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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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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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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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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I’m singing in the rain

“Oh no, I’ve given you another excuse to sing.” This said by one of my carers, after she inadvertently mentioned a song title in something she said.

Can I help it if I love singing? These days I only sing a few words, a line at most, but it brings back the memories of singing. I don’t claim to be the greatest singer or actor. But I did love singing and acting in Nailsea Musicals (see Biography of Mike & Mary). ‘The sun has got its hat on’, has never sounded the same as when I sang it. Just as well really.

Me singing “The sun has got his hat on.”

The production of ‘Lest we forget’ demonstrated why I shouldn’t become a dancer. Amazing bottom wiggles aside, which, let’s face it, did look good in my sailor whites, every other move lacked style.

Me 2nd from right in sailor whites, wiggling my bum.

My rendition of a verse in ‘Bless em all.’ Had to be seen to be fully appreciated. Maybe the fact that I hadn’t understood waist measuring had moved between 1940 and 2000 didn’t help. I measured my hips, 36”. In 1940 waists were measured around your tummy, mine was 40”. When my 1940’s uniform arrived with a 36” waist, it wouldn’t fit over my 40” inch belly. Even after Mary moved the button and I breathed in; tears were in my eyes the whole of the song. Perhaps I looked more emotional, maybe I had a higher register, or was I just in great discomfort.

I relive my glory days as a singer every time I am hoisted now with a line from ‘Up, up and away.’ Or the beat box sound of Thunderbirds. I shan’t tell you what I sing when I use the bedpan in the morning. I’m sure your imagination can fill in the sounds and all the other senses.

People who meet me tend to say what a ‘happy chap’ I am. That’s before I start singing. Maybe I could change that if I sang a few choruses to them. It could be that the silly grin I often have plastered on my face, or my daft sense of humour gives people this idea. But I am more than happy. I have talked about this before in my blog “How can it be OK?” Happiness is about what happens to you. I do have lots of good things to be grateful for. But I could also focus on the negative limitations. I don’t do that, I find an inner joy, because joy is not reliant on events and situations. Joy comes from within. My joy and my peace comes from knowing God. 38 years ago, I had my eyes opened and my life felt like it started again. That is the real reason I am such a ‘happy chap.’

My carers often say that spending time with me cheers them up, because I am very positive and upbeat. What they are experiencing is the joy and peace I know from God. I can be as grouchy and as much of a pain as anyone else. I am by no means perfect. But despite my imperfection, even though I fail, God never does. He shines out even on my darkest days.

I want to just say a quick aside about religion. I am not religious. I don’t follow a set of rules. There is not a list of things I must achieve for God to love me. If you think there is, then think again. That is a legalistic way of looking at God. It makes God into a big bad distant figure in the sky. A sort of white bearded disciplinarian, waiting to punish us for getting it all wrong. That is not the God I know. That is not the God I met 38 years ago through Jesus. God is a loving, forgiving father, a father more loving and caring than any earthly father or mother.

Back to my wonderful singing. When I was a child, I used to sing a duet with my sister ‘Come my dear Franz, just one more dance.” A Harry Belafonte song. Very odd to sing to your sister, although I was too young to understand what it was about. We were quite a musical family, I hesitate to say Von Trappe, because that would be totally untrue. My Granma used to sing on stage at the local Church social club. My mum sang at Church but was always very nervous and sang quietly. On long car journeys my mum and dad sang duets and sometimes all five of us children joined in. ‘Puff the magic dragon’ sounds amazing sung by seven voices in an estate car on a motorway.

You’re probably thinking, “where can I get to hear this incredible voice?” That’s just rude, if you weren’t thinking that. Well I’m sorry to tell you I no longer sing on stage, although there are videos that change hands for incredible amounts of money, I think the last sold for…. Wait they don’t sell at all. But I do still occasionally sing in public. I have been known to burst out in song with the odd line as we are wheeling along Wellington High St. What a treat you are in for if you pass us by. It’s a shame you’ll miss the infamous bottom wiggling from ‘Lest we forget.’ You just need to track down a video from Nailsea Musicals. They are as rare as hens’ teeth.

Being limited and long term ill doesn’t have to make you miserable. Find something to hold onto. Focus on what is good. Find that inner peace and joy. I would obviously say seek God and he will be found.

Check out Alpha it’s a way to explore Christianity.

Climb every mountain

“It’s a very steep hill.” Mary is very fit and yet finds the climb to Cleve Spa hard going, especially as it comes after the half mile walk from our house.

One of my old carers used to find it fun, or perhaps her daily workout, to run up this hill. I’d never really appreciated how steep it was. For some reason it never struck me as hard going. I certainly never get out of breath going up it. Then one day Mary stopped at the top of the hill, rotated my wheelchair to face the way we had come and showed me the rooftops of the garage at the bottom of the hill. It seemed an awful long way down. Perhaps it was steep after all. Still it’s easy going down.

My wheelchair has a brilliant function, designed so that I can recover from a collapse whilst in it. But also, to enable a change of pressure in use and to help with steep slopes. It can recline and tilt. I have used this on steep hills. In Dawlish and in Sidmouth.

My Quickie Salsa M2 fully reclined

In Dawlish we were staying at the RCH Bridge house convalescent hotel in winter, it’s cheaper. The route between Mary’s dad’s house and the hotel goes via a park. In winter the park is muddy and full of leaves. Not wanting to take leaves and mud into Mary’s dad’s flat we chose to avoid the park. The problem was that the most direct route took us up by the hospital within the car park. If you know Dawlish, you will know that is a very steep, if short hill. I had two options, either go up backwards, tilted back, or put the wheelchair in a full forward tilt and take all recline off it. Making the footplates almost touch the ground. I chose that option, as I like seeing where I am going. The Quickie Salsa M2 is a very stable and well-balanced wheelchair, so I knew it would cope. Even so it felt scary the first time I went up the hill. Each little bump felt like it would tip the chair backwards. I was glad to reach the top. I am convinced there was no actual danger, only perceived, as the slope was within tolerance for the chair in the tilt I had set up. But that doesn’t take away how it feels.

