, do they have a bed available? If they have a bed, do they have a hoist to transfer me from my wheelchair into the bed? If they have no hoist I will have to arrive on a stretcher and a banana board is used to transfer me. Then I need to book an ambulance with stretcher transport. Which takes a while because they ask a lot of questions about why you need it. I then make sure there is a bed available on the ward and tell them I’m arriving by hospital transport. Next, I must change my carers timing. Because the appointment time would clash due to allowing enough time for being ready early. When you get hospital transport you have to be ready two hours before appointment time, that’s if the appointment is nearby. When I was going up to Liverpool, I had to check a leaving time, as it took 4 hours to get there. Before I was on the latest medication, I didn’t have the concentration to do any of this, so Mary sorted everything. Even with the new tablets, which help my focus, I still get absolutely wiped by this process and it is the only thing I do in a day, organise the trip to an appointment. This all happens weeks before the actual appointment.

Back to the day of the appointment. While we were waiting Mary took a phone call, checking parking and confirming the time of arrival. Always very helpful for me as I get anxious if I am waiting for an unknown time. My appointment was at 12pm and the two ambulance crew members, a lovely couple of ladies, arrived a bit before 11.30am. Those who follow my blog will know that our house is not big and so a stretcher, which I needed as the test involved lying down, is difficult to get into the house. The crew got it through to my bed with a bit of jigging, the bed, not them. Then started to get the stretcher prepared ready for me to transfer onto it. One of the ladies recognised me from my blog, I am famous at last. Holding back on signing autographs, that for some reason she didn’t ask for, I hoisted up from my bed onto the stretcher. I was swaddled onto the stretcher with straps and a blanket. This is done so that if I have a collapse on route, I don’t end up with my arms hanging. I also had on the neck cushion that keeps my head from lolling. Fortunately, I am very light, which makes it a puzzle as to why the crew heaved so much on slopes and corners. I know the BMI says 14 stone is obese for me, but that’s crazy. After much tricky negotiation the two ladies got me through the tight doorways, round the sharp angles, up the inner ramp and down our bumpy alley. Then onto the High Street where the ambulance awaited.

Hoisting onto stretcher
On stretcher and strapped in

If you have never been wheeled out into the High Street on a stretcher, let me just say, you have never lived. I used to think the most embarrassing thing would be using a wheelchair, until the first time I was wheeled on a stretcher in Wellington High Street. There is something about being in bed, that feels like it should be inside. I don’t know why that is, lying down, in a blanket just feels like an inside sort of thing. Obviously when you have a major accident or emergency you are wheeled on a stretcher publicly; in that situation you may not be very aware of what’s happening. But remember I was being transported that way because I needed to be tested on a bed. So, I was awake and aware, oh yes, and embarrassed. Red has always suited me though.

On Wellington High Street

We arrived at Musgrove after a very smooth trip, the ambulance crew parked around the back so that we were on the correct level and didn’t have to go up in a lift. The first thing that hit us all as we entered Musgrove was the smell of lunch, they were obviously having smoked fish. I say obviously, but it could have been any fish from fish fingers to smoked.

At Musgrove

There is something very nice about arriving on hospital transport. It makes up for a lot of the inconveniences. Because the ward has advanced notice of your arrival, you often go straight into the side room that you will be seen in. That happened this time. I still had to wait for the doctor. Next came the transfer from stretcher to hospital bed. At home I used my hoist to transfer onto the stretcher, here I had to be slid on a banana board. I had on my day sling, which is a polyester sling that covers all my torso. This has straps which they could hold onto and pull. There were three people in the room, two ambulance crew and a nurse. Here I had confirmation I am not obese, they called just one more member of staff. A year ago, when I was transferred into the MRI machine, they called a total of 8 people! I must be half the size, mind you I have lost weight. The 4 of them transferred me easily. This involves lining the two beds up close and same height, slipping a board under me, pull across and take board away, simples, for me anyway.

I didn’t have long to wait for the doctor. She asked me some medical history questions and then started the test. She attached electrical contacts to parts of my body starting with my feet and asked me to say when I could feel a pulse, while recording the results on a computer. After I felt the first pulse several more followed. She repeated this at different points on my feet, lower and upper legs, arms and neck. At some points she warned me that I would feel a whole series of pulses in quick succession, at others that my arm or leg would jump, they did. If you have ever used a TENS machine or one of those electrical stimulation exercise machines, that’s what it feels like. I would not describe it as painful, as such. The pain for me came from two things, anticipation and memory. The other thing I noticed was that it was less painful than the test I had 12 years ago and that this time it included my legs, which previously it hadn’t. In that test 12 years ago, the doctor had spent a long time on my hands and arms. Testing each finger many times. This test was over more of my body, but less detailed per part. I suppose that’s because this is updating how things have progressed, at that point 12 years ago, I could still walk, a little, I could also stand.

