Double Edged Sword

Double edged sword has always struck me as an odd expression. I am not a knight; King Charles take note. If I were, I guess sword fighting is no longer common. Mind you, at school I did do fencing. The amount of gardens I could enclose in an afternoon was outstanding… of course I don’t mean that kind of fencing. En Garde! Parry, lunge, riposte, feint, it was all second nature to me. After all, I did get my bronze certificate in fencing. They don’t give that out for nothing… oh they do. Swimming, fencing and English were the only subjects I enjoyed at school.

Where was I? A double edged sword. Care, what on earth has that got to do with fencing? My mind would make a fascinating study for someone doing psychology, so if you are studying…

Back to the subject at hand, Care, it is a ‘double edged sword.’ That’s what I was thinking. Then I thought, ‘aren’t all swords double edged?’ What do I know about swords and then I remembered I used to fence. You see, there is logic in there.

Right, care is a double edged sword. Are we all agreed? I haven’t even explained myself yet. How can you agree? OK, here we go, hang onto your seats. Buckle up, we are off on an adventure, or at least an idea or two.

When you need care and it is supplied. That is if you are able to find carers in these days of an underfunded and under paid care sector. When carers are as rare as hens teeth. But that’s another blog subject. When you do get carers you have a whole new… I was about to start singing ‘a whole new world,’ but I resisted, I bet you’re relieved. You have a whole new problem. I am not suggesting that the carers are a problem. Mind you, in the 9 years I have had care, they have not all been perfect. That’s me being kind. There have been a few issues. Let’s ignore that for now and look at the majority of carers who are brilliant. We will forget about the lady who turned up to do my care on a mobility buggy, then hobbled in with crutches! She stood there, both hands holding her up with crutches and asked, ‘what do you want me to do first?’ Answers on a postcard. Best to forget that. I obviously have no issue with disability, but we are slightly limited in the physical things we can do. So those of us severely limited ourselves, don’t make the best carers. Back to the subject at hand.

So, the good carers, walk in the door, unhindered. Having parked a car, not a mobility buggy, outside. Then it starts, or rather, it ends. You see, before you have care everything is different. If, like me, you have a partner, they may well be doing a lot, or all your care. That is really hard work for them. One of the main reasons for outside care, if you have complex needs, is to give your partner a break. As a couple, you get settled into a routine. You can get ready as and when you want. No one disrupts that routine. Whereas a carer has a set time to arrive and go. They come in, get you ready and leave. Things are worse if they arrive early or late.

The routine, or lack of it, that you have had, ends when care starts. Things change, which they probably need to. But that’s why it’s a double edged sword. Help and support is needed. Disruption to a routine is hard to adapt to. A new person in your house is difficult to get used to. Routines change and everything is turned on its head.

A new person in your home can feel like an invasion. Much as they are there to support and help, they are also unknown at first. Imagine a complete stranger coming into your house and starting to help you with intimate and personal things. Within a very short space of time they are doing things that most people would struggle to cope with. Who was the last person that wiped your bottom? Have you ever had anyone help you with washing and dressing?

OK, I have given you a glimpse at one side of the sword, the negative. Now the other, the positive. Having a good regular carer, that you get to know, is life changing. They can be so helpful, caring and supportive. In the past, down in Somerset, we had a group of carers who were brilliant. Now that we are in Hartlepool, we are setting things back up again. It can work really well with the right people.

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Happy Christmas

Some people dress up in the most ridiculous, over the top outfits at Christmas. You would think that it is a time of year for celebration and fun. They throw dress sense and everyday wear out of the window and put on all kinds of bright colours, decorated outfits, sparkles and party wear. What has become of the world? You would think that Christmas is some sort of once a year special day.

Just as well that you never catch me wearing such things.

