Fame at last

The Mail on Sunday picked up on my article, ‘Enabled by your environment.’ I was interviewed about it and this article is the result. They have given it a very distorted spin. But heh, what do you expect from the national press.

https://www.dailymail.co.uk/health/article-11087385/Disabled-Britons-forced-opposite-end-UK-shortage-accessible-properties.html

A Special Thanks

‘A special thanks goes to…’

I feel like one of those award show hosts. But without the false tan, bleached teeth and the big hair. Well without much hair at all really. Let’s not talk about teeth. Back to the thanks:

‘A special thanks goes to….’

 ‘The award for the best… goes to…’

Hey, maybe I should be an awards host. I’m a natural. I can just see me up front, in a big Hollywood venue. Will they have a ramp for the wheelchair? Or would I need to present from in front of the audience, just by the orchestra pit? I know, will start off with:

‘Welcome to the 2022 awards for the best…’

Everyone will be looking around asking, ‘who’s that speaking?’

‘Where is that deep and luscious voice coming from?’

‘Is that James Earl Jones’

‘No, don’t be silly, it’s Morgan Freeman.’

Anyway, enough of the asides. I am writing this blog as a big thank you. A very big thank you. A special thanks to the two social workers from Hartlepool Borough Council, who have helped Mary and I these last few months. I would love to name them, but I am told I can’t and besides, they know who they are. Thank you El and Karla, oops, no, just made those names up.

The two of them have helped us sort out care provision at a really difficult time. They have demonstrated empathy, understanding, care and patience. I cannot praise them highly enough. Anyone who has read my blogs regularly will know that I believe people who care for people are the most valuable people in the world. Does that remind you of a Barbara Streisand song? ‘People who need people, are the…’ Totally different meaning of course. But give me the whiff of a song and I’m off.

Back to these two amazing and wonderful social workers. Along with all those who care for and help others. We had a brilliant advocate as well. Not Advocaat that’s a cream liqueur. They should be recognised as the best and paid the most. People who care for people, not cream liqueurs. Instead, we as a country and indeed, the world recognises them least. We value money, fame and entertainment over those who care for people. What an upside-down world we live in.

I know this, when an MP, banker, millionaire financier or the PM is ill. They won’t be calling on their brokers, personal assistants or advisors to care for them. However highly they pay them. They will turn to health workers, carers and those at the sharp end of care. I am pleased to say that when we have needed to do that, we have found help and support.

As I round off my awards ceremony, I repeat my special thanks to these two wonderful social workers from Hartlepool Borough Council. Well done you are brilliant people, and we really value you. Everyone who can stand, up on your feet for a rousing applause.

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Habinteg Post

Our policy work is central to our strategy to improve housing options for disabled & older people. 👉 https://lnkd.in/dCwhAQvw

As part of that work we produce evidence – like our Forecast for Accessible Homes – to influence policy & support best practice in accessible housing.

#ukhousing #property #accessiblehousing

This is an important issue

We don’t think it’s right that only one new accessible home is planned for every 15 people over 65 by 2030. That’s why we could use your support in calling on the Government to establish the accessible & adaptable standard – Building Regs M4 (Cat 2) – as the baseline for all new homes. (Although this is UK, I am sure there are issues worldwide)

Reshare if you agree & join us. →https://lnkd.in/dCK6iEN

In A Galaxy Far, Far, Away…

Star Wars must be the most disabled conscious movie franchise ever. Unrealistic and silly, of course. But, it has so many disabled people in it. Some play really major roles and are completely unlimited by their disability. Just think of Darth Vader.

Never mind blades or artificial limbs. Take a look at the reconstructive surgery on Star Wars. This was ‘A long time ago,’ not just, a long time ago, but, ‘in a galaxy far, far, away.’ Obviously one that believed in equal access for all. Now it’s true, they had slaves and they went around blowing planets up. No ones perfect. They also didn’t have the best environmental record. Any civilization that has a complete planet as a city, has issues. Then take a look at the amount of metal and technology in their garbage disposal. What about all the stuff they jettison every time they go to light speed? Don’t get me started on their waste of energy. Heating massive empty spaces with ceilings that disappear out of view. Come on evil empire, join the energy saving nations of the universe.

As for health and safety. I don’t think they had thought of it. All those balconies on space stations without railings. The bridges that retract. Then when they do extend, they have no railings. As for the idea of having a power station in your living quarters with an open access to fall into. That’s just asking for trouble. The Evil Emperor did very well not falling into it long before Darth Vader threw him in. That was an accident waiting to happen. Pod racing? Well, it makes all the sports we have look suitable for kids.

But I am blogging about disability. Which is just as well. So I don’t need to look at any of that. Darth Vader is a disability hero. OK, so he may have murdered millions of people. He had his faults. But, he was severely disabled. Only half legs, half arms. Major lung problems. He doesn’t just sound breathless, he was. Yet as he strode around the battle stations. Strangling disobedient Admirals, he looked fit as a flea. It’s just as well he didn’t need to pass any PIP assessment. He would have failed.

Imagine the scene. He would have sent the form back. Truthfully saying that he had no legs below the knees. No arms beyond the elbows. Serious lung problems (COPD maybe?). But with PIP they are not interested in what you have, but what you can do. So they would ask. 1/ How far can you walk. DV would answer. ‘Don’t waste my time with your puny questions. I have a Death Star to inspect. The examiner would check the size of a Death Star and put the answer down as 6 miles+. 2/ Can you lift a bag of potatoes? DV I will rip that generator from the wall and throw it at you. The examiner will look at the generator and estimate the weight at 3 tonne and put, yes. The rest of the questions would go in a similar way. When Darth gets the PIP refusal letter, he would lift the examiner by his neck and say, ‘your lack of respect disappoints me.’