The next part was an electromyogram, this was very specific in my case, looking for a rare but unlikely neurological condition. So, I only had the needle inserted in my head, above one eye. I think if you had the test, it more likely to be in other muscles. This part did hurt at times as the doctor kept moving the needle around as part of her test, it also took a long time. I was well ready for it to be over. While the test was ongoing, I could hear a continuous sound like rain on a metal roof. Every so often she said to the nurse “Now.” Obviously, a button was pressed, the sound stopped for a second then re-started.

The machine that was used

It’s always frustrating after these kinds of tests that you don’t get immediate results. They write to your consultant, who contacts you. When it was over, we only had about 20 minutes before the same ambulance crew returned to collect us. But just before they arrived, I had a collapse which lasted part of the journey. So the only way I knew where I was in the journey out of the hospital was a combination of Mary telling me and the smell of fish near the exit.

In Wellington we had the High Street parade to look forward to. A repeat trip along the High Street, maybe I should wave, no wait I can’t, my arms are strapped to my chest. Then back up our alleyway and home. The end of an exhausting trip out.

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Who said it’s grim up north

I remember as a child my image of the North was dark and cold, which was strange considering my Mum was born ‘up North’. We used to visit my aunt in Ryhope, near Newcastle every summer, actually that may be where my dark image comes from. The back yard was very dark, and the house could be cold. But I digress, this is not about my childhood, it’s about an amazing trip to see our son near Leeds.

We planned the trip for weeks and it was only possible due to Conveens (see my blog “Not so public convenience”) and some new medication that has decreased the number of collapses I get. Now after all the planning, the day arrived. Not unusually I awoke early. My carer arrived at 8am to get me ready to go. Mary did last minute packing and my carer washed and dressed me, plus puts on a Conveen. Lastly, it’s time to get in the wheelchair. As usual this is a lengthy process, but at last we are ready to go. The carer who is with me that day helps me to the end of the alley with our cases, while Mary does the last minute things that always need doing when you go away for a week. We find the Slinky accessible transport already waiting for us, so my carer decides to stay into her own time in order to help get us loaded and off. She is a wonderful lady, not just for that, but for many reasons. She is helpful, understanding, caring, thoughtful and very good at her job too. I am very lucky to have 4 wonderful carers.

On route to the station I have a collapse in the Slinky. Reclined in my wheelchair I am secure and comfortable, the driver does well not to make the trip too bouncy or swing too sharply around corners. When we arrived at the station there is a nice young lady from the assisted travel staff who helped us to the platform. On the platform a staff member we’d met before made himself known and told us where to wait and when we will be taken to the appropriate part of the platform for loading on the train. The train arrived about five minutes late.

Mary at Taunton Station

We had been upgraded to First Class by a manager at Cross Country as Second Class was full, so we were looking forward to the journey. But we were surprised to find the carriage was packed and that Mary’s booked seat was in use by someone’s bags. She found a better seat. But both her booked seat and her better seat were a far way from me. The seats near me had both been already booked when we were booked our tickets, but we hadn’t realised how far away Mary would be.

Unfortunately, the train was the old-style Cross country one, that was obviously designed by someone who had never used, or maybe even thought about wheelchairs. The space they allocated has a fixed table that takes up a big part of the space. That would be fine if you had a wheelchair that fit under the table, or a small wheelchair. But with a power wheelchair the only way to fit in the space is either sideways or at an angle. Either way your feet stick into the corridor. This means that occasionally people knock your feet. I could only recline a small way.

Its a squash

Now the good part of First Class. The moment we sat down the stewardess came around with free drinks and sandwiches. It was nearly midday. We later discovered that we could ask for hot food, and so we did.

Here came the test, I was sitting facing a carriage full of people and I needed a wee. I had a Conveen on, which for those who don’t know means I can wee into a bag on my leg and no one will know, except me. Oh yes, and everyone reading this blog. But think about it from my perspective, it’s still like weeing in public. I was not brought up to find that something I can do. Well, I was not brought up to talk about it. The only reason I am is to help people. This is a real issue, for real people. If I don’t discuss it and give my thoughts and solutions, who will? So, my discomfort was building.

My view from wheelchair, feel exposed enough?