Happy Christmas and all the best for the New Year

A wonderful mum

Anne Nevin 20/7/1940-18/11/2022

My mum died just over a week ago. If you note the date of my mum’s death, you may well think, ‘how come you wrote two comedy blogs since then?’ Humour is how I process sadness and loss. You will see that through all my blogs.

My mum has had Alzheimer’s for several years, a cruel disease. In many ways, I lost her a while back. Last time I was able to physically see her (not just on a video call) she did not even know who I was.

Her death came within a few days, caused by sepsis. Rushed into hospital too late to save her. She was living in a nursing home in Norfolk at the end of her life, near one of my brothers. He and my two sisters were with her during her last days.

It is times like this that the frustration of my own illness/disability really hurt. The moment I heard mum had been blue-lighted to hospital, my heart was to travel to her. My siblings rushed to her side. I watched from afar. It is not even possible for me to make it to the funeral.

Disability in itself does not prevent travel; it’s just harder. Add illness on top and all sorts of things are prevented. It is the combination of the two that prevent my travel.

If one good thing has come from covid it is the introduction of Zoom services at crematoriums. I will be able to be part of it remotely. I can also send a recorded message about mum.

Grief is an odd thing, I have not been in floods of tears. But I have felt flattened by the loss of my mum. It is as if my world has been knocked off course. The light is a bit dimmer. Things less sure and certain.

I know that my mum is in heaven, partying it up with Jesus. The reason I am sad, is that I miss her and must say goodbye for now.

Goodbye mum

Weight Lifting

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.

Thought experiment:

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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Next Stop Hollywood

I’m not sure if I am getting carried away. It would be most unlike me. We have already appeared in a national professional magazine (Inside Housing), The Daily Mail, two local newspapers (Hartlepool Mail & Hartlepool Life) and now we are going to be on ITV national news. They filmed today and the piece goes out in the next week or two. Is it really a big step to assume the BBC will call next. After all they have a few topical news programmes. Then the obvious next step is a Hollywood producer. It’s a natural and obvious progression. Not at all fanciful.

With that in mind and I think I’ve proven it as a possibility. I have started thinking who will play me in a Hollywood Blockbuster. Because it will be Blockbuster, not some B movie. Tom Cruise, seems the obvious lookalike. We are almost twins. True, he is aging less well than me. But, I will overlook that. Kate Winslet is obvious to play Mary.

Given the way Hollywood writers distort facts, my story will change. I will end up as the victim of a motorcycle accident. That would suit Tom Cruise. He is always whizzing around on fast motorbikes without helmets or suitable leathers. No doubt he/me will look very cool in a wheelchair. Yes, I can picture that. Mind you, I already look cool in a wheelchair.

I’m thinking of titles: ‘Top chair,’ ‘Access impossible,’ ‘Access impossible 2,’ ‘Access impossible 3,’ ‘AI4,’ ‘A few good wheelchairs,’ ‘Jack can’t Reach it.’ I’m sure you can join in the ideas.

What do you think? Am I being overly optimistic? Of course not. I am already writing scripts in preparation. It will save time later.

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A Bit of Support

I have a confession to make. I have had a bit of support. No, it’s not a girdle, nor a truss. Obviously I don’t need those. I’m surprised your mind went to such things.

The support I am talking about, came from Advent Advocacy. Specifically, Joanne, I can actually give you her real name, whoopee. I feel like I should make one up, just for fun. I’ve gotten so use to having to make up names.

JoJo, sorry, Joanne has been incredible. Let me just start up my Thesaurus. Otherwise, I’m gonna get boring saying how brilliant and fantastic she is.

We needed help with a care related issue and Joanne was awesome. Glad I started up the Thesaurus. She visited us at home and after spending time getting to know us and our situation, understood what would help. She is empathetic, caring and knowledgeable. The most amazing thing is that she doesn’t even cover Hartlepool. The request for advocacy help was accidentally sent to her (not by us, I hasten to add). She saw that we had been waiting for support for weeks and stepped in to help. Going above and beyond her normal remit, is just one thing that makes her stand out.