It’s not just Darth who is amazingly able in spite of disability. Luke Skywalker has a false hand. Yet you would never know it. Luke’s Uncle ends up in a flying wheelchair. I want one of those. Why aren’t they around, a long time later, far, far, nearer.

There are even characters whose only human organs seem to be a human heart. That gives a new meaning to a heart transplant. Maybe they do body transplants? Disabled people may not get a blue parking space on Star Wars. But they get flying wheelchairs, robotic parts and complete new robot bodies. I am not queueing up to go to that universe. I don’t fancy everything that goes with it. But if I could pick and choose. Then either a new working body. Or failing that a flying wheelchair.

Oh well, A long time ago, in a galaxy far, far away… they had some crazy ideas about disability.

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The Unexpected Emergency – New version

I didn’t plan on giving Mary a big shock that morning, in fact really it was 111 that should bear the brunt of the blame.

The day started fairly normally, for me. It was 2006, it was the last time we were living in Hartlepool and this was before I had the downturn in 2007 that led to me needing a wheelchair full time. I had a routine blood test at the GP surgery. Except it wasn’t as routine as I hoped. Anyone who has had a blood test will know that the comment, “you’ll feel a slight scratch.” is absurdly optimistic. Most times, not only do you feel a very sharp scratch, but it also aches while they take several tubes of blood. That day I felt absolutely nothing, not the tiniest bit of pain. Not the needle going in, not the ache while it was in, not even the nurses hand on my arm. It’s been said before, I am very fast to react to such things and take action. So obviously I totally ignored it, didn’t mention it to the nurse and went home. I did think about it at the time. My thoughts went like this, “that was odd.” At home I thought again, “that was very odd.” So you can see, I was very on the ball.

Actually “that was odd.” Is a favourite expression of mine. I said it several times when our neighbours house was being burgled. I heard the break in, and I said to Mary, “you don’t see that every night”, as I watched the thieves walking down the road with a TV. My brain churns slowly sometimes.

My brain was working just as fast after I couldn’t feel my arm. At home, I rolled my sleeve up at home and touched my arm, it felt like it had been anaesthetised. Finding a pin I tried sticking it in various parts of my arm but it was numb.

Before you think I am a complete idiot I did wonder about a stroke. So I lifted both arms, which I could do, same strength. I could feel both legs. I looked in the mirror and smiled. My straight and goofy face smiled back. Obviously something was wrong, but it wasn’t likely to be a stroke. Mary was in the kitchen cooking lunch and over the years I had caused her enough panic with my illness. So I decided I would check it out with 111 rather than bother Mary about it. I think 111 was a different number at the time.

Our phone was in the hallway opposite the front door and by the stairs. I sat on the stairs. Mary was through the other side of the front room in the kitchen unable to hear anything as there were two closed doors between us. I explained to the 111 operator that I had a numb arm but I was sure it was not a stroke. She told me to hang on a second, then continued to ask questions. Before she had finished asking her questions there was a knock at the door. I opened it to find two paramedics standing there. We lived just half a mile from the hospital, hence the speedy arrival. I hadn’t even known the operator was requesting paramedics, so I was just a little surprised.

Explaining their arrival the lady on the phone said she had requested them immediately and let me go. I was taken into the front room and wired up to a heart monitor and had an oximeter put on my finger. Mary was still cooking in the kitchen with the door closed oblivious to all this. I was fully checked over, heart, oxygen, blood test. As always with any ambulance visit they offered to take me to the hospital for a full check up, but they could see what I had already said, it was not a stroke. I later found out it was one of the early signs of neurological damage I now know that I have.

It was while the two paramedics were standing over me with all their equipment connected that Mary walked through to say lunch was ready. She took finding two paramedics in high vis jackets, standing over her husband who was wired up to a heart monitor, extremely well. If she was shocked and horrified she hid it very well. Her jaw only momentarily hit the floor and her eyes were only a little wide. I’m also not sure it was a gasp she gave, it could have been a sound from the kitchen. The pressure cooker could have been on.

As I began it certainly wasn’t my plan to shock Mary and as you can now fully see it was really all the fault of the 111 operator anyway.

 

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One size doesn’t fit all

I am totally behind more accessible housing and support any move that will increase accessible housing stock in this country. But one size does not fit all. I was a finalist in the Habinteg Essay Writing Competition 2020 and my essay explained that what is needed, as we look into the next 50 years of accessible housing, is variety. I argued for communities that cater for varying needs.

A point has been made that 1 new accessible home is planned for every 15 people over 65 by 2030 and that this is not enough. I would say this, surely the point is not about people over 65 but disabled people. Not everyone over 65 has mobility issues. Shouldn’t the real question be ‘how many people are there now in need of accessible houses and how many will there be by 2030?’ Then a further question is ‘what type of accessible housing is needed?’

One size doesn’t fit all. When I wrote this blog, we were staying at what was once an RNIB training centre and is now a hotel. So, the corridors are laid out to help blind and partially sighted people. This means there are white, raised strips at regular intervals along the corridor and on corners, the bottoms of stairs and by doorways. Obviously, these are really needed and helpful for blind and visually impaired people. The same is true for raised bumps on pathways by crossings generally that you will all have seen. But these kinds of bumps are very uncomfortable in a wheelchair. I would not suggest that they are removed as they are needed for other disabilities. But what benefits or is needed for one disability can be a limitation to another. I am sure that there are disability aids which are a problem to able bodied people too. I am merely pointing out that ‘one size doesn’t fit all.’

