Ambulance transport

(A note of warning for the squeamish, there are descriptions of an accident you may find difficult)

Emergency and non-emergency hospital transport I have travelled in them both. As a kid I used to look at ambulances and think they look fun to have a go in. Of course, in my youth they had simple sirens and blue rotating lights. None of these complex LED, close encounters, night club, stage show lighting effects. Nor the fantastic range of sounds they have now. These days you feel like they could actually play a tune on their sirens. I don’t mean to be dismissive and silly; they play a very serious role and I appreciate that more than many.

The first time I travelled in an emergency ambulance was in 1989. We were living at Wesley College in Bristol where I was training to be a Methodist Minister, I didn’t complete the training due to what happened next. It was breakfast time; I had just come back from morning prayers and was getting my stuff for the first lecture. Mary pointed out that there was a big pile of washing in the kitchen. Our washing machine had been broken for a while and the replacement part had arrived a few days earlier I just needed to fit it. This was not a complex job, just a new drive belt. Had it been a new bearing I would have needed a few hours. So, I decided I would quickly do it before the lecture, bad choice, I was too rushed.

Frances Greaves House, the flats at Wesley College, where the accident happened

Thinking I must have already unplugged the washing machine, note to self and everyone else, always check an electrical device is unplugged before taking it apart, I took the top cover off. The old drive belt had perished and was easily removed. I took the new belt and tried to hook it on to the lower drive wheel. This is not something easy to do just by letting it hang down and hoping it will slide itself on. You need to get you hands on it and push it into place. That was the near fatal mistake I made. I reached down into the washing machine to push the drive belt onto the bottom drive wheel. As my arm reached in, it contacted the exposed pins of a 415v 13amp capacitor. If you have ever witnessed a car being arc welded, that is what happened to my arm. An arc of electricity burnt it and I was also electrocuted. As I was bent over the machine with my arms down inside it, when my muscles contracted it held me tight against the capacitor and thus trapped. Unable to move, being burnt and electrocuted, I knew I was slowly dying. Really I should have died quickly, the doctors say I must have the heart of an ox.

Mary was in the front room with a 5-year-old daughter and a 3-year-old son. First our daughter came to the kitchen door. She looked at me, saw smoke and bright sparks and realising it was something akin to fire ran to the front door shouting “Fire, fire!” Mary thought she was playing. Then our young son came to the kitchen door looked in puzzled and walked away. I am so grateful neither of them touched me. The current passing into them could have stopped their hearts.

Mary could hear the hissing of electric current but assumed I had fixed the machine and it was filling with water. The electricity coursing through me was preventing me moving or speaking. I was in more pain than I had ever experienced or have ever been in since. Ever muscle and nerve ending was being triggered. To say it was agony would be to downplay it.

Eventually I summoned up every fibre of strength I had to repeat the phrase, “Turn the power off.” Mary heard me and came through. Again, fortunately she did not touch me. She was pregnant with Adam. She looked at every switch in the kitchen, not knowing where the flats’ junction box was. Then she worked her way through them all, starting at the light switch. I’d managed to turn my head towards the door earlier. I watched in what felt like slow motion as she switched each of the many switches off. I thought ‘By the time she gets the right one I will be dead.’ But obviously I didn’t die.

Once she turned off the power, she ran to phone 999. As I pulled my arm from inside the washing machine, I got an additional shock. There was a deep hole in my arm and blood pumping from it. Mary was telling the 999 operator I had been electrocuted, not knowing this. I looked around for something to stem the blood flow and found a tea towel to make a pressure bandage. I then sank to the floor in a pool of my own blood.

After phoning 999 Mary ran next door to get another minister in training, a friend I feel forever indebted to, Fran. She came in and without any thought for her clothing or herself, she sat in the pool of my blood and put her arm around me. This enabled Mary to sort out care for Sandy & Chris while we awaited the ambulance.