Superwoman, oh I forgot I can use her real name. We first met Joanne at a time when we didn’t know which way was up. Having turned my wheelchair the right way up. Why do feel the need to explain that is a joke? Oh yes, because we live in an age where some people think the earth is flat.

Joanne has a way about her that cuts through the… rubbish and helped us see the issues. I will not go into the details, that isn’t the point of this blog. She transformed the situation. Her knowledge and skill were essential. But it comes with understanding, empathy and compassion. At the end of the day, you can train someone with knowledge. Only character brings the rest.

Mary and I want to wholeheartedly thank Joanne. It is a heartfelt thanks and we know that she must be a blessing to many.

Above and Beyond

There are times when people do things that are above and beyond. They go out of their way to help you. Yesterday, Kelly from Persimmon Customer Care did just that.

If you read my blogs regularly, you’ll know I spend most of my time in a hospital type bed. What you may not know is its position. Right next to a double window. Late the night before last, the little plastic button that enables it to latch/open/close, broke. As our house is still under warranty, I emailed Kelly at Persimmon asking if she could arrange for it to be fixed. I explained that it was the one by my bed and that I am in that bed most of the time. The weather has been very variable. As wind/rain can blow straight in and onto my bed, it needs to be able to close. But it also needs to be able to open on these hot days.

I got an email from Kelly pretty early yesterday morning to say that she had contacted BPS (the window supplier/manufacturer/fitter) asking them to fix it. That’s the proper procedure in this case. I got a text from BPS about 20 mins later saying they would be out in 21 days to repair it!!

I phoned BPS and explained that it was the window by my bed, and I am disabled, and all the above about weather. Two hours later I got another text from BPS with an improved timescale, 14 days!!

I emailed Kelly back and told her all this and asked if anyone from Persimmon could help more quickly. She phoned me back within the hour. Kelly told me she’d organised for one of their customer care operatives, Ross, to come round that afternoon and fix it. When I thanked her, she said, that she couldn’t leave me by a window that doesn’t shut. Ross turned up about 3pm and replaced the handle. I realise that is above and beyond what they had to do. Persimmon could have left it to BPS. But Kelly recognised that it was a very real issue for me. She personally found a way to sort it very fast. I cannot commend her highly enough for that. Hence writing this blog, just to highlight what she did.

No Fingered Typing

I have a confession to make. Don’t get too excited. It’s not that. Or that. I never learnt to type. It’s not that either.

When I was doing my Open University course in English Lit and a Diploma in Creative Writing. I know, it is incredible that I am actually qualified to write. Who knew, not me. At risk of highly annoying any OU tutors who may be reading this; as if they would be reading it. They have given up on me years ago. I had better get back to the point. When I was taking my OU degree and diploma, don’t forget that. I was disabled and limited. Not as much as now, but significantly. Here’s an aside for anyone thinking of studying who is disabled. There are grants available to help you get any equipment you need to study. Which meant that when I started to study, they realised I was typing with two fingers and gave me a two fingered key board. I could just leave it at that and there will be loads of people trying to buy two fingered key boards. This is the problem with social media. If something is written here; it must be true. So let me be very clear; I was joking. There are no two fingered keyboards. Unless they sell them in the shop with the striped paint.

I hope that cleared up any confusion. In reality there will still be people who believe that there are two fingered key boards. Nothing I say will convince them otherwise.

I really must keep on topic. So the real thing that the OU disability grant gave me was voice recognition software. At the time that was Dragon Naturally Speaking. It enabled me to write and even use my PC using just my voice. Now you are all thinking, ‘so what, we can do that with Siri, Google and Word uncle Tom Cobbly and all.’ Yes, but this was a few years ago. Before every device chatted to you, morning, noon and night. Before you could say, ‘Siri, take a letter.’ And she would say, ‘what?’ Or you could click on a microphone button in Word and an icon sit pulsing, waiting for you to talk. This was even before you could have an argument with Alexa.

