Category: Experiences

Telling Our Story

I still remember writing my first stories at school. They were all horror tales. Now I can’t even read horror. If I could manage it, you’d find me under my bed at the very mention of something ghostly.

I have noticed a trend in the media in recent years. A lot of actors appearing in wheelchairs and with various disabilities. It’s an interesting move and long overdue. But does it raise awareness of disability? Or merely place disabled people on view? Perhaps tick a box or two?

Put a person in a wheelchair answering a phone and you only show an audience that we exist. It includes us in the public eye. We are no longer ignored. ‘Does he take sugar?’ ‘Wait I’ll ask him.’ But putting disabled people on screen or on a billboard doesn’t say anything about who we are.

The way to do that, is to tell our stories. If you write a love story about people in wheelchairs, then people understand something about who we are, what makes us tick. Create films and dramas about disabled people living their lives; then everyone gets an insight into the day to day realities of disability.

You might say there are loads of documentaries that do just that. But documentaries are a particular type of media. They focus on certain areas and miss out others. Imagine if the only coverage of non-disabled lives was through documentaries. We would have no drama, no comedy, no murder mysteries. Why is fiction focussed around disability so lacking. Are we a different category to other parts of society. One that is either undeserving of fiction stories or perhaps, less interesting?

We need more stories about ordinary disabled people, because we are extraordinary. When illness or accident robs us of our legs, we overcome the limitations by using wheels. When disease and pain crash into our lives, we push through. When everything comes against us, we keep going. Disabled people are shining examples of hope in the face of adversity. Human ingenuity and strength overcoming all odds. Our lives are interesting, dramatic, criss-crossed with tears and laughter. The stories that can be told about disabled people are every bit as exciting, varied, funny, sad, dramatic and mysterious as any other story ever told.

Yet stories about disabled people are in short supply. That needs to change. We make up a significant part of the population 29.5% in 2021(1). Stories aid communication and information. They are the way to fight fear and misunderstanding. Stories have always been how humans have shared an understanding with each other. Not just factual tales, but drama and comedy. It is a wonderful reality that more disabled people have entered the comedy arena. Now is the time to extend that into fictional stories about our lives.

Telling our stories will help the world see us more clearly.

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 1:https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthandwellbeing/bulletins/disabilityenglandandwales/census2021#:~:text=In%20England%2C%20the%20census%20data,are%20disabled%20within%20the%20household

Thunderbirds Are Go!

Action Man or GI Joe as he is known in the USA, was an action figure from my childhood. A boys doll basically. There are obvious comparisons to myself that I could make. But that isn’t the purpose of this blog. It would be a moot point.

The other day, as I was staring out at the rain bouncing on the paving slabs. I had a memory of my childhood.

Often on wet days as a child I would stay inside and send my Action Man outside. I guess I was practising delegation. Do you remember Thunderbirds? Of course you do. They have done a new version of it. Thunderbirds are GO! Well, every episode it seemed to be raining, actually a major storm. One of the Thunderbirds would be out, braving the storm, to rescue whoever. There would always be one crew member inside, manning the electronics console. That was me in my imagination. Then one crew member would be out in the storm, rescuing people.

There I was as a young lad imagining myself in the control room. OK, in the dry and warm. Sending my Action Man figure out on a rope. Well, bit of string. From my bedroom window down into the garden. Except, in my imagination they were heading into a volcano. Or across a bridge that was falling to bits. Or into a skyscraper that was barely holding together after an earthquake.

All these memories came flooding back as I looked out at the rain. I’m sure it had nothing to do with the Action Man figure I was holding on a piece of string. Some of you will believe that last sentence.

