You’ve had your chips

Chips, chips and more chips. I really love a bag of chip shop chips. After her stroke a couple of years ago Mary must avoid fatty food, so I don’t suggest that we go out for chips. But when Mary goes to visit her dad and I have a carer for the day my first thought is ‘chips’. Well maybe it’s my second thought after getting ready in the morning.

There are two places locally we go to eat our chips. The Quaker garden, a little quiet garden behind the Quaker meeting house, off Wellington High Street and Wellington Park. Often, we will eat chips at the Quaker garden and then carry onto the park. That way the chips stay hot as the chip shop is near the garden.

Wellington park, in case you’ve never visited, is a great place for a wheelchair. Getting there is not so easy. Wellington High St is an obstacle course and whether you take the narrow alley by Lloyds bank or the car park it’s a bumpy ride. Going across the path by the football field and cricket club is like a potholing trip. That is if you are trying to avoid potholes. There are some places where that’s impossible and the articulating suspension on my wheelchair gets a good workout. The tiny car park opposite Wellington Park is best to avoid at school arriving and leaving times. It’s not big enough for all the cars that try to squeeze in and it’s really a case of taking your life in your hands when weaving through the cars.

Once you enter Wellington park you feel you have stepped back in time. Of all the parks I have visited it is one of the prettiest. It’s also one of the best used by the greatest age range. There’s a family feel about the park. Some parks feel like spaces for the young or old, Wellington park feels like a place for all. The borders, though a bit of a blast from the past, are beautiful and well kept. There are winding paths, surprises around most corners. A bandstand that has live music for three months every summer and many events over the year. There is also a large and beautiful pond with a Chinese bridge at one end next to a waterfall.

There are trees to look at and even climb, a classic fountain and a fun and almost invisible feature, a ha-ha. If you don’t know what that is, then think invisible fencing. A drop off in the grass to give you an unimpeded view from park to countryside. In these days of health and safety gone mad, it’s survived without fencing.

The best and most wonderful things about Wellington park for me are that it has new tarmac paths, they are super smooth and I can operate my own wheelchair in the park. It’s quiet enough at the times we go to not risk the safety of others.

There is an old fashioned four-sided covered seating hut. One wet day I was visiting the park with a carer and we decided to shelter there. The lowest part of the shelter still had a 2” step up to it. I positioned my wheelchair and powered up it, the wheelchair lurched up and the front two of the six wheels flew in the air, the whole chair seemed to fly. It didn’t really, it just felt that way. With a bang the front wheels hit, and the chair stopped about an inch before the seat. I hadn’t noticed what a white complexion that particular carer had before that moment, nor did their complexion seem as white later on.

The other really nice feature of the park is a beautiful house built around 1900 that is still lived in by the park keeper and family. I have seen a glimpse inside through the front door and I hear the inside is really lovely.

Mary and I go regularly to Wellington park and I go there when I can with my carers. It’s a little haven of peace in the middle of Wellington.

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Music at Wellington Park

Whose been eating in my bed?

There is a mystery I have yet to solve. Where do the crumbs come from in my bed? Some people try to suggest I am to blame, I know that isn’t true.

Cornflakes, crisps, bits of rice, crumbs of bread, even a piece of cheese, have all found there way into my bed. I can only assume that when I’m not looking, an army of little munchkins picnic on my bed in a very messy fashion. You may well assume it’s me, eating in my bed and dropping crumbs left and right. Funnily enough that is exactly what my carers say. You could blow me down with a feather at the suggestion. Of course it’s not me.

I will give you an example. The other day one of my carers was giving me a therapeutic massage and she stopped while down no my back, saying, “there’s a crisp on your back.”

“I wonder how that got there.” I said.

You won’t guess in a million years her answer. She suggested I’d been eating crisps in bed. As if the mere fact of eating crisps in bed, which of course I do, would cause them to drop on my bedding. What a foolish notion.

There have been similar suggestions for all the other crumbs. I am certain that none of the food I eat in bed goes anywhere other than my mouth. I never see any of it fall, and if I don’t see it, then it can’t have happened. Isn’t that a general principle of life? I’m sure I’ve heard people use that excuse before. Besides the crumbs I see in my bed look nothing like the food I eat in my bed. They are tiny crumbs, the food I eat is much bigger.

Forgive my little bit of silliness, I find nonsense a good way to combat all the stresses of the day.

Me not dropping any crumbs

“You can do it again.”

(A theological musing about healing)

“You were on your feet once; you can do it again.” What great, encouraging words. As if somehow, I had anything to do with God healing me in 2015. There is almost a hidden suggestion that it involved some positive thinking or right attitude on my part. In reality I was neither waiting nor ready to be healed when it happened. God just did it. I lacked faith at that time, I was quite distant from God in 2015. In fact, I would say the only person who needs faith with payers of healing is the person praying. There was one point where my faith kicked in. That was once I knew and felt the reality that I had been healed. Let me repeat that in another way for clarity. Once I knew, absolutely that something had changed, then I acted in faith and stood up. At that point I had a choice, act in faith and accept that change or act in disbelief and don’t.

There is a lot spoken by some Christians about “naming and claiming” healing. You cannot claim what you do not have. That would be folly and stupidity. Like a blind man claiming he could see when he can’t. If a blind man is healed, he knows it because suddenly he can see. That’s the same with all healing. When you are healed, something changes, and you are healed. Not because you name the healing and claim, “I am healed, and I am believing it.” But because it actually happens. The problem comes, because it’s easier to say someone else lacks faith, when they are not healed if you pray, rather than accept the truth. When we pray for someone to be healed, either they are healed, or they are not. It is the faith of the person praying that is significant.

Don’t mishear what I am saying. God can do anything, and He does amazing things. God heals today in the most incredible ways that are beyond all medical explanation. I am only talking about how faith, the faith of the person praying is so significant. Further I am emphasising that the people prayed for don’t have to be full of faith to be healed. Jesus raised the dead; they certainly didn’t have faith. Jesus healed those at a distance who didn’t even know he was praying. Friends brought a sick man to Jesus. Jesus picked people from a crowd to heal. If you are sick or disabled it will not be how much faith you have that makes a difference to whether you are healed.

When Jesus prayed for people, everyone was healed. That is no surprise, his faith was so great. When the early Church prayed for people a similar pattern, because of their faith. If we do not see as many healings, it is our faith, the faith of those praying, not those being prayed for that needs to increase. I believe that is why we see fewer healings today. We as a Church are less full of faith as we pray for healing. But I also believe we are in a time of partial revelation of the kingdom of God. There is a time coming when there will be no more death, sickness or war, but now we only see glimpses of that coming time. Do not condemn those who are sick or disabled when they do not leap up when prayed for, it is not a weakness in them. Pray instead to Jesus that he grants you more faith as you pray.

For me I was able to walk after years of not being able to. I did not suddenly gain extra faith on May 3rd, 2015. Mary was granted extra faith that night, as a gift of God and as she prayed, I was healed in Jesus name. This is not ‘faith’ healing in an abstract sense. But healing by God in Jesus Christ’s name.

When my ability to walk stopped in January 2018 it wasn’t a lack of faith and if God gave me the ability to walk again that would not be because I had gained more faith. I don’t know why my ability to walk ended, but I don’t have to understand. I just accept the healing as a gift that lasted two and a half years. God didn’t say this is until you die when he healed me in 2015. If you think about it, no healing would ever be that. As we age our bodies become frail and weak, so sickness always returns.

When people say, “you can do it again.” You can now see why I see that as folly. I did nothing the first time. If people say well done, they have missed the point, it was all God, not me.

I find it easier not to focus on whether God will heal me again. It is better to live for now, in the gift God grants us than in a hope or expectation of what might be. Living in a future hope of healing only leads to frustration. If I spend my days hoping I will be healed again then I am not embracing and enjoying now. Today is all we are promised, tomorrow is a possibility, but not a definite. Live in the moment, knowing and trusting God to provide and care for us. That’s what I try to do. I wrote before about how I find peace and joy by trusting God and seeing what he gave me as a gift. To focus on what I do not have would just negate that peace. I am happy to be prayed for and perhaps God will again grant me the ability to walk. But my life can still have meaning, joy and peace as it is.