The ambulance took ages, they couldn’t find Wesley College. When they eventually arrived, I had brightened up considerably. I am one of those people who react opposite to the situation. In an emergency I am less panicked rather than more. I was laughing and joking in the ambulance. They strapped my arm under my nose, and I said, “I am never going to eat bacon again!” Think burnt flesh. By the way I eat bacon all the time now, so that didn’t last. That first ride in an emergency ambulance was a disappointment in many ways. I was sitting up looking out of the window. They didn’t have the lights or siren on. They had checked me over at the flat and decided I wasn’t in imminent danger. They were wrong. The doctors at the hospital told Mary, not me, that the next 24 hours were critical. After a major electrical accident my heart could have just stopped at any point in that time. I was wheeled into and out of the ambulance in one of those special chairs. I don’t mean to sound flippant; I don’t really want to be in need of travelling with sirens on. It’s just youthful expectation of an emergency ambulance. The ambulance crew were absolutely brilliant, helpful, friendly and skilled.

Another time I travelled in an emergency ambulance, was when we were living in Wellington and my legs stopped working again. This was after the two and a half years of them miraculously and medically unexplainably working. We waited many hours for an ambulance with the paramedics in. They had decided from the GP report that it wasn’t an emergency. Not walking is a big problem, but not life threatening.

They eventually arrived about 10.30pm. After some examinations from the paramedic they decided to take me in for further tests at Musgrove. Remember at this point, the reason they had been called is that I couldn’t stand or walk.

The lead paramedic said “As your alley is a bit bumpy and you have a lot of steps into your house, we haven’t brought a stretcher in. Can you walk to the ambulance?”

Obviously, I said I couldn’t. He then insisted that with them supporting me I could. I wasn’t given a further choice. They basically took me by each arm lifted me off the sofa and almost dragged me down the alley. My slippered toes actually scrapped the alley floor. I was trying to move them, but I only managed to move my feet about one step for every five or six of theirs, even then it was only short irregular movements, not walking. It was a terrible and very unpleasant experience. My head was hanging down, my body slumped, my weight supported totally on the two ambulance crew and my legs stiff and dragging. Had it not been for everything else that happened at that time I would have made an official complaint about the paramedic who was leading that team. He should have fetched a chair at the very least. I had enough to cope with losing the use of my legs again to think of making a complaint. Of all the times I have travelled in an ambulance, they are the one crew, the paramedic lead in particular, who were awful. All the others have been so helpful, kind, caring, professional.

I have also travelled many times in non-emergency ambulances. Let me tell you of two. I had an appointment in Liverpool in 2018. The ambulance crew were with Mary and I the whole day. It took four hours each way plus a stop for toilet and lunch. For me the toilet stop was just using a urine bottle in the ambulance. When I travel in hospital transport ambulances I must do so lying down on a stretcher, because of the collapses. Travelling on a stretcher that long, is quite difficult. I had an inflatable mattress to help, but even so the stretchers are very narrow, about my width, and the suspension of the ambulance is hard. I had many collapses and my arms had to be restrained by a blanket so that they didn’t hang uncomfortably down the side of the stretcher. Lying cocooned in a blanket, staring at the ceiling for four hours, being wheeled out to an appointment, then repeating that process home is no fun. It’s not something I wish to repeat in a hurry. But, the two ladies who took us were lovely. A nicer couple of ladies we couldn’t have wished for. They made the journey as easy as possible.

Being loaded into a hospital transport ambulance at Creech St Michael

Another time Mary and I went on a respite break to a disabled hotel in Minehead, its now closed. To get there at the time 2013, we had to hire a Red Cross ambulance. This was before I had my reclining wheelchair. Now that I have one, we can choose respite hotels or nursing homes near railway stations. We can travel by train which means I can recline my chair. It’s not as flat as a bed but works OK for train journeys. At that time, without the wheelchair we were going to Minehead by Red Cross ambulance. They charge quite a lot for their services, fortunately we got a grant to cover the hotel and travel. The crew were very helpful and as with other trips I was on a stretcher cocooned in blankets. If you have ever travelled on the Minehead road you will know that it is windy and a bit bumpy, so I did feel quite travel sick by the time we arrived. Staring at the ceiling, unable to see out, while you body is thrown around causes your brain confusion.