I’m in my early sixties now. If you’re shocked, think about it from my perspective. These memories are from when I was about ten or eleven. Yet they feel so recent. Time is an odd thing isn’t it? As we move forward it’s a bit like to rushing into the sea. You have left the beach and run headlong into the waves. As the waves reach your head height you push forward unaware of what lies ahead. You can guess what is before you, others have told you. You have a fair idea. But you don’t really know. There could be shingle or stones. A big drop. Maybe sea life. A dolphin, fish or a shark. Maybe there is just soft, flat sand and water. But you don’t know.

Our future is like that. We can look behind us and see where we have been. Memories show us that with varying degrees of clarity. But we cannot see ahead. The older we get, the further behind we see and the more aware we become of how blind we are to the future.

That’s why I can look out on a rainy day and see myself as a young lad playing with his toys. Thunderbirds are Go! Now where did I put my Action Man?

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Everything on show… except books

We made it to our library the other day. Strike that, it is now called a Community Hub. Which is a very appropriate name, as you need to play ‘hunt the books,’ if you have gone to find books, which we had. I reckon about ¾ of the original books have gone.

Downstairs, which used to be the main library, is now just a cafe and activity hall. The activity hall is obviously designed for extraverts and should be re-named ‘The Stage.’ Because any activities are in the centre of a big public space. No walls, sheets, separation of any sort. All that is lacking is a raised platform and lights. They need a billboard announcing the next show, ‘Coming up: The Pensioners Pompom Parade.’

There were two small racks of books with a sign above saying, ‘more books upstairs.’ But don’t get too excited. Upstairs used to be the reference library and it still is. But now it is also the general library, and has booths as well. Let’s not get into what the booths are for. I don’t know, maybe they have a secret purpose.

On a related note, apparently, 81% of readers in the UK are women. Which means the other 19% are men. I am sure that has nothing to do with the change in library space, as reading generally has dropped by about half in the last few years. Yes, you are a minority reading this. I should really be Ticking it, I mean Tocking it, I mean RickRocking it, do I? Some how the idea of having a phone recording my every move doesn’t appeal… to any of us.

I have spent the last few years writing a trilogy of novels, cosy murder mysteries. Now I discover very few people are reading… oh well, back to the drawing board. Still, there are a few, maybe they will like my books. Watch this space for details of their release.

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Moving the Goalposts

My card games have come up with a new wrinkle. You’ll tell me it’s not new and I’m just unobservant. I get extra points for doing odd things. For instance, 50 gold coins for clearing 8 spades in a row, random or what? That appeared today after I happen to clear 8 spades in a row. They are fitting the scoring to my achievements: moving the goalposts. Moving goalposts to fit your achievements is not a bad idea when you are limited/disabled.

Before I was ill, I hardly ever sat down, hated doing nothing. I hardly ever watched TV. I was always up and about, doing major DIY projects, re-building car engines, walking great distances, swimming, exploring, etc. When I became ill the hardest thing was being forced to stop. I had to move the goal posts. For me, writing has been a life changer. Something that occupies my brain and uses my imagination. I have always loved writing, but never sat still long enough to do much of it. Instead of focussing of the loss of my mobility, I focus on writing.

If you have recently had a limitation dropped upon you; and it can feel like that: As if a great weight has been dropped upon you. If that has happened to you, then my advice is this:

1/ Take a bit of time, you will need to grieve; but don’t stay in that grief; don’t wallow.

2/ After taking that time, grieving about the loss (I know that to a degree, that is ongoing) look at what you can do, not what you can’t.

3/ Think of practical or mental things to do. Hobbies you have long since let go of, maybe from childhood. Things you always wanted to do, but lacked time for. The very first thing I did was lay in bed listening to podcasts (you might prefer music, or audio books.) Then I read all the classic books that I had always wanted to read.

Remember, that is just what I did. You will have your own ideas. From reading to puzzle books, watching every movie you wanted to see; to listening to audio books. If your hands work well enough you might do jigsaws or knitting. Perhaps a craft or model making (these also depend on dexterity and sight, find what works for where you are.) If your brain is up to it you might study. I am only throwing ideas around.