Climbing stairs in 2015

Disability and the state

When I was younger, I studied social work as an ‘A’ level at night school. My enduring memory is of the night I turned up to watch a cine film. This was the 1970s and you first need to know I have played with and used cine film and projectors since I was very young. The teacher, a woman, was trying to thread a 16mm film into the projector. I went over to offer to help as I know what I’m doing.

She said, “what makes you think you could do this better than me? The fact you’re a man?”

“No, the fact I’ve used cine projectors for years,” I said.

She was still reluctant to accept my help. I realise she was a bit of an extreme feminist, but that event and the course material from the 70s forever influenced my view of social work. I know that’s very unfair of me, but I’m human, I jump to quick decisions about people and ideas. I will give myself some credit though, I am open to changing that opinion.

I had the mistaken idea that social workers were a group of misguided do gooders. I also thought they were set-up to sort out the “dregs” of society. Clean up the mess that no one else was interested in. I certainly didn’t see them as having any relevance to me.

Imagine my shock then when in 2013, I was assigned a social worker for the first time. Even being in contact with Adult Social Care felt like I’d failed. As if somehow it reflected on who I was. I doubt I am alone in feeling that.

Let me take a step back even further than that. I was first unable to work due to illness in 1994. The private company I work for fired me for being long term ill. I suppose that’s fair enough as I had started up and headed a department that was marketing a brand new range of products. Without me, there was no department. They closed it after I’d gone and gave the business I’d hard won directly to the manufacturers. I was suddenly left unemployed with a family to support. Due to my illness Mary had to be around to look after me and couldn’t go back to work.

I grew up believing in hard work and not hand outs. But once I could no longer work, our only choice as a family were benefits. Reluctantly that’s the route we were forced to take. If you’ve heard how difficult it is to get and maintain disability benefits then let me say you don’t begin to grasp the hoops you have to jump through. It’s harder than you can imagine. Being ill and having to fill out long forms and have face to face meetings is stressful and makes you worse. It took me days to fill out each form. Because I was so ill, not only did I get the benefits I applied for, but at one of the face to face interviews the doctor (they were doctors then) suggested I apply for additional benefits, which I then got. As my condition worsened I eventually needed not just financial help but physical care. That’s where social workers first came in. They coordinate and authorise carers and later if you choose direct payments, then the payments. They are part of the team that includes occupational therapists and district nurses who initially assess you. They also recommend and highlight options to help day to day needs when you first contact adult social care. I doubt I have included everything they do as I am going on my observations rather than a crib sheet. When I first had a social worker you were assigned one for all your time. Now you start with one for a few months and then any social worker on duty will deal with you.

It may appear externally as if illnesses or disability in itself is a limitation and embarrassment. But for me I have found the intrusion into my financial and personal life by the state as represented by the DWP (Department of Work and Pensions), far more limiting and embarrassing. We were one of the families chosen for a full in depth check a few years ago. I seem to be regularly checked up on, but I guess that is the system. The DWP basically take your privacy apart. Looking at every statement, transaction, and invoice; spending hours in your home investigating you. It’s like being treated as a criminal, they seem to make an assumption of guilt, and you have to prove you’re innocent. I was and am innocent of cheating the system so that’s OK, but it doesn’t make it less stressful or embarrassing. You may think it a justifiable action to catch those who do cheat the system. But much more money is stolen via tax fraud. I don’t see millionaires being subjected to random in depth checks based on assumption of guilt. If it’s about ensuring the government isn’t cheated of money that would be a fair comparison. Illness and disability are really tough in themselves, the state shouldn’t be making it harder for the minute saving they make.

I understand that when you receive help from the state you should expect scrutiny. But, let me explain it this way. I started work at 16, I didn’t go to a brick University, I started paying tax and national Insurance at that point. I was able to work full time until I was 33 before I became ill. I worked part time whenever I was able to after that. My understanding of any insurance is that you pay it so that in the event you need to claim on it, you are covered. If you claim on your house insurance are you made to feel a pariah? Why should I feel that way having to claim disability benefit from my national Insurance. I am not making a choice not to work, I cannot work. Whenever I have been able to, I have. Surely that’s what disability benefits are for. I should not feel guilty or a lesser citizen for receiving them. Disability benefits should be a safety net for those of us, who through no fault of our own are prevented from working.

Let me finish with my personal experience of social workers. I have known several really good social workers over the years. I won’t name them. They have been compassionate, kind, caring, helpful and understanding. Without their help we would have been in a far worse mess. My misunderstanding of what social workers were led me to have an initial anxiety about meeting them. Now that I have know several I realise how wrong that expectation was. I can only say if you are a social worker, thank you for your dedication and hard work. If you are going to be meeting one, you will find them helpful and understanding.

How can it be OK?

It’s an odd situation we are in. On the surface everything has gone wrong. I lost my independence, mobility, ability to work and hadn’t even finished the work on the house we own. Yet I am at peace and joyful, I won’t say happy because happiness is based on what happens. Joy is not based on circumstances. You can feel joy when everything goes wrong. You can feel joy even in the hardest of circumstances. You can be at peace in the midst of difficulty. That’s what this blog is about a positive viewpoint on a difficult situation. How can things be OK, when everything is wrong?

The situation we are in doesn’t have to rule the way we feel. Feelings are deceptive things anyway, they so easily rule our hearts and minds. The one thing I have found that is unchanging and sure is my faith in God. I can hear all my non Christian readers turn off here and stop reading. But persevere a little longer. After all, I am saying this as someone who has truly tested this out. So maybe I have something worth hearing.

Faith is not religion, religion is not faith. There can be faith in religion but most often religion is just a blind obedience to a set of rules. A legalistic obeying of laws and statutes expecting a positive result. I am definitely not talking about that. You will not find peace and joy that way, because ultimately that is empty. I am talking about living faith.

What I have found to be true is that knowing a personal God, who also knows you and has a relationship with you transforms your life. Faith in God is life changing.

Forget harps, old men with white beards or dusty old books. I am talking about human relationship. We all understand that and feel it’s lack when it’s missing. God didn’t just create humanity and leave us to it. He saw the mess we were making and came into the world he made as a human being. Jesus was fully human and fully God. He wasn’t a blueprint of a future kind of human. He wasn’t a man pretending to be God. He wasn’t an angel. He wasn’t a prophet. He was the one and only, unique son of God. Fully God and fully human.

What on earth am I talking about!? God as a human. Am I mad, don’t I realise how crazy that sounds. Yes I do. There are many incredible and crazy sounding things in this universe that God created. Particles of matter that can be in two places at once. A force that cannot be seen or fully understood and yet holds everything together, gravity. Something that fills the gaps in the whole universe, dark matter. A perfect balance of push and pull at the big bang that prevents the universe collapsing. The more you look at the universe the more amazing and puzzling it is. I don’t have to be able to explain everything to know truth.

I know what love is, not because I can analyse it. I know what compassion is without pulling it to pieces. I can feel the benefit of mercy without fully understanding it. God loves us, God has compassion on us, God shows us mercy. We may not understand his reason or how he does it. We may not be able to explain how he became a man in Jesus. But we can know it is true. We can feel the transforming power of his love.

Before I realised that truth I was a loud voiced mocker. I see many such mockers now on facebook. We tend to mock two things, things we don’t understand and things we fear. Often our fear is that it’s true. That was the case for me. The more loudly I mocked the more it expressed my desperation. So I don’t feel anger at those who mock. I understand something of what they might be feeling. I know God loves them anyway.

Let me return to why I am at peace and I feel joy. It’s because I know God loves me. Jesus has made that known to me. But how you may well ask.

“Sticks and stones may break my bones but words will never hurt me.” And, “A rose by any other name will smell as sweet.”

Two really well known but equally untrue quotes. Words are very powerful things. Ask any psychologist, in fact ask yourself. What words said to you as a child still ring in your head as an adult.

Jesus is The Word of God he embodies God’s Word but he also spoke it. When we read God’s Word as recorded in the Bible and we receive Jesus the living Word into our lives then God’s transforms us. For some that transformation is instant and dramatic for others slower and less dramatic. But everyone who accepts Jesus Christ into their lives will be changed. The Word of God has the power to change our lives.