The time in Sidmouth was a day trip by minibus from the RCH. The accessible minibus took us first to a donkey sanctuary just outside Sidmouth. By the way that is a very accessible place for wheelchairs, plus if you like donkeys you are totally sorted. The café is also very large and accessible with nice food, if a little pricey. But as entry to the sanctuary is free, I guess they make their money in the café. Then we were driven down into Sidmouth. The driver dropped us at Connaught gardens just above Sidmouth itself. The gardens are an odd mix of accessible and non accessible. You suddenly come across steps and must double back even though all the route has been smooth and easy up to the steps. The café there is not accessible.

We decided to try out the cliff path from the gardens to the sea front. But we weren’t sure if it was accessible. A word of warning; do not try to access it from the top in a push wheelchair unless you are strong and have suitable brakes. The path down is extremely steep! With a power wheelchair I would not attempt it unless you have one like mine that reclines. I reclined mine backwards quite a way and headed down. There were a few points where I wished I hadn’t started, but the thought of trying to go up kept me going. I would only attempt going up, backwards and tilted. Definitely not to be tried in ice or even heavy rain. Once we reached the bottom the rest of the path was accessible, but I could see that stones from the beach, or any debris could easily block the route. I would probably recommend a wheelchair user access the path from the seafront and head along from there, rather than from the gardens. Sidmouth seafront itself is a lovely long promenade to wheel along. If only Sidmouth was accessible by train, rather than just by car or coach.

Sidmouth with coast path behind

Another, less major hill I have climbed in my wheelchair a few times is on Dawlish seafront. Under the viaduct as you turn right towards Coryton Cove you must climb a short incline onto the sea wall that runs alongside the railway by the sea. It’s an exciting trip and not possible, or rather not safe at high tide in stormy weather. The waves sweep over the sea wall an onto the railway line.

View of sea wall from the wall

Passing under the viaduct and towards the sea wall is usually simple and clear. But in winter often pebbles have been swept over the path. Mary therefore keeps a stylish pink spade hanging on the back of my wheelchair. I see it as my manly pink spade, and I don’t feel at all embarrassed to have a pink spade. Not in the least embarrassed. When we were traveling to Dawlish, this pink spade, got caught on the internal train door, pinged off and landed at a passengers feet. I debated pretending it wasn’t mine, but Mary quickly claimed it back.

Note the pink spade, as I wait at the train station

One morning we were heading to Coryton Cove and the night before the sea had decided to block our path. Mary gamely used the pink, yes pink spade to clear a path for my wheelchair. We reached the incline, I like to think of it as a hill, or mountain. Somehow it makes the whole journey more heroic. But if you know Dawlish, don’t let on that the incline is only a few feet. I struggled up the massive hill onto the sea wall to be greeted by more pebbles. We were also greeted by a helpful man warning us of the dangers of the sea wall. It is dangerous if you are unaware not to try it at high tide and that there are bumps and potholes to avoid.

View of sea wall from beach

Coming the other way were a big gang of workmen. They were all men, so I’m not being sexist. They were welding spades and brooms so Mary asked if they would clear a small path for us. I was just glad to see the back of the pink spade. Although it did get hung on the back of my wheelchair again in full view of passers by. The workmen were brilliant, they cleared a large pathway for me right the way through. So, we enjoyed our trip to Coryton Cove.

Workmen clearing a path for me

If it wasn’t for my brilliant wheelchair these trips would not be possible. I really can climb every mountain, OK, well slight incline then.

See my other blogs for other details of my wheelchair (My amazing wheelchair). I also blog more about our past (Biography of Mike and Mary) my journey and things we have learnt on the way. As well as helpful aids I have discovered (Not so public convenience.)

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Me and my big mouth

I think you could say I am direct, blunt, in your face, a ‘say it as it is’ type of a guy. I tend to speak a bit too quickly and be a bit too blunt. I used to think I was just being honest and open, as I’ve got older, I realise it can cause problems and sound rude.

I remember when I was 16 in the 1970’s, that can’t be right, it makes me in my fifties now. Surely, I’m not that old. So, I had just started work and I was working in London in a photographic studio. Not as glamorous as it sounds, because I worked in the black and white processing lab attached to the studio. I printed up photos for professional photographers that were used in magazines and for displays. There was also a larger photo department with a De Vere Mk 10 enlarger, that printed huge black and white photos many feet wide and high. These were used in exhibitions and on one off billboards. These days such things are produced by large laser printers. In those days a small run of prints had to be done photographically as any other form of printing cost too much to set up for a small run.

I couldn’t find a photo of the De Vere Mk 10, so this is a later floor enlarger
to give you an idea of scale.

A large format negative

I am going to make an aside here, this was the 1970’s and I know a lot of people post things on Facebook about a ‘rose tinted’ lack of health and safety in the 1970’s. I just want to balance that a little, health and safety can be a good thing. I was a trainee along with a young girl also about 16 at this photographic studio. We were used as human packing to transport precious photos to exhibitions. Yes, you heard right. When the company had high value photos to take to an exhibition, evidently higher value than us. They put the two of us in the back of the van to hold the large photos and stop them getting damaged, no concern for us getting damaged. The van driver was not careful in his driving around London. He made no allowance for having two young people unsecured in the back. Both our hands were holding the photos and there were no seats, so we were leaning, half crouching against the side of the van. One day he slammed the brakes on so hard we were both thrown forward. The girl was hurt much more than I was, and she never returned to working at that company. I heard that she had whiplash and back injuries and couldn’t work at first. I really hope she recovered. I for one am glad that companies can’t get away with such things now.