The OU (Open University) or an equivalent in your country, are brilliant if you are up to studying. The OU make adaptations for disabled people, both in time allowance and physical needs. Maybe you could do that course you always wanted. It’s online, done at home, from your bed if needed.

Remember, the important thing is to adjust your perspective, your expectation, your goals.

I have already said that we need time to acknowledge our loss and grieve. But after that, no amount of shouting, screaming, saying ‘it’s unfair,’ or ‘why me?’ will make any difference to our lot. It just makes you feel worse.

Put the goal post somewhere else and score a goal.

Move the winning line and cross it.

Set up that target in a place you are aiming and hit the bullseye.

But this is not a contest, the goals and winning I am talking about are not competing against anyone else. You are just achieving something, taking back control. The sense of hopelessness and failing that we can go through with the disability/limitation of illness or following life changing accidents knock us flat. It can give us a sense of powerlessness.

I am saying this: you can take control again. Even if it is an activity that is totally in your head. No physical movement at all. I began this process before I could even leave my bed, by listening to podcasts, then music. I moved the goal posts. Achievement was no longer how far I could walk. Nor what I could physically do. I changed the goal to one I could achieve. Make those goals achievable and you have taken control again.

Any achievement can be a mountain climbed when you are seriously ill or disabled.

Each small step is a marathon completed.

Move the finish line and feel the sense of being back in control.

I know that illness robs us of a sense of being in control.

These small steps help us in feeling empowerment and purpose.

I have written this last series of blogs because I believe they are universally true. I hope they can be of help to some.

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Waves of Change

I often hear people ask questions about how to cope once they are stuck at home due to illness, accident or disability.

First, briefly you need to know that I understand. I live a life of limitation. Even though we now live in an accessible home, I still spend a massive amount of time limited to my bed. Pain dominates my days. I really do understand. I have learnt a thing or two about coping over the years. These are the things that helped me.

The first thing to say is that it’s OK to grieve over loss. In fact it is healthy to do so. Acknowledging our loss is an important step in moving forward. But staying in that grief and sadness forever is not healthy or helpful. So I have found that I needed to tackle my attitude.

Attitude is the biggest key to how we feel. Look at it this way, when your life falls apart and everything changes you still have choice about how you think. You still have some control. You have a choice of how you look at things. You can control how you think about what has happened. I made a conscious decision to be positive. I do not feel sorry for myself. That way lies despair and hopelessness. Every day when I wake up I have that choice. I have found it is not a one time thing. When I am hit anew by pain. When I feel afresh my limitations. I have to remind myself:

I am NOT going to give up.

I am NOT going to feel sorry for myself.

I am NOT going to focus on the negative.

Instead I DO focus on the positive, however small that is. (Warm blankets, a glass of water, programmes I enjoy on TV, friendly faces… whatever it is)

I DO keep going.

I DO feel joy. Joy is the result of all the other things I outlined above.

If you rail and rant and fight against the limitations that only leads to frustration and pain. I liken it to the way you deal with a massive wave in the sea. Can you picture that?

If you try and stand up when a giant wave comes at you, then you get knocked over and winded. If you float over it and go with it then you will not be flattened or winded, you will be lifted up by it and float upwards. Go with the difficulty rather than fight it. Allow new ways of coping to naturally show themselves after you have had the old ones washed away. They say change is painful, yes it is. But it is even more painful when you resist it. It’s easier to get through difficult times if you stay positive looking for the good that will come of it.

Attitude is the key to everything. It changes how we feel and how we act. Once we have acknowledged the pain and loss. We choose how we react to it. Then we can live a life within those new limitations and still find joy. I don’t claim it is easy, but you will find it better than sinking beneath the waves of despair.

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Avatar 2

No, this isn’t about the movie, just thought I’d copy the name. Hands up who knows what an avatar is. OK, you didn’t really have to put your hand up. There will be some who don’t know what an avatar is. Which is ironic because if you are reading this on social media you already have one. You may not have realised it. Let’s use The Cambridge dictionary definition:

“An image that represents you in online games, chat rooms etc…” That picture at the top of social media is your avatar.