My point is this: we cannot say that we need more ‘accessible’ housing, nor that there are more disabled people needing accessible housing. What we can and must say is that there are a variety of needs in our society, among those needs is a pressing need for ‘accessible’ types of housing. Many types to meet many needs. Wheelchair accessible, accessible for blind and partially sighted, accessible for limited mobility, deaf, and various other needs. One size does not fit all. A ramp and a wet room are only really needed for mobility issues. Visual doorbells for hearing problems. Having raised floor markers would be a great boon in a house for visually impaired but a big problem to the comfort of a wheelchair user. That’s before you even look at the heights of units needed if you are in a wheelchair to those not in one. One size does not fit all. The problem is that often these issues are championed and put forward by people without a lived experience of disability. The designers often lack that lived experience, even if they have a second-hand knowledge from a family member or loved one.

The point I argued in my essay was that communities were the way forward. Communities of varying types of housing. When a new housing development is planned it should include all types of housing. Housing to suit families, single, couples, older generation, disabilities of various types including wheelchair users, people of all social backgrounds. If you mix people together rather than ghettoizing by need or age, then you create a supportive environment where people naturally form social networks. We have lost that sense of community and yet the recent pandemic demonstrates that we miss it and naturally want to re-create it.

In 2021 we moved to a new build house on an estate in Hartlepool. Our house was already accessible. It was M4 (wheelchair visitable). After a DFG grant and various other adaptations, it is now fully accessible for my power wheelchair. The community we live in is amazing. It has its own Facebook page. We have found people here to be the most friendly and helpful neighbours you can imagine. In Storm Arwen people turned up to help us. When we had Covid, neighbours have offered and done our shopping. People on the estate have helped us in more ways than I can count. It is a community, not just a group of houses. I feel as if we have moved to a living embodiment of the kind of place I wrote about in my essay. A group of people of all ages and backgrounds who care about and support each other. Ever day I read on the Facebook page about examples of that care and support in action between people on the estate.

Such communities as the one we now live in, don’t replace professional care services. They add to them. Because much of the care provided by professional agencies today is what was once done by friends and neighbours. I am not referring to washing and dressing people. That is a care agency or personal care role. But a world where you need to pay someone to visit you, or go shopping with or for you, seems very messed up. We have a massive care bill; I wonder how much of that bill is for services that most of us would have once seen as being neighbourly and friendly?

Community is at the very heart of care. I started by saying that one size does not fit all. Accessible housing and care needs vary by need. Many things we need are normal human interaction. Other things are more specialist. Each person’s needs are different. Because we are all different.

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Never Mind The Quality Feel The Length

A repeat of a post I did a while back:

Is quality a thing of the past? That seems a stupid question, after all everywhere you look things are advertised as luxury, professional or pro for short. Advertising tells us that things are built better, stronger, more durable… yeah right, we all believe that don’t we? In fact we have become the quality control department for most products. Instead of manufacturers checking them, they are sent as is and fail in our home. We then send them back or bin them. Built in obsolescence. Never mind the lack of quality feel the short product life.


I have an NHS power wheelchair it’s a Quickie Salsa M2 and I am really grateful to have such an amazing tilt and tip wheelchair supplied. It’s transforms my life. But I cannot ignore that it seems to be very poorly made. I have had it for three years and well within the first year the frame started to move alarmingly, what I mean by that is it’s become loose and rickety. Add to that the paint peeled so badly that rust was the main colour visible on the frame.

I wonder if the NHS commissioners request poorly built? Obviously not, and when you consider that this chair is available privately and cost about £7000  for the setup I have, I do wonder at the excuse Quickie would have for what appears to be poor quality manufacture. I know the NHS get them for more nearer £4000 so do you think Quickie USA have two production lines? One that only applies one coat of poor quality paint and uses low quality parts that go to the NHS and a better line for private? I am of course joking, well half joking, they will make only one version. I can’t see how the NHS who are paying companies like Quickie a lot of money, can get such seemingly poor products from them. What is happening with the people who select these companies? Do they check on quality? Don’t tell me they are NHS products and I should just be grateful for any old tat. I told you these same chairs are available privately. They are merely bought by the NHS.


Don’t give me the argument about it being better if a private company is involved either, because I got my wheelchair through a private Company used by the NHS, Milbrook. So if private companies are really the way forward to drive up quality through competition and quality control I would be saying how wonderfully built my chair was. No, in reality all that privatisation does is add a profit layer into the mix. So that someone has to make profit out of the transaction. Ergo the end product has to be of a lesser quality because the amount of money being spent is the same, the product needed is the same, but someone in the middle is making a profit. Corners are therefore cut.


In case your wondering. I have part of the answer. The NHS and/or the private companies they use send out part reconditioned chairs. You might think that makes good economic sense. Have you heard the term ‘Life Cycle Cost?’ LLC. It is where a company assesses the total cost of a product over its life, not just its up front, capital cost. You include servicing and spares. Servicing includes the engineers and service admin. Spares are much more expensive than original parts. Even if you clean up and recycle a part that costs money. So LLC is high where a poor quality product is chosen. If you buy a good quality product, its capital cost can be higher, but its LLC lower. The NHS is short sighted. It only looks at capital spending. Why? Because LLC is spread out and seems better. In reality its not. More money is spent over a longer time.


Cars used to rust almost as soon as they left the showroom. Now cars are sold which boast of 7 and 10 year rust free warranties. Car parts used to fail within months, now they last much longer. The car manufacturers want people to keep buying new cars, but they do that by making new cars attractive and second hand cars hold value for re sale. Wheelchair manufacturer’s seem to have a very short term vision, sell their chairs to the NHS or desperate people who need them. Longevity of the chairs do not seem a factor, that is how it appears to me. Prove me wrong manufactures, show me how well you build your chairs.