Back to the photo studio. I coveted working in the large printing department. It had a photographic enlarger that was so large it was on a train track, used large negatives, and projected the image onto rolls of photo sensitive paper held on a long wall by magnets. The room was huge, a bit cold in winter, but a fun place to be for a young man. To develop the exposed paper, you rolled it through giant baths of processing chemicals. I would be sent down occasionally to help with this part if there was a big job on. Rolling the paper through developer, stop bath, fixing agent and finally a wash bath. The sheer scale was exciting. The guy who worked there was called Gary and one day he told me in confidence that he was leaving for a better job. But he also said:

“Don’t tell Alan.” That was our boss. “I will tell him at the right time, once it’s all finalised.”

What did I do in my excitement at hearing the job was becoming available? Next time I saw Alan, I totally forgot I was meant to keep it a secret and blurted out.

“Can I have Gary’s job when he leaves?”

I was not very popular with Gary after that. Don’t worry, he did get his new job. But you know the worst bit? I didn’t even get his job after he left. Apparently, I was too young and inexperienced, as if.

My big mouth seems to have a habit of speaking too quickly. A few years later I was working as a manager in a company. Yes, I had worked my way up over the years and it wasn’t a photographic company. I came back from lunch one day to find that my staff had received a visit from a lady in accounts who enjoyed trouble making. She had spent a while stirring up dissent. Not knowing that she had walked in behind me while one of my staff told me this. I then expressed my opinion of her trouble making nature. I don’t think I really held back on saying what a pain she could be. I did wonder why the chap I was speaking to was looking behind me rather than at me as I spoke. Lessons learnt, don’t be rude about people even if they cause you difficulties. Always look behind you. Think before you speak.

Those who have read my other blogs, will know I am a Christian. As a Christian I know it’s important to be loving towards everyone. As a human being, I fail in that all the time. God loves us not because we are perfect, but even though we are not. A church is just a place full of sinners who recognise the fact and are asking God’s help. OK, preach over, back to the blog.

I also seem to have a similar tendency to be blunt and say the wrong thing in what I write. I have noted that some things I say have been misconstrued. Odd really considering that my first blog was about misunderstandings in language. The way carers sometimes say things (“Shall we get dressed now?) Pot, kettle and black jump to mind. Of course, my carers do point out my inconsistency to me, with a raised eyebrow. Especially when I say,

“Shall we hoover the floor now?”

It seems somehow more inclusive saying it that way, it’s also good to say to Mary when she comes back:

“We washed up, we tidied the front room and we got me washed and dressed.”

I feel I really achieved a lot in my deputising. Supervision is an important role, even when it involves me doing absolutely nothing.

I am sure that when I am old and grey. When I am older and greyer. When I am extremely old and totally bald. Well, I am hopeful that at some point before I die, I will become better at thinking before I speak and being gentler in my words. My big mouth does seem to get me in trouble.

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Sink or swim

I am taking bets now, ready for Friday. Will I sink or swim?

If you have read my blogs then you know the difficulties of me getting a bath (Shall we get in the bath?). What you may not realise is that even in a bath I am only partially covered by water. The last time I was submerged in water was years ago, in a swimming pool. Now I have an opportunity to repeat that. Hopefully my head will stay above water, at least some of the time.

One of my carers was swimming at the Wellington Sports centre a few days ago, and noticed a hoist out of the corner of her eye. Maybe that’s an occupational hazard, spotting disability equipment when having a fun time with your boyfriend. She mentioned it to me, so Mary and I went to check it out. What a lovely greeting we received there from the staff, they were happy to welcome us and show us around. One of the duty managers showed us the disabled facilities. They have a lay down bed shower, I want to repeat that so I can soak a bit longer, they have a lay down shower…ahhh. I am looking forward to that bit, never mind the swimming pool, I just want to go for a shower. It consists of a height adjustable soft plastic bed with drain holes, next to a shower head, all within a disabled changing room. After being hoisted onto it, I lie on it and my carer or my wife gives me a shower. Luxury has never been so luxurious. Normally I would then have transferred to a poolside wheelchair to go through to the pool, but that has been stolen! I don’t understand some people. So I will need to use my big power wheelchair on Friday and I used it for the show around, it fits through the narrow gates. If you have never driven a large power wheelchair on a swimming pool side, you have not lived. I felt like I was breaking all the rules. Remember the don’t run, no splashing, no outdoor shoes, no petting rules? OK so I wasn’t petting, what is petting? I didn’t have any animals with me. But my wheels were from outside, is that like outside shoes? I felt so naughty breaking all the rules, I thought I should go fast just so the life guard could shout, “no running, I mean wheeling fast.”

On the poolside there is a hoist/chair to take me into the water. It looks like someone has taken the top of a bucket type school chair and stuck it on a metal contraption that swings around and goes up and down. The whole thing hooks on the side of the pool. One rather large problem though. No, not me, but how to transfer me into the chair. The only other person who uses this hoist chair can momentarily stand, with assistance from her carer in order to transfer. I can’t stand even with assistance, so I can’t transfer without a hoist. Just as well they have one, but it hasn’t been used in a long time. Hence the weeks delay before I can try out the pool. They have to get it charged, tested and receive training. My carer can use it, but the pool staff have to be trained too. Once this is all done I can access the pool.