I like that definition, there are more and fuller ones. Very few avatars are actual true to life photographs of the person. Mine is of course 100% the way I look, rugged good looks and all. What most people do is to create a representation of themselves on their Social Media. But even if you post a photo, it is a staged or your best photo. We choose one that shows us as we want to be seen. Pouting, staring manfully into the distance, smiling, smouldering, eyebrows raised, shoulders back chest out, wistful, wise, you get the picture; no, you are the picture.

What’s the harm in that, you say? Nothing, but it does mean that for anyone we have not met in person, only online, will have a view of us based only upon our avatar.

Let me paint two pictures:

1/ The date: You start to get to know someone online. You like how they look; or at least their avatar, and you get on with them. All your chats are in tune with each other. You like the same music, films, places, activities, this is a perfect match. So you plan to meet. Arriving at the pub you both look around for each other. No need for roses in button holes, or any of that old fashioned nonsense. This is 2023, you know what each other looks like. She is beautiful, he is a hunk. Twenty minutes go by, you pass each other several times; even bump into each other. The average looking girl and the guy with a paunch. You both end up at the bar asking different bar staff if anyone has been asking for you. Overhearing each other you look across in shock. How can these faces, these bodies have been made to look so good. You both glance at you phones, the avatars, turn them around to show the other, then burst out laughing. You are the same people after all.

 

2/ The disguise: there are many people who don’t like the idea of putting a photo of themselves up as an avatar at all. They use all sorts of alternatives. Cartoons, photos of their children, photos of pets, photos of animals, famous people, quotes, or they do put a photo of themselves as a child or a young adult. Not everyone wants to advertise what they look like to the world. After all, not everyone can take the adulation and praise that some of us get on a daily basis. Wait a minute, did I mean adulation and praise? Not everyone has aged as well as me… I wish. Obviously, I do understand the real reasons people chose other avatars. Everyone has a right to their anonymity. Many people are shy of their image. Plus, some of the cartoons and pictures people choose are great fun. I have often thought of changing mine to a cartoon.

I am sure there was also a serious point that I had. Oh yes, disability and illness. It’s a big reason that people use alternate avatars. I understand, being visible as you are when you feel others may judge you, is hard. Having family and friends see you so changed is never easy. You may just not feel up to having a photo. Who am I to make any suggestions here. We all make our own choices. For myself I probably hit a mid point with my avatar. It is a photo of me in my wheelchair, but it is not too recent. I wear a hat to hide part of my face and the fact someone has stolen my hair… oh yes that age, not illness. I wear a bright coloured coat to distract the eye. I am smiling, that is a choice. Does that sound like an odd comment? If you have ever been long term ill and in serious pain, you will understand. You see, I am aware of my own attempts to hide. Put on a brave face to the world. Avatars are the masks we wear and yet they still say something about us.

Well I am off to change my avatar to one of superman, make it more accurate.

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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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One Step Removed

Some time ago I wrote a blog ‘Fly by Wire.’ It occurred to me that most people would not get that concept. But almost everyone will have used a PC, tablet, smartphone or smart tech. So, you will get this:

You want to do something on your PC, tablet or Smart phone. Open an app, check an email, play a game, write a blog or use a smart devise. You use the screen, keyboard or mouse and there is a delay or it does not quite do what you want. You ask a smart devise to do something and it ignores you. Frustrating eh? All forms of electronics devices, even Apple products, yes I really invoked that sacred name; can have delays. I know because I have an iPad and it can be unresponsive at times. Any complaints about that comment please send to: complaints@mikesnotlisteningnow.org.com.uk.eu