It is this change that means I can cope in the midst of disappointment, despair and seeming hopelessness. Because with Jesus there is hope and a future.

Some of you will know that in May 2015 (see video below) I had a miraculous healing, one that the doctors still can’t explain. For about two and a half years I could walk, and even do work on our current house. When in January 2018 that ended and my health again declined, I was devastated.

You may be aware that the most effective form of torture is to stop torturing someone, pretend to let them go and them re imprison them and start again. Doing this can completely destroy a persons spirit. I felt a bit like that. I had been free, able to walk and work, then it was taken away again in an instant. I reeled at the unfairness of it. I shouted at God about it. He is big enough to take that. When I had calmed down I felt I got an answer.

God had not taken anything from me. On the contrary He had given me a gift. Two and a half years of being able to walk again and being able to do normal things. A wonderful, brilliant gift. Far from being angry at the loss, I became thankful for what I’d enjoyed. I started to enjoy re living what I had done. Then I realised all the blessings God was giving me in this new season. The amazing carers God was bringing along for me to meet. The opportunities I had that previously I hadn’t enjoyed. Everything looked different and my joy and peace returned.

Whatever is thrown at us we can find peace and even joy. You might think it’s an empty joy based on nothing. But you’d be wrong. I have a depth of strength and durability to my faith that stands up to the rigours of life. Faith means you can put your weight on it and it can take your weight. My faith in God can bear the greatest testing. I can put all my weight on him. My faith is stronger than a reliance on material things. They come and go as I know all too well. God is unchanging, He is faithful and true.

To a lot of people Jesus Christ is a swear word. To me he is my way, my hope, and my life.

I am aware that I raise as many questions as I answer. One place that’s good to go and explore those questions is a local Alpha course. They are free to attend and run all over the world.

Find one near you https://alpha.org

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Me able to walk in 2015 following a miracle.

1st Day on my feet in 4th May 2015 (the 2.5 years of being able to walk)

Planes, trains and automobiles

I discovered the other day that it’s physically possible to fly in my condition. I don’t yet know if it’s practical, but it’s something airlines can do. Apparently when a wheelchair user can’t transfer from their chair by standing or walking there are two options, depending on the airport. 1/ Some airports have hoists that take you from outside the plane to your seat. 2/ Some airports use a few people to physically lift you from your wheelchair to your seat. No extra cakes before your flight then eh? Of course, in my case that doesn’t answer the problems of what happens if I am in a collapse at the point of transfer. I can’t be hoisted when I’m like a rag doll. Or whether I could sit in an airline seat, would it be supportive enough when tilted? I could certainly take a pressure cushion and my neck brace. First class would work, but prices are crazy. I won’t give you the nitty gritty, but as I can’t access a toilet on the flight, I do have a way to cover that, external catheters etc. Planes then, while very tricky might be possible. I have never tried it, but they obviously aim to make themselves accessible for people in my situation. Interesting as I had assumed the only way to fly would be on a stretcher by purchasing several seats and therefore well beyond my means.

I have tried the train a few times. It’s an interesting experience. With train travel, if you want the easiest trip you need to book assistance at least 24 hours ahead. Then you are told to arrive 20 minutes before your train. On a cold day, if there is no waiting room that is a nuisance. The reason is so that the station staff can get ramps ready and plan where you need to be. I have only travelled between Taunton and Dawlish, with the occasional enforced stop at Exeter St David’s due to bad weather. Taunton is a great station, large lifts and plenty of helpful staff. Exeter St David’s is similar. Dawlish is a 2-platform station, the staff are great but not always there, so you can only travel at certain times if travelling to Dawlish. Taunton to Dawlish gets you in on the seaward side platform, the only way off that platform via wheelchair is across the railway line, via locked gates. You must be escorted by railway staff. It’s a busy line and we have had to wait 10 minutes to cross at times. As Dawlish is right next to the sea, it’s vulnerable to high waves. When high waves crash over the line they don’t allow wheelchair users to cross the line. Something about not wanting them to surf their way across. Therefore, the rail company lays on a free taxi from Exeter for any wheelchair users. When the line was damaged in the storm and a replacement bus service ran from Taunton, they laid on a taxi from Taunton for me.

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Dawlish train station in distance by the sea

One time we were on our way to respite at the RCH convalescence hotel in Dawlish and had a train booked. A storm hit before we travelled and we got a phone call from GWR to say we would be taken off the train at Exeter and taken by taxi to Dawlish. We arrived at Exeter and waited to be taken off the train. No one came, but the train stayed in the station. Eventually a rather hassled looking couple of train assistants arrived. Apparently the person who booked our assistance on the phone had put the wrong carriage on the station system. Then just to add to the confusion, they found in that carriage an elderly lady with mobility issues who was going to Dawlish. So when they had asked about who was needing assistance she was taken to be the one in need. They got her off the train into the cold and wet. It took a few minutes before someone realised it was meant to be a wheelchair user they were assisting. They got her back on and came in search of me. The train was held up about 15 minutes.

Our problems were not over there. Outside the station we were taken to our taxi waiting in the pouring rain and icy cold. It was too small for my wheelchair even though I had told the guy on the phone I needed a big taxi. The driver tried to load my chair 3 times all while leaving our luggage in the rain. I have to hand it to GWR, they stayed with us and when the taxi failed they took us to a warm place, ordered a bigger taxi and made sure it took us all the way to our hotel, no extra cost. They rescued a difficult situation, even though they had caused it.

The lady who had been removed from the train was staying at our hotel and unfortunately caught a cold later in the week. Many people on the train were staying in our hotel and had wondered about the delay.

Trains themselves are improving. In the past they used to lay a metal ramp onto the step of the carriage for the wheelchair to travel up and down. I guess some must have fallen off, which is no surprise to me. As I never felt safe on those old ramps. I used to watch them lay them on the step and make sure they were well in place before I moved. The new trains have a brand new and rather slow system. The automatic doors are locked, a plate is flipped out and the ramp clips into two holes. Therefore, it cannot slip. I watch the process equally carefully to make sure they engage the toggles in the holes. The ramps themselves are not very wide, neither are the doors. But the new trains are massively better than the old. On the older trains I could not always get into the wheelchair space, I sometimes had to stay in the corridor. The alleyways were also very tight to turn in. On the new trains everywhere is wider and easier to access. On some of them I have actually been able to access the toilet.

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On a train in First Class (Upgraded as second class off platform)

One extra bit of fun with trains is platform length. For some reason they always put disabled carriages at the end, normally one in first class at one end and one in second at the other. Dawlish station can take a 9-carriage train on the seaward side and an 8-carriage train on the other. So, when we are travelling home, and the train is 9 carriage it depends which end has first or second class disabled as to which class we are put into by the booking service. If they get it wrong, or the dispatch change it, we get moved. We have often travelled first class with a second-class ticket. I guess there have to be some pleasant aspects of disability. I had never travelled first class before, but I do enjoy it now. The snacks, drinks and sandwiches all being free is a great bonus.

Motor vehicles have to be specially adapted for my wheelchair. Vans need a lift or ramps, plus clamping points and cars or taxis need a ramp and anchor points. My wheelchair is so long and high that not every taxi can fit it. It’s a bit of an art being anchored into a taxi. They attach long seat belts to my front anchor points, then I drive the wheelchair in as far as I can just before my footplates make contact with the seats in front of me. To make these lock I should really go back a bit, but my chair is to big for that, so they stay a little loose. Which means the front of my chair can lift about 2-3” on a big bump. It feels a bit hairy. The driver then locks the rear two anchor points of my chair with ratchet clamps. This prevents it moving at the back. If the vehicle crashed, I would not be able to move forward. He also presses a switch to lock the two front seat belt that have retracted as I drove in. I have a car grade seat belt in my wheelchair, but they also add an extra one.