Without ambulances to get people to and from hospital many people would be in a big mess. They make transfers easier, smoother and more comfortable. The use of ambulances for hospital transport for people in my situation is also a great blessing and I am so grateful that we have an NHS which has these services. Apart from the one paramedic I mentioned earlier, who I see as an exception and who could well have been having an off day, the emergency ambulance crews I have met are excellent. They work long hours, see terrible, difficult things and yet remain helpful, professional, caring and understanding throughout. While the non-emergency crews don’t see all the accidents and incidents of their counterparts, they are still hard working, helpful, professional, caring and understanding.

My thanks go out to ambulance crews everywhere.

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Biography of Mike and Mary

Mary and I have been married 40 years having met a year earlier and fallen instantly in love. Yes, the full fairy-tale. We have three children, Sandy, Chris and Adam. Sandy who is married to Christian lives in the USA, Chris and Adam.

Mary and I are the embodiment of north meets south, with Mary from the north. We met when Mary worked at Stoke Mandeville hospital, where I was volunteering at the time.

We have lived in various places Steeple Claydon, Stoke Mandeville, a few weeks travelling in Israel, Simpson Cross (Wales), Bristol, Nailsea, Hartlepool, Hatch Beauchamp, Creech St Michael, Wellington and now Hartlepool again.

Our garden at Creech St Michael

The first signs of illness were in Bristol, but it was in Nailsea that it took hold more fully. Hartlepool is where I first needed a wheelchair. See the blog The unexpected emergency, from our time in Hartlepool. Creech St Michael is where I was first limited to a hospital bed and had carers for the first time, but I was still able to weight bear for transfers sometimes. A number of my blogs are from here, the first being Hello World.

It was also Creech St Michael where a miraculous healing happened, and I was able to walk for two and a half years this carried on until part way through our time in Wellington. Two years into our time in Wellington I was no longer able to weight bear or walk and needed a hoist for the first time. To understand something about this look at my blogs “You can do it again.” And “How can it be OK?

The Nailsea years

Our arrival in Nailsea in 1992 didn’t start well. After an exhausting day moving, with the help of my brother and brother in law, I awoke with a head splitting, sick, eyes blinding, face numbing, migraine. It wasn’t a headache. Our eight-year-old daughter, Sandy was with me, while my wife and two younger sons Chris and Adam, aged six and two were staying with my mum. Having seen that I was totally incapacitated by migraine, Sandy was making her breakfast and a drink for me.

2 Worcester Gardens, Nailsea, 28 April 1995

Worcester Gardens

When I pack a microwave, I use any spare clothes to hold the glass plate safely within the microwave. Not knowing about my clever packing skills, Sandy opened the door saw the clothes in this odd place and pulled them out. I heard the crash of glass from my bedroom and it mobilised me, slowly and painfully. Not an auspicious start, trying to clear broken glass from the kitchen floor, whilst in agony, trying not to be sick. But things got better.

Our first night as a family in this new house was an eye opener. Or should I say ear opener. We’d moved from a busy, noisy street in Bristol and here we were on a quiet road in Nailsea. Mary and I sat down after the children were in bed. After a moment of silence, we thought we’d gone deaf. Then we heard a cow moo. We’d never before or since lived anywhere as quiet, it was lovely. The house itself was not as lovely, it had been neglected and we decided we would only stay there for six months. We actually stayed thirteen and a half years.

We’d moved to Nailsea because of the schools and because our two sons had severe Asthma which meant we needed to move from the polluted air of the city. Selling our house in Bristol we rented a house next to one we planned to buy once the price dropped. This was when house prices were dropping, but faster in Bristol than Nailsea. But our plans didn’t work out. Due to a combination of events we ended up continuing to rent the house in Worcester Gardens.

Nailsea was an amazing place to live and still a place we look back to fondly. The first thing that struck us was how friendly it was. The health visitor recommended to Mary a neighbour across the road who would give her a lift to the school on cold wet days. This was needed because our lads had such severe asthma the cold air would trigger an attack and I used our only car to commute into Bristol for work. Our actual neighbours were amazing too, being so friendly and welcoming.

Safe is a word we always associated with Nailsea, it’s a place where we were happy to allow our kids to play out in the streets or at the local green. After the hothouse schools at Henleaze, our children really thrived at the Nailsea infant and junior and latterly the comprehensive school. The more relaxed and yet solid education suited all of them and they learnt effectively. The infant and junior schools were also very good at dealing with asthma.