These days, I have Word. With that pulsating microphone button. The one problem I find… stage fright. It’s like you have walked out onto a giant stage. The audience is all staring at you. You walk up to the microphone ready to sing. Everything goes quiet. What do you say? Obviously I burst into song. Sorry, I mean that I start dictating amazing literature. The next War and Peace. Booker Prize here I come.

It is all very confusing. People assume because I blog, that I sit typing away for hours on end. In fact I chat to my PC for short periods at a time. Then it talks back, I tell it to be quiet, we eventually get an amazing blog together. Not this one obviously. All my secrets are now out in the open. I can’t type and I like talking to technology; who knew?

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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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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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All Encompassing Fact

You are probably expecting an amazing fact. Not an unreasonable assumption. After all, I have brought you blogs on why we don’t live forever. How to keep things brief. The nature of the universe, among other incredible facts. But no, that is not the purpose of this blog. What is it’s purpose? I wish I knew, I started it so long ago, I’ve forgotten.

I’ve remembered. The brain is getting slower with age, but it is still sharp… ish.  When people ask to swap with me in a wheelchair. Which they do quite often, when they see me sailing up a steep slope. Did I tell you that my power wheelchair can go on water? Well, not literally sailing of course. But powering up a hill effortlessly. For me that is. My wife Mary, who is my full time carer. Has to walk alongside up the steep slope; or behind.

She is actually operating the controls. My chair is dual control (rear and side). I had to sign a bit of paper to the NHS saying, on pain of death. Well maybe not on pain of death, but it was a serious bit of paper. That I would not operate the power chair outside. Because I lose muscle function with very little warning. Those spoil sports didn’t like the idea of me powering into the road, or a crowd of people. I suppose they have a valid point.

As an aside, if Mary is behind my high backed power chair, people don’t see her. They assume I am controlling the chair. As you know, I do not have a sense of humour. So I never take advantage of that misunderstanding. You will never see me closing my eyes or looking all over the place, while my big heavy chair, heads towards a crowd.

If Mary is operating my chair from the control on my left (the one designed for my use in the house), that causes confusion too. She can only do it on wider pavements. People approaching us often assume she is just walking beside me. They are unaware that she is operating the chair. They walk straight at her, expecting her to move out of the way. Not just at her, but looking to pass between her and my chair. She has to let go of the controls and bring us to a sudden halt. This has happened when crossing a road; not my favourite experience.

Where was I. Yes, people saying they want to swap with me in my wheelchair, especially on a hill. I am not alone in this. Most wheelchair users get asked this. You might think, ‘so what?’ or ‘what’s the issue?’ you might even be thinking, ‘I’ve done that.’

Let me put it into a form that might hit home. If you wear glasses and someone said, ‘wish I had those?’ when they couldn’t see a distant object. Or you wear a hearing aid and someone said, ‘wish I could borrow that,’ for a short time they can’t hear a distant voice. Or how about you have dentures and someone at a restaurant, struggling to chew their meat says, ‘wish I could have your dentures.’

Those are silly suggestions, because its a silly question. Wheelchairs are not to get us up a steep hill. They are an all encompassing fact. My answer to anyone who says, ‘I wish I could swap with you,’ is this: ‘sure, you can have it all. The lifetime of limitations and the care needs.’ You don’t pick and choose a wheelchair to help you up a steep slope. It is a frustrating need. Just like you don’t choose poor eyesight or poor hearing. You don’t choose to lose your teeth. If you need a wheelchair, you would rather not. Having someone suggest a swap is fine, if they really wanted to swap everything. But of course they don’t.

An all encompassing fact, means just that. Limitation, illness, disability, differently abled, however you want to describe it. They are not a choice. Someone puffing up a hill and seeing, what to them looks like an easier option, is saying, ‘I choose an easier option.’ Disability, illness, limitation is not it. Perhaps they need to exercise more. Or if that isn’t an option, and they do need mobility help, they shouldn’t look enviously at those in more need, they need to get help themselves.

