Home is where the heart is (Update)

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

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

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

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

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

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

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

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

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

Update the government have responded to the report:

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

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

Memory

(Not about health)

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

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

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

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

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

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

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

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

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

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

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

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

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Consequences

1995 Board game

Didn’t there used to be a game called consequences? Not sure I ever played it, I’m not really into board games. Too much time playing monopoly on Saturday mornings as a child, or rather losing monopoly. Mary was saying to me this morning how we sometimes forget there are consequences, we can’t just have fun and games, she was talking about my health. After three afternoons of going out in my wheelchair; today I have been awoken by a severe headache. When this happens, all too often, the headache literally drags me out of a deep sleep as it did this morning. The pain and nausea awaken me. This morning was most likely a migraine, but as I missed the aura, being asleep at the time, it’s hard to be sure. I do know that it seems to be responding, slowly, to the migraine medication, Zolmitripan. At least it is after the second one, which I had to wait two hours to take, then another hour to take effect.

I was woken at 4am, it’s now 8.05am and the pain is lifting, leaving me feeling, rung out and yuk. The plans for the whole day need to change because of this. I just need quiet and not too much light. The tablets are good, but not 100% effective. What they do is stop the agonising, head splitting headache in its tracks and leave a numb rung out feeling, that normally follows the day after a migraine. You feel like you have become very fragile, like a china doll.

Today family are visiting, and I’d hoped to join them at Weatherspoon’s for lunch. But instead we’ve had to hastily rearrange my care so that Mary is free to go with them on her own. That takes its toll on Mary. Changed plans are never easy and in this case mean moving things around in the house so that I can have a quiet space in my bedroom which is also our lounge (See my blog “Bedroom, dining room, lounge, toilet.”), plus organising care and changing other plans for the day. All before Mary’s breakfast. I feel useless, lying here with a cool bag on my head looking pathetic. Needing all the usual things done for me on top of this extra.

We should have learnt by now about consequences. But I find that my memory for suffering is very short and my memory for joy very long. So that when things go wrong and I end up in difficulty, feeling nauseous and in agony, I forget it soon after. That’s why I wrote this on the day it happened. I need to be feeling it to remember it. I’m not sure if it’s a protective thing, or just a very good strategy, but either way it works well. I am not a miserable person. I don’t focus on the bad days. Even during a bad day, I don’t have to be free of pain for many minutes before I move on. My tendency is always to be optimistic and positive. Anyone who knows me well will agree with that. That’s the real reason I never learn about consequences. I have a very short memory. I will also use distraction and adrenaline to override pain and difficulty. If anyone visits, I refuse to look sad and gloomy. This is a very common thing to do for those who are chronically sick. They will mask their real feeling behind a smile and laugh. It’s amazing how effective that is at making people say, “You look so well.”

We tend to judge the degree of illness someone is suffering on how miserable they look or on how white they are. Misery is easy to hide, and I would suggest desirable to do so. Who wants to visit a misery? Don’t misunderstand me here, there are times when the pain becomes so bad you can’t ‘put on a brave face,’ at those times I avoid seeing people. But I find those times come in waves for me. Pain, in my case is more often wearingly long term (chronic). But I realise there will be those who are suffering from severe, constant pain, don’t assume I am talking about them. I can only talk about myself and people in my situation. Whiteness commonly comes with iron deficiency anaemia and bouts of nausea. In fact, people can often look very ill when they have a minor cold and very well when they are dying. I have seen two friends on the day of their death, both looked better than ever. I never guessed it was the last day I would see them. If you have ever seen someone the day after a major heart attack, they can look bright and well. Yet they have not only nearly died, but still have major heart damage. Add into the picture all the major illnesses that show few external signs till the very end and its all very confusing. I always find it odd that a lot of cancers are invisible until treatment starts. The treatment makes people very ill, until it hopefully cures them. My point being that something as life threatening as cancer can sometimes be unseen until treatment starts. We cannot make a diagnosis of how well someone is by how they look. Certainly, a smiling red face tells us nothing. Again, I understand there are those who are severely ill and look it. I am talking of the many who are severely ill and don’t look it. (See my blog “You look so well.”)

I made the best of today, managed to see our visitors a couple of times during the day. Mary brought them in after each of their trips out. It was lovely to be included, but I needed the long breaks in between to recover.