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My view in a taxi

Vans vary a lot in how they latch my wheelchair in. In some I have room to recline fully before being latched in. We discovered that the front latching points are on the moving part of the tilting mechanism, so I need to tilt it before they connect the straps or I pull them out of the floor. Vans are very bouncy and a problem I find is being in a collapse while in a van my arms can hang down very uncomfortably. Mary therefore sits next to my wheelchair so that she can hold my arms if necessary. If I set everything up right ahead of time, tighten my shoulder straps, remove my head pillows and have my neck brace on, them my neck stays on the head rest. But once I had my shoulder straps too loose and my head bounced off the neck rest and was hanging by the side of the neck rest. Mary couldn’t reach and we were on a dual carriageway. The driver pulled off at the next exit to rescue me. I still had a very sore neck for a few days. I have mentioned before that exiting a van or minibus involves a big trust exercise on my part. I am not able to see backward, so whether I drive the wheelchair under guidance or whether it is driven I have to trust the person in control. Remember the ramp I reverse down is only a few inches wider than my wheelchair and the ridges at its side are not sufficient to prevent my wheelchair driving over it. I much prefer vans with lifts.

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View from my wheelchair in the Slinky accessible transport bus

One thing makes me laugh every time I am loaded in a minibus. The rules of most minibuses say the driver or an assistant has to guide or push the chair up the ramp and back down. This rule ignores power wheelchairs. Modern ones do not have a motor disengage, or at least not fully. Even if they did, my chair with me in it weighs 250kg, that’s a quarter of a metric tonne. Good luck pushing that up a ramp unaided, even better luck preventing it falling. The most ridiculous sight was one respite centre that had a young girl of 17 who was instructed to stand behind the chair to stop it falling. I pointed out, if it fell she would just be crushed. I don’t understand the logic of some places.

Buses are a complete non starter for me. I tried one out once. But the space allowed is too small for my type of wheelchair and the turning space too tight. It has put me off trying again. Coach companies say they cannot accommodate my wheelchair.

I am always glad train companies are so helpful and that we can travel in taxis and accessible vans.

Apparently there are hoists available that can be fitted to ordinary cars, but they cost £3000 and are fitted to one car at a time. My wheelchair would be far to big and heavy to transport even if my friends or family had such a hoist, which they don’t.

Travel is a much bigger adventure when your mobility is limited.

Waiting at a train station

The most amazing carer of all

Mary is my wife, but she is also my most amazing carer. The other day I realised that in my blogs I’ve concentrated on professional carers. Without Mary I would be completely lost, not only does she pick up all the slack but she is my rock and anchor, my best friend and the love of my life.

Mary is utterly amazing. When I totally lost the ability to stand or walk the hospital wouldn’t even let me home before asking Mary this question “are you happy to care for Mike 24/7?” It’s not that they weren’t going to supply carers to assist, in fact we get payments for 26.5 hours a week, which in real terms equates to 19 hours of care a week (care costs are higher than social care payments). But, Mary is responsible for me the majority of the time. So carers on their own wouldn’t enable me to be at home. Caring for me at home is a huge thing for Mary to undertake, it is life transforming for her. She had the absolute right to say it’s too much and after the stroke she had a couple of years ago it is hard for her. I know of several couples where they chose care homes rather than home. Let me show you the real choice she had. I said to Mary that I would be OK to be cared for in a nursing home so that she would not have the weight of my care. She was having none of that and insisted she could manage.

I am not a complete doddle to look after, however it might appear from a quick view on facebook or on a Sunday. I need someone around pretty much all the time. I can’t get things myself, like food or drink, I can’t get myself washed and dressed. I need help with toileting, let me tell you helping an adult with a bedpan is not a laugh. Even if there was a fire, I couldn’t get myself into the wheelchair or get out of the house on my own. I need help with all the basics. It’s wearing, like having a grown up baby. When you marry someone you don’t expect to be looking after them in their 50s.

I would be a useless carer, I am not patient or understanding. I don’t do well with wiping bums or clearing up sick. I coped with our children, because they were children. But adult mess is a whole other thing. Mary copes so well and takes things in her stride. That doesn’t mean she finds it easy, but she does it from love.

When we go out Mary has to overcome her embarrassment in order to move furniture or people and make room for my wheelchair. As we squeeze down roads, into rooms or find places to setup Mary makes space. That takes courage born out of love and care.

The other thing that is really difficult for Mary is giving over her husband and her home to a series of strange women. That’s how each new carer seems at first, it does get better over time. A new lady arrives and takes over my care. How difficult must that be to see your husband being so intimately cared for by another woman and yet knowing it’s needed. How tough is it to have different women coming into your home, your kitchen and taking over for an hour or so. Perhaps only the women reading this will understand that. That’s why it’s so important to find carers that connect with both Mary and I, who understand the whole picture. Carers who we get to know and who get to know both of us. Carers who don’t ignore Mary, but include her. We’ve had carers in the past who see their job as just me. They zone in on me and totally ignore Mary. They don’t last long. It might be fun for me to be the centre of attention, but it doesn’t work if a carer does that.

Illness doesn’t make for grateful patients. It’s not always the fault of the patient. Illness and pain make you grumpy. Tablets can change your character as can many illnesses. So gratitude doesn’t flow easily. Care can be a thankless task for anyone, but somehow it’s often loved ones who bear the brunt. I know I am most grumpy and ungrateful with Mary. I’m much more likely to be sour and negative with Mary than anyone else. I guess we are most real with those we love. The mask comes down. It means Mary really gets the tough end of the deal, negativity and grumps from me then later hearing me laugh and be positive with one of my carers. How unfair is that. But it’s the way it often happens.

Mary really is my most amazing carer, because she is my wife and yet has to cope with all this extra. It’s not how it should be, but Mary has taken a difficult situation and made the best of it. Over all the years of my illness Mary has been incredible. Sitting with me in my pain, praying with me, clearing up the mess, bringing me food and drink, taking me out and about, sharing together, and still loving me.

Keep on rolling

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

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

This is the only photo I can find of that first wheelchair

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

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

My 1st NHS wheelchair

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

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

Hartlepool seafront

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

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

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

Stuck in doorway, NHS non power wheelchair in doorway at Creech
First NHS power wheelchair outside our old house at Creech

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

My current wheelchair at Wellington park
My new chair on a train

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

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

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

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

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

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Watching music at the park last summer, thanks to having a wheelchair

Fun and games

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

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

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

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

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

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

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

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

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

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

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

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

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The LED lights around the base of my wheelchair
The obvious safety benefits of my new LED lights

The good, the bad and the ugly

Care companies come in all shapes, sizes and qualities. I’ve had excellent experiences, bad experiences and yes ugly experiences. Ugly in the sense of the bad side of human nature, not ugly physically.

I won’t name any companies, although the companies referred to, if reading this will recognise themselves. My first real story will show two sides of things, good and ugly.

A few year ago, we had a care company for a short time, who seemed to be working out fine. Most of the carers they sent me were really nice, friendly, helpful and kind. One day one of the carers managed to catch my foot, while I was in a collapse. I was obviously unable to move it. It hurt a lot, and she was very slow to do anything about it. When Mary heard what had happened, she was understandably upset. The next day when the same lady came back Mary challenged her about it. Instead of listening to Mary, the carer said, “Take it up with the office.” Then proceeded to scribble copious notes about the incident in my care plan. Mary asked her to leave after that rather than do any personal care for me.

A couple of days prior to this event, we had introduced this same lady to therapeutic lymphatic massage. It’s something my previous carers had done every day for me and so we were introducing it to the new company. My first carers were directly trained at Bridgewater College on a specially tailored course. The course was no longer available to my carers. Fortunately, the tutor had allowed the course to be videoed for future carers and one of my carers at the time had volunteered to be the guinea pig for the demonstration. It would take a pretty filthy mind to see this therapeutic massage as anything other than the therapy it was. We hadn’t allowed for how someone looking to get back at us for asking them to leave could twist and distort the facts.

Later in the day of the incident, we phoned the manager of the care company to ask that he didn’t send the same lady back. By this time the carer who had injured me had already returned to the office. Shockingly we were told that they would no longer provide care for me. She’d told the manager, her close relative, as we later discovered, that I wanted sexual massages. We obviously explained the true facts, but he was uninterested in facts and chose to believe the lies told by his family member.

We had given the carer a copy of the training video to look at and learn from prior to doing the massage. She had given this to the manager but neither of them had actually viewed it. Instead they believed their own imagination of what it contained. It doesn’t say much for their imagination. Because when I suggested the manager view it, his response was “I don’t want to watch such disgusting filth.” Rorschach ink blots spring to mind here. In other words, they both imagined what was already in their own minds, which had nothing to do with reality. The worst of it was that Mary had a wedding to go to that coming weekend and they were just cutting us off immediately with no warning. I had no care cover from the next day. That was devastating.