That will not change until wheelchair users make a hue and cry and the NHS start to complain that they are not happy with the high failure rates. CCG’s (clinical commissioning groups) do you even track the failure rates of wheelchairs?


My fellow wheelies (wheelchair users for those who don’t know) take note of this. If you are an employee of the NHS and have any say in this process take note of this. If you are reading this in another country and have similar issues, take note. It takes a massive backlash to companies before they sit up and take notice.


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Life Is But A Dream

There are mornings that I wake up from a lovely dream. One in which I am walking, running, pain free. As I wake and turn on a light (by voice), the pain hits me first, normally through my eyes. Did you know, it’s not just love that hurts, light hurts too? My head joins the party next and I have not been at a party drinking the night before. So no excuse and nothing to blame. If my body is in an uncooperative mood (it normally is) it stays still for quite a while. When it does deign to move, it makes it’s presence felt. I guess it doesn’t want me to miss out on congratulating it for the effort of moving.

Once I have turned over. That is a big task in itself. Reached for the bed control and sat the bed up a bit. I skipped removing the CPAP. That’s the bit of equipment that keeps me breathing at night. Anyone with sleep apnoea will know about that. I then look around. No point looking at my tablet computer yet. My eyes can’t focus first thing. Just as well I have a good imagination, I just think.

It’s at times like this; every morning. That I have often contemplated the words of that song. ‘Row, row, row your boat.’ Actually, it’s not that bit I contemplate, that would be silly. I think about the words, ‘life is but a dream.’

As a Christian, I know life isn’t a dream. The Matrix is a great movie, but it’s just fiction. Life is reality, dreams are dreams. But as I transition from the sleeping/dream world into a rather painful and limited reality, I do muse. I muse about how nice it would be if this real world were the dream. If the dream world, of walking, running and being pain free were real.

I did not write this as a ‘feel sorry for me’ piece. Nor is it meant to be maudlin. But, if I never write the truth about being disabled and ill. You will think it is all laughs. I smile and laugh because I make that choice. Every morning as I lie in pain, I make that choice. Often I say to myself, ‘come on Michael, pull yourself together.’ I call myself by my full name when I want to chivvy myself along.

I don’t look down on those who can’t do that. Others suffer far more than I. We can never know what another person is going through. Don’t judge someone because they are angry with being ill, disabled or limited. I can’t know the pain of another; neither can you. I can’t understand what you are going through; it could be far worse than me.

If there is one take away message I would want to give, it’s this. I know that we all have struggles in life. Whether we are ill/disabled or not. Life can be hard for us all. Especially at the moment with all the financial burdens and stress.

Be kind to one another. Be gentle and caring. We all need the grace and strength to get through each day. Let’s help each other through it.

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Disability Top Trumps

Did you ever play that game as a child, ‘Top Trumps?’ It came in loads of forms, cars, boats etc. You would deal out cards that listed the specs of whichever list of things you were comparing and play. Let’s say you were playing with cars.

I would have a car with a 2 litre engine, 5 doors and a top speed of 95mph. So I would then decide to choose the engine size and say, 2 litre engine. My fellow players (I was a child, so it would be my brothers) then have to look at their hand of cards and see if they have a car with an engine bigger than that. It always seemed as if one of my brothers could trump me. They would have a V12 engine that had 3.6 litre engine.

You get the idea? Bigger is better. The person going first choses a particular thing, then other people can see if they can trump it.

I never knew until the other day that some people play that with disability. We were chatting to the wife of a disabled man who we had not met. She was checking an access door. We told her that it worked great for getting in to where she wanted to go.

Out of the blue. Instead of just saying thanks, or I knew that. She said, ‘my husband can’t walk or stand. He only has one leg.’ She looked rather accusingly at my two legs. I did wonder if I should hide one. Or just explain that I couldn’t walk or stand either. That was why I was in a wheelchair. But it seemed best to just carry on talking.

Somehow the topic got around to wheelchairs. She told us that her and her husband had every type of wheelchair going. A power chair, a motor scooter. I began to wish that I had brought my V12, 3.6 litre wheelchair out that day, the one with chrome exhausts. She was definitely trumping me. Not that I had realised the game even existed or that I was playing it.

Before our encounter with this lady, I always assumed that everyone had a different limitation, illness or disability. We all make the best of it. She seemed to be bringing a new ‘trump’ element into being disabled or ill. I should say here, that here husband was not with her. So he was not part of her ‘odd approach.’

A bit later we did see him with her; or rather behind her. He was trying to catch her up, pushing his self propelled wheelchair for all he was worth. She never mentioned they had one of those.

There is a moral to this blog. I think the lady in question was probably struggling with being a carer for a man in such need. When we saw him, he did look in need. He was not finding it easy to wheel himself. You might say, ‘why wasn’t she pushing him?’ Perhaps she was coming to the end of her tether. Her, rather unfortunate, way of coping. Was to leave him to struggle and create a make believe world of how great everything was. It struck me that she desperately needs help.

I do know this, a lot of carers, desperately need help. They have a massive weight on their shoulders. We are living in a time when there is a crisis in the support available. A shortage in funding and a shortage in people, linked to the first. The result will be seen in the near future as carers become those needing care. This is not a problem that can be ignored.

I wrote this blog in a deliberately satirical and humorous way to catch your attention. But the message is serious. Carers are struggling, they need help. Only political change can make that happen.

