Fewer than one in ten homes
are suitable for older or disabled people to visit,
let alone live in.
Fewer than one in ten homes
are suitable for older or disabled people to visit,
let alone live in.
No, I have not taken up a new hobby. Nor have I had a sudden healing. I didn’t leap out of my chair yesterday and grab a dumbbell. This is about a different kind of weight. Oh, you’ve all fallen asleep or stopped reading. Come back! It is worth reading.
Ever been flattened by life? You know that feeling when everything crushes down on you and life is too much? You may be feeling it now. If you are, don’t give up. Life is worth living.
I know that feeling. I understand it. Yet people see my smiling happy face and assume I don’t. I want to explain how I can smile in the midst of pain, frustration, and anguish. What keeps me going in the depth of despair.
Don’t worry, all you atheists can relax. I am not going to say God or Jesus. Oops, I just mentioned them both, and of course, they are my rock. But this blog is not about God and Jesus. There we go again.
Imagine the scene, I throw a fully loaded rucksack at you. Hang on, this is not a threat. It’s a thought experiment. You are imagining the idea. I throw a fully loaded rucksack at you. One so heavy it is at your maximum lifting capacity. You would buckle or collapse under the weight. Because at your maximum lifting capacity, you need to adjust and take the weight on board. Distribute it and brace yourself. Throwing it at you, gives you no chance to do that.
Now suppose I gave you the empty rucksack. You put it on and adjust it. Then I added things bit by bit. You keep adjusting the straps and getting used to it. I take it right up to maximum load. You will keep standing. The rucksack will be heavy, but you will manage it, if it is your maximum load.
The difference is gradually adding the weight. You have a chance to brace yourself and adapt to the increasing weight. Some people could probably go beyond their maximum weight. A slow addition of anything gives us a chance to get used to it.
Long term illness, pain and disability can be like that. It comes on over time. It is chronic (long term) and so the illness itself, the pain and disability increase over time. An aside here, there are still periods of sudden acute and increased pain in this picture. I am only talking general principles. Those bursts of intense pain would be akin to me dropping a very heavy weight in the rucksack part way through loading it. Your knees would buckle.
How do I and many others with long term illness cope? Because the limitations, pain and illness have come on over time. That does not mean it is easy. Take on board what I said about sudden bursts of pain. Also remember that someone with a long-term illness or disability must wake every morning and take that rucksack back up. It is not easy, just because we have adjusted to the weight. The background pain is still there. The illness has not gone. The disability stays.
Chronic pain and limitations have their own unique agony. They grind you down. Pain is exhausting, it makes you feel miserable. It is the thing I refuse to give in to. I will not act the way I feel. Why should everyone suffer, just because I am.
Perhaps the clearest way to express it would be like this. Very occasionally I wake up free of pain. It is so rare that I lie there for a moment waiting for the expected pain to return. Then having raised my bed. I look around and feel something that is almost indescribable. An inner joy that bubbles up and overwhelms me. There is a side of me that does not want to move in case the pain returns. Another side wants to dance (I can’t of course, as I can’t even walk) A massive smile breaks out on my face, and I enjoy the moment. I’ve not known this to last longer than a couple of hours. But it is a blessed relief.
To finish let me look at my rucksack analogy. This assumes you don’t already suffer long term illness/disability. If it were possible to instantly pass what I am experiencing to you. All the pain, limitations, and yuk. It would flatten you. You would have no opportunity to adapt. It would be like having that rucksack thrown at you. But when you experience these things yourself, they come on slowly. I am not saying that makes it easy. Far from it. Many days I struggle to keep going. I know that lots of people with long term illness struggle. My analogy is just to help you understand how I can smile and laugh in the face of adversity. Chronic illness and pain are really tough. Don’t assume that my smile means I am not suffering. I am just choosing not to be miserable.