The rain was hammering down on the window, not helpful when I needed a wee. We passed Bristol, the people next to me got off and Mary was able to sit near me. It’s amazing to be able to travel all this way on a train. The fact my new medication has reduced the number of collapses I am getting is a big factor in that. Of course, the idea was that the Conveens would also help, I just needed to get up confidence to use it.

We are arrived at Birmingham, what a dark station it is. I quite like the City, but not the station. Back in the 1980’s I visited here on business many times. I also came to exhibitions at the NEC. Ah, memories. The rain let up and there is a grey misty air. Onwards we went. I was going to have to face my fears. I decided if I did’t look at people then I wouldn’t feel so self-conscious when I used the Conveen. Success, that seemed to be the way forward, for me. Everyone will be different, not everyone will find it an embarrassing situation. So, the benefits of having Conveens are now apparent. Ideally it would be a good idea for Mary to empty the bag. But I chose 750ml bags to hopefully last the journey, and it did, because I couldn’t see an easy way for Mary to empty the bag in the carriage. I should point out that the toilet on those trains is totally inaccessible for me.

Into Chesterfield with its crooked spire. Many years ago, Mary and I looked at a possible job here. But we choose to move to Haverfordwest instead. The rain re started, it was hitting the windows hard and running down. More drinks and snacks came around. That’s when we discovered that we could ask for hot meals and did.

A lady sitting in front of us regaled us with her health issues. She lost a leg as a child and they sewed it back on, badly. Now she has trouble walking. She also uses the assisted travel. Another lady told us Mary and I are inspiring because we seem so bright and happy in spite of our difficult situation. We tell her that we are Christians, so we have hope in God and that we try to look positively at life.

On arrival at Leeds a very helpful assisted travel chap gets us off the train. He took us on the service lift in the station and through back corridors to the taxi rank. We only emerge into the crowds just before the exit barriers. Even then we go through them the wrong way. I felt like a US president being escorted by security through back routes to avoid snipers.

My view of ramp off train
Assisted travel guy ahead of me

At the exit doors he left us to await our taxi, which was running a little late. When it arrived, I was disappointed to see it is one of the smaller ones that I just fit in. This will be an uncomfortable last leg of the journey. The drivers first language is not English, so I do that typical British thing of speaking slower and louder. We get through about the destination. Why he needed it when the taxi was pre booked I don’t know.

Taxi, note left hand not on wheel and large left mirror, right is same size.

As we drove, I was reminded of the old joke about tearing down the dotted line. He certainly spent more time between lanes than in them. He was praying on his prayer beads for the first part. I guess he was Muslim, and it was prayer time. I would have liked him to have both hands on the wheel and pray in his head. Mary and I certainly prayed for safety in our heads. It’s difficult to understand how he could have such big wing mirrors and yet not see cars on his right. I lost count of all the near misses. But we did arrive safely, if a bit shook up.

He parked down the road rather than on our son’s driveway, no I don’t know why either. Then, in the rain unloaded our cases to the side of the road. Shouting to Mary to fetch them quickly. When she wanted to make sure I got out safely from the taxi. Going backwards out of a taxi is very tricky and Mary always keeps a keen watch.

Our son had left the house keys in a safe place through a back gate. Mary tried the gate but couldn’t open it. Then I suggested she push harder and fortunately it opened. Before I could enter the house, Mary had to find the old sheets she had brought for the floor to protect Chris’ carpets. I was quite wet when I eventually entered.

For the next hour or so Mary worked very hard cleaning and preparing. We had bought a second-hand hospital type bed, commode, bedside table and over bed table all from eBay. It was all much cheaper to buy than to hire. But that meant that Mary had to thoroughly clean everything on arrival before I could use it. The bed also needed setting up. Chris had put it in place, but the headboards, mattress and various bits needed attaching after cleaning.

Bed in Chris’ front room

Weeks before arrival and after a lot of searching we had managed to find a local care agency to employ who could offer care for the week. They arrived at 6:30pm about an hour and a half after us. Mary was flagging by this time and ready to assemble the bed and put down the carpet protection we had bought. We didn’t want to ruin Chris’ carpets with my wheelchair. The care manager who brought the carer pitched in with the carer to help. They helped finish cleaning the bed and other bits, assembling the bed, and laying the floor protection. Part way through the care manager had to go and pick up another couple of Carers from their clients. They joined in for the last half hour. It was a wonderful help to us and very welcome after a long trip.

Preparing floor

The care company we found turned out to be brilliant generally and the carer they chose for me amazing. She was a lovely young lady, full of vitality and life. Intelligent and quick witted which made for interesting conversation. She quickly picked up the lymphatic massage, which was very beneficial to me. She was also very helpful around the house and got on well with Mary, Chris and me. We really hope we get to see her again. The original plan had been to have two carers, one during the week and one at the weekend. But the one carer came especially on her weekend off, just to us, so that we would have only one person to get used to.