I am writing this last section the next day. Migraine is gone and I am feeling that strange post migraine euphoria, that only migraine sufferers will understand fully. It’s like a weight has been lifted and you are left feeling a little lighter than usual as if gravity has reduced. I tend to get more ringing in my ears (tinnitus) but that may not be common. When I was still able to walk, I used to feel like going for a walk or even a run on a morning after a migraine. The freedom and joy of it having gone makes you want to rejoice. Now I run in my head, although I am always curious how my smart watch seems to find I have done some steps every day, in my bed! I don’t want to disappoint those of you with smart watches who assume every step on your watch you really took. Perhaps my watch counts the steps I take in my imagination? Don’t worry, I know that its based on arm movement so the few steps it counts are my arm moving.

There are consequences to everything we do. That applies whether you are ill or not, it’s just more obvious physically when you are ill. Activity takes a toll easily when your body is weaker. I so enjoy getting out of the house and this won’t stop me. I just need to pace it and allow recovery days. Today is a quiet day before I try out the swimming pool tomorrow (see my blog “Sink or swim.”) Let’s see if I can remember the lesson learnt.

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I’m singing in the rain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lovely day

As I sit in the conservatory at Cleve Spa Coffee shop, the tune playing in the main area is “Lovely day.” Our wedding was before the days of home video cameras being common place; the early 1980’s. But a friend made an 8mm cine of the glorious event, now copied digitally of course. He used the song “Lovely day” as a backing track at the beginning, while Mary and I were getting ready.

Mary and I fell in love the moment our eyes met. I was going to say across a crowded room but that would be cliché. Besides it was in her office. I went to do some voluntary work for her as a photographer. She was a Hearing Therapist at Stoke Mandeville Hospital, I was waiting for a new job to start and at a loose end. She needed photos to illustrate her talks and I was a keen amateur photographer. Between jobs at a photographic studio in London and an electronics distribution office in Aylesbury. Quite a change and another story.

I asked Mary to marry me after we had gone out for 2 weeks, I left it so long as I didn’t want to rush into it. Mind you our parents insisted we waited a year before we got married. Now 37 years later I think things have worked out OK from our love at first sight marriage. I will pause here for the oohs and ahhs. Or is this too sugary and sweet for you?

The film of our wedding starts with a shot of two houses next to each other, Mary’s parents, where she was getting ready and their neighbours, where I was preparing. My mum pops her head out of the door of Mary’s parents house. Presumably checking the coast is clear for Mary to go to the hairdresser. I really don’t know. She could have been checking the weather.

The scene changes to an impossibly young man trying on a jacket and adjusting his tie. I think it might be me. I look so thin I am almost invisible sideways on. Then we move to a shot of Mary, her mum and sister. Veils are being tried out over the wedding dress. It’s all very romantic and very 1980’s in fashion.

Next we see the Methodist Church where we were married. Mary’s brother is playing the organ. ‘Only fools rush in’ not a song I knew at the time. I didn’t even know it went on to say “I can’t help falling in love with you.” I thought he was just being ironic, because I’d asked Mary to marry me so quickly.

I remember that day so well. My knees knocked so loudly people at the back went to answer the door. I was so rigid with fear I couldn’t even turn to face Mary as she walked up the aisle. I wanted the floor to swallow me up, I was so nervous. But, I was also very happy to be marrying the woman I loved. At the reception my speech, which was the first bit of public speaking I had ever done, should have indicated to me never to repeat it. I listen to the film recording ever since in horror. No one would believe I would go on to speak to crowds of hundreds both in the open air and in large halls. When I have spoken since I have been as nervous as on that day, but I’ve learnt to control it better. I have also been taught to speak from my chest not my nose since that day. I can’t replicate the way I spoke at the wedding, just as well.

One of the many things I miss, being limited by health, is public speaking. Specifically what a lot of people would call preaching. Although that term has gained a negative meaning to most people. We say “don’t preach at me.” Meaning, don’t tell me what to do. Or we talk about preaching, meaning people who stand on the streets shouting condemnation at passers by. Telling them they are going to hell. Neither description fits what I do.

When I preach, or as I would rather describe it, talk about God. I share about God’s love. How we all fail and need help. How God knows that, and wants to reach out to us through Jesus. I share about Jesus, who says “Come to me all who are weary and heavy laden and I will give you rest.”