We’d never lived anywhere, especially such a small town, with so many large churches. Not just large, but joyful, encouraging, full of life, supportive and helpful churches. As Christians we got to know many folks in the churches of Nailsea.

The fly in the ointment for me is that even before we moved to Nailsea, I had unknowingly been ill. In Bristol I’d been doing work on our house and towards the end of doing that I found my normal high energy levels dropping. Pain increased and I started to really struggle to function. Some days at work I literally couldn’t move for a few minutes and I felt sick and ill. Obviously, I saw the GP, he ran some basic blood tests and for some reason fitness tests, I was told I was unfit and needed to exercise more. In 1993 there was one blood test result that had a yellow highlight from the path lab, my red blood cells were enlarged, more on that later. So, on doctors’ advice I exercised, I started walking a mile each lunchtime and I bought an exercise bike and spent half an hour each night on it. A month later I went back to the GP, he re ran the fitness test and my fitness level had decreased. This was the first thing that pointed to a possible diagnosis. Muscles that are made worse by exercise is a symptom of ME. Normal muscles improve over time with exercise. My GP at the time didn’t believe in ME so he didn’t diagnose that.

Muscle fatigue and tiredness were not my main problems. I had pain, so severe that I could have happily ended it all, had I not had a family to live for. There were parts of my body that lost sensation, like they’d been anaesthetised and then came back a week or so later and another area lost sensation. My legs, my arms, my hands and my face competed with each other to see which could last longest without feeling. I had balance issues, my legs didn’t always obey me and there were other neurological symptoms. I repeatedly visited my GP at the time, who will remain nameless. Each time he ran blood tests there were yellow highlights on my red blood cell result. I now know these are megaloblastic red blood cells.

He called them, “Bully beef red blood cells, a sign of how healthy you are.”

He reckoned that was why the lab highlighted it. I now know it is a sign of pernicious anaemia, he should have known that. But these first sign of pernicious anaemia he totally ignored. There were several other anomalies in my blood test results:

My GP said this,

“In someone who was ill they would be significant, but in a healthy man like you we can ignore them.”

Yes, I found that unbelievable as well. I was repeatedly visiting him because I was ill. He didn’t really see me as ill even though I had lots of symptoms and anomalies in my blood test results. I struggled on working for two years with no answers having to take bigger and bigger chunks of time off work.

One day I was driving up the motorway. I entered it at Clevedon heading uphill towards Bristol. Being early morning, it was quiet, and I was on the inside lane. As I entered the motorway my hands fell off the steering wheel and my feet slipped from the pedals, my body went limp and I slumped forward with my eyes closing. I was not asleep, but frighteningly awake. I really thought I would die. As I was going uphill the car slowed with no acceleration applied, due to the motorway camber it drifted onto the hard shoulder and wedged against the kerb, stalling to a halt. After about half an hour or so, it felt an eternity I came around from what I now call my first collapse. (see other blogs for more details on these) Drove very slowly to the next exit and home. I went to bed and called the GP. He said I was just suffering from exhaustion and overwork and gave me a week off work.

I needed to know what was really wrong. I didn’t know at that time I could have just changed GP’s. So, I paid to see a private doctor. He was the one who diagnosed ME and said only time and rest would cure it. It was a poor diagnosis because it stopped them looking for the other problems, leading to another six years of untreated pernicious anaemia after it had already been untreated for a few years. As the diagnosis of ME gave an open-ended return date for work, my employer fired me because I was ill.

Over the next few years I was mainly limited to the house. I could occasionally get out, on a good day. But I found that my legs, became more and more disobedient as time went on, as if I was drunk. It was only recently that a neurosurgeon explained to me that my inability to walk was caused by the permanent neurological damage, resulting from the pernicious anaemia (central neuropathy) and that there was probably another overarching neurological condition that has been missed so far.

Between 1994 and 2000 Mary not only had our children, but me to look after. There were times when she had to leave them to sort themselves out downstairs, while she comforted me as I lay in bed. I mentioned before about pain. Mary sitting with me gently stroking my head and praying was the greatest comfort. Other times I was lying on the sofa feeling retched while the kids played around me. These were difficult times.