Then comes the good. In desperation of what to do next we rang around other care companies. A fairly new one had started recently in the area. In contacting them the manager not only got everything set up within a couple of days, but she personally did my care while Mary went to the wedding. By the way their minds were not distorted or perverted, they saw the massage course for what it is. A therapy that helps me in my immobility. Every other care company and carer we have had has seen the massage course for what it is, a therapy. None of them have had the distorted view of the other company. I will let you draw your own conclusions from that. If you are curious to see what I am referring to, look up ‘lymphatic drainage massage’ on YouTube. It won’t be identical to the Bridgewater course, but it will give you an idea of what I am talking about and why the manager and carer who thought it was some sort of perverted sex massage have big issues they need to look into themselves.

Most care companies don’t really come into any extreme, they are just average. Like most of us sometimes they fail, sometimes they succeed brilliantly. I have found over the years, that’s true of the companies we stay with. They have really let us down badly at times, not being able to provide cover when Mary had shingles, so she had to do all my care for a few days while she was in agony. But other times they have provided cover over important birthday and wedding weekends and gone well above and beyond expectations.

In reality it’s actually the carers themselves that are the stars in any care company. They are the unsung heroes, the underpaid, over worked and often unappreciated majority. It’s the carers who go above and beyond in helping us, whereas it tends to be the admin which messes up.

Carers are amazing and if I ran the world anyone who cares for people would be paid what is currently paid to those who care for money and vice versa. We live in a back to front world where people are seen as less important than money or things. All the high paying jobs are to bankers and IT experts rather than to those who value and look after people. Where there are large amounts of money being made in care it’s going to franchise owners who came up with national and international franchises for care companies. Next down the pay scale are those who buy a local franchise and manage it. The people delivering care are paid just above minimum wage for doing a largely thankless task. It’s a hands dirty, sleeves rolled up, messy and difficult job, they deal with dementia patients, older people and disabled people like me. They clean up, wash dress, tidy house, toilet people, help with shopping, encourage, act as companions, hoist people, operate wheelchairs, take people on trips out, prompt people taking their medicine, call medical help when they see problems, act as an interface with family and many other small and large things. Yet often they are not appreciated or valued either by those they help, the families or even the companies they work for.

In my ideal world carers would all work in cooperatives sharing the profits and workload. Or perhaps a model similar to John Lewis, a partnership where the boss can never make more than a certain multiple of the lowest worker and everyone is a partner in the business. Rather than the profits heading upwards to millionaires. There would be less paperwork that really only acts as a fallback for litigation and more actual guidance and care. Less repetition of what needs covering and more common sense. Less layers of bureaucracy and more streamlined care. I know it’s easy to criticise and hard to actually fix things, but the answer is not to accept that carers should be low paid and on zero hours contracts. Carers should be valued and well paid, their worth acknowledged. They should be on proper contracts. People who care for people are vital to our society and should be seen as a vital part of it. Believe me if you spent as much time with carers as I do, you would realise what a truly amazing group of people most of them are.

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Home from home

“Help, mummy, help me.” The shouting had been going on so long I finally began to switch off to it. Another resident, who was suffering from some degree of dementia, was obviously confused. I was staying for a weeks respite at a nursing home. From my room I could hear the regular visits from care staff to the room of the person shouting, reassuring them and trying, without success to get them to stop calling out. Only time was effective at stopping the shouting as I found out over the week. Their calling was a regular punctuation to the day and night over the week. How the care staff, as busy as they were, managed to stay patient and understanding all the time, I’ll never understand. I was only there a week and I’d had enough. I wanted to shout “shut up!” At them. If you think you would be more patient, try it out, have someone call out day and night at random times.

Nursing homes are probably the most unsuitable place for me to stay, but the only place adult social care will fund. I need nursing care, so a normal care home is unsuitable. There is only one nursing type home that is suitable in this area and it doesn’t routinely take adult social care rates. I am left with standard nursing homes, these are mainly filled with elderly patients with dementia. As you can imagine I don’t have a lot in common with the other residents. Mind you it does make me a novelty with the carers. At first I was complimented by the fact they thought my skin was so good, until I realised they were comparing it to other residents who were at least in their 80s.

Most of my time is spent on my own, either in my room, or in the garden. There is no one I can socialise with. My day is therefore punctuated by visits from carers. Two in the morning to wash me, one bringing breakfast, one at lunch, one at tea, two getting me ready for bed. In between I watch Netflix on my iPad.

I normally cause an issue in most nursing homes. I need lots of power sockets for all my electronics and they often have only one by the beds so I now have a multi USB socket. My iPad, smart watch, phone, Alexa plus wheelchair and wheelchair ripple cushion all need plugging in, plus I have an electric toothbrush. My bed side table ends up resembling an electronic work table full of wires and gadgets. I do like gadgets, but I also find them extremely useful in my limited condition. A smart watch is brilliant when you need to easily check messages. The Alexa is an essential disability aid. I can call for help, even in a collapse, or check any number of things while waiting to come round. It acts as an entertainment centre, but it also connects to all my smart home stuff. So at home I can control heating, lights and cameras on external doors.

One nursing home I stayed at I ended up helping a visiting lady from head office sort out the wi-fi setup. I’d been having problems connecting, so I did some trouble shooting from my bed. When she arrived, I found they had sent a none technical person, so I explained the problem and how to fix it. I have worked with computers and networking for years before I was ill, so it was simple for me. It’s always good when I can achieve something helpful even in my limitations.

Let me describe a typical day in a nursing home. I wake around 4am or 5am, that’s my usual time. Ring the call bell. You would not believe the image on many call bells. They have 1960s style female nurses in mini skirts, sexist or what? Someone looking totally different to the promised image turns up. Then the joys and embarrassment of using a bedpan begin. I won’t describe it in detail. But just think about what it would be like having two people, they have to call a second, help you onto a bedpan or commode then off it and wipe your bottom. Think for a moment about the procedure that would be involved in that. In some nursing homes I have to use a bed pan on the bed with all the balance issues that involves, in others I can be hoist onto a commode. Yes it’s all as unpleasant as it sounds. For me the worst bit is that when you ring the bell first time one set of carers come to help, then when you are finished and ring again you don’t know who will walk in the door. Will it be the same people or two complete strangers you’ve not met yet. Night staff tend to be bank staff, so you don’t really get to know them all. I don’t enjoy it at all, would you?

After this I ask for a first breakfast. I am like Winnie the Pooh, I have first and second breakfast. I’m probably full of fluff too as I always have fluff in my belly button. My first is coffee and a slice of toast or bowl of porridge. I then watch Netflix till the two carers arrive to get me ready for the day. Typically that varies between 7:30-9am. When you are on respite you are last on the priority list.

I covered what it’s like to be washed and dressed by two people in another post. After being dressed I either get hoisted into my wheelchair or stay in bed. It depends how well I feel and what’s happening. I can only manage a certain amount of time in my wheelchair, even now it has a battery powered ripple cushion. We will assume this is a day I have got hoisted into my chair.

Second breakfast comes next, again in my room. Then I would explore the less used rooms or go into the garden, weather permitting. I avoid the more used rooms as I have found from experience that the other residents look puzzled at me. I put the battery powered Alexa on my lap tray so I can call for help if needed to the one I have left with the office. My lap tray is a Trabasac which fits by straps to my wheelchair and acts as a beanbag tray and a bag for my wallet, iPad and phone. As I mentioned in a previous post, you won’t be surprised that Trabasac sell trays for pushchairs too.

Normally I request to be hoisted back into bed in time for lunch. In most nursing homes once you ring the bell there’s a wait. How long depends when you ring. If you ring during the morning rush, when everyone is being washed and dressed, it’s a very long wait. If you ring at one of the handovers between shifts, again the wait can be long. At other times it is normally really fast. At least it is for me. I’ve noticed that some residents don’t get answered quite as fast. But, those same residents seem to press the bell an awful lot, maybe that’s why.