I saw a cartoon on facebook recently that was an atheist view of life, after leaving religion. It showed a line of people under umbrellas in the rain. One in the middle, supposedly having left religion, was putting down their umbrella and finding it was not raining. I found it very funny to see a cartoon depicting the exact opposite of reality. Life can feel very tough without God. We can feel inadequate and try to measure up to standards of the world that are impossible to meet. We end up feeling stressed, overworked, overwhelmed and desperate. The image of rain captures that feeling quite well. Then when we turn to God, through Jesus, it’s as if a weight is lifted from us. It feels like the sun starts to shine, even in the dark. Some people describe it as like a new life. If that is preaching, then I am guilty. What I don’t do is condemnation or judgment.

On our wedding day I managed to break my cufflinks cutting the cake. Why I was using my cufflinks to cut the cake? I don’t know. Actually I was holding Mary’s hands over the top of a knife handle as we attempted to cut the cake. We forgot where the soft part of the icing was. So we were pressing too hard. Rather than just mark the icing we were determined to cut the cake. All the pressure on the hard royal icing with two pairs of hands pressing down broke my cufflinks. My dad gave me his spare pair, which I still have.

Earlier in the day I had taken photos of Mary while she was being photographed by the professional. On the film you see me in the walking backwards motor drive firing, taking multi shots of Mary, looking very cool. Mind you the most impressive bit of photography I did at a wedding was when I married my sister. No there was no incest. I was able to conduct her marriage as a Methodist Minister in training at the time, in the 1980’s. But, as I also volunteered to take her wedding photos I pronounced the final blessing, then ran, I mean processed speedily, ahead of the bride and groom down the aisle so I could photograph them walking down. I wasn’t in as many photos as would normally be expected.

Back to our wedding. One other funny thing happened. On arrival at the church Mary and her Dad arrived without attendant bridesmaids and the photographer wanted to capture them arriving. The chauffeur kindly obliged in preventing Mary’s train from getting dirty. He carefully ducked behind Mary and her Dad, trying to keep out of sight, holding the train. The problem being he was very tall and large, whereas Mary and her Dad are shorter and slight. They were not designed to hide him. Somehow he was invisible on the photos. But he is beautifully captured ducking behind them up the driveway to the church on the Cine film. It is a very funny sight as he impersonates Quasimodo, with Mary and her Dad apparently oblivious in front.

While on the subject of weddings we once went to a family wedding where the announcement at the speeches was, “my Lords, Ladies and gentlemen.” No I am not showing off, the Queen wasn’t there, she was busy.

I can’t believe that as I finish this blog we are still at the Spa. We have had a light lunch and an afternoon drink, so perhaps that’s alright. What a lot of memories are triggered by a song.

Me and my big mouth

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

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

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

A large format negative

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

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

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

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

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

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

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

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

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

“Shall we hoover the floor now?”

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

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

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

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

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Strangers on a train

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

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

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

One of the many wheelchair space layouts on a train

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

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

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

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

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

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

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

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

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

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

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

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

A fragrant offering

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

“Wow! Mike smells amazing.”

Or possibly more likely:

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

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

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

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

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

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

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

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

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

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Science fiction or fact

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

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

Sleep monitoring ring

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

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

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

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

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

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Cutting through the red tape

(This is based on my experience, written as a personal guide, not an instruction manual.)

I’ve realised that for many people, including me, becoming ill is enough to cope with, without the hassles of ‘The System’ to navigate. So, I thought I would write a blog on cutting through all the red tape, aimed at helping anyone who has just become long term ill or disabled, or if you have family in that situation. I’m only writing from my personal experience. I do not claim to be an expert in this area. You need to check details of your particular circumstances with the DWP, NHS and/or local adult social care. I also highly recommend the CAB (Citizens Advice Bureau). This blog is designed to raise questions, not answer everything.

The first thing I discovered is that there are two separate systems when you are long term ill and about to be released from hospital. The NHS (hospital) and the community. Therefore, if you are in hospital and have a life limiting condition, the hospital have their own OT’s (Occupational Therapists) and Physio’s that are separate to the community ones. This might seem obvious, but it’s important. The significance being that the hospital team assess you and see if you are fit to return home and if so what equipment and care you need to return to your house. They put in place all the initial things you will need. Things like a bed, commode, carers, etc. But the care they setup is only temporary, a few weeks at most, whereas the equipment can be permanent. There is a problem though. They don’t sort out high spec wheelchairs (I believe they may loan push ones) and unless you already have a wheelchair or can get one, they don’t sort out ramps, temporary or otherwise. The reason that’s a problem is because ramps are not just needed for wheelchairs, but also for stretchers. I was returned home by stretcher, so the lack of a ramp was an issue. You’ll also need a ramp for any follow-on hospital visits if you, like me, need stretcher transport to hospital.