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Enabled by your Environment

What a positive world we live in. Apparently I am not disabled, I am differently abled. I guess being negative is seen as… well… negative. One day, Bam! I was hit in the face. Not literally you understand. I have not been attacked by people who disagree with my blogs. Although that might well start after this. Then, Wham! Not the 80’s pop duo. You see I had an epiphany and it’s not even Christmas.

My wham, bam, epiphany came last year actually. Don’t accuse me of rushing of a blog every time I have an idea. It was when we moved to our new house last summer. I would say our beach view house, but I don’t want to make you jealous. Too late, I said it. I realised, We can be, enabled by our environment. Let me explain:

We moved in to this new build house. Now I need to pause a moment. This house is M4, no it’s not in the middle of a motorway. The M4 category of housing is an accessible housing category. It means that a house is built to be wheelchair visitable. That means exactly what it sounds like. You are meant to be able to visit it in a wheelchair. The government have a strategy to make all new houses M4… eventually.

An aside here, I cannot visit the majority of my family and friends. I can think of one house that might (I haven’t yet tried) be accessible to me; in part. You might be unmoved by that. But imagine being unable to visit your family and friends. Got that in your mind? Would you find that hard? I know I do.

Having moved into this house with its wide doorways and corridors I noticed something. I could access the whole downstairs. Wow! You’re thinking, access all of downstairs. What’s novel about that. Sometimes I think everyone should spend a year in a wheelchair. The world would change pretty quickly. I imagine blind people may wish everyone could experience blindness for a year. Or deaf people may wish people may wish people could experience profound deafness for a year. I say a year, because a few hours don’t give you any idea of a disability. Many carers have sat in a wheelchair to see what it feels like. People have put on blindfolds or blocked of their ears. But such very short term trials, give no idea as to the long term implications of a disability. I have only mentioned three obvious disabilities. I am not suggesting that other disabilities are lesser.

Back to my sudden realisation. We can be, enabled by our environment. In a wheelchair, even a 1” bump is significant. When you walk you just step over every bump and step, without even seeing it. I have lost count of the places I have phoned to ask about accessibility, to be told they are wheelchair accessible. On arrival, they have steps, steep slopes, gravel or narrow doorways.

We can be, enabled by our environment. When we moved to this house I wheeled around freely for the first time ever. Then after the Disabled Facilities Grant, added a through floor lift, I wheeled around upstairs. I can now access every part of this house. It has been years since I could say that about a house.

But access alone is not the point. Access is only a means to an end. Access is reaching a place or thing. Getting somewhere.  There are still ‘things’ I cannot reach. High cupboard, light fittings, high shelves.

The realisation that I came to was that being able to reach things, get to places, approach a location, enter a room, changes my outlook and gives me opportunities. I did not gain health or strength when we moved here. But, with the same limited strength I already had, I could do more. I gained opportunities. I was enabled by my environment. Rather than make this a very long blog, I will talk of the details of that another blog.

I have deliberately talked of being enabled by my environment. It is the positive side of the better known expression, ‘disabled by your environment.’ We can be, enabled by our environment. All it takes is the political will for housing and buildings to be made more suitable. It is life transforming.

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Smiling Under Pressure

A Tribute to The Women & Men of the NHS

In January I was taken by ambulance to A&E at North Tees. This is my tribute to every woman and man I dealt with that day; it was a long day.

I had to call 999. But this isn’t about the reason for my 999 call, (I am back home and much better).

This blog is about the response and the people my wife and I met.

From the moment we pressed my emergency call button and the operator dialled 999, the whole amazing UK system kicked into action. We are far too quick to criticise and too slow to compliment. Mary and I have reason to highlight problems, but I would rather focus on what was great yesterday and with the NHS generally.

The lady who called us from the 999 operator was quick to assess the situation and send a paramedic, who arrived fast. He was a lovely man, unruffled, calm, and professional. His easy calming nature took the stress Mary and I felt down a notch.

The ambulance crew who were to take me to North Tees were just as lovely. Two ladies with a sunny disposition and helpful attitude. I have a repeated loss of muscle function, which is a rare condition. This means that I have often been left in difficult and painful positions. I must have Mary or a carer who knows about me, with me. In these Covid times, hospitals do not allow you to be accompanied unless essential. The ambulance crew assessed the need and agreed to help Mary demonstrate that need at the hospital, which they did, and Mary was allowed to stay.

On route in the ambulance, I lost muscle function, and the ambulance crew member in the back prevented my head rolling around the whole way. Even though it meant she had to travel sitting in an awkward position, she put me first. I find such things really move me, as being totally helpless in one of these ‘attacks’ I feel vulnerable and easily hurt. Mary was able to guide her from the seat next to me as to how to support my head.

At the hospital we had the most wonderful doctor, whose name meant peace, and who was a source of peace and help to us. The nurses managed to smile, laugh and be helpful, even though they were rushed off their feet. The A&E was so full they had to double up some areas. But we never felt a burden.

I do not know how they kept their sunny, bright smiling outlook during difficulties, stress, and problems. Being there for nine hours we got to hear and see a lot of changes and two different lots of staff. My admiration just grew. Our NHS is one of the most incredible, and I think often unappreciated things we have. The staff are battling on day after day, for massively long shifts. One we chatted to works 7-7. That is not a simple job, but a full on difficult, mentally, and physically taxing job.

The NHS staff are often the ones who suffer abuse from people who must wait. But it is not their fault that the NHS is underfunded. They do not choose how many staff to put on, nor the positions hospitals are built in. Nor which ones to close. It is not up to them how many ambulances there are, nor the way things are run. Yet day after day they smile and laugh and carry on. Surrounded by the dangers of Covid, the sadness of death, the anger of people let down by things outside their control. They carry on and do the most amazing thing. They are there for us. Not just at times of emergency, but in long term illness, for those illnesses that people don’t even want to talk about. They are there.