Lunch, like all meals in a nursing home is OK, about the quality of a café or a low star restaurant. The meals are small, which suits me as I have a small appetite. I have to have someone with me when I eat. This is because if I have a collapse while eating I could choke. It has happened at home and Mary removed the food from my mouth. At home Mary or my carer are always a few feet away, so in a nursing home a carer has to stay near me too.

The afternoon is a repeat of the morning. I sometimes have visitors, which is great. My day generally is punctuated by collapses. I keep a running record of them, looking for patterns. I have between 2 and 6 per day up to 20 minutes each one. It’s the quiet days where I have 2. Due to the stress, noise and disturbance of being in a nursing home I generally have 6 a day while staying there.

Tea time, again a carer has to sit with me. Nursing homes give you a choice of food for the next day and I do like that choice. The thing about being in bed or a wheelchair all the time is that food becomes a big focus of your day. You might think ‘food is a focus for me.’ but this is different, I mean it occupies a large part of the day because there are not a lot of other things happening. There is a tea and coffee trolley normally morning and afternoon, but I can ring for drinks anytime. I tend to find that once the ladies doing the tea trolley find I have my mental faculties, they spend more time in my room chatting. One of the younger carers kept appearing in my room to chat. I thought she must be on a break each time until one time a supervisor came in and said “There you are, we’ve been looking for you, you’re meant to be in room 6.” I would like to claim it was my witty repartee, amazing good looks or animal magnetism that kept drawing her to my room. But, I know it was two things, a desire to escape working and the novelty of a resident able to chat normally. She is a very nice young lady but just not suited for care and she no longer works in it.

The time I get ready for bed is up to me but if I time it wrong and hit a busy moment or handover I can have a long wait. So, I normally get ready early, before 8pm. Getting ready for bed is not just pyjamas, again with two people, but also tooth brushing and preparing my CPAP. I have sleep apnoea on top of everything else. A CPAP is a device that feeds pressurised air down your nose and throat to keep your airway open all night. This prevents the episodes where I stop breathing. Sleep apnoea is where you stop breathing many times an hour during the night. Your body eventually kicks in with a gasp and starts again. But it causes an oxygen drop and heart rate race each time. It’s dangerous and disturbs your sleep. Without a CPAP machine people fall asleep at the wheel of cars or lorries and it can cause all sorts of health problems.

Once the carers have got me ready for bed at 8pm I don’t actually go to sleep till about 10pm. For me in a nursing home I don’t get a very good nights sleep. When I first stayed there I used to get woken every 2 hours by nurses checking on me. Some actually asking “are you OK?” They had gone before I could respond “I was till you woke me.” It took a while till I realised the reason. Because I have bed sides and a CPAP the night staff automatically see me as a risk that needs checking on. The problem with being in a nursing home full of dementia patients is that even when I first realised that and told them not to check on me. I got the response “yes, that’s fine.” In a pat you over the head, patronising way. They thought I had dementia because they didn’t read my care notes, so they ignored my request, thinking I didn’t know what I was saying. I had to have the day staff cover it at hand over to ensure I wasn’t disturbed. Even then one over zealous night nurse still popped her head in quietly one night, forgetting the door is not quiet.

Overall I do not enjoy nursing homes for respite and would choose to stay at home with 24/7 carers. I don’t get much sleep, I find it stressful and difficult. I certainly don’t enjoy using a bedpan or commode with a constantly changing audience. It would cost adult social care nearly the same to cover 24/7 at home care through some agencies, but the system doesn’t allow it. Less money is available if I am at home than if I am in a nursing home. It’s one of many peculiarities of the social care system.

One last comment on Nursing homes. I don’t enjoy staying in them because they are unsuitable for where I am mentally and not setup for my physical needs. But, everything I have seen while staying at different ones tells me they are safe and pleasant places to stay. The staff are incredibly patient in difficult circumstances. The food better than I expected. The environment pleasant, especially the gardens. I don’t fear a time when I might need to be in a nursing home full time. It just doesn’t suit respite in my current situation.

One of the nursing homes I have stayed in.

Body mapping

Have you ever heard of body mapping? Neither had I before I was ill. My first experience of it came in a care home a few years ago. First I promised in a previous post I would explain about two carers being assigned to me at once, well here we go.

Because I am very limited in my mobility and I need hoisting for transfers, plus in a collapse I lose most muscle function I am always allocated two carers in a nursing home. They are not always needed, but they are always there when I’m in a nursing home. It’s probably a health and safety thing. They have portable hoists that need two people and they always put both bed sides down at once. Whatever the reason, it’s different to at my own home, where I have one carer at a time.

On my arrival day for a respite stay in a nursing home, the first job is a body map. This is to check my naked body from top to tail for any marks, wounds, pressure sores etc. They are then mapped on a drawing for reference. That way if any new ones appear in the week, they were obviously caused while I was staying at the home.

The process involves the two women, I only have female carers, standing either side of me peering intently at every inch of my body while making notes. Yes it does feel just a little embarrassing. I have been to other establishments that do it much more subtly, while doing my first bed-bath for instance.

A bed-bath by two women is an experience in itself, one either side of the bed. Being undressed, washed, having cream applied and dressed by two pairs of hands at once is, to say the least, confusing mentally and physically. They say patting your head and rubbing your tummy is confusing.

I can imagine that some men reading this might think it sounds like it might be fun. Some might even think it’s a sexy notion. Let me just put that idea out of your mind. Unless you have a perverted desire to be a baby again, then there is nothing but embarrassment involved in this. I use humour to help me cope with it. I use humour to help me deal with being cared for generally. The first time I had to be undressed and washed by two women I’d never met before, it was not exciting, it was horrifying. Now I just don’t think about it, I laugh and joke with them. It’s much easier coping with the one to one care I have at home with carers I get to know over time

Oops, I didn’t mean to say that

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

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

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

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

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

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

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

Kid’s Stuff

Why is it that so much stuff designed for the disabled are either called by baby names or have a double use? Cot sides, drinks holders for prams and wheelchairs, hooks for prams and wheelchairs, the creams, the talc’s, the incontinence products that look like nappies, some wheelchairs that look less grown up than push chairs. What about nappy sacks to dispose of soiled wipes, or the baby wipes themselves. I could go on and anyone who has been or is disabled or has been around disabled people knows what I mean.

There needs to be new a range of disabled products. Macho wipes for men, I am being silly here of course, but you see my point. Or how about a wheelchair able-bodied people are jealous of. I know they are much better than they used to be, but most of the improvement in wheelchairs is in the chassis that you don’t really see. Or the seat that is covered by the user. The most visible bits don’t look great. Yet look at pushchairs these days. I wouldn’t mind going in one of those. They look mean, off road capable, stylish and we’ll designed. Most modern pushchairs look like they were designed by people who cared what the result looked like. There seems to be an idea that because a wheelchair is an essential mobility aid, what it looks like doesn’t matter. But, if that were true why wouldn’t it apply to glasses, another essential aid. I sometimes wonder if designers of disabled products have ever had to use them. I know my chair is NHS and someone will say it would cost too much, but really, good design doesn’t cost more.

Don’t misunderstand me. I think the wheelchair the NHS have given me is functionally brilliant, it meets my needs. I even like bits of its design. But overall it just looks like a chair with wheels. Don’t say that’s what it is, because design transforms function into something we enjoy seeing.

I said I didn’t want this blog to be a moan and I don’t. So, I have a couple of stories to share about using my wheelchair.

I have a lot of friends on Facebook that I have never met, I think I just click yes to friends of friends of friends. So, lots of people have seen pictures of me and know a little of my story, without me knowing them. One day I was being taken out to the local park by one of my carers. As we waited for the traffic lights to change a lady came up to us full of enthusiasm, she gave me a great big kiss on the cheek and said,

“How Great to actually meet you Mike, I follow you on Facebook.”

My carer looked at me and asked, “Did you know her?”

“No, it must be my aftershave.” I said.

Laughing we carried on to the park.

Another time I was in a collapse. Because my chair is so fully supported, and the straps hold me in. I can be moved along slowly when slightly reclined. Mary must operate my chair outside anyway as the collapses count as a sort of fit or seizure. So, she was driving the wheelchair slowly along. As we travelled a young girl and her Grandad walked past.

“Ah! How cute.” The little girl was referring to me.