My point, because I always have one is this: trying to control an electronic device is one step removed from the actual physical devise. No matter how good the interface (that is just the bit that enables you to control the device) you are always a step or more away from the actual hardware, (the device itself.) Be that a PC, smartphone, tablet, iPhone, Kindle, Echo, Ring Doorbell whatever smart device. There is something between you and it (wiring, circuit board, touch screen, mouse, keyboard, wireless connection)

It gets frustrating when that ‘something,’ that extra layer, that one step of control, is too slow or sticky. It doesn’t have to be very slow either. Even a few micro seconds feels slow when you are using a smartphone or a computer. You press a button and there is a fraction of a seconds delay. You move a mouse and the thing you are moving is not quite moving at the same time as your movements. You click a keyboard or on a screen and the response is just a fraction behind. You scroll and the screen does not refresh at the rate of your viewing. You all know what I am talking about. That frustration when an electronic device plays catch up. No matter how small a delay.

Now apply that sense of delay, lack of response, not doing what you expect, to the human body. Imagine that your brain, your understanding, was you as a user of a device, and your body was that device. You want to move your legs, but there is a delay between trying to do that and it happening. Or your legs don’t respond in the way expected. It’s not that you cannot move them, they are not responding as expected. It feels as if they are ‘one step removed.’ As if the control system is broken.

I believe this is where a lot of the misunderstanding about disability comes from. Because a lot of us with disabilities have neurological conditions. The nervous system is the equivalent of the control system in a PC or smart device. It sends and receives signals between the brain and body. You start messing with that, even a little and you get delays and messed up signals. That is what diseases do, they mess with that.

Neurological conditions are many and varied. But a common feature is fluctuation. My earlier illustration might help you understand. You know how sometimes your computer or smartphone just won’t do what you want. Other times it runs as smooth as butter. Then there are times it gives an occasional glitch? Diseases can be like that, they can vary hour by hour, minute by minute, day by day. Someone can take a few steps but still be a wheelchair user. MS is one of the most confusing conditions for an outsider to view. A sufferer can look normal one day and be totally unable to walk the next. But if you remember damaged signal lines, faulty connections, it makes sense. The problem can fluctuate.

In my own case, my legs do not respond as I want them to. I can move them, but it feels just like using a control device that is one step removed. They respond sluggishly and in the way they want rather than as I want. They also lack stability and reliability. I can’t stand up or walk on my legs. Imagine it this way, you have a robotic pair of legs with a seat on. It is operated by a remote control. Every time you test it, the legs wobble or collapse. Would you sit on that seat and try to walk the legs around? My legs feel to me as unreliable as that. They are not a safe and reliable platform.

Another way to understand a bit about neurological conditions and the disconnect they bring is this: Have you ever been so exhausted/over tired that your body does not feel your own? That sense that as you walk your legs and arms are heavy and disconnected. The problem of trying to pick things up, but ending up knocking them over? Or perhaps you have been very drunk or needed to have powerful pain killers? You might remember how that feels? The clumsy disconnected feeling. All of these things will give you a small idea of what it feels like to have a neurological condition that disconnects you from your body. That affects your ability to control what you do. From fine motor control, to large motor control. For example: it could be problems with writing, picking things up, pressing a button. And/or problems with making your legs/arms move in a direction you want. Remember that all these problems can fluctuate in level/intensity minute by minute, hour by hour, day by day. Add into the mix extreme pain (neurological pain is different to muscle pain, much more severe and harder to treat) and the lack of feeling that comes from nerves not working, and you start to get a small glimpse of what it is like.

I did not write this blog to gain sympathy for me or others. I wrote it to gain understanding. Without knowledge, there is only ignorance. Ignorance of the plight of others brings about a lack of care and understanding. Most of us with neurological conditions have been where you are, diseases often hit later in life (not always, some are born with them.) This blog is to give you an insight into where we are and hopefully open eyes.