The whole process on Friday will be. Arrive, get ready in disabled changing room, by using hoist onto the shower/changing bed, hoist back into wheelchair for trip to poolside. Hoist from wheelchair to the poolside chair, swing poolside chair round and lower into pool. Of course I don’t do any of this. At some point I will have put on a flotation vest. In the pool two people will be on hand in case I have a collapse they will have noodles, hopefully not egg ones. I can’t actually swim, so I will just enjoy floating till I get cool. Back out via poolside chair, to my wheelchair via hoist, wheelchair to changing room, hoist onto shower bed, shower…ahhh luxury, wash and dress, hoist to wheelchair, wait somewhere while carer gets ready and home, simple eh? With all the flotation devices and people I shouldn’t sink.

I am really looking forward to it.

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Strangers on a train

“I just wish I could be spontaneous.” This was said by another wheelchair user on the train to Dawlish on Thursday.

He had decided to travel by train, the first time in years. In common with all wheelchair users he was forced to plan ahead. You can’t just leap on a train in a wheelchair. Well, you can’t leap for a start. To begin with there are only two or maximum four wheelchair spaces. Two being the most common, four on the very long trains. When there are four, two are in first class.

Wheelchair spaces double or is it treble use anyway, as pushchair and large luggage areas. Why is there no other space on trains, or buses for that matter for pushchairs or large luggage? Are wheelchairs really just an afterthought? On a train at least you can usually book the wheelchair space. So, you have some right to the space. On a bus you rely on the goodwill of the other passengers to move. No law forces them to move. That’s right, there is no law enforceable about wheelchair spaces. A wheelchair user can be left stranded if an intransigent passenger refuses to move their stuff from a bus or train space. There needs to be a change in the law. Wheelchair users have no option to fold up their chair and sit themselves on their knee as a parent does with a child in a pushchair. Wheelchairs don’t fit down the aisles as luggage does. The wheelchair space is an essential, not a nicety.

One of the many wheelchair space layouts on a train

Back to our trip to Dawlish. Yesterday was the first time I have travelled with a second wheelchair alongside. We do tend to travel at less popular times and have only travelled Taunton to Dawlish. It was an odd experience, two wheelchairs in the two spaces make it tight for turning. I know its supposedly designed for two, but I have a large power wheelchair. Fortunately, the other guy had a smaller push wheelchair. The other wheelchair user was very chatty. What struck me most was his observation that I have heard before and noticed myself. People often think that the fact you are in a wheelchair gives them the right to offer advice. I suppose it’s a natural step on from the help folk offer, people are often very helpful. But advice is a mixed blessing, especially for this chap. He got the same unwanted advice repeatedly:

“why don’t you get a power wheelchair?”

He also got lots of offers to be pushed. As an independent young man, he particularly disliked that. He just wanted to be treated normally. Of course, that’s not going to happen. You can’t be treated normally in a wheelchair; our world is not setup for wheelchairs. Everywhere you go there are steps and narrow doorways. Doors that need holding open, tight corners, toilets that are too small or don’t have hoists etc. In a wheelchair you can’t do housework without a lot of adaptations and help. Kitchens need complete redesigns to be accessible, likewise bathrooms. I understand his desire, but reality is going to fight him. He has the muscular and physical strength to do the things I can’t and is still limited by his surroundings.

For myself I get lots of offers of help, Mary isn’t very tall, so folk can see she struggles operating my chair. I don’t mind that although I find it a surprise when people smile at me, men and women. I don’t mind the women. I guess it’s to be encouraging and positive. The last time this used to happened was many years ago when one of my sons was a baby and I was carrying him on my back. But I guess all the young ladies were smiling at him, not me. It’s just that his head was so close to mine… I wonder if there is a baby just behind my head in the wheelchair these days.

Our trip to Dawlish was to visit my 92-year-old father in law. He has made an amazing recovery after an emergency operation a few weeks ago and a time in ICU. He is an inspiration, how he has pulled round after that. We were out on the sea front walking and wheeling in the unexpected sunshine. What does BBC weather know anyway? On our way to Coryton Cove, it’s one of our favourite jaunts and a place Dad walks to most days. Now the weather has improved, the café at Coryton is open, so we stopped there for a coffee.

I grabbed a table; it was trying to run away. I had a choice of two, one next to a group of French ladies, just drying off from a swim and enjoying a fairly loud chat and even a sing. As we were still recovering from the train ride where just six ladies had impersonated a crowd of several thousand, I was not keen to choose that table. I looked to the other at the far end. It had a mixed group around it, equally loud. The table between the two had people sitting at it. In the end I chose the table near the Gallic ladies. I’ve always enjoyed the odd spattering of French, especially a good song. I have never been able to speak French, my French teacher at school threw her hands up in defeat. I was surprised though as I thought an F in French O level meant fantastic, but apparently it meant fail.

Mary and her Dad were buying the coffees, hence my agonising over the choice of tables. The position I had taken placed the rear of my wheelchair towards a slight step. I kept saying to myself, “don’t forget, do not go backwards.” Fortunately, I didn’t. The coffee was very nice for a paper cup, portable cabin coffee. The wind was light, the sun warm and the company wonderful. We then travelled to the URC Church for lunch.

On route to the Church, we saw the famous Dawlish black swans. They were next to the fountain near the viaduct. I was commenting to Mary on how the wind looked like it was blowing the water from the fountain towards the path, when it hit me, the water that is. Mary decided to stop a moment and enjoy looking at the swans. Not in anyway related to me getting a light shower. How refreshing on a hot day to get a light splash of fountain water, is what I wasn’t thinking as I asked Mary to move on.

Sausage and mash, is there anything better? Yes, sausage and mash without broccoli and cabbage! I couldn’t believe it, I ordered sausage and mash at the URC Church café and expected either onion gravy with peas or baked beans. But not gravy, carrots, broccoli, and cabbage. What is happening to the world? I know there are some serious issues, but I didn’t know it had got this bad. Still at least I could leave the cabbage and broccoli. The URC Church café do a main, pudding and drink for £5, seems good value. It’s also a nice big space for my wheelchair and has a ramp access. They let me have a cheese scone as my pudding as I don’t eat sweet stuff. It’s a choice I made a few months ago. The easiest thing to do when you are mobility limited is to eat. The easiest things to eat are sweet things. I can eat a packet of biscuits, or a bar of chocolate at one go. So, if I don’t have those things at all, it stops me gaining weight. That way I won’t end up needing an extra-large wheelchair or bed. Doesn’t stop me fancying sweet stuff, but I can just about keep off them.