Father’s Day was the day before we left. Our other son and wife joined us for the weekend, a lovely treat. They live not too far away. We had planned to hire a wheelchair accessible taxi and go to the RSPB Fairburn INGS which is nearby, but the only nearby taxi broke down and one further away was going to charge a lot. So, we headed up to Ledston Hall in the village, it was interesting to look around the grounds.

On Saturday we went up there first, the private road up has speed bumps. I know its a private road and they want to slow traffic, but speed bumps are very scary in a wheelchair. The bump is enormous, even very slow. But we made it and looked around. That night I was treated to a McDonald’s by my sons. That may not sound a treat to you. But I have wanted one for the past year and a half.

Local hall

Sunday, Father’s Day, after cards and presents we had a BBQ, after a very wet week the sun came out for a few hours. We had a lovely selection of meat and treats. Then afterwards it was back up to Ledston Hall. No one took coats, except me, but I had no wheelchair cover. The rain decided it had kept off long enough and it poured down. It only stopped once we were in sight of Chris’ house.

We were sad to leave on Monday. Chris had to leave for work at 8am, our taxi wasn’t until 10am. This time we had requested a different driver, he was much better. The same assisted travel chap helped us at Leeds station, the train was running nearly 10 minutes late. I was pleased to see it was an HST train. These have a bigger area for wheelchairs and the carer place is opposite the wheelchair. The only problem is that, just as with the other train, the table is fixed. So, I couldn’t recline much, but at least my feet were not in the corridor.

My view on return train

Food was less forthcoming on the homeward trip, we got sandwiches eventually, but plenty of drinks and snacks. I had overcome my issue of using the Conveen.

At Taunton the Slinky was waiting for us and after a diversion to collect another person, we made it home. Then Mary had the major job of unpacking and putting everything in my reach.

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Young and old

Over the years I have had carers as young as 17 and some into their 60s. You would have thought the older ones would be more mature. Not always. You can never tell who the best carers will be. I used to think young people would never be suitable, then I was proved wrong. Then I thought older people would be unsuitable for me, again I was shown to be wrong. In the end it’s the particular person and their character, not their age that makes a good carer. I have had brilliant carers of all ages.

I will tell you two true, but funny stories of Carers at both ends of the age range. Some time ago, I will give you no clues of when or where. I had an older carer who was just there to sit with me while Mary was out. I can’t safely be left alone for long. It’s a safety issue. As I am at risk on my own, I can’t get into the wheelchair or out of the house alone, I would be in danger from fire or problems. That’s while my muscles are working. In a collapse I am completely helpless. While the carer was there, she made my lunch and not untypical for me I had a collapse after lunch. That’s where my muscles go into a paralysis for a short while. It’s a kind of fit or seizure. I still call it a collapse because when I used to be able to walk, I fell over. I am fully awake in a collapse even though my eyes are closed. While I was in the collapse, the carer was sitting in a chair next to me, so I was waiting for my muscle function to return and I heard a light snoring sound from beside me. My carer had fallen asleep! During her stay with me I had 3 collapses and she fell asleep 3 times! Of course, she might say she wasn’t asleep. Anyone who has been alongside someone who snores would probably recognise that argument. You may not be surprised we haven’t used her services since.

At the other end of the age scale I had a 17-year-old carer straight from school. As part of her duties she needed to prepare my lunch. I asked for a fried egg. I had assumed this was a simple task, but apparently not one she had come across before. I guess still living at home, if you don’t get a chance to cook or are encouraged to do so you never learn. That was the case for her. I have had other young carers who are very capable.

I have noticed that certain agencies have higher proportions of younger carers and other agencies higher proportions of older carers. Probably because some agencies provide anything from 15 minutes upwards of care and so carers work solidly all day, every day. A young person looking for a job wants that kind of work, regular hours, plenty of them. Other agencies do a minimum of an hour. They often seem to employ those people returning to work after children or semi-retired. Sometimes these carers want more flexible hours and so doing a couple of hours with one client, having a gap and a couple of hours elsewhere suits them. These are just my observations. We have used both types of agencies. We have also used Micro providers, who are self-employed carers, and can be any age.

A final comment about age. Some of my family came to visit recently when one of my carers was around. All of them said to me afterwards, “Isn’t she a bit young to be doing care work.” She is 39. But she does look very young. I obviously told her and she said she often gets told that. Of course, I fully understand as I am often being mistaken for a teenager, or is that a pensioner, I forget.