I want to say a thank you to North Tees Hospital A&E. To the local Ambulance Service and to the NHS. Thank You. You are awesome. You are appreciated. I don’t say it often enough, but I do say it often. The NHS is a brilliant organisation, staffed by wonderful people.

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Going Up In The World

“It needs to be 120cm from the mattress,” a pause, “oh, it’s not.” Listening to the OT saying this under to the bed technicians, while checking the health and safety requirements, I held my breath. Surely, after all these months, I wasn’t about to fall at the last hurdle. The bed technicians who had moved the bed upstairs had a discussion with her about some adjustments. The changes were made. More measuring. I should just mention here that they were checking and changing my bed sides, cot sides as they are commonly called. They are there so that I don’t fall out of bed when I lose muscle function without much warning. They were added after I first fell out of bed due to a loss of muscle function. Part of my condition.

Back to the OT and bed technicians who are standing, hands on hips, tapping their feet, waiting for me to finish the explanation to you all. “OK guys, you carry on.” After all their adjustments the OT had re-measured and pronounced that the bed was safe. Phew! I would not be rolling out of bed, or getting caught under the bars. This last, a less likely scenario as the cot sides are covered in a mesh and foam. But, I could give it a go if they wanted.

Now I have made an assumption. Which I am told is a very bad thing to do. Such a pity that doesn’t stop most people doing it; most of the time. My assumption was that you have been following my life story, hanging on my every trial and tribulation. Basically treating me like the celebrity that I obviously should be; an oversight that will be corrected soon, I am sure.

For those who have not been hanging on my every adventure; I will want to know why. Here is a explanation of why I was awaiting the OT’s safety proclamation on my bed. It had been moved. Is that enough or do you need more? OK, so just a bit more context. We moved into a new house in June and it has been in the process of being adapted by a DFG grant for most of the time since then. Not solidly, there have been gaps. Plus we have had work done ourselves; like making the garden accessible. The DFG grant has put in a through floor lift from what was the garage into my bedroom above and added a wet room en-suite. The bedroom is not large and so a lot of the things I had in my previous bedroom will be in the converted garage below. Apart from the flooring on the converted garage a few adjoining rooms, which we held off getting done till the messy work was completed; all is now finished. Yesterday my hospital type bed was moved to my bedroom which had an H type ceiling track hoist fitted the day before. All caught up?

Only hours before the bed was moved up, I had no curtain or blind in my bedroom and I was thinking that I would get to know the neighbours a lot better. Or rather, they would get to know me. Fortunately, our neighbour fitted a blind for us in the morning and saved my embarrassment and decency. He also saved the eyes of everyone in our close.

Here I was waiting to use my new bedroom, new bed, new hoist. I had already used the new wet room. Having gone up in the lift in my shower chair; covered in a thick layer of towels. Waiting with baited breath; I’ve always wondered about that expression. Sounds more like a fishing term than being paused on the edge of excitement. Mind you, the few times I have been fishing I just ‘held’ onto the bait, not sure how to attach it to the hook. So maybe that’s were it comes from. All of which is irrelevant, stop distracting me. Now you are holding your breath, waiting for me to continue. More likely you have swiped onto the next feed.

If you are still with me. You now understand why the OT’s hesitancy over a couple of centimetres was so important. Actually, this particular OT was filling in for my usual OT who is on holiday. So I had not seen her before. Perhaps because she was covering for someone, meant she was extra careful. It occurred to me, that I was glad she did not get me to test out my new ceiling hoist. The way she measured everything on the bed, I had visions of what it could be like with my sling and hoist:

Imaginary scenario:

OT: “Patients bottom is 40 degrees from the perpendicular.”

Me: “Will this take long?”

OT: “Not many more measurements.”

Me: “That’s good, I’m getting uncomfortable.”

OT: “Ah, where is it pressing in and hurting?”

Me: “Well… you know… where slings tend to on men.”

OT: “Possible excess pressure in groin area, needs investigation.”

Me: “So is that it?”

OT: “Nearly.”

Me: “Great. Oh, that’s cold.”

OT: “Bottom hanging 12cm below sling.”

Me: “Now are you. Hey! wait a minute.”

OT: “Discovered reason for excessive groin pressure. Now fixed.”

Of course I jest, OT’s do not do the above. Anyway, at least my bed passed muster and I finally went up in the world. A feat I had waited many years to achieve. In fact I am sitting in my bed in my new bedroom writing this.

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Crash, Bang, Wallop

I’m sure you’ve all seen ‘Half a sixpence’ and if you haven’t, will now be rushing off to look it up. “Crash, bang, wallop, what a picture, what a photograph,” is a line from one of the songs in it. Which has absolutely nothing to do with building work. Although, they do have a house built; well beginning to be built.

What am I talking about? I have spent the last two weeks in a room below and beside a lot of building noise. Crashing and banging and walloping. Builders seem to find it easier to drop their tools than put them down. To throw things rather than place things. They are hard of hearing and need radios blaring. For some reason van engines often need to be left running. They trip over all the stuff they leave lying around and then off course they have the actual building work. Drilling, sawing, banging, angle grinders and general building noise.