She then matched our speed and asked Mary lots of detailed questions about me. I felt like a cute little baby in a pushchair being analysed by the little girl. Still, could be worse, she could have been repulsed by me or shouted rude comments. I’d rather be thought cute.

I used to find it embarrassing being in such a supported chair in public. I either get ignored by people who assume I have no mental capacity. Or I get too much attention by people who think I am in need of encouragement. It must be hard to hit the balance.

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Typical item that is both for baby buggy and wheelchair

Everything happens at once

When I was well and, on my feet, I was extremely active. I never used to lie in bed in the morning and I didn’t really enjoy sitting watching TV. I was a bit hyper active, preferring to walk places rather than drive, make things rather than read. Ironic then that the illness has limited me to bed and made me so reliant on others.

When we used to have visitors, I would always leap up to make drinks and be quick to cook and or wash up. I actually enjoyed tidying up!

How frustrating then to have to sit or lie down and watch others do everything for me. The most frustrating thing being when someone helps me with DIY, I want to be able to do it myself again.

There was one time, years ago, when we hired people from a local, low cost, social services funded group, to do some work in our house. I needed the TV putting where I could view it. That involved moving the TV and aerial, a job I would have expected to take me less than an hour. I watched the guy work all morning in fascination wondering just how long it could take to do such a simple job. In the end it took 4 hours! I was glad their hourly rate was so low. But I was also frustrated I couldn’t just get up and do it myself.

Many times, my wife Mary is rushed off her feet sorting out the house, organising everything ready for my carers and looking after me when I have no carers around. I have carers visit around 19 hours a week. As I need to be looked after 24/7 that means the remaining 149 hours are down to Mary.

We often find that everything happens at once. When we arrive back from a trip out there is a lot to do. Mary must remove my coat, then hoist me out of the wheelchair into my bed. My bed is in our front room and that is only small, so the wheelchair needs taking into the kitchen to give room and be charged. Then she needs to take off my sling, put up the bed sides, remove the sheets that protect our carpets, wheel across the trolley that holds my urine pots and off course empty them. Because of course I need to use them. If you are a man and have ever tried to wee sitting up in a chair into a urine pot, you’ll understand why I wait till I am in bed if I can. For the benefit of women reading this, you get easily injured, enough said. My drink also needs filling. Then my duvet needs bringing across along with a pillow for my legs to rest on and it all needs tucking in. When you are immobile your feet get very cold. Add to that the fact we often arrive back at meal times, the phone often seems to ring, or someone calls at the door and you can see how busy it becomes for Mary.

One time I was in the middle of being dressed in my pyjamas on arrival home, fortunately I was in my underwear, when a delivery driver found his way into our back garden and was knocking and waving at me through the window while I grabbed a blanket.

As I watch Mary rushing around getting everything ready, waiting for a duvet or drink or a urine bottle. I just wish I could get up and get it. It is very frustrating to look at something just beyond my arms reach, that would perhaps be only one or two steps away and just not being able to get it myself.

There was one time when I was so desperate to reach something just out of my arms length and Mary was extremely busy. So, when she was in another room sorting things out, I decided to try and reach it. The cot sides on my bed only go to half way down so I dragged myself to the bit without bars and sat on the edge of the bed, holding the bars. Still I couldn’t reach. Then I thought ‘maybe if I knelt on the floor?’ My bed is very low to the floor and I have quite long legs, but even so I dropped quite hard onto my knees. Hard enough that they bruised, and I had to explain to my carer the next day what I had done.

Now here’s a thing I should have realised, I can’t stand up or weight bear because I lack strength in my legs, all my legs, not just below the knees. So, you can probably guess what happened? I fell flat on my face. After I recovered, I used a great deal of effort to drag myself back onto my bed before Mary came back through. I still had to explain it to her. Obviously, I was exhausted, I caused a collapse, I was bruised. I never repeated it. Yes, I can be very foolish.

It’s easy to take for granted the simple things of life. Being able to get your own drink, go to the bathroom, fetch your coat, walk across a room, wash up, so many things you do without thinking. When they are gone, each one is a mountain you can just look at in wonder and be amazed you could ever do it.

Mary and I on a trip to Dawlish a few years ago

My Amazing Wheelchair

I am fortunate to live in a country and a time with the NHS. It is a brilliant institution. Any failings are more to do with political decisions on funding. I can’t fault the wonderful caring staff.

My wheelchair (shown in the photo) a Quickie Salsa M2, is supplied by the NHS, it took a long time to get, but it is excellent. It fully supports me and enables me to recline.

Quickie Salsa M2
Mechanism under the chair

Let me describe its brilliant functions:

My wheelchair has two electric reclining functions, operable via the front or rear (attendant) controller. The backrest can tilt and the whole chair can tip. When both are at their maximum the chair is as seen in the photo, it is almost flat. Due to clever design it is in no danger of tipping over and the speed automatically drops to a very slow crawl.

The legs are also electric they can raise separately or together and go straight up. The photo shows them up.

Another great feature on this chair are the raising arms. They flip up out of the way. This means that in a situation without a hoist, the wheelchair can be lined up to a bed, profiled to match, a banana board (plastic board used to transfer people) used to transfer me with assistance from others. Or the arms can just be moved away to get closer to a table.

The arms also have extra wide indented rubber tops so that my arms can sit in them. This is to help them stay in place if I have a collapse in the chair.

Note tiny gap next to door, between chair and bed wheelchair has accessed

The seat is high backed and has a wrap around back for support. The seat cushion is a battery powered ripple cushion that I added with money from donations. The NHS will only supply mains powered ripple cushions for wheelchairs or ordinary pressure cushions.

Here you can see the Alerta ripple cushion & the padded cushions Mary added to headrest

The main seat belt is a car type lap belt, then it has additional shoulder straps to keep me in place in a collapse. I have added a neck brace because my neck also loses function and the neck brace holds my head securely against the head rest. The combination of seating and straps hold me securely even on a bumpy van journey, apart from my arms. Mary has recently made arm restraints for these.

The NHS no longer provide lighting for wheelchairs if you live in a town. Even though we live down a dark alley. So we have added bicycle lights, an led strip light (also for fun, this one) and strips of reflective tape. Best to be seen at night.

The six wheels on this wheelchair keep it secure even over rough ground. At worst the front two leap up, four always stay firmly on the ground. The articulating suspension and springs are not perfect (its still bumpy) but they are an improvement on my previous wheelchair. I notice the biggest improvement on uneven ground. Where before, I would have skidded left or right or just lost all traction, the Quickie Salsa M2 seems to cope and keep going. I have managed to get through some pretty tough ground conditions, gravel, sand, mud, leaves, very uneven ground and potholes in the path.

You will see on the photo I have added side bags for my bits, a drink holder (hidden the other side) and a rear bag (hidden behind) that holds my waterproofs. Waterproofs are the one thing I have struggled to get for this wheelchair. I cannot find one that fits such a big chair from head to foot. So I have a separate head and leg covering.

Waterproof covering, in two pieces.

Mary has also made me removable cushions for the arm rests and head rest.

All in all I am really pleased to have such an incredible chair.

(Also see my blogs “Climb every mountain.” and “Keep on rolling“)

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I can go places I previously couldn’t

You look so well

“You look so well.” Those wonderful words that everyone with a life limiting illness or any illness really enjoys hearing. She stood looking at me so sincerely, with such compassion and yet complete misunderstanding in her eyes. But, was I feeling any better, had my condition actually changed? No, definitely not.

We were in a Church meeting and everyone had been so welcoming and lovely. It had been many months since I’d been well enough to attend, and this was a special occasion. My wife and I had made it there, first of many to follow. So, it would have been churlish of me to be too upset by an ill thought out comment. After all I have suffered far worse over the years from people.

I want this story to be a celebration of life and hope. Not a walk of misery and complaint. However, to enable you to understand the hope you have to have a tiny grasp of the problem.

Disability and illness to many of us comes in two clear cut forms. Disability is missing limbs, broken backs or a really extreme physical defect that no one can miss. Illness is only worth mentioning if it’s our own, or when it’s life threatening, or at the very least a well-known and dare I say it accepted disease. By which I don’t mean people want it, just that there is a degree of understanding about it. So cancer, MS, muscular dystrophy etc. But illness and disability overlap majorly and cause life limiting conditions that affect millions of people worldwide. There are the well-known and accepted ones like asthma and the debated and misunderstood ones like ME or Fibromyalgia. Then there are conditions that cause a whole series of physical damage, provable, independently testable damage, but which can’t be easily put under one convenient overall title. That’s where I am.