After lunch we had a short time to visit Dads flat before our train home. Dad’s flat is a tight fit for my wheelchair, but just about possible. I was able to sort out his laptop for him. Nothing major, such things would be beyond me now. Just checking why the internet had lost connection. Then it was time to head to the station, the required twenty minutes before the train. You can’t arrive last minute when you have assisted travel.

The sun was really beating down on our trip to the station and on the platform. If you don’t know Dawlish station it overlooks the sea. In a storm the sea overflows the station. We looked out at the flat, glistening ocean. A beautiful end to a very enjoyable day.

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How the station looked when we were there
This is what can happen to Dawlish Station in a storm

A fragrant offering

For Father’s Day, no don’t panic, it isn’t until 16th June. Mary is planning on buying me some aftershave. No, let’s be posh, eau de toilette. No, I’m not posh, some smelly stuff to slap on my chops. In order to choose the right one as a surprise, well maybe not such a surprise, Mary asked the staff at Superdrug. That’s right we use only the highest-class shops. She asked them to spray samples of a few possible scents on cards. These cards came home into my bedroom, come lounge, come everything room (see my blog “Bedroom, dining room, lounge, toilet”) where I smelt them to see which I liked. Having selected three, we visited the shop to have those three sprayed onto my skin. We then travelled on to the Cleve Spa. I don’t know what the staff thought when serving me coffee. Probably something like:

“Wow! Mike smells amazing.”

Or possibly more likely:

“Why does it suddenly smell like a Turkish boudoir in here?”

Either way the coffee shop certainly smelt very different around where I sat. The three scents wafted around on the warm air. I was sitting in the conservatory and the door was open. A few people said hello, I’d like to think it’s because of the scent. But they were probably just friendly.

While at the Spa Mary and I were trying to decide which of the three scents was best. One problem, we both forgot where they had sprayed them. Was it inside or outside my arms and the back of which Hand? We must have looked very funny taking turns sniffing my arms and hands. At one point Mary inhaled deeply then said, “no, that was just sweat.”

On our return home, it being a warm day and the scented cards being left in my room, we were hit by a wall of scent. I am very curious what my carers tomorrow will say. I’ve been in this room for several hours and the smell is still overpowering. Walking in fresh I expect they will either be knocked backwards out of the door or pass out in a faint. They will certainly be in for a surprise, not necessarily a good one. Whether they will be in a fit state to do any work remains to be seen.

Scent is a very dangerous thing. Mind you anyone who ever watched a Lynx advert knows that. After shave can cause hoards of women to chase you down the street. Not that I am influenced by advertising.

Smells are an odd thing. We tend to think only unpleasant smells are objectionable. There are certainly plenty of unpleasant smells in a room that plays as many functions as mine, including as my toilet. But even nice smells can be unpleasant in volume. I can think of many occasions where people have been so generous with their shower gel that the scent of it winds you. Then there are the people who use so much scented talc it literally sucks the air from your lungs. What about those who think perfume only works when a whole bottle is applied or the person who thinks deodorant sprays must be applied for ten minutes at a time. I think we all know such people. Maybe I have embarrassed you into realising one of those descriptions fits you, sorry.

Back to Father’s Day. I only want to mention it twice to make sure it isn’t forgotten. Anyone would think I’m a Father. Oh yes, I am. I’m going to bring in the obligatory statement everyone makes these days. Father’s Day can apply to any significant male figure in your life and if you only have negative male figures in your life, I am sorry to hear that. I also realise for those whose Dads are no longer around it’s a difficult time. I’m saying all this and it’s still a few weeks away. That was such a long statement I nearly forgot what I was saying.

The fragrance was chosen from the three, spray tested on my body and will no doubt be bought. But that of course will be a complete surprise to me. So, I wait with baited nose for my present. Meanwhile I am trying to get to sleep with a rather strong smell of several after shaves in the air.

This morning I called Mary down as usual to help me on the commode. For some reason she laughed when I told her my latest blog was called “A fragrant offering.” I can’t think what smell make her think that was funny.

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Science fiction or fact

“Pass me the proton gun”. That’s what I felt like saying after I heard that one of my tablets is called a Proton Pump Inhibitor. Surely it’s a laser gun, not a tablet, or at least an inter dimensional portal opening device.

It feels like medical science has shot on so fast in the last few years that the technology on my old favourite TV shows look like cave man tech in comparison. I used to think Star Trek had such amazing equipment. But in the early shows they just lay on a medical bed and a gigantic display read out heart rate and other vitals. You can now buy a ring on Amazon that will give you heart rate, oxygen and sleep patterns, a ring! Just about any smart watch does the same, well without the oxygen read out, unless you get an add on.

Sleep monitoring ring

A couple of years ago I bought an endoscope, to look behind a radiator. An actual endoscope. That’s a fibre optic cable that enables you to view into tiny holes and gaps. They use them in medicine to view down your throat and up the other end. My endoscope plugged into my laptop and enabled me to view a video feed on the laptop, now you can get Bluetooth ones that connect to your phone wirelessly and you view the feed on your phone. Of course they say, not for medical use. But they are effectively the same devices, available for a few quid. Don’t tell me no one is tempted to use them medically, hopefully none of my friends.