We have been having DFG (Disabled Facilities Grant) adaptations done on our house to make it more accessible and generally much better for me. The garage has become a room, mainly to house the through floor lift which will go into the bedroom above; my bedroom. But as a result of being adapted it gives me a room to put my excess stuff into. My bedroom is already one of the smaller ones. By the time you have to leave room for the lift, a hospital bed, two doors (entrance and wet-room), wheelchair, wheeled shower chair, small wardrobe, and bedside table there isn’t room to swing a cat or for the rest of my stuff; if cat swinging isn’t allowed. Where will my collection of teddy bears go? What about my collection of antique sports cars? Then their all my suits of armour and my extensive collection of old phone boxes. I am of course kidding, but I do have more things than just clothes. So those things will be in the room below, it’s on the sunny side of the house; should be a nice place to sit as well, when you visit for coffee. You’ve not had an invite? It’s in the post.

I have already hinted at the other part of the building work; directly above my head. I am currently sleeping in the lounge. That’s a very appropriate name for our front room/sitting room, because I lunge around in my hospital bed. Anyway, something was happening directly above my head; what was it? The ceiling hoist? No, that just sits there until used. Ah yes, the wet-room conversion. They have taken a small en suite from the larger bedroom, swapped its entrance into my bedroom. Then extended it into the larger bedroom, which is now smaller. Are you still with me? I wish I was; I’ve only seen photos so it’s hard to really grasp what it looks like yet. The result is that I will have a large enough wet room for two carers and me; sounds like there ought to be a song there. Apparently due to my condition, care companies in this area will only give me a shower with two carers. No, not because I am so large, that’s just rude of you. It’s because I can suddenly go like a rag doll and even though I have a reclining shower chair with seat belts, its best to be safe. Shower time is therefore going to be crowded. Don’t worry, I know we don’t all have a shower. Not unless I happen to splash them, accidentally; which I would never do. Having said that most of the time it will be Mary giving me a shower, we haven’t got a rule about two carers, Mary knows the signs well enough to see ‘rag doll’ time coming on.

Back to these really quiet builders crashing about above my head. I appreciate what they are doing and I am looking forward to getting upstairs to my bedroom. I’m especially looking forward to the sea views from our balcony room upstairs. I just wish that they had learnt to be a bit more careful with their tools. Is it really necessary to throw a hammer on the floor after use? When I was on my feet and doing houses up, I had a tool belt and a work bench. My tool box was on the work bench and I put, not threw, tools back in that. Tools I was using all the time went on my tool belt. As for tripping over everything, that is just bad practice. The HSE would not be happy; mind you they often look unhappy. An HSE (Health & Safety Executive) Inspector doesn’t smile a lot, but then I guess they have little to smile about. If they came to see what our builders are doing, they might giggle on the inside, but they would have to be stern on the outside. A clean work area is a safe work area, no I have never been an HSE inspector.

Oh, the joy, the deep, deep joy, when 3.30pm comes and the working day ends. Yes, you read the time right; 9am to 3.30pm. I was in the wrong job when I used to work in an office. Anyway, the deep joy at the end of a long working day when the crashing, banging, walloping and general noise ends. The end is now in sight. Friday we are told, most of the work will be finished. Then all we have to wait for is the glass for the windows. Apparently, Brexit, Covid and Suez all worked together to hold that up, very co-ordinated of them all. Then we have to wait on the through floor lift; that was on an 8–12-week delivery from 24th June. The same three well co-ordinated suspects may be holding that up too though.

Crash, bang, wallop, what a picture the finished project will be. Well, it will be once we can get it decorated. The builders leave it with bare plaster walls; apart from the part tiled we-room of course. But once it is all done, it will be amazing.

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I Married A Good’Un

I have had many times to consider that I married a good’un. What a lucky guy I am. I remember all those years ago; obviously not that many years, because I’m only young. Back in the early 1980’s, when I first met Mary. There was this thunderbolt; no that was just in my mind. I never wanted to be apart from her again.

Well, today, a landscape gardener was round looking at putting in a base for the shed and a path for my wheelchair. He looked at what Mary had already done and he was gobsmacked. In fact, he was saying she works harder than most of his staff. He texted me later, this time tongue in cheek, saying can he offer her a job. Looking after me is Mary’s full-time job.

Earlier in the week the builders carrying out the adaptations on our house, to make it suitable for me, made a similar observation. They couldn’t believe all the physical work Mary had already done in the garden.

The point is, that she is amazing at transforming a garden. Laying out a lawn, cutting borders and planning, are things Mary has done in each of our houses. Some, I have been able to contribute to; not this one. So, I watch in wonder at the things she does. All this on top of being my main carer and doing the standard things of cooking and cleaning; none of which I can help with. I most certainly married a good’un.

In case you think my judgement of what makes a wife good or bad is based on physical strength, or cooking and cleaning; let me clarify. Mary is brilliant because she is kind, generous, loving, a woman of God, a great wife and mother. Mary is gentle, understanding, long suffering; that goes without saying having me as a husband. Mary is clever, inventive and strong, both in spirit and mind. Mary knows how to overcome difficulty and she is the one who comes up with all my best ideas. She is my strength and my right hand. I have most certainly married a good’un.

There are many unpaid carers out there and my hat goes off to you all. I also realise that for many of you, the person you care for is unable or unwilling to recognise your help. Sometimes that’s the illness affecting their mind. For some it’s the frustration of wanting to do it themselves, blinding them to gratitude. For others it is just ignorance; they have never thought about it. Their character gets in the way. So, I want to say to all of you who care do unpaid for others: Thank you, you are doing an amazing job. Without the great army of friends and family who sacrifice their lives to care for others, we would not have a life. (I have separately blogged about paid carers.)

I can and do say that to Mary. If you are someone who receives care from a family or friend; stop and think. I realise that you want to do things yourself; of course, you do. But, recognise that the person helping you is giving up a lot to do that. Say thank you, realise that they are putting their life on hold, to help you.