When I was last in hospital and due for discharge, the longest delay in getting home were access issues. The hospital transport service sent out an assessor to check access at my home. As an aside I should explain this was in January 2018 at the end of the period of time I was able to walk (look at my other blogs for details). So, we were in a house with normal access. In our case we have a step. How many houses don’t? The assessor said we needed a ramp; he also reckoned our inside access was too tight. It is tight, but I have had stretcher transport several times since too and from. He was prepared to have the crew try the internal access but would not authorise my return without a ramp. The hospital would not supply a ramp as I had no wheelchair at that time. A circular argument. We had returned my previous wheelchairs as I had been able to walk for nearly three years. After my wife had many fruitless phone calls to the hospital OT, a friend of ours assembled a temporary ramp, enabling my return home.

This is where I am really grateful to a wonderful friend for that ramp, and a fantastic ambulance crew, three of them (an extra one joined them at our house). They persevered even though the temporary ramp was not ideal for my weight on a stretcher. This enabled me to get home. Our friend did a lot more than the ramp. He helped Mary prepare the front room for my community profiling bed.

A word about the temporary care package from the hospital. They put your care requirements on a system that gets bid on by a few care companies. The lowest bid wins! The trouble is companies that bid don’t necessarily have enough capacity. They just want any extra business; it seems they bid first and see if they have capacity second. The company that won me in auction, it feels that way, did not have capacity for the hours I was supposed to get. Which meant that I was given less care each day than I needed, even though they had bid on it and accepted the contract for those hours. The other problem is that the care company who accepts the contract has that contract with the NHS. So, they don’t feel they need to meet your wishes, the NHS is their customer. Every problem I had first had to be authorised by the NHS.

Next step Adult Social Care, that’s community, they take over your care and therefore the payment and authorisation of the care package. This still means you are not directly the client of the care company. But it’s a step towards things changing. You start to get choice. Adult Social Care do an assessment of your needs. They decide how many hours care per week you need. If you have a partner caring for you, they look at respite weeks for them and extra hours care that will help them if they have needs. Looking after someone who is long term ill and needs 24/7 care takes its toll on your health and respite breaks help to prevent burn out. If your partner/carer becomes ill, then the state will end up looking after you full time. They want to prevent that.

Once care is granted by Adult Social Care, you have two choices. First you can let Adult Social Care get you those hours exactly, but from a supplier of their choice. You will not be the client directly. So, it will be like the hospital package with all the control out of your hands. Or you can take direct payments which are less money per hour than any care company charges, yes you heard right, than any care company charges. The council get special rates on everything, so a couple of companies have negotiated prices with them that are at the rate they pay if you let Adult Social Care organise your care. But those care companies treat those contracts as second class. That is my opinion, I cannot claim it as fact, it’s how it feels. They send whoever they want at whatever time suits them. So, if you have a problem with smokers, or loud people or if you don’t want male carers or have any special requirement, tough. If you want to get up at a set time each morning, you’ll be lucky. The cheap rate for the council comes at a cost. Yet some of the staff I have spoken to at Adult Social Care seem unaware of this. They are convinced there are agencies that charge the adult social care rates to individuals, I can’t find them. Either they are as rare as hens’ teeth or like Scotch mist.

I just want to say a word of praise for our main Social Worker, she is brilliant and does understand these limitations. She just has no power to change it. She did a fantastic job organising my care and setting everything up. In fact, most social workers we have dealt with are great, they just lack the power to change the system. The current system means you no longer get a permanent social worker. One sets everything up for you, then you just call the ‘hub’ and speak to the duty social worker for any changes. I am always pleased when the social worker who I know is on duty. For some unknown reason three departments organise Direct Payments. Adult Social Care authorise it, a department at the council pay it and a non-governmental charity, in my case Enham, administer it. Three different lots of staff are being paid to sort out one lot of money. Is that efficient? Cost effective and or does it waste the money that would otherwise go to care? You decide, I have my own opinion.