Mike Ill sleeping Children playing Feb 1995 no2

There were times of great joy too in those years. Kindness from friends and neighbours. Generous gifts of money that enabled us to buy food, a car given to us just when our previous one failed its MOT. Help from the churches. One-time Trendlewood Church took Mary and the children on a camping holiday, while our neighbour kept an eye on me, sorting my meals. At the campsite there was a swimming pool, too deep for Mary, as she is only short. The kids wanted to slide into it down a shute. So, the pastor stood in my place like a surrogate dad and caught each of them as they slid into the pool.

Mary found respite in an art group with two friends. The three of them met together for years. Mary also got an allotment near our house. It became her oasis from the stresses of illness at home and a place I could occasionally walk to and sit in enjoying the beauty.

In 1999 I’d finally had enough of my GP telling me I was fine, and nothing could be done. I insisted I see a neurologist. Whom I saw early 2000 and he diagnosed pernicious anaemia. After it was treated, I had a respite in my health. Let me explain for the non-medical. Any form of anaemia causes the body to be starved of oxygen. My body had been slowly starved of a full supply of oxygen since about 1990, when I first had symptoms. Hence the damage to my central nervous system.

From 2001 to 2005 I worked part time for the City Church Bristol as an Evangelist. We set up weekly at Nailsea Market giving out free tea, coffee and biscuits or telling people about the Alpha course.

Market 23rd April no.4

During that time, we also formed a Church plant called Link Church that met for a time at the Town Hall building, where the Baptist Church now meet.

Link Church (11)

One time we put on a fun weekend with the help of a large group of teenagers. It was called The Noise and we held it at Scotch Horn sports fields, August Bank Holiday weekend 2002.

Puppet show

In those years I also joined our children in a couple of productions of Nailsea musicals, my favourite being ‘Lest We Forget’. I love singing, acting, not so much. I am not saying I am any good, I just enjoy it.

It wasn’t that I was totally well in those years. But think of it this way, you’ve been suffering from reduced oxygen for years and suddenly your oxygen levels are returned to normal. It’s amazing, your energy levels increase, headaches decrease, and sickness gets less. Its like going from being on the floor to a couple feet above it, where normal is the ceiling. Its only once you have experienced it for a while that you realise the remaining limitations. What you may have realised about my character, by the fact I carried on working for a few years when I was first ill, is that I push hard and don’t give up easily. I am a fighter and not a quitter. So even once I realised, I was still ill, I carried on doing things. It was after I realised that I was still ill, that I started part time work for the church and joined Nailsea musicals. There is a foolish part of my character that thinks ‘if I push myself really hard, I will be able to overcome this.’ Of course, the actual result was a complete collapse again in 2005. I stopped everything and not surprisingly, having stopped and rested for a few months I felt better. So much better that when I was offered an opportunity to go and work in Hartlepool, part time, I took it. But that’s another story. One you will find in my other blogs.

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Relativity and Time

They say time is relative, was that Einstein? I’m not talking about his theories though, but that feeling of time passing at different speeds depending on how we feel.

You might imagine that time would pass very slowly for me. After all I spend my whole day lying around doing very little. You’d be wrong, time fly’s past, I don’t know why. In fact, at times I don’t know where time goes, I look around and it’s just disappeared. No, I haven’t nodded off, I realise that can make a long film very short or a long journey over much quicker. This is something different, a sense that life is passing by quickly. I realise part of it is age, every passing year is a smaller proportion of my life. So, each day therefore seems shorter. But there is something else too, I enjoy life, I enjoy thinking and learning, I enjoy hearing about things, chatting to people. I enjoy the time I have with my wife Mary. I enjoy spending time with my carers. Going out, even if only occasionally, is interesting and fun. Watching documentaries and films is enjoyable. Maybe that’s why time passes by fast, I am enjoying life.

Time isn’t all fun for me though. I can get fixated on time. We are currently with a very good care agency and a micro both provider who arrive on time or even early. But in the past, I used to get anxious when a carer was due. I am not good at waiting for appointments. So daily appointments are unhelpful to me. It’s better if the carers are always on time and I really know the carer well. But new people and changing times are stressful.