Then there’s the space age materials, around today. Pressure relieving gels made of silicone, breathable fabrics, super absorbent pads, and all the new polymers, plastics to you and I. Then what about the leap forward in electronic controls. I was looking at, well to be honest I was coveting, an amazing hospital bed on eBay. It was able to profile into a seat from a bed. The controls on it would not look out of place on a space ship. Multiple controls, read outs, even a colour LCD display. These days the simple controls on beds, chairs, wheelchairs and hoists are touch control. They use a circuit board level switches under the plastic cover. The more advanced even use the conducive type found on smart phone screens. These are technologies that didn’t exist when I was younger.

You can monitor most medical read outs via your smart phone and let’s face it a smart phone is one of the most incredible advances out. If you had told me when I was a teenager, much less a child, that I would be able to own a hand held computer that could: communicate with anyone on the planet with video and sound. Run so many applications the mind boggles. Track my location to a few metres. Speak to me and understand me. Translate most languages, well sort of. Be pointed at an object or place and tell me what it is. Take high definition photos and videos. Be a word processor, a desk top publisher, a portable power point device, an excel spread sheet, a complex calculation device, a drawing tablet, a video editor, a photo editor. I haven’t even scratched the surface. If you had said I could own one of these I would have laughed. Or I would have assumed it would be massive or cost thousands. But the vast majority of us now have and rely on smart phones.

My smart phone connects to my Hive heating, can check my cctv cameras, switch on my smart plugs and lights. It also links to my Amazon Alexa system. How much longer before we routinely get smart monitoring and medicine dispensing for dementia patients. I believe it already exists. Or how about a push button food preparation for people like me. Where a meal is taken from the fridge or freezer, heated and delivered to my bed robotically. Personally, although I could see that and even robotic care as possible in the future, I would never choose to replace human beings with machines. You would lose so much. Human contact is not replaceable by machines and it is vital to our wellbeing.

I like technology, it’s fun and helpful. But it has its place and its limits.

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Not so public convenience (Updated)

(This blog designed to advise and help, it is humorous, but also factual. It may cause you to blush)

Wheelchairs are brilliant machines for transport. Power wheelchairs in particular have transformed my life. But a wheelchair is after all still a chair. Think about a chair, you sit on it, it has a solid seat, and no hole in it. So, imagine that you are a man and you need a wee. I guess it may be worse for a woman. You may not want to imagine it, you might prefer to think of something else, I am trying to help for those who would find this useful. These are everyday realities of being disabled. Let’s forget for a moment if you need to do anything more than a wee, that’s a whole other area.

You are sitting down, and you need to wee. Well you might think, there are urine bottles you can use. True, there are. Think then about Wheelchairs, they are narrow, the width of your bottom typically, so your legs are together. Still with me? Maybe you need to act this out in your head. Where does the urine bottle go? If you can put it in the right place how do you ensure, no leaks at a 90-degree angle without injury to yourself. Perhaps you are beginning to see the issue. It is possible but not easy, after all it can be done. Then imagine you are on a train in the disabled space. The train companies give much more space these days for wheelchairs. But typically wheelchair spaces face the rest of the seats. That is also true on many buses. Perhaps we are expected to entertain the crowds while we are there. Getting back to relieving oneself, I don’t really fancy entertaining the other passengers by using a urine bottle in front of them, or under a blanket with everyone wondering what I am doing. It would be a little off putting. Talk about performance anxiety. Fortunately, there is an alternative and I found out about it after I had struggled with urine bottles in wheelchairs for years.

You might think how can Mike share such intimate details publicly. But, if I do maybe I can help others. I didn’t know about these things. I have had to struggle finding out. If my embarrassment can speed up the help for others, then so be it.

The alternative is a Conveen. I believe there are various makes, but I only know about the one I have used. Coloplast Conveens. They are external catheters. Normally catheters go inside the urinary tube in either a man or woman. Conveens, which I think are only available for men, fit on the outside. They look like a condom, but they have an open end with a fitting for a tube to go to a urine bag. They are adhesive, I will come back to that as it causes some fun fitting them. The bags come in two types, ones that attach to your leg and ones that attach to your bed or directly to your wheelchair.

Remember I said Conveens are adhesive, so they must stick all around to prevent leaks. Obviously, you need the right size. Yes, they send you a device to measure the diameter of your manhood. After you have recovered from the disappointment of the fact you are average, boasted in the fact you are large or wept over the fact you are small. You can order them. When I phoned the surgery to give them my size, I had a very funny conversation.

Prescription line lady, “what size do you need?”

Me, “30mm”

Prescription line lady, “is that length.”

Amazed silence from me, then “no, that’s diameter.”

I feel like I should wait a few minutes at this point while all the guys reading this, finish measuring. By the way the diameter range available is 21 to 40mm. Who knew such things eh? Or who wanted to.

There is a special measuring device (See picture below):

Fitting a Conveen, is, let’s say tricky. Think adhesive, hair, preparation adhesive, yes they give you a preparation wipe of extra adhesive. So, everything is sticky. You really need the two pairs of hands you have with a carer to fit it successfully. If you get it right and don’t catch all your hairs in it. Then connect the tube right, it works great. Much better than any urine bottle.

I would say if you are someone who needs to use a Conveen, read the instructions carefully and follow the advice of the rep to the letter. I ignored one bit of advice and realised afterwards why it was important.

Below is a picture of a Conveen sheath, the part that fits over your manhood. It’s rolled up in its package so you can only see the top that connects to the tube, that then goes to the urine bag (see photo below the Conveen) the ribbed part is a strain relief or air gap. This is where I went wrong. It’s important to flatten all this part with your thumb and fingers when fitting so none of your manhood goes into any of it. If it does, then that strain relief part, with the ribbing just acts as a pinching device, not nice. The only bit that goes over your manhood can’t be seen in the photo, it’s all rolled up and sticky. It unrolls as applied. Glue on glue, very sticky. Hence no leaks. So long as you apply it right and have the size right, no boasting. (Also note, there are two lengths available, so check you get the appropriate length, no comment).