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The New Hoisting Diet

I have discovered an amazing new diet. But, let’s not rush into my world changing revelation. Let me not spoil the moment. I don’t want to jump the gun and get you all placing orders for my miracle diet before I have even told you about it’s wonders.

But where do I even begin? Well, I was a poor lad, born long ago without a penny to my name… too far back? OK, let’s jump on a bit. The winter was harsh and cold, help just wasn’t in sight… still too long ago? You are a hard bunch to please. Straight to the point it is then. Speaking of which… alright, straight to the point.

Have you ever noticed ‘middle aged spread?’ It’s not a type of margarine. It’s when your middle decides that it wants to spread beyond your waste band. I consider that to be a betrayal of trust. After all, you have nurtured that belly all your life. Kept it hidden and tucked up cosy in a belt. You looked after it, never let it down or said anything bad about it. Then one day, without any notice, it just decides to burst out of your trousers and make an embarrassing show of itself to all and sundry. I wouldn’t mind, but it’s so undignified. It doesn’t even respect the outfit you’re wearing, trousers, shorts, PJ’s, skirt (not me of course), kilt (not me either, slacks (if you’re one of my American readers) or joggers. Whatever you are wearing it overspills them like a waterfall of flubber.

This ‘middle aged spread,’ flab to you and I, after all we can speak straight, can’t we? We can be honest with one another? This fat! Well, it just hangs there, wobbling and generally being silly. Not behaving itself at all.
Today an OT (Occupational Therapist) visited. You didn’t know they did diets; well, they don’t. She was here to bring me a new sling for use with my ceiling hoist. A toileting sling; I will leave it to you to decide what that is for. Mind after I had tried it on, she said, “do you want to use the commode?” That’s a mobile toilet by the way. I said, “not with an audience.” Actually, I only thought that, I was just embarrassed, after all there were three people present. I’m not in the habit of using a toilet in public, even a public convenience. Being disabled is embarrassing, but there are limits.

Back to the sling, it has a Velcro strap around the middle, it goes around your ‘middle aged spread.’ The OT had brought two sizes, medium; I know, I laughed too, and large. Hang on, why did you laugh at medium? Well, the large was tight. But the OT said, “don’t worry, they are always tight, until you are hoisted.” We are coming in fast on the point of my blog now. Get your credit card ready to buy this almost unbelievable diet.

As I was hoisted into the air a miracle occurred. My ‘middle aged spread’ disappeared! Will wonders never cease? Something about being hoisted, gravity, physics, bottoms hanging out of slings; even covered bottoms. Whatever the logic, your belly becomes slim. It’s a wonder diet; instant and reliable. We won’t mention it reappearing on being lowered; let’s gloss over that. There are slight down sides to everything.

So, if you are suffering from ‘middle aged spread’ all you need is a sling and a hoist; hey presto, a slim tummy. Simple, eh? They should package it up as ‘The New Hoisting Diet’. Then in small print, “Only effective while in the hoist.” Aren’t you glad that you stuck it out till the end?

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Getting To Know You

‘Getting to know you…’ Any fans of ‘The King and I’ will be in full voice by now. I of course have not reached, ‘…your cup of tea.’ There is a purpose behind the lyrics of course; Anna was introducing herself… no I mean in this blog. Mary and I have recently moved to Hartlepool; how did you miss that one? Go and sit in the corner. Which means, everything is new. Well, not quite everything. But I have to get used to a new house, new area, new equipment, new doctor, new OT and new carers. I am getting to know them.

Fortunately, I already understand the local dialect. Which reminds me, when we last lived here many years ago, I didn’t understand it. One of our sons went to a new school here and after school, went home with a friend. He rang me to say that he would need collecting later from the friends house. So, I needed an address and directions. You’re a clever lot, so you already know what’s coming. The friends mum took the phone and gave me the address. Well, I couldn’t find it on the map, not the way she said it. I am not going to give their address out here, but there are some ways things are said up here, that take getting used to and her accent confused me. The road name did not sound the way it looked to me on a map, when she spelt it out. A couple of examples of local dialect that I have come to love are: moower (elongate the first part), is a moor, and twoast (say it as one word quickly) is toast. But I am assured by many locals, that they don’t have an accent in Hartlepool. Anyway, our lass was seeying, away with ya hinny, they don’t talk like that, flower.

You do realise I am going to be in trouble now. I probably will upset all my carers. Actually, they are a lovely group and have a wonderful sense of humour. Just as well really; with me as a client.

I was thinking the other day. A very good habit pooh bear. Imagine, walking in to meet me for the first time. After getting over the shear joy of meeting me and the wonderment at my muscular physique and taut svelte body. They then have to deal with my humility. How do they keep from fainting? I’ve known me for years and I can’t stand in my presence; no, wait, I just can’t stand.

Being serious for a moment… that’s long enough. Let’s have another try. It’s always difficult getting to know new people. Both for me and them. Carers are a whole other case. I won’t go into all the reasons now, but if you read my blog “Care, a unique relationship.” You will understand more about why. In brief a care to client relationship is both professional and personal, distant and yet somehow close. It’s hard to quantify, because when someone gets to know you well over time, they can’t help but understand you well. Of course, what makes it unique is that understanding is one sided. In most relationships where you are known intimately, you know the other person just as intimately; not so with care. Carers are like friends and yet not friends, a strangely intimate, yet not intimate, professional, yet close relationship. I don’t know of any comparable relationship. It is not like your doctor or a nurse, not like family or friends.

Here we are again… I’ll resist ending that ‘happy as can be.’ Starting that process over again, getting to know a new set of carers. Eeee, I’ll be off now flower, our lass is bringing me a stottie.

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