Do you find your life gets ruled by the calendar and clock? So, do I, but additional to that during one of my care visits I might get an unexpected visit. Not every medical visit gets notified to me, some slip through the system. Even ones that are regular, I normally only know a time 20-30 minutes before a visit, when they phone to say they are on route. Which means if they call at the beginning of a care visit, I have a choice, I can say to the person calling “can you call later”, not ideal. Or my carer can start my care and be part way through when they arrive. Obviously with someone like a nurse or doctor that’s not such a problem. But I also get deliveries and service calls from Millbrook wheelchair services and their equipment services. Then it’s not ideal when they phone and say they are on their way and we are mid way through my wash or massage. This can be alright for a delivery, but not for a bed, or hoist service.

Another area time plays a part is when to get ready. We all know, correction, men all know that women take a long time getting ready. Sorry, anyone can take a fair time getting ready to go out. I know not to criticise women; I am surrounded by them every day. Even my Alexa Echo has a female voice.

Most people can throw a coat on fast to just pop to the shops. When I am going out, even if just into the garden it can take 15-20 minutes. I must have a sling put on, the floors need to be covered as we have carpets, the wheelchair brought in to my room, the hoist is then used to move me into my wheelchair. A coat, slippers etc put on. Seat belt, shoulder straps, neck restraint all attached. Then I can manoeuvre out of the lounge into front lobby via kitchen, an art in itself. Mary or a carer puts down a metal inner ramp, this can’t stay in place as it catches on the door. I can then go outside. All this takes a long time. So, we must plan ahead to go out and allow for possible collapses as well in our timing.

Fully togged up for bad weather

Time is very relative; it can pass very fast. It can be difficult to manage. There can be too little of it. But this I know; I am enjoying the time I have.

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Bedroom, dining room, lounge, toilet

Do you live in a caravan? Unless you do, or you stay in one for holidays, then you may find this hard to understand. My bedroom is everything, except the kitchen, in our house. When I came out of hospital into this house in Wellington, the OT wanted to know if my bedroom was accessible. It’s upstairs and a stair-lift, would not be possible. The stairs are too narrow, the angles too tight and the corridor to my bedroom too long and narrow. There are also 3 turns from downstairs to head towards my bedroom. Therefore, only the lounge was suitable as a bedroom for me. No other downstairs room is big enough for my hospital (community) bed, at least not if there were to be any room around it for carers to access me and for my wheelchair to come alongside.

Our lounge as it was
Our lounge once I returned from hospital

Our lounge, in common with most peoples, is the heart of our house. It has the sofas, TV, in our case a piano and it is literally in the middle of the house. You must pass through it to get anywhere, upstairs, the kitchen, toilet or outside. This is the room that has become my bedroom, ‘Grand Central Station’, the seats for our guests, ‘crossroads’, the only place Mary can play her piano, the biggest area of floor for cutting out material when Mary does sewing, TV room, I think you get the picture. But this is also my bedroom, toilet, dining room, reading room, where I can write or watch TV, where I need to rest in the day etc. These two functions do not readily mix.

The quick witted among you will notice I mentioned other downstairs rooms. There are two, both are conservatories and therefore cold in winter and hot in summer. One serves as a craft room come guest room. The other is only big enough as an entrance lobby and utility room, although it does have a sofa in it. One of the sofas my bed replaced in the front room, the other had to be given away. But the sofa in the front lobby is only about a foot and half from the front wall/windows in that room. You can’t easily sit and chat to someone in there. It does serve as a room for people to go to if I am in a collapse. But it doesn’t replace the lounge.

I would rather have a room I can be alone in when we have visitors for a day or a weekend and then choose when to join people. The problem of having visitors for a day or a weekend is that my bedroom is my toilet, all day! It is also where my carers get me washed and dressed in the morning and get me ready for bed at night. That means coordinating timings so that guests pass through my bedroom to the kitchen or bathroom before I use the commode or get dressed. If I need to use a urine bottle in the day, I must ask everyone to leave the room. I don’t find any of that easy, because I don’t like to inconvenience people.