Age is a funny thing; we make assumptions based on it both in terms of ability and maturity. We guess peoples age by how they look and act. Yet in reality we can’t always guess a person’s age nor can we tell how capable and mature they will be.

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We want one with a bigger bottom next time

“We want one with a bigger bottom next time.” As I said it, I realised it could be taken the wrong way.

I wasn’t talking about carers, perish the thought. Nor as my wife suggested my own bottom being bigger. I’m sure you realise I meant aftershave bottles. We were in a shop and the said bottle was on offer. My current one seemed to fall over for a laugh. It sat and waited until the carers back was turned and them, bam, it fell on the floor. Every single day just after my carers had finished with it and the bottle was returned to its shelf on the trolley, there was a loud bang and we all knew what had happened.

“There goes the aftershave, it’s got too small a bottom.” One of us would say the obligatory words.

It’s as if the dark blue upright bottle of lotion waited silently for the right moment to catch us out. Always just as my carer is turning to do something else, yes it waits till her back is turned. It’s not a gentle thud when it falls to the floor either. Who would believe such a small plastic bottle could make so much noise hitting a carpeted flood. I suppose it does often hit the plastic protection I have around my bed, but that’s no excuse. So, as you can now understand I did not want a small bottomed bottle again, no matter how cheap it was. Even if the shop gave if away, I would give it back.

Today as I write this, we are at Cleve Spa coffee shop, no we don’t live there, well only every other day. Mary’s Dad is visiting and she is ordering him a hot chocolate. The lady serving offered it in a very nice glass mug. Mary said “can I have it in one with a bigger bottom?” She didn’t want it to tip over too easily. The glass mug offered had a very slender bottom. What is it with slender bottoms, is the world becoming obsessed with them. When I was a child mugs had big wide bottoms, as did everything and everyone else. Sturdy and wide were the standard, not slight and svelte. I suppose we are at a Spa and fitness centre so maybe slender is to be expected.

But why has crockery become so small and strange in the modern world. Slender bottom mugs, old pop bottles for water, milk bottles like I had at school for serving milk, gigantic wine glasses, you could fit a whole bottle in ones these days, and wooden platters. I know a wooden platter looks nice and it works OK with many things, a cheese dish looks great on it. But I was once served fish and chips on a wooden platter in a fancy pub. The peas just rolled on the floor, and I like peas. What next? Am I going to get a full roast dinner on a platter, where will my gravy go? It needs an edge, a barrier. I don’t want to have to start my meal by making potato walls around my plate.

Thinking again of small bottoms, as I am sure you weren’t. I fully understand the problem of small rear ends. I don’t have lots of fat on mine and the pressure of sitting long times can be a problem. This is not something that is covered sufficiently in the media. Shapely and fashionable posteriors are often covered, or uncovered. But the issues facing those of us with little fat on our rear ends just doesn’t see the light of day. I think it’s time we took a stand, not literally obviously. It’s a pain in the posterior, that is literally and I need to pad it out to make things more comfortable.

I do have a serious point to make, as odd as that may seem. Those of us who spend all our time sitting in chairs and lying in bed have to protect our skin. Pressure sores are a real danger and must be avoided. If you find yourself limited to bed or a chair for long periods of time (days or weeks) without being able to move, make sure you involve the relevant professionals in your care. In this case district nurses, who you contact via your GP. Prevention is better than cure with pressure sores. If you are concerned, chat to your GP.

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Fair weather

A year ago, Mary was in Sheffield, I was in Popham Court Nursing home on respite. The weather was scorching hot and a previous carer and family took me around the Wellington Street fair.

Today as I lie in bed looking out at the rain, dressed and ready to transfer to my wheelchair, I don’t feel as keen. Rain is running down the windows and dripping from the overhangs. I can hear it hitting the conservatory roof whenever Mary opens the kitchen door. She is busy getting ready for us to go out. I’ve mentioned before, going out when you are disabled is no simple matter.

“Oh, the poor Wellington Majorettes, I can hear them outside. They must be getting soaked.”  Says Mary when she opens the front door to put something out. Our alley opens onto the High Street and sounds from the Street Fair reverberate up it.

I also feel sorry for them, but I’m considering how wet I will get. I have a very good set of waterproofs for my wheelchair, but some rain normally gets in. There is also a restriction in being cocooned in polyester sheeting. Everyone I meet normally says how cosy I look, or comments on how I have the right idea, being so wrapped up. Maybe they should try it.  At least it’s warm today, so I can wear less layer’s underneath. One time I tried out a waterproof covering for a mobility scooter, it had a see-through front section. I pointed out to my carers that if I used that I would have to be careful what I wore underneath. You see when I am wrapped up in my normal non see-through waterproofs, I could be in my swimming trunks underneath. Some days in Britain that might be a good idea. That’ll get you wondering if you see me on a wet day.