Direct payments buy you less hours than you are assessed for, but you have choice and can get consistency of carers. They buy less hours because of the difference between the amount per hour paid by adult social care and the amount per hour charged by care companies. Normally at least £2-3 per hour different. I think counsellors and politicians who setup the system should be forced to have the council run system of carers provide them care for a few months. Or try to buy care at the amount provided under direct payments. It’s a nonsense to say you need a certain number of hours then give you insufficient funds to buy those hours from any care agency. Even micro providers charge more than the amount given and they are self employed individuals. The system would soon change if politicians had to use it themselves. One other thing, you receive a different rate of Direct Payments if you use an agency than if you use a micro provider. A little higher for an agency as they are CQC registered and have lots of extra paperwork.

The basis of how much, if any you pay is assessed by the council based on your income and savings. I understand we live in hard pressed times and I realise that I am fortunate to live in a country that provides free care to people like myself without other means. But my point is that either the correct amount per hour should be supplied or at least it should be acknowledged that it is impossible to meet the hours assessed with the amount given. To pretend that the hours assessed and payment given match or can ever match is a folly.

The other very odd part of the system is for respite care. That whole system is very upside down. The way it works makes no sense to me. But it’s too complex to explain here.

A lot of things run in parallel when you come out of hospital. An OT and Physio from the community should be assessing you. A district nurse will no doubt call on you and if you need it, your GP. Depending on your level of limitation you can get almost everything done at home. There is a dental access centre in Taunton you can register with, they do home visits. The same rules apply as with visiting a dentist in terms of payment. If you had free treatment before, you still do. The GP can visit you. Even opticians can test your eyes at home. Again, the free treatment rules apply. But, dental and optician visits at home are second best to going into a practice. They travel with very limited equipment and can’t do everything. So, if you can travel, then do.

With hospital appointments if you have no transport of your own, need to travel by stretcher or wheelchair on public transport would be impossible (buses with a large power wheelchair are a nonstarter). There is hospital transport. They question you closely about why you can’t travel by another method. Hospital transport is also a very inconvenient method of transport. You must be ready 2 hours before your appointment time and can wait an hour or more after.

It’s the OT who assesses you for aids. The hospital OT will have supplied initial equipment, but things like hoists, slings, chairs and other more specialised equipment will come from the community OT or they will advise where to buy them. On the subject of hoists, if you are unable to stand or weight bear, the standard type supplied will be a push portable one. Ceiling hoists are only supplied if they are deemed necessary in your circumstances, as they are in ours.

Just recently we have been made aware that there is a specialist OT who deals with housing, both modification and allocation. No one told us about that when I was sent home from hospital into my front room without access to a bathroom and with difficult access to our house. That’s why I am writing this blog for others. Information is vital, we should have been told advise was available about housing. If in doubt, ask.

Wheelchairs are a whole area in themselves. You need a GP referral for a wheelchair. That referral goes to Millbrook Healthcare. They send out an assessor, eventually. It took 8 months for me and apparently, I was marked very urgent. It seems to me that the new privatised system for wheelchairs is slower than the old system through Exeter Wheelchair Services. In Hartlepool, the NHS wheelchair service assessed me and built me a custom wheelchair within 3 months. The way it works with wheelchairs is that you are assessed for the minimum type that meets your need. In most cases that is a push wheelchair. If you need a power wheelchair because of your needs, then you will only be allocated one if you can use it inside and outside your house. Years ago, when I was first allocated a large high-backed reclining wheelchair, it was still a push wheelchair. See my blog ‘Keep on rolling’. You only get a ramp supplied in your house once you have a wheelchair. Some Church friends bought me a second-hand power wheelchair while we awaited the NHS chair, this meant a temporary suitcase ramp was then supplied. But we were fortunate, friends from Church paid for and other Church friends built an even better concrete ramp outside our house. It accesses our front door and back garden.

Me using the concrete ramp outside our house last year, in wheelchair our friends bought while we waited for NHS one.

I hope my experiences have cast a little light on a complex area. You can see there are many anachronisms and it’s frustrating to navigate. Without Mary sorting all this out over the last few years I don’t know where I would be. She has had many a stressful phone call with different departments. I realise this blog may make it sound like I sorted things out. In reality most things were sorted by my wife Mary. I have only really got involved more recently as things have been easier.

May your journey through the red tape be a simpler one than ours.