Next step you connect the tube from the urine bag and attach it by straps to your leg. Make sure when attaching it to allow for expansion, after all it will get filled up. The urine bags come in different sizes and will need emptying, so leave the drain tap accessible and check it’s closed. It’s easy to accidentally knock it open if your carer pushes it back under your trouser leg after draining. By which you will realise they have a drain tap at the bottom and your carer or partner has the enjoyable job of draining it, see photo below.

Conveen sheath in its package. Note the ribbed section, avoid inserting your manhood into this bit by squashing the top of sheath when putting it on.

Leg bag, pipe at top connects to the sheath, see below for close up of the drainage tap

Note, make sure tap is closed after draining.

At the end of the day you may be thinking, but how do you remove a sticky rubber thing from such a delicate area. Your eyes may be watering in anticipation. Don’t panic, they thought of that. There is a non stinging release spray that is amazingly effective at removing the glue. It’s a pain free process.

This is the glue remover spray.

Have I freaked everyone out sufficiently and caused everyone to need a lie down or at the very least some counselling? Seriously, I hope I have helped to explain and clarify some things and point you in a helpful direction.

Let me just emphasise these Conveens have been life changing for me. I can only recommend the Coloplast ones as they are the only ones I have tried. They sent me samples to try first. They work brilliantly, the only failure I had was when I applied it wrongly the first time. Every other time since I have had no issues. So follow the instructions carefully.

I read this blog our at a writers group in Wellington and one big issue that became apparent was, what about women? There are internal personal catheters for women, but that is not as easy or convenient.

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Into the Ark

The plan was a nice day looking at the animals, but as the taxi neared Nailsea we began to wonder if the zoos’ name may be slightly prophetic.

For weeks we had planned a day out at Noahs’ Ark Farm, it’s a zoo near Nailsea and Bristol owned by friends of ours from our days in Nailsea. The planning had started during the most unusual April ever, when the weather was more like summer than spring. Easter I’d actually got sunburnt. Understandably we were expecting the weather to be even better in May. Have you noticed how the weather seems to read your mind and enjoy surprising you? Gradually as you will have noticed, if you are reading this live, the weather had been getting colder and wetter.

To go out for a day involves a lot of planning for us, so we can’t just wake up one morning and say, “weather looks nice, let’s go.” We decided on a date, Thursday May 9th, booked a taxi and had already organised early morning care with my micro provider, I have both an agency and a micro provider. My micro provider tends to often cover early mornings and evening visits. She is a really lovely person and very good at her job.

We kept looking at the BBC weather app in the weeks before, first it showed colder, overcast weather, then rain. Then a few days before we were due to go, it showed a break in the rain. We still hadn’t booked firmly with the taxi at that point, just provisional, so we decided to confirm the trip.

The day before was heavy rain, but we hoped the air was just clearing. On the morning of May 9th it was clear and dry; in Wellington. Our hopes rose. I checked the BBC weather for Nailsea and it showed rain all day, what do they know.

As we were going to be out all day I had a Conveen put on. These are external catheters. I will look at those in another blog, because they have caused much hilarity, but they are also extremely useful in my situation.

Knowing it was cold and rain expected I was wrapped up like an Eskimo. I have faux fur lined leggings that I sit in, on the wheelchair. Then a coat, hat, scarf, gloves and a lined waterproof cover over the top. People look jealousy at me and often comment that I have the right idea. Because the back of the waterproof cover goes over the head rest I look a bit hunchback.

Mike all wrapped up

We were travelling with our favourite taxi firm, Archies cabs, his taxis are bigger than most. So I can easily fit into one of his cabs and slightly recline. I have to make sure my shoulder straps are tight and neck brace on plus my arms under the restraints. That way if I have a collapse I don’t get bounced too much. I did have a collapse and all was well. Archies cabs have good suspension. Paul, the owner was driving and he is careful on bumps.

Most of the journey was fairly clear weather, just the odd raindrop. As we neared Noahs’ Ark the Biblical floods started. There was not just water pouring out of the sky, but water forcing it’s way back up from the drains! Water from above and water from below, if you know the Bible story you will understand the reference. Mary and I didn’t know whether to laugh or cry. But we decided we would pray that there was a break in the weather, and we would make the best of the day.

Arriving ten minutes early we had to shelter in the bicycle shed, but a kind ticket office staff member let us in early. I don’t think I have ever spent as long buying tickets and reading the signage. I am sure it was not because that bit was sheltered and the rain looked heavy. When we did venture out the rain had eased. Even so we headed for somewhere warm and inside, the reptile house.

One of my previous carers gave Mary and I a pink bendy toy. Really it’s a plant clip to hold a plant against a stick, but we use it as a mascot and call it Kermit. He travels with us and gets photographed in various locations. He posed by one of the reptiles.

We didn’t need to shelter in an ark, there was no Biblical flood. Although there were some bouts of heavy rain and it was chilly. We also had sunshine, long periods of dry weather and times when it just lightly rained. Our prayers were answered. We also met lovely people, both other visitors and the staff. Everyone was helpful kind and understanding.

Mary feeding the meercats
Mike wrapped up next to lion
Lion eating
Mary feeding lambs
Elephant close up

At lunchtime we went into the café. The tables were laid out in rows. Normally as I am in a wheelchair I go on an end. But I fancied a window view, so I weaved down between the backs of peoples seats in between the tables to the window. It worked ok getting there, but on the way out more people had arrived and one poor child had to be lifted in their chair, by Dad, out of my way. It may seem I was being unreasonable going to such an awkward place, but why shouldn’t I have a window view occasionally.

