The long goodbye

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

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

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

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

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

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

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

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

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

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

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A walk in the dark

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

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

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

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

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

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

Greggs on Wellington High St (Photo Google Earth)

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

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

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

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

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

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

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Mistakes, I’ve made a few

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

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

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

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

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

Not like this
Like this

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

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

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

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

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

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

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

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

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

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

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

If you want to know more, check out a local Alpha course https://alpha.org

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Music, barking dogs and dancing lizards

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

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

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

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

It was a little damp

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

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

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

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

The sun came out and we moved

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

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

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

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

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A Shocking Trip

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

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

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

Waiting for the test

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

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

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

Hoisting onto stretcher
On stretcher and strapped in

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

On Wellington High Street

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

At Musgrove

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

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

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

The machine that was used

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

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

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Who said it’s grim up north

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

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

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

Mary at Taunton Station

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

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

Its a squash

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

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

My view from wheelchair, feel exposed enough?

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

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

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

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

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

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

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

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

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

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

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

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

Bed in Chris’ front room

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

Preparing floor

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

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

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

Local hall

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

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

My view on return train

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

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

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Our time in Creech St Michael

(This is the continuation of our autobiography)

See part 1 of our autobiography

We lived in Creech St Michael between 2010 and 2016. It was quiet place to live, so long as you ignore the constant thrum of the M5 motorway. My first vision of Creech was blossom on the tree outside the bungalow we rented on West View. It was a riot of colour and very impressive. Our neighbours there were wonderful, one in particular used to take Mary shopping each week after I could no longer drive. By that statement you will realise that when we arrived I could drive. That ability only lasted for the first 6 months.

We moved back down to Somerset from Hartlepool, where we had moved for my work in 2005 and had lived till 2010. After my health took a nose dive it made sense to move nearer Mary’s elderly parents who live in Dawlish, now just her Dad is still alive. We also wanted to move near a Church that we were happy to be part of, so as Taunton Family Church was just getting started, we joined them and moved to the area. I was limited, able to drive an automatic, not having collapses, but unable to walk more than a few yards. So, I had a wheelchair to go further. I didn’t often go out at all. The Church was very supportive to us both with our move and day to day. It was only after we could no longer travel into Taunton that we discovered there was a brilliant Church on our doorstep, literally a few hundred yards away. Creech St Michael Baptist Church. It’s this Church we are still members of. It’s odd how things work out. God had a plan for our lives. He had placed us very close to a brilliant Church at a difficult time.

My health got worse and the collapses came back. I hadn’t had them for a few years, hence being able to drive. Once they returned, I had to hand back my driving licence and I found that the wheelchair I had was not supportive enough. So, I gradually became totally limited to the house.

To give you a picture of what this was like as it developed over time. Walking outside I collapsed on the concrete paths, steps and in our garden a few times, I am not a quick learner, but eventually I stopped going outside. I also collapsed in the bath, fortunately I didn’t drown as I don’t have it deep and we had a short bath. After that there were no more unsupervised baths, but the second time I collapsed was with Mary present and a very shallow bath, so we decided even that was unsafe. Other times, I collapsed head first into my hot dinner during meals, not once but a number of times. I also collapsed onto the hard kitchen floor with things in my hands and even in our small bathroom in such a way that my head was behind the toilet. By this time we had the Piper help system installed, but they took ages to come and often just sent an ambulance anyway. I was then pretty much limited to a chair for safety. If you read my other blogs you will know I had some silly times even on a chair. Alongside this my legs had already become weaker, stiffer and less responsive so the collapses were not the only limitation to walking, plus with everything else health wise going on I was struggling anyway. The district nurse and OT came with adult social care to do an assessment of my care needs. They were horrified that I was spending day and night in a riser recliner chair. That’s when they gave me my first community bed, what I call a hospital bed. (If you read my blog “The cot sides”, then you will hear how I ended up with bed sides.)

(If you read my blog “Keep on rolling”, you will not only read about my previous wheelchairs, but the new ones I got in Creech and the problems and blessings of having them.)