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A writers’ life

When I used to picture my future life as a writer. I was sitting on a sun-soaked veranda in the South of France, sipping an espresso and glancing out to sea wistfully, while conjuring up scenes of fantasy and adventure. Instead I’m lying in bed in a small room in Wellington, looking out at our tiny courtyard garden, writing about the frustrations and daily joys of life with a long-term disability. Yet it is that reality which has led to me living out the life of a writer, not my childhood fantasy.

Mind you, right at this point in the blog I’m sitting in a conservatory on a sunny day, at Cleeve Spa Hotel. It’s attached to their new coffee shop and is a great place for me to sit and write. My cup of cappuccino is beside me. I have a view of trees and distant fields through the large picture windows. There’s a gentle squeak from the coffee house sign as it blows in the wind outside. Just enough to give ambiance and interest. Playing in the main part of the coffee house I can hear the strains of background music. This is not a busy place yet, good for me, but no doubt not good for business. I can’t imagine it will stay that way, as people discover this oasis on the outskirts of Wellington that serves food and drinks from early till late in such lovely surrounds.

Conservatory at Cleeve Spa coffee shop

My bottom is reminding me I’ve been sitting in my wheelchair for quite a while. Even though I have a battery powered ripple cushion, a result of generous donations from friends and family, my sensitive bottom still feels the pressure. The “occupational”, is that the right word, hazard of a permanent wheelchair user who still has feeling below the waist. Not that I would want to lose that feeling, many other problems would ensue. My gluteus is not very maximus. It never was, but since the illness I have tried not to put on too much weight. The easiest thing to do when you spend all your time limited, is eat. The easiest things to eat are sugary, sweet things. I can polish off a whole packet of biscuits, or bar of chocolate, not the small ones. So, I had to make a choice. A few months ago, I was going through one of the regular bouts of sickness I get. It put me off most food, but particularly sweet stuff. After I recovered, I just made a choice to continue not eating sweet things. Although I had lost the sugar cravings, the desire for sugar was not gone. Christmas was very difficult, and Easter a complete nightmare. But I continue and it is not just enabling me to continue at my current weight but even lose weight. Important when you are hoisted and have a limited width wheelchair. I’m not yet in danger of fading away “to a cough drop.” As my mum would say.

Back to ripple cushions. I had only heard of them as being mains powered, for beds or armchairs. There are ones, again mains powered for wheelchairs. But what is the point of a non mobile ripple cushion for a mobile chair? A ripple cushion is an alternating air-filled cushion, they work in different ways, but the principal is the same, pressure changes on different parts of the cushion, so that you get a ripple effect. In the case of a bed mattress, as I have, the pressure change moves up and down the bed. It’s like moving a patient regularly to prevent pressure sores. The same applies to cushions for chairs or wheelchairs. But I’d not seen a portable one for a wheelchair until a few months ago although I thought there must be such a thing. It was developed by one company and brought out in 2017 and it’s called an Alerta mobile cushion system, this has been amazing for me. I can now stay much longer in my wheelchair. I still find the discomfort builds up after a few hours, so I must recline my chair to alleviate that. The key difference is that I’m sure I will not get pressure sores, it’s just uncomfortable after a few hours in one position. The device prevents sores by the ripple effect of alternating the pressure in different areas of the cushion, but no device can prevent discomfort from sitting in one position. Wheelchairs by their nature restrict you to one position. I am fortunate that I can profile my wheelchair and so alleviate that.

Because of a combination of things. The profiling wheelchair, the Alerta ripple cushion, Conveens (see my blog Not so public convenience), and my new medication we can plan a trip by train to stay with one son and hopefully also see the other and his wife. Train assistance and wheelchair accessible taxis play their part too.

One extra factor has made planning this trip possible. A hospital type bed at our son’s house. I first looked at hiring one. Once I’d recovered from the shock of the price quoted and they assured me that wasn’t to buy one, I looked on Ebay. A wonderful gentleman was selling, not just a profiling bed with sides, but everything else I needed thrown in, all for £99. One problem, it was over a hundred miles from where my son lives. Transport looked costly. Then this amazing guy volunteered to drop it off for the cost of the diesel; £20. There are some very generous people out there. Now I will be able to travel to our son’s house, have a bed to sleep in that I can match to my wheelchair height and slide onto. Not ideal, but I can do it for a week. I will really look forward to my hoist when I get home.