We were planning to set off in time to join the Baptist Church for their outside Gospel Choir singing, I wonder if it will move inside, I hope so. Our original plan was a leisurely trip on route there looking at the stalls, I think it will be a lot quicker now.

Hoist into the wheelchair and wrapped like a cocoon ready to venture out. I take my normal tortuous route from lounge to kitchen, do a little twirl in the kitchen. Not because I like dancing, but because that’s the only way to get out of the next door. Through the kitchen door into what was once our dining room and is now just a utility room and out of the front door. Mary puts the bag onto the back of the wheelchair. Which can’t be left on in the house, it gets in the way.

Sling on, ready to roll back and connect to hoist
Wheelchair being brought through by Mary
Mary preparing wheelchair
Hoist connected, wheelchair in place
Lowering into wheelchair
After Mary has put on my outdoor gear. Lounge door to kitchen
Swing around in kitchen to get angle right
Kitchen to utility room
Finally out the front door

Hey presto! The rain has blown away and the sun is struggling to make a showing, in between the odd shower. We make it to the Baptist Church in time for the start, but obviously the earlier rain has delayed preparations. They are outside.

“One, two, one two, testing.” Comes from the speakers at varying volumes. Assuming that isn’t the Gospel choir we get a free coffee and for Mary, a cake. Some time later the choir start and are well worth the wait. The only problem being that my body needs food at regular intervals. By the time the music starts it’s getting well past my lunchtime. We stay for a short time but must return home so that I can eat. It’s back through the whole process of wheelchair manoeuvres and hoisting to get back into bed, that way I can rest after eating, for today has another activity in store.

Wellington Baptist Church. Gospel Choir in background

There is a double treat, not only Wellington Street fair, but the first day of open-air music at Wellington Park. Something that happens every Sunday afternoon June, July and August 2:30 till 4:30pm. They have refreshments that are probably the cheapest I have ever found at such an event. Tea, coffee, mini cheddars and ice creams. Oh yes, the music is great too.

After lunch and a rest, it’s back into the wheelchair and through the circuitous route out of our house. As we leave the house, we follow the strong drumbeat of a street performance. It’s a clever job Mary makes of weaving through the crowd to view the drummers and dancers. Or should I say ‘proper job’ as we are in Somerset. I can feel the drumbeat moving not only my body but my whole wheelchair. Quite some beat to move 250kg. Most of that being the chair of course, I think that must weigh at least 200 of the kg’s.

Drummers & dancers

After having our innards shaken for a while in the High Street, we weave our way to the park. Because of the suspect weather, it keeps raining on and off, there are more shelters than usual, and we find a covered area for Mary to sit next to me. The band is excellent, one of the best I have heard at the park, the Taunton Concert Band. I am listening to them as I write this. Hang on, let me just applause that last piece from ‘Dances with wolves.’ Tea break now.

Main seating area opposite band stand

The rain has just re started heavily. It must have taken pity on the conductor who was the only member of the band not covered and kept off till the break. I do love Wellington Park, especially in summer during these performances. There is a banner being held up for a ‘tree walk’ they do this in the intermission. It’s a guided walk around the park telling its history and about the horticulture. Mary has gone to get us a drink, or did she say she was looking at the book stall. We will soon see. Oo, Mary has bought some books, now she is off back again to the stall. Ah! She’s bought me a pack of mini cheddars and a cup coffee.

Rain on the pond
Me being photographed taking this photograph of Band

The rain is increasing I think I had better move more under cover. I have my feet up so that my head, which was covered by the trees is stuck out of the tent. As the rain picked up, the odd raindrop found its way through the branches. But I will put my feet down and move further in. I can see the pond from where I am sitting, I do love rain hitting a pond.

The Taunton Concert Band don’t have amplification, they don’t need it. But that does mean whenever the conductor wants to announce the next section he must come around to each section of the audience. The way everything is laid out is in a square with the bandstand in the middle, main seating opposite, tea, coffee & book stall to the left as you look at bandstand, and another covered area on right. They call that last area disabled seating and its where we are. But really anyone sits there. There is another covered tent at a distance for smokers and a small information and first aid tent.

Everything is so well organised by Friends of Wellington Park. They work very hard, setting up, running and breaking down all these events. Whenever we go, there is a lady, Pauline who spots us and makes sure we can find a place to be under cover with a seat for Mary.