Creech bungalow was totally unsuitable as it was too small to operate my wheelchair inside and the doors too narrow and offset to exit and enter easily. As we were renting at the time, we put our name on the Council housing list and waited. We had letters from the GP, OT, district nurse and local counsellor all saying how unsuitable the bungalow was. We waited three years. Not because nothing suitable came up, three suitable properties came up, but each needed very minor modifications, one example is a small ramp was needed for one. The Council said that made it unsuitable. Eventually after three years we were offered a new build bungalow. At that same time, we came into an inheritance and so it was right and appropriate to buy a property. We chose a flat on the same complex as the bungalow we had been offered, it was a 24/7 care complex. We were in possession of the contracts, had them signed and ready to return in April 2015. If you have read my blogs about what happened, then you will know about the miracle that happened in May 2015. I regained my ability to walk and the collapses stopped, for two and a half years. The 24/7 care flat was no longer appropriate. It was during this time we moved to Wellington in July 2016.

Those read my blogs will know I again lost my ability to walk and most of the other issues returned in January 2018. For my theological musings on that read my blogs “You can do it again” and “How can it be OK?”

Creech was a great place to live in terms of the people, Church and environment. But the bungalow and my health experience there were not good. I would love to live there again, if only I had easy transportation. It would be great to be near our Church and our friends there again.

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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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Home is where the heart is (Update)

We all know the expression, “Home is where the heart is.” It expresses the idea that home is not a building but a place we connect to emotionally. Of course to connect to a place emotionally it has to offer something that touches us. That could be a memory about where we grew up, where our children were born, our first home, where our parents live or something that touches our feelings about our past. But emotions on their own don’t make up the complete human experience. We need physical things, comfort, warmth, convenience, accessibility, and other our practical needs meeting. A home has to fulfil those practical as well as emotional needs. Sorry to state the obvious.

For most people finding a place to live is a big issue, a major life decision and a mammoth task. When you are disabled, especially a wheelchair user, the issues are compounded. A suitable property has to have wider doors and corridors, more space in the rooms. It needs level access and a wet room. Ideally a ceiling hoist or a suitable room to fit one, from the bedroom to the wet room. The kitchen needs to be accessible if you are able to use it at all (I can’t, but other disabled people can). There often needs to be a call system to summon help. Parking, if any needs to be wider and nearby. These are just the more obvious aspects.

Think about your current home, look around you. How wide are your doors? Do you have a downstairs toilet, let alone a bathroom. Does your front door have any ridge or step? Even a 1” step is a bump for a wheelchair. How tight are the angles into your house? Think about your neighbours, friends, families houses. How many have level access, by that I mean no bumps at all. How many have wide doors and corridors? How many have downstairs toilets or showers?

Wheelchair by my bed while I am lowered back into bed by ceiling hoist.

You may think that I am asking irrelevant questions that don’t apply to you. If you are able bodied and fit. Why should you worry? Let me explain. First there is something that happens to us all, we grow old and become less able bodied. Most of us have relatives like that, don’t we want them to be able to visit? Even if you don’t want your relatives to visit, one day that will be you. Second there is accident and illness. All too common. I was 100% fit and well in my early 30’s when illness first struck me down. I have friends who have had serious accidents. Yes, it can happen to you, or a family member or a friend. Don’t you want them to visit. What if it happens to you, will you be able to stay where you are? What houses are there suitable?

Accessible housing is a real issue for everyone, not just those of us in wheelchairs. It will increasingly become an issue with an ageing population. We need to be aware and think about these things.

There is a big problem in this country with availability of accessible properties. There are far more disabled and elderly people than disabled accessible homes being built, see the report from Habinteg:

We need to lobby for improvements in this situation. The Habinteg website has ways to do this

It also tells you a lot more about the problem than I have.

Update the government have responded to the report:

http://www.google.com/url?q=https://mailchi.mp/habinteg.org.uk/new-habinteg-research-released-whats-the-forecast-for-accessible-homes-1247221?e%3D7bbdcfa79a&source=gmail&ust=1562313550925000&usg=AFQjCNHynGHbnenXoBuGl85PvcGTeW7kaA

I have written a blog (Bedroom, dining room, lounge, toilet) about our own situation.