Limited mobility is not a choice, it is an all encompassing fact, that we end up with by disease, illness or an accident.

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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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A New Goodnight

Update: Following on from the mini-stroke, I did not improve in health. Therefore we had to take the difficult decision to sell Gracie. It was best for her and us. She is with a great family nearby. I have been able to rest more fully.

We have a puppy that’s 12 weeks old. Perhaps not the best timing as I had a mini stroke or TIA as the consultant called it, 9 days ago. I am now spending most of my time in my bed. Every now and then I get to see Gracie, our Cocker Spaniel (show). When she is tired enough to just rest on my bed, that’s not very often.

One such time of Gracie resting, is in the evening after a day of running around, the puppy, not me. This means that Mary and I can watch a bit of TV while Gracie rests. Well I say rest, lies back waiting for a slight sound to react to. Puppy owners will understand.

Once she has pretended long enough and is ready to go downstairs again, Mary picks her up and says goodnight. Obviously I also say goodnight to Gracie. Here is where the fun starts. Even though Gracie is only 12 weeks, she is not tiny. So once Mary has picked her up she fills Mary’s arms. She is also a wriggler. The puppy, not Mary.

I go to give Mary a kiss goodnight and either Gracie joins in and also gives me a kiss goodnight. She doesn’t want to miss out after all. Or, if Mary puts her on the other shoulder. Then there is the ever present danger of kissing a dogs bottom instead of my wife. The fun of having a puppy.

Oh well, good night all.

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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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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Good Morning

Good morning from sunny Hartlepool, don’t check your weather forecasts, they are not always accurate. Besides, it was sunny, when we arrived. Hartlepool greeted us at the border, yes when we were getting our Southern passports stamped, with glorious sunshine. Actually on the subject of borders Teesside is a funny place. It technically doesn’t exist; by which I mean you never reach a sign that says you are entering Teesside. But you do get signs that tell you have many miles away it is. I wonder if it’s like a rainbow and if you find it there’s a pot of gold?

The county we live in is actually called Cleveland, unless you are entering the address on some systems, then it’s Durham. Anyway, back to arriving on Teesside, I mean in Hartlepool. The effort of that display of sunshine was a bit much and by lunchtime a few drop of rain made an appearance. But I maintain that is merely because we were in the car at The Headland waiting on the house keys. As an aside, The Headland has really changed since we were last here. Verrills Chip shop has an ice cream parlour at the side. What else are you expecting? The rain knew that we were staying in the car, had it seen us exit the car it would have stopped immediately. Because the moment the keys were available, mid-afternoon and we headed to our new house, the sun popped its head out again. Which was good as it meant we were dry and warm when our lovely new neighbours came out to say hello. God has blessed us with wonderful neighbours, just as he did in Wellington.

Now about the elephant in the room. A few of the comments on my previous brief post, suggested that it is cold up here. I don’t know what they mean, it is June after all. Let me make this absolutely clear for the naysayers: We did not go to the house the day after we owned it in a howling gale and heavy rain. Mary certainly did not struggle to stand up as she went around the back of our house to check on the plants. The plants were not huddling together shouting, “why did you bring us here? We’re southern plants, not hardy northerners.” Plus, we have not been glad of the heat being on full in the hotel. So, any thought of the cold up here is totally wrong. Besides, weather is up and down anywhere. The odd drop of temperature in June can happen in the south too. The forecast is for a balmy 17 degrees centigrade tomorrow. I might even take a layer off; I was finding the furs a bit heavy and I never liked smearing whale blubber over my skin. Actually, from our experience living here 11 years ago, this is unusual for June. I remember days in summer I could take my coat off. Not for later in the year though. But we do have a warm house to shelter in.

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