You may get the impression that I don’t like having visitors. That’s totally untrue, I love to see people, although I do have to work within my physical limits. I just find the situation limiting and frustrating. I would think anyone would.

Ideally, we need a property that has a suitable bedroom for me, separate to the lounge. A property that I can easily move around in while in my wheelchair. Of course, when we find such a property, we will be looking for one with a wet room I can access, so that I can have a shower. Bed baths get you clean, but they are not the same as running water.

We keep looking for suitable properties, but accessible properties in our price bracket are not easy to find. In fact, I find it’s very difficult to search for accessible properties at all. Most house sales sites say that you can search for accessible properties, but they don’t break that down into type of accessible property. When you look at the results you can only wonder at their criteria. I have had two floor houses (no lift) come up in searches for accessible houses. Second floor flats (no lift) have also been in the results. Then there are all the properties that look OK on the outside, but when you study the floor plan you can see they would not suit a full-time wheelchair user. I have yet to find a way to search for properties for full-time wheelchair users of power chairs. There is a gap in the market, but I guess it’s a small market.

My bedroom is our everything except cooking room, and that needs to change. Our house is bigger than a caravan, but the concept of everything happening in one area is the same. Next time you are on holiday in a caravan think of me. Of course, you will have the choice to get up and go outside if things become noisy or you need a bit of space to yourself, whereas I can’t. You will also be able to nip to the toilet when you need to, without needing to announce it to everyone. Oh, the joys of disability it just keeps on giving.

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It’s a Smart life

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

Sense Mother

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

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

Echo Show, like I have by my bed

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

Hive Thermostat
Netvue Doorbell camera

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

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

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

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A basic misunderstanding

“You’re the client.” I have heard this said to me several times by care companies as an explanation of why the focus is mainly on me. Mary and I are a couple and the care allowance we have been granted was granted to benefit us both. It is to enable me to be washed and dressed, but also to give Mary a break. Both of those factors are mentioned in the care statement.

One of the biggest misunderstandings I have come across in care is the idea that I am separable from Mary in care companies’ dealings with us. This can cause huge problems and is the main reason we have seen certain carers as more suitable than others. A carer who ignores Mary is totally unsuitable. As with most people, I may enjoy being the centre of attention, but I don’t enjoy my wife being ignored. You would not believe how blatant and rude it can be. In the past we have had carers who have not even said hello or goodbye to Mary. They respond almost in monosyllables to questions she asks. We are a couple and even though I am the client, my care fully includes Mary. Any care for me must fully involve Mary. If she is in any way excluded or ignored or if her wishes are railroaded, the carer is unsuitable.

If a carer takes over our home, putting things where they think best, without asking Mary, that is only going to cause problems. Imagine coming back and trying to find your coffee cup only to find it has been put in a cupboard you never use, out of your reach. It can negate the benefit of a break if too much hassle is involved in finding everything when you return. It is always best to ask. Mary tends to say to carers “if you don’t know where it goes, leave it on the side, don’t guess.”  

Another area that is overlooked is Mary’s role as my main carer. Because of this role, she always asks the carer as they leave if everything is alright. The purpose of her question is the same as that of a handover in a care home. Are there any issues she needs to know about? You would be amazed how many carers have said to Mary “yes everything is fine.”, having just filled in their care notes details of a problem they’ve found, a mark or bruise that needs monitoring. Because they obviously mention it to me, Mary finds out from me. But if I had dementia she would be in the dark. It’s a big problem and one that some carers need to be more aware of. With couples, where one is the main carer for the other, that partner needs to be kept informed of any issues.

We are slightly unusual in terms of care. I am younger than many of the people the agency we use cares for. Perhaps if we were both much older things would be different, but I would assume even in that case the partner would want to be kept fully informed. I would also assume no one would enjoy having things moved to places they couldn’t find them.

Let me balance things now. The current carers we have are excellent. They fully include Mary and do not leave things in places where she can’t find them. They keep her informed and communicate well. That is why they are the carers we have stayed with; they are very good. There are previous carers we have had who have moved on to other companies who we keep in touch with. They were every bit as good and we miss them.