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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Memory

(Not about health)

When you spend a lot of time in bed, you get a lot of thinking time. My brain is not as sharp as it was, but I do find myself musing on many things. The other day, after I was promoted by a song, to blog about Mary and I meeting and marrying, I started to muse on memory. These are my thoughts.

You hear a song and it brings back a memory of your first love, or in my case only love. Smell some pickle and you are back at school trying to force down a serving of chewy processed ham, dry peas and watery tasteless mash all served with a dollop of strong-smelling pickle. Touch a cold piece of marble and you are a tearful child again, on a cold wet day standing by a grave. Sad faces looking down at you. See a crackling fire and you are gathered around a Christmas hearth warm and cosy, excitedly waiting to hang up your stocking. Our senses connect to our memories in powerful ways, both negative and positive.

Memories, both long and short term are used by magicians, marketing people and politicians to influence and manipulate us. I watched an episode of Britain’s Got Talent where Simon Cowell apparently had his mind read by a police dog. I will make no comments about how hard that would be. But in this instance the way it was done, look away if you believe in magic, was by trickery. All the performance before the ‘mind reading’ had emphasised and reinforced the idea that the dog was ‘heroic’. The policeman had said it, and a video had demonstrated it. So that when Simon was given a ‘free’ choice of word to describe the dog, there was only one possibility, ‘heroic’. Which of course had been planned and pre engraved on the dog collar. Similar tricks are done by magicians all the time. Words are imprinted into the subject’s memory by suggestions visually and audibly. A typical trick is to lead a person into a room, with images and physical representations of a particular word all around, the magician also keeps repeating the word and the result is to imprint the word into the memory of the subject that way. Then the magician just says, “think of a word.” And the subject will think of the imprinted word. It seems like magic when the magician produces a ready produced document with that word on it.

Marketing people do a similar thing with adverts. Not imprinted words, but ideas and feelings attached to our memories are connected to a product. We think we are not influenced by adverts. Yeah right! Adverts are just much cleverer than ever before. They don’t say “buy this product, it’s great.” What they do is build up a feeling, a desire or aspiration within you. Then show you how the product meets what has become a felt need within you. Take a car advert, any car. You would think they would advertise its features, safety, economy etc. But those things tend to run in text along the bottom. The adverts are all about feelings, impressed on you by visual and audio influences. You are sold an experience an idea a feeling. They tap into your positive memories, really what they do is imprint thoughts about this car alongside those memories, connecting them. If you were in this car you would feel free, excited, comfortable, respected etc. You would be having fun, enjoying life, carefree and so on. Your experience of life would be changed. In the advert the roads are empty, the children if any in the car are happy and occupied. The weather is either sunny or at least dramatic and exciting, never dreary and boring. The advert seems to say, ‘this car would change your life.’ ‘You would be a better person.’ ‘People would respect you more.’ Not this car would get you from A to B economically, comfortable and safely. Sight and sound are used to draw on your positive memories. It builds up a feeling of desire, warmth, aspiration, content, fulfilment, happiness etc, that you then link to that car. It’s all trickery. This is used for all products and is even evident in shops and online.

Next time you are shopping look around you and see the imagery, sounds and sometimes scents that are there to trigger your positive memories. What is it connecting to in your memory? What feeling is it trying to engender within you? Comfort, warmth, hunger, desire… Are the marketeers trying to take you back to your youth? Or are they reminding you how hungry you feel. One thing is certain they are playing with your feelings and emotions at a level you are probably unaware of. Interesting isn’t it, when you look for it.

Politicians now use the same techniques. That’s the real way we can end up with people in power who most of us scratch our heads about and say: ‘how did they get elected?”. We are much more easily manipulated and managed than we realise. Our memories both positive and negative can be touched on by clever rhetoric and images. People and parties repeatedly bombard social media with those images and the regular news with sound bites. So that the consensus becomes steered towards whatever they want. It’s not hard to turn a lot of people against a whole people group, idea or religion. Or towards an idea. The sad thing is that many people can end up believing that they always had those views and fiercely fight to defend them. If we are not careful, we can get swept along on a wave of emotions that taps into deep seated memories and feelings from our past. Facts, reality and common sense can all go out of the window in the face of such an onslaught.