Those more astute of you, I’m just buttering you up, will have noticed that my blogs include a wide variety of types. There are autobiographical, fiction, poetry, thoughts, theology, experience and I am not the only author. Mary has so far written one piece with more to come. The blogs were written over several years, some are very recent, and some over ten years old. Some were written when I was taking my OU degree in English Lit and Diploma in Creative Writing. Yes, that’s right, that means I know nothing about writing. Each type of writing is categorised but depending on the type of device you are reading this on, those categories may not be obvious. A word of warning, if you are reading this post on a phone, watch out for that lamppost ahead! I feel I must say that now as one of my readers nearly walked into one while reading my blog.

It takes me a while to finish off a blog, so as I finish this blog it’s 4.30am and I’m sat in bed. It’s still dark outside, but at least it’s warm. When it’s cold I have a woolly blanket to put over my shoulders. A friend from church knitted it while praying for us, so we call it our prayer blanket. I used to sit in a small pool of light from my bedside light, but now with all my smart switches (see my blog It’s a smart world) I have light all around me. Sitting, surrounded by light is where I will leave this blog.

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A moment at a time

Diary extracts:

September 9th 1993

Migraine, chest pain, sickness. 4 lots co-codamol, 4 lots Ibuprofen, 3x Metoclopromide and 1x Zomig

24th March 2010

Woke at 4.50am! This is getting ridiculous. My right shoulder has joined the clamour of pain waking me each morning. Still it makes a change from the headache that usually pierces my slumber.

12th May 2019

Woken at 2.40am by pounding migraine. When will I learn to pace myself better. I had been to a two hour get together the night before, really enjoyable, but beyond my capacity.

******

Normality?

At a recent consultant’s visit, he asked me:

‘Can you remember being normal?’

‘Yes!’ I replied aghast.

I wasn’t aware that illness made me abnormal. In fact my memory of normality, if that is what it was, is painful in many ways…

There was an incident that still shames me to this day. A friend of my wife Mary was visiting us with her little boy. It was early in our married life, before we had children. The little boy had a long term, but not life threatening, illness. I was very intolerant of illness. We were having a cup of tea and the little boy, who was about five years old, was sitting and playing quietly with some Lego blocks on the floor. His mother was chronicling to us details of her son’s illness, and the many doctors he had seen.

As a trained medical expert with zero years of aesculapian training and no experience in healing, I sat and observed this seriously ill child. Watching him playing quietly for ten minutes, I could of course make a complete medical assessment of him.

‘He doesn’t look ill.’ I stated.

His mother was taken aback and responded sharply.

‘He does have a few good times.’

‘But he’s playing quite happily now. You said he’s always ill.’

‘He is ill! Playing for a couple of minutes doesn’t change that.’

‘Oh… I see.’ I said with deep meaning.

I chalked that up as a point won as I watched his mother squirm. Mary looked crossly at me as if I had done something wrong.

‘Mike, why don’t you go and get the cakes.’

So I walked out victoriously, while Mary tried to console her friend. I had proved my point to my satisfaction. The mother stopped talking about her ill son.

It wasn’t until I became chronically ill years later, and started to suffer a similar disbelief from others; that I realised how badly I had acted. I have often wished I could see her again and apologize, but we’ve lost contact.

An illness that is not visible to a casual observer is a curse twice over, once because of the illness itself and then because of misunderstanding and disbelief. People are not deliberately cruel; they are merely ignorant, as I was with Mary’s friend. Ignorance leads us to think we know best or to judge without understanding.

******

Conversation:

Terry is someone who is happiest in a throng of people. At six foot with rugged features, and a confident manner he has always been attractive to women. He was unhappily married once some years back. As a very loving father of an only son he has spent most of the six years since looking after him, with his ex-wife taking the weekend shift.

Terry has recently set up a company to run from home. One thing about Terry that has always struck me as odd, is that he is the most laid back ‘workaholic’ I know. I have known him since school and I have never seen him as being in danger of ‘overdoing it’. Yet somehow in his relaxed and laid back manner, while seeming to do very little, he gets a lot done. He is a conundrum to me.

One day we were sitting in his spacious lounge, Terry was stretched back as usual on his huge red sofa.

‘I’m never ill, I don’t have time.’ stated Terry, while answering a text on his phone.

‘You don’t just get ill when you have the time.’ I replied in surprise.

‘My approach is positive thinking, I don’t let illness stop me, and I just keep going.’ Terry finished his text as he spoke, and then looked up at me.