I need help washing, dressing, toileting, getting food to eat, hoisting into a chair or wheelchair from my hospital type bed. I have carers every day. Basically, my life is totally limited by my condition. I don’t have the mental or physical energy to do the things I used to enjoy. Even writing is slower than it used to be, hence writing this story in sections.

How does that make me feel? Surprisingly it makes me hopeful, full of joy, optimistic, happy and positive. Ask my carers what I’m like, they will say I am positive and happy. Yes, like anyone I have my down times. But not all the time. Most of the time I am upbeat and full of laughter and fun. That’s why I often look well, I try not to look miserable and sour. Add to that the fact my condition gives me a good red colour and I know I look well.

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The cot sides

I didn’t just wake up one day and find myself in a hospital bed with cot sides and carers. It was a gradual process of decline over years. My muscles used to lose function without much warning, from my viewpoint without any. It was when I could still walk and drive that it first happened. I was driving on a motorway! I need to tell that story separately. That incident stopped me driving. Then months later a collapse happened while I was walking, I just crumpled like a rag doll onto the concrete path, then another time down behind a toilet and even into the bath! That stopped me having baths. Gradually my ability to walk and safety factors meant I was limited by the doctor and nurse first to a reclining chair then to a hospital bed.

Then came the day that led to bed sides, they call them cot sides. By this time, I had daily carers as my general ability to function had declined. Not all of them were helpful. At this point I only had a diagnosis of ME, which is really a non-diagnosis. It means they have ruled other things out. Lots of people either have that diagnosis or know people with it. As I now know ME is the least of my problems, it’s no surprise I never found anyone with the same symptoms.

One day a particularly unhelpful carer came, whose husband had a diagnosis of ME, he’d actually been exposed to organophosphates, which gave him the ME type symptoms. She decided I needed encouraging to get well, a kick up the pants, as that had worked for him. So, she sat my bed up to nearly 90 degrees, flung a wet flannel on my chest said, “you start washing your face and I’ll get a bowl of water for the rest of you.” I objected, warning her my muscles were very weak and I had sudden collapses. If she’d read my care plan, she would have known all of that.

By the time she returned I had collapsed, I was head first out of bed all my weight on my head pressing on the edge of a wooden tray between my bed and the wall. Only the narrow gap between my bed and the wall stopped me falling further. I was in agony and calling for help. But the collapses immobilise my main muscles, I am effectively paralysed in that condition. No amount of pain and discomfort, danger or fear can overcome it, time is the only thing that changes it. They can last from 10 to 30 minutes.

The carer went into panic mode, she leapt onto the bed, no mean feat for a large lady. Still totally unaware of my limitations she hauled me up a little and I slumped back harder onto the tray edge. Realising I was too heavy for her to manage on her own, she rushed out to a neighbouring house where her supervisor was giving care to a neighbour. Returning after what felt like an eternity to me, I now had two large ladies leap onto my bed and heave me up. Feeling they had succeeded they let go, I slumped onto one lady’s large bosom. They lifted me again, I slumped onto the other ladys’ bosom. I don’t think they were quick learners because this happened a few times before they understood I was like a rag doll and they lay me down. They were soft pillows, but my head was at some awkward angles.

I have often wished a camera was filming the whole event, it must have looked hilarious. Their faces must have been a picture. I had no idea what was happening until I felt my head cushioned on each soft breast. Even though it’s funny in hind sight, it was not funny at the time. Being like a rag doll, my muscles and joints were easily pulled in ways they were not meant to go. I was so relieved when they eventually laid me down flat.

Two things came of that day. I refused to have that carer back and cot sides were fitted to my bed. I still have those even though I have learnt to be cautious and my current carers know me well. Sometimes safety features come after we have been hurt. This carer was an exception. I have only had one other who so completely ignored my care plan and caused me pain and difficulty in all the many years I have received care. Carers are mainly really careful and helpful.

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Cot sides on my bed

An odd request from Amazon

Wouldn’t it be great to have a shower again? That was the simple thought which started it all off. I can’t have a shower or bath at home, so my carers must give me a bed bath every day. The idea of a shower kept growing on me, water running down my hair, the little I have left. The luxury of water flowing over my body. The more I thought about it the more the desire to make it happen grew.

We had booked our first respite of 2019 in a convalescent hotel in Dawlish. We’ve been there before, and it works well. They have two rooms that have profiling beds, wet rooms and are on the ground floor. All rooms have call bells and a nurse/manager is on 24/7 call. Mary must do all my personal care, which isn’t a break for her, but all food is made, which is.

I decided that a wheeled shower chair with lifting arms could be used to enable me to have the occasional shower, while we were there. So, I ordered a folding one from Amazon to be delivered there. The plan being to bring it back on the train. The assistance people on the trains are brilliant.

Day one, we arrived, and the shower chair was waiting. I was desperate to try it out, so that evening I did. I need to explain something about those of us who are limited in mobility. We are at high risk of pressure sores. Our skin is more delicate than someone who is mobile. Then you need to know that this particular shower chair was badly designed. It had a hard-plastic seat and four holes in a triangle shape about 10” wide by 2” deep. The holes were a little bigger than a 5p piece.

I had a lovely shower, not thinking anything of this hard seat. Not knowing the information which the manufacturer later told me that I should have put a soft cover on it. Would be helpful to include instructions if that is a necessary thing to do. Information is so helpful, especially if given when needed rather than after.

Lying on the bed after the shower, being dried by Mary, she gave a cry of surprise. Two red circles had appeared on my bottom, exactly were the outer two holes had been. The inner two lined up with that part of my bottom which didn’t make contact with the seat. My skin had been sucked into the holes and bruised by the experience. Mary called the nurse and she recommended I stay off my bottom. The upshot being the next three days I spent most of the day in bed on my side.

I contacted Amazon and they wanted photos of the chair and my bottom showing the injury, an odd request but I sent them anyway. Two days later I was speaking to a very nice lady who had studied all the photos in detail. It was an absurd situation, here I was chatting to a complete stranger, not even a medic, about my bottom.

She said, “I studied the photos and I see exactly what you mean.”

What did she mean? The mind boggled. In what other situation would that happen? I don’t know how I kept a straight face. I am just hoping I don’t see my bottom on a lightening deal or illustrating a review for this shower chair.

This is a photo of the seat of the shower chair showing the four small holes. They are a little bigger than a 5p piece.

Care, a unique relationship

Care is a very strange thing. It’s a relationship that is very intimate. Only in medicine do we have equally intimate, yet non sexual things done to us by other people. More intimate in many ways than a husband and wife and yet obviously less so because it’s a one-sided intimacy. Think about it, who is the last person who wiped your bottom? Who is the last person who washed you or got you dressed? Your parents presumably. It’s a relationship where strong bonds of friendship can sometimes form and yet there is a professional distance. There is seriousness and fun, work and play, sadness and joy. In a way many of life’s experiences are lived out through the relationship between a carer and client.

Every situation will be different, not every client is fully aware, alert, able to process where they are or what is happening. Not all clients receive care graciously, some will be difficult and awkward. Not every carer will connect with every client. But, when it works, when everything comes together, when people connect well. Then care can go beyond being just a job.

For me I have had many carers where things have come together just right. I started out by finding being cared for the most embarrassing, awkward and difficult of experiences. Over time I have learnt to accept it and find the laughter in the embarrassment, the fun in the awkwardness and the joy in the difficulties. Not taking myself too seriously has been a great way forward. Most of us struggle with pride and a sense of self-importance that makes it hard to accept help and embarrassing to be cared for.

The one word of advice I would offer to anyone facing being newly cared for is to have a laugh. Don’t be heavy, try and look at the silly side of it all and don’t take yourself too seriously. Yes, it is embarrassing and awkward to think about. But, carers are so professional and well trained that when you get to the situation where they are washing, dressing or helping you on the toilet, you will find it is far less embarrassing than you ever imagined.

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