I make it all sound a bit hopeless, like we are manipulated and can do nothing. But that is not the case. The first step to undoing manipulation is recognising it. We have intelligence and we can use that to counter the influence. We are not dumb animals to be led by the nose. Yes, we do get a spark of feeling from a triggered memory. But if we realise that it is being deliberately triggered then we do not have to respond. Look for the clues. Let me give you a practical example. As I watched Britain’s Got Talent, I knew the word ‘heroic’ was being imprinted. So that when Simon Cowell was asked for a word, I could see the word ‘heroic’ was going to be asked for somehow. I would have chosen another word. OK so that’s an example that would spoil a trick. But it’s a principle and works in every situation.

Ask yourself why is it that some political parties put out the images they do? What is the natural response to the images they propagate? What is the purpose of their sound bites and headlines? Are they just tapping into your emotional response? Do you want them to lead you by the nose that way? Choose your own response. Better still look at what they are talking about and search deeper. Don’t look at their images and news stories and respond in the obvious way, find the deeper truth. I find that more digging will unearth a greater truth beneath.

Let me give you a practical example a few years back an image was circulated on social media of young Arabic men getting off a boat. The headline suggested these were the “so called refugees fleeing persecution.” Going on to suggest they were young men seeking jobs under the guise off fleeing persecution and asking where are the women and children we are supposed to be helping? In fact, the photo was of young men on a ferry to Italy on their way to work, legitimate work. They were not claiming to be refugees or asylum seekers at all. But the photo had a huge impact turning people against asylum seekers. Many people believed the image at face value without checking it out. The storm of vitriolic comments on social media was shocking. Such manipulation of images plays on our minds to negatively influence and turn us against those in genuine need. In the case I have given it worked the way the people planned. They manipulated many people by visual trickery, drawing on deep seated emotions and feelings. This technique is used a lot by politicians and those who want to influence us. Be wary, if you see a picture, don’t just believe that the headline is true to the picture or even that the headline itself is true. Do wider research on many different sites.

Headlines are not truth. Let me repeat that for emphasis ‘Headlines are not truth.’ They are snippets of truth at very best and very often distortions of truth. You can distort any truth by how you phrase a headline. The image you put with a headline can totally transform our emotional reaction to it. Look deeper, don’t allow sound bites, images and headlines influence your emotions and thus your decisions. Images are also not truth. Think of images of yourself, how a photo taken out of context with an inappropriate headline could paint a complete lie. Images are not truth. At this time of crisis and division in our country in particular we all need to be very careful not to react quickly to gut instincts and emotional calls. Don’t be tricked by sound bites, headlines and images, whether on social media or the regular media. Our minds are being played with, we need to be aware and take back control of our own thinking.

What about with adverts and shops. Ask yourself how am I being manipulated? What am I meant to feel about this product? Then ask real questions about it. If it’s a car, what about economy, safety and comfort. If it’s food what about nutrition, flavour, environmental issues. Don’t be led by the nose. Advertisers are happy to lead us the way they want. Break free and go the way you want.

Memory is powerful and the effect it has emotionally on us seems to rule our actions. But our intellect can over-rule if we chose to let it. All I am saying is that we have a choice, our emotional memories and feelings don’t have to rule our actions.

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Holding on (Poetry)

(A poem by Mary Nevin)

(Read the words with a hard northern ‘a’)

Weighted down by leaden thoughts,

Things to do and things to sort.

The bitter taste of times gone past,

Fill my mind in an instant flash.

Painful thoughts do corrosive harm,

I need to find God’s healing balm.

Slip, slide or stick

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

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

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

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

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

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

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

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

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

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

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

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Spring Hope (Poetry)

(A poem by Mary Nevin)

A life brutally stripped,

Pruned jagged and raw.

Blasted by winter winds,

Drenched by freezing rain,

Shocked into premature dormancy.

_____

Now awoken by coaxing warmth.

Buds of fresh hope shoot through,

Branching in new directions.

Tender leaves unfurl;

Shimmering, dancing,

Delighting in the joys of spring.

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