I should make one quick finishing aside. Accidents are a whole other thing. I have had a life-threatening accident, so I know. Your body uses a mechanism to delay response to sudden accident. It is still a very traumatic event and causes great long-term distress. This blog is not looking at accidents.
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Something that comes up time and again is how to get help with long term illness/disability. I want to try and answer the following questions. What to do after:
In all these situations where do you turn for help?
We tend to think that the medical profession are the answer to medical questions. In theory, they should direct you to the right place. In my experience, that doesn’t always happen. This blog is not perfect, I cannot accept responsibility for your care needs. This is only a rough pointer. But I hope it may help direct you to help. It only applies to England and is only for over 18-year-olds (adults)
Who you gonna call?
In England and that is all I know about. You contact your local Adult Social Services. Look online or in the directory, it may be listed as: ‘Child and Adult Services.’ If so, look for the section dealing with adults. There will be a hub or central number of some sort. Get through to the main number and say something like this:
I would like a care assessment for (name of person needing care)
If someone is providing care long term (i.e. family member) then request it for them too.
Explain basic details of why the assessment is needed. This phone call is not where you give every detail.
What happens next?
They should send out, at the very least, a social worker. I know, we all think of social workers as the people sent out in socially deprived areas or to kids being abused. But, they also have a role supporting adults needing care. They are your first point of contact in this situation.
Let me just make a quick aside here: If you have a medical emergency phone 999. If you have a medical need contact your GP. This blog is only talking about ongoing care needs after a medical professional has dealt with your acute needs.
Depending on your level of need. You should also get other people sent out. I would think at the least an OT (occupational therapist) nothing to do with work. They look at moving and handling. It is the OT who looks at things like specialist equipment to help you manage around the home. In some areas that includes profiling beds. They will be the one to check your home is safe and suitable. So, if you are living somewhere that is no longer suitable. The OT is the person who can assess that for you. Unfortunately moving somewhere more suitable is not so easy.
If your needs are mainly medical, highly complex and variable. Then the social worker should look at a CHC (continuing healthcare) assessment. You can request this if you feel your needs are complex, variable and mainly medical. The local authority is really set-up to deal with less complex health care needs. You can always seek advice or request an advocate if you think that you are not getting the correct level of help.
Different areas have varying approaches in the way they deal with district nurses and physiotherapists in the community. So I cannot give you any hard and fast answers on that. Ultimately it will depend on your needs. But your start point will still be adult social care.
A note about Wheelchairs
A specialist team of OT’s and other health professionals deal with wheelchairs and that normally needs a GP referral. In most areas you would need to have virtually no mobility to get an NHS wheelchair. But if you are struggling to mobilise, ask your GP about it.
After your various assessments, a care package (if needed and agreed) will be arranged. How costs on this work, are a whole other area. I suggest googling that specifically. Or seeking advice on that. But in essence, if you have no savings and are on benefits, you won’t pay for care. There is a sliding scale after that.
Care provision in the UK at the moment is limited. Too many people needing care and too few carers. Hopefully that will improve. Some of that is due to Covid and some post-Brexit.
This is a message from a Producer at ITV News:
My name is Jonathan Wald, I work for ITV News and I’m looking for your help with a special report I am working on about how there is not enough accessible homes for people with disabilities.
I am looking to film and interview two people in the following 2 different kinds of situations related to insufficient accessible housing:-
1.) Someone who is in a home that is clearly, visibly inappropriate for the needs caused by their disability
2.) Someone else who is forced to remain in a hospital or nursing home because there isn’t any accessible housing available for them to move into
We would like to interview these two people in the above settings on Wednesday or Thursday next week.
The report would be broadcast on ITV’s national news the following week beginning Monday September 19th.
Please can you email me on firstname.lastname@example.org or call me on 07771947805 if you would like to take part and you think one of the above descriptions applies to me.
Many people think an inch is nothing for a wheelchair to traverse. This video may change your mind.
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.
‘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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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.
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
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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I have just posted some photos that go with my ‘Enabled by your environment.’ Blog
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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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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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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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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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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