As the very last strains of the final piece of music rang out, the sun finally burst through the clouds, it was as if a heavenly lighting booth had coordinated with the band. The sunshine made for a pleasant end to a great day and a much more enjoyable walk home. I’m able to dispense with waterproof coverings. One last chicane to negotiate once home in order to get the wheelchair back into the lounge and me into bed. It’s been fair weather after all.

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Slip, slide or stick

Last week I was taking bets on whether I would sink or swim at Wellington swimming pool. Today I was not able to find out. The existing owners are not wanting to spend money and the hoist is broken. So, I cannot transfer to the poolside chair that lowers you into the pool. Apparently, the new owners, who take over August 1st will prioritise sorting out accessibility.

Not wanting to miss out on trying out the facilities I decided to try out stage one, the changing room. I am so glad I did; nothing is easy and simple when you are disabled. Mary and I got up at 6:15am, well I was awake at 4am as usual, but Mary brought me breakfast 6:15am. By 7:30am I was ready to head out to the Sports Centre. We arranged to meet one of my carers there, an experienced young lady who has used poolside changing equipment before. Arriving around 8am we headed into the changing room. Mary explored the sports centre.

Let me describe the changing room. It’s oblong and has a bench and two lockers along one of its short ends and a toilet and shower unit at the other. You enter on the right of one long wall with the bench to your right and toilet to your left. Ahead of you is a power up/down bed on the opposite side, it’s folded up against the wall. I say bed, really, it’s a metal frame with a strong plastic sheet stretched over it and holes in it. The plastic sheet has a dip to enable drainage, in theory. There is a lifting side to it, but this only comes up into place when the bed is up flat against the wall. When you lower the bed into place you either need to have the side already up or stay down. Which means that if it was up, you couldn’t then slide onto the bed. If it’s down, it doesn’t fulfil its purpose of keeping a user safe from sliding off. The whole bed raises and lowers electrically.

This is a similar changing room to give you an idea of how it looks

My wheelchair was lined up right next to the bed, with the side down. My wheelchair was then reclined, and the footrests raised. Making it almost bed like. The bed was raised to an inch below my seat height. The side support on my chair was removed and the arm swung up out of the way. The result of all this was a near continuous route from chair to bed. I then rolled onto the bed, simple. Not quite, because it was at that point, we discovered that the bed was designed either for children or shorter adults. I am 5’ 10” and my feet hung over the bottom. You may think so what? But I have delicate skin and the surrounding edge of the bed is a metal bar. Very hard and unforgiving, especially for delicate skin like mine. Later when I turned over there were red marks on the backs of my legs.

Clothing removal went OK, the plastic was still dry, so the material slipped alright. My carer discovered that the shower hose pipe was quite short when she was washing me. But the water pressure and heat were good. She was very glad to be wearing sandals as the floor completely flooded. Mary said the manager was mopping up floods coming from under the door while we used the shower. Why is it that no wet room is designed well? I have been in a few over the years and all of them flood. Can it be that hard to allow enough angle and sufficient drainage to prevent this?

The other place that flooded was the bed itself. The small drainage holes in the plastic were under where my body lay. I discovered that I am a great plug. When I turned over, to have my back washed we discovered a few things. First, there were no bars for me to hold onto to assist in turning, I had to use the side of the bed, not easy, because it’s too low to get hold of and has no grips. Second, the water was able to drain as I was not blocking the holes once I turned. Third, I had red marks perfectly matching the drain holes all over my back and bottom. Memories of the Amazon shower stool came back (see my blog “An odd request from Amazon.”) Fourth I slipped more easily when I had been soaped than after I was rinsed.

After I was washed, we had the problem of drying. My carer had already pointed out at the beginning, that the number of towels I had brought was woefully inadequate. I had asked Mary to pack three, thinking one more than my usual was ample. It wasn’t. As one was used to protect me from further marks after they were discovered on my back and one was used to dry the bed. Just one small towel was left to dry me. By this point the humidity in the room made drying hard going. But with amazing perseverance from my carer, I was dried and dressed.

Next my wheelchair was brought back to the bedside. I neglected to mention it had been moved while I was washed. The bed was positioned an inch above my chair seat, and I rolled back into the chair. A reversal of the earlier process.

It was great to have a shower, first one in a few months as I don’t have a wet room at home. I can only have a shower at other places. The last one being Revitalise in Southampton, where I also had a bath (see my blog “Shall we get in the bath?”). But I will not be repeating the experience until the new owners improve the facilities. We spoke to one of the representatives of the new owners afterwards and pointed out what needs changing and upgrading. Hopefully they will sort these things out and myself and other disabled users can benefit.