Mike having lunch

We managed to see a number of the talks and most of the animals played ball and came out to prowl, frolic or at the least feed. Probably the most exciting talk was the Wings of Wonder which, given the weather was inside. You haven’t lived until various large birds of prey have brushed by your ear at speed.

Mike & Owl

As may be expected from my previous posts, I had several collapses during the day. The zoo was so empty, maybe twenty or thirty people, that we could always find a quiet sheltered spot for me to recover.

Mike reclined in wheelchair

We also bumped into someone we knew from our Nailsea days who works there. It was so lovely to catch up a little.

Since our last visit Noahs’ Ark has improved it’s disabled facilities greatly, including a changing places toilet. No, that’s not where you become someone else. It’s basically an adult changing room for disabled. Think baby changing but with hoists to do the lifting. They have one in Weatherspoon’s Wellington. It’s new at Noahs’ Ark and everything is very swish. Lots of room to manoeuvre inside.

Changing places toilet
Changing places bed

I was able to get most places, only a couple of the animal enclosures had steps. The maze is not accessible, and there are a few platforms with steps. The exciting bit is getting around the site in a power wheelchair. Some parts are an old farm with concrete drives, other bits are very steep. Everywhere has tiny bumps and indents, plus cambers on the paths for drainage. The gravel bits have various size stones and in some places the stones have gained bigger holes. Overall the ride around is thrilling. Not sure everyone would enjoy that, but I did. Of course not every power wheelchair user would attempt to go everywhere I went. I also travelled fairly fast. A push wheelchair would not be as exciting, but you would need strength on the slopes. All of this is explained in their accessibility brochure. I find they gave the best details of anywhere. It is an accessible site, more accessible than most. As with all such places you just need to be cautious. Because I am not cautious by nature it is just as well my Quickie Salsa M2 was able to cope with the terrain.

High view of Noahs ark park

The only thing that would stop us going lots of times is the taxi cost. We had to save up for this special treat. You might wonder why we travelled all the way by taxi, it may sound an extravagant method. But, the taxi to Taunton Station plus train fare and a taxi from Bristol station to Noahs’ Ark is the same as all the way by taxi. It was a fabulous day out and the weather didn’t dampen it.

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It’s a Smart life

Back in 2014-2015 I had a Mother. OK so we all have Mothers, even if we’ve never known them and I’ve had one since birth that I do know. But this Mother was a 6” white plastic electronic unit with a big wide bottom and a narrow top, blue glowing eyes, red lips and a tendency to make weird noises. Don’t say your Mum’s like that, it’s rude. My unit was a Sense Mother, one of the first the Internet of Things (I.O.T.) smart devices. From such humble early devices, it’s a surprise the idea ever took off. My Mother was a crowd funded device, made in France and unfortunately the company has now gone bankrupt. Probably because Sense Mother didn’t do enough things to make it useful.

Sense Mother

The idea sounded great back in 2012 when they first talked of developing it. The concept was of a smart unit that would monitor your life and give you prompts. The slightly creep advertising talked of a mother better than your own. It certainly wasn’t that. But as someone who needed prompting to take tablets, monitor temperatures and wanted to know when people came in and out it sounded great. In practice the reality was more limited. Little devices called cookies were attached to things you wanted to monitor and when they moved the Mother unit registered their movement and checked the temperature around them. It’s ability to register movement was limited in distance and type. So, I could know if I had picked up my tablet pack and I knew when Mary returned home by the front door monitor clunking. But beyond that it really only enabled me to monitor temperature in different rooms.

Fast forward to 2018 and the I.O.T. had leapt forward. Amazon Alexa devices, Hive heating, smart plugs, smart cameras, smart switches all connected and controlled through the Internet. They could be controlled via voice or directly on an app. Enabling me to radically improve my setup last year. So that now I have Amazon Echo devices in all rooms. The one next to me even has a small screen. I can use my voice to call any or all other rooms. Which means wherever Mary or my carers are (including the garden, I have a portable) I can request help. If I don’t know where they are, I just broadcast everywhere.

Echo Show, like I have by my bed

I can view any of my external or internal cameras by requesting the relevant one with my voice, “Alexa show front door”. I also have a Fire TV stick, so that I can display the front doorbell come camera on the TV. I can even talk to a person at the door. The Hive heating gives me control of the heating, “Alexa change the heating to 20 degrees”. Smart switches and plugs give me control of some lights, “Alexa all lights on.” I have control of devices around the house. Before I get transferred into my reclining chair, I can turn on my ripple cushion by voice. When we go away, I can turn off the ripple cushion on my bed. There are several switches that cannot be changed as they are too complex and therefore too expensive. The ones I have changed have been presents for Christmas, Father’s Day and my Birthday. The Hive heating and Alexa were a grant to give me control of the heating from my bed. Most of the smart cameras I won in free competitions. That’s how to have a Smart house cheaply.

Hive Thermostat
Netvue Doorbell camera

One of the big frustrations of limited mobility is lack of control. Smart technology gives me back at least a little control. I would love to have electric curtains/blinds and even door controls, electric door locks do exist, but those are beyond my means. I would also love a smart hoover and a smart mower but the same applies. There is a lot of smart tech out there that I will never be able to afford.

On the none smart, but useful to control side, I love the fact that I can operate the control on my hoist and the control on my profiling bed. It’s also wonderful when I am in the park or a large building so I can operate my own wheelchair. A lack of control is not pleasant. I am so pleased to live in this modern age with modern technology. The speed of technological advance in the last few years is amazing.

I know a lot of people worry about smart devices monitoring their conversations or smart cameras monitoring their actions. For me the control and convenience outweigh the loss of privacy. Let’s face it, I don’t get much privacy in my life anyway. So, wherever I can regain some control I will.

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