I took hold of my increasing annoyance at Terry’s lack of understanding and replied:

‘I think you’ve been very lucky not to have any serious illness that would prevent you working.’

‘Oh, I’ve had loads of illnesses I just ignore them.’

‘Right – Let’s look at something well known like flu. They say the definition of flu is this: “When you’re too ill to get out of bed to pick up a £10 note off your windowsill.” So when did you last have flu?’

‘When I have flu, I just carry on working.’

I took a deep breath to remain calm.

‘In that case you are talking about a bad cold not flu. The reason for the definition is so that you can understand the difference.’

‘When I’m very ill it just doesn’t stop me working. I have a strong constitution.’

‘Terry, I used to think like that. I worked on through bad colds, migraines and I even drove 300 miles with pleurisy, for goodness sake. In fact they reckon it’s because I carried on working through illness that I am so ill now. There are some things your body will not let you ignore… it just stops!’

‘Well I can’t afford to be ill; I have far too many commitments.’

We were saved from further argument by Linda and the children returning from a walk.

******

Memory:

I see my life stretched behind me like the contents of a roof rack shed upon the road by a speeding car. I can see it arrayed messily behind me on the tarmac of life. Some memories piled up others spread out; some appear damaged parts missing, others almost complete. There in amidst a great jumble I see one particular memory. I had forgotten it, packed it away.

It is the early 1990’s and I have been ill for over a year, but off work just six months. One of our son’s is having a birthday today. We are celebrating his Birthday, and I am hiding how ill I feel. As we start eating his Birthday Cake there is a knock at the door. Mary answers it and finds my boss standing there. She invites him in:

‘Come in Martin, it’s our son’s Birthday, we’re having a party. Do you want a cup of tea…piece of Birthday cake?’

‘Umm… no… sorry… I hadn’t meant to… intrude. I.. just wanted a word with… Mike. Urr… Happy Birthday.’ Martin faltered.

‘What was it you wanted?’ I asked.

I was sitting at the table with our children surrounding me, chocolate cake smearing their faces and hands. They were very excited to meet my boss. Our son assumed that he must have come especially to say Happy Birthday.

‘Can we talk privately?’ Martin asked, regaining his confidence.

I walked hesitantly into the hallway, but the children were so excited they followed me.

‘Wait there children, I’ll be back in a mo.’ I was feeling a sense of foreboding.

Once we were alone with the door shut Martin began.

‘Umm… when you came to the office today to hand in your doctor’s report, you should have been given this.’

He handed me an envelope.

‘What is it?’

‘It’s a notice to terminate your employment, with one month notice, effective today.’ Martin stared at the floor while he spoke.

I had never been fired before and certainly not for being ill. So I just stood staring at him for a moment before saying:

‘Why?’

‘Because you are not able to carry on your job due to illness. I’m sorry.’

He then left without saying goodbye to Mary. I slumped onto the stairs and stared at the letter. Mary heard the front door close and came into the hall. The children bounded out behind her.

‘Daddy ready now?’ our son shouted.

I just looked blankly at him.

‘Are you OK? You look shaken.’ Mary asked gently.

I was trying to control my emotions but Mary’s gentleness released my pent up sadness. We have always believed in being honest with our children about feelings, as long as they also saw how things were resolved. I would not have chosen to be upset on our son’s Birthday, but the pain had to be dealt with, so I cried and we all hugged and talked. After we had expressed our sadness we finished eating the Birthday cake and watched a family film. It was not the way I would have chosen our son’s Birthday to be and I felt bitterness towards Martin. But he did not know how bad his timing was.

******

Reflections:

My profound relief is that illness comes a moment at a time. Had I known back in 1993 that I would still be ill in 2019 I don’t think I could have coped with that. It is easier to cope day by day rather than looking many years into the future. That way there is always hope and there are always fresh challenges.

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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Disability and the state

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

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

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

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

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

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

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

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

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

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

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

How can it be OK?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Find one near you https://alpha.org

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Me able to walk in 2015 following a miracle.

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

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.

Kid’s Stuff

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

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

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

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

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

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

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

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

Laughing we carried on to the park.

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

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

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

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

There are many other blogs to explore. Please feel free to comment and if you enjoy them, please click like.

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Typical item that is both for baby buggy and wheelchair

You look so well

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

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

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

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

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

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

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