It’s disappointing when expectations of an experience fall so short. I did enjoy being able to get thoroughly soaked with water. But the difficulties of using the bed made the experience much harder than it needed to be. With a ceiling hoist, a replacement bed of adult size, a longer shower hose, and better drainage the experience would be so much better.

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A busy day

“It’s only a dribble.” Said one of my carers returning from the kitchen.

“What is?” I was curious.

“The tap.”

Then a conversation I had with Mary earlier came back to me and everything made sense. Our new neighbour had discovered a leak in their water pipe. Obviously they were fixing it and I remembered that every flat, house and business in our alley shared the one stop tap.

I sent my carer out to request they turn the water back on so she could fill my wash bowls. I was all ready for my morning ablutions and decided water was a necessary part of that. She went off down the alley on this windy morning, plastic apron flapping, blue rubber gloves on hands. I watched the exchange on my door camera in fascination. Heads nodded, hands waved, aprons flapped and then she returned triumphant. The water was back on. But brown water spluttered from the tap at first try. Eventually it ran clear. We later discovered that our alleyway has a steel water pipe that is corroding, hence the leak and the brown rusty water. Examining the repair had shifted some rust, lovely. Looks like all of us in the alley are going to need a new main pipe soon.

. The temporary repair on the water pipe.

Quickly she filled wash bowls, kettle and started my wash. We hadn’t finished when the doorbell rang and our neighbour was checking if the stopcock could now be turned off. More water was fetched before the water dwindled to another dribble. This was probably the least water I have been washed in for a while. Still, better than no water.

It seemed only two minutes later when the phone rang. Millbrook were responding to my request that morning about my ripple mattress. I’d realised the night before that it was slowly sinking. My bottom was gradually reaching the metal frame, not ideal. This situation is classified as urgent and Millbrook have a 24 hour emergency service. So just 1 ½ hours after I phoned I had a call to say the replacement was on its way, accompanied by a technician. I added that last bit in case you were picturing a mattress walking down Wellington High Street on its own. Stranger things are happening these days. Food is being delivered by wheeled automated delivery vehicles on university campuses. Amazon is using flying drones for delivery. How long before my mattress arrives unaccompanied? But as I received this phone call I was still undressed and mid wash and the technician said he would be 5 minutes. This caused a great deal of alacrity, by my carer, in the last bit of getting me ready. So much so that I was ready before they arrived. Any quicker and I would have been ready before we started.

To enable the mattress change I was hoisted in my day sling. It’s more comfortable and safer for a long duration than my other sling and like being in an upright hammock. Hanging there I watched, sorry supervised, the work of changing the mattress. The sling is comfortable for a short while, but it took a while to change and re inflate the new mattress, so I was ready to return to bed . Now back on the new mattress I realise that the old one had been deflating for some time. Probably weeks. The difference between the two was very noticeable.

On Mary’s return at lunchtime the water was still off. So she arrived back to a pile of washing up, no water for a cup of tea or to make dinner. Not a good welcome home. Fortunately she found some bottled water in the cupboard for making lunch as by this point a section of the broken pipe had been removed. So the stop tap couldn’t be put back on till after it was fixed. Mary had not finished her lunch when we received visits from our new neighbour and his brother who was helping him. They were showing us the corrosion on the pipe and chatting about the way forward as the rest of the pipe in the alley looks poor. They seem like really nice new owners of the house at the end, very capable and helpful people. I look forward to getting to know them more.

Then the phone rang again. Wellington Swimming pool, an update on the situation about me swimming there (see my blog “Sink or swim?”) Apparently the mobile hoist is not fixable and the current owners will not spend money to replace it. When the new owners take over 1st August it is a high priority to replace it. So meanwhile all I can do is try out the changing room/shower to make sure that works, in readiness for the arrival of the hoist. Oh well, from a one week wait to try out the pool, to a two month wait. At least I get to try out the shower. You would think there is an equality law about swimming pools being disabled accessible. But there isn’t, not yet. In the USA there is such a law and there is talk it may come here. Meanwhile accessible pools are widely spaced and what is meant by accessible varies. After all, there is a big difference if you are a wheelchair user who can stand to transfer compared to someone like myself who can’t. Not every, so called ‘accessible’ changing room has beds to be changed on.

It’s been a much busier day than usual for me. You are probably thinking, busy? What’s he talking about? That’s not busy. But remember, for me a normal day for my health condition is to have nothing happen beyond being washed and dressed, or perhaps a trip out to the Spa coffee shop. Which is very tiring in itself for me (see my blog “Consequences.”) Anything added is exhausting. So it really has been a busy day.

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