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Mary & I on a trip out

“Had a good sleep?”

“Did you have a nice sleep?”, he said it as a jokey comment, meaning to make light of the fact I’d just come around from a collapse. Words very similar to this are said to me all the time and everyone thinks they are being light. I suppose some cases there’s a genuine misunderstanding and they really think I’ve been asleep. (see photo)

I used to watch thrillers where one of the main characters was dosed with a paralysing agent. They would be lying on the floor unable to move and watch as a murderer entered the room. They would be completely at the mercy of the murderer. That sense of being helplessness in the face of danger is not an uncommon fear, we experience it in dreams, being frozen in the face of danger. In all cases it is very unpleasant and not something anyone would crave.

It is similar, if not identical to what I experience. It was when I was first struck with what I now call ‘collapses’, that first I experienced the reality of this. I become like a rag doll, unable to control my movements, not a rigid paralysis, but a complete loss of voluntary muscle control of my arms, legs and neck. My eyes are also closed. I can breathe and with some effort and concentration, talk, I have gained better control of this with practice. Over time I have realised that I can breathe and talk because my core body muscles are not affected, just everything attached to my core. I should just point out that danger, pain, discomfort or shock do not cause my muscles to move. One other thing that demonstrates this is not a choice (me just deciding not to move), but something neurological is that my autonomic reflexes are muted to non-existent when I am in a collapse. I know this because they have often happened when doctors are around and can run tests. This is a very rare condition and according to doctors I have chatted to, know of only a handful of people this happens to. Because of the sudden onset of these episodes, they are classified as fits or seizures and I am not allowed to drive or operate my wheelchair on a public highway or path. It’s also why I have bed sides and a supported wheelchair. I have written elsewhere about this (The cot sides).

When we sleep, we are obviously vulnerable, but we are also unaware of that vulnerability. In a collapse I am fully aware. I am completely conscious. So that if I am lying or sitting fully awake in a busy environment hearing activity around me and not knowing what might happen it is very unnerving. That’s why it took me so long to venture out. I used to choose to stay inside. It was safer, I recovered quicker because I was less anxious of what would happen, and it was less tiring. I had to learn to cope with the anxiety to be able to face going out. I learnt to control my fear by meditation, breathing deeply and focusing on God. In my head, I pray, sing Christian songs and sometimes just take my mind on imaginary journeys, all to distract myself. This doesn’t take away from external jolts into reality that can cause me a sudden and unpleasant shock. Even something as simple as someone suddenly grabbing my arm to say hello is shocking when you don’t see it coming. In my wheelchair if a child decided to switch on the power and operate the chair you can imagine the consequence. Hence, when I am in a collapse in a public place Mary or my carer stays next to me. In a park or garden there are extra nuisances, wasps, bees, even flies. Have you ever had a fly crawl on your face and been unable to brush it off? Or what about a bee? I have, it’s not pleasant. If you start to think about it, you will realise why I must have someone with me. There are many hidden dangers if you are on your own in a public place and unable to function. There’s also the added possibility someone might phone 999 if I was unattended and looked unconscious.

Sleep is refreshing and leaves you feeling ready for the day. After a collapse I come around with achy muscles and often very relieved it is over. They are not in the least comparable. That is why I don’t really like it when people say, “had a nice sleep?”

I realise that it must seem as if I have many criticisms to make of what others say. I am just as likely to say the wrong thing. I only point out unhelpful comments to try to educate and help people. I have had things pointed out to me many times.

Here are some of my classic blunders in the things I say. Taking the credit for what others do is a big one for me. Very often when Mary arrives back and is chatting to my carers to catch up, I will chime in with how “We, have washed up. We have hoovered. We, have tidied this or that.” The funny thing is the carers never point out I was just watching.

I am far too quick to criticise when I don’t like something and far too slow to thank Mary or my carers. It’s easy when you are limited to get focused on yourself, your world does get reduced, so in a way it’s understandable. But that’s never an excuse. It’s because I realise that I need to learn and get better that I also share things that may help others.

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Me in a collapse at RCH, Dawlish. You can see why people think I am asleep.

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

This video doesn’t exist

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.


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.


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.


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.


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.

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