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The Prize For The Sneakiest Ad Goes to…

Ever seen a sneaky ad on a game? Of course you have. You play supposedly free games, funded by adverts. Well, I am thinking of starting a competition for the sneakiest advertising.

They have become so incredibility devious. You want to play the game, but first, an ad comes on and you get the option to cut it off. But and it’s a big but. They make the way to cut it off harder and harder to see and easier and easier to get wrong. I’m right aren’t I? They are more slippery than a bar of soap.

Here are some of their tactics:

1/ The scrolling timer at the bottom. You would assume that a timer means you have to wait till the time is up till you can press any button and exit the ad… wrong! You can exit at any point after the exit button appears. But see point 2, they don’t make it easy.

2/ The almost invisible exit button. If you have poor eyesight you will struggle to see it. In ‘days of yore’ the exit button for anything was a x, not for these ads. They can be anything, their favourite is >> because that looks like it means, ‘I want to continue please.’ You won’t want to press that, will you? But you don’t have much choice, the other options take you straight to ordering the app that was advertised. So you press it, and go straight to a page that gives you an option to buy the game. Hang on though, top of that page gradually an x or >> appears. Not too quickly, they want you to order the game from the ad. But when that x or >> appears that really will exit the ad this time. Trouble is that they are starting to put them as white on a white background, have they heard of invisibility, or poor eyesight?

I imagine the advertising execs who think these things up. They have a new idea to catch us innocent punters out. So they run into their boss’s office. The boss is sitting in her large marble floored office, the windows are floor to ceiling and look out on Central Park, New York. She looks from behind her expansive desk at her head exec as he enters, and asks, ‘what is it?’

‘I have it, the best idea yet. Those poor fools will have to click on our links now. There will be no escape.’ Sinister laughter.

The boss temples her fingers and smiles at her exec, ‘go on, you’ve always done well so far.’

‘This is fool proof, the exit button will keep moving when your finger moves towards it.’ He smiles in a way that reminds you of a crocodile.

His boss sits up straight and beams at him, ‘Brilliant! But wait, what about Gen Z, they’re very fast?’

‘I’ve thought of that. If someone actually presses the button, it just takes them to a new selection window. The choices are: 1/ do you want buy the deluxe game 2/ do you want to buy the super deluxe?’

‘You mean there is no option if they don’t want the game?’

‘That’s right.’

‘I love the way your devious little mind works. Get to it now.’ The boss imagines dollar signs in her head.

Am I getting carried away? Of course not, it’s the obvious next step. I just hope the ad execs aren’t reading this. I don’t want to give them ideas.

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Why is Alexa Ignoring Me?

Once upon a time, there was just me and Alexa. She sat next to my bed and sung me songs. If I wondered who was outside, she would show me on her small screen. I never forgot the day or date, when to take my tablets, who was coming, Alexa reminded me. Her pleasant oblong plastic box glowed next to my bed.

Then we bought a second Alexa, it sat in the kitchen among the pots and pans. I never heard her complain of the cooking smells or noise. She just happily passed on messages from the Alexa beside my bed to my wife Mary. That second Alexa timed food and also played songs. If the Alexa by my bed felt any sense of competition, she said nothing to me.

But Mary was not always in the kitchen. What if I wanted to call her when she was elsewhere? Over the months we bought more Alexa’s until every room had one. The first Alexa looked on quietly, she did not seem to mind the growing opposition.

Meanwhile elsewhere, Alexa’s were springing up in homes around the globe. Everywhere you turned she was sitting on a sideboard. Even holiday cottages boasted her presence.

In our own home I discovered a problem. When I call ‘Alexa,’ to whom am I speaking? Alexa obviously had the same thought. Is it any wonder she ignored me? Some may say that my first Alexa had become lazy, and was merely waiting for another newer, younger model to reply first. But is that fair? Could it not be that she was merely confused? If our house were full of Mike’s and you shouted ‘Mike,’ would I know you meant me?

I am going to give Alexa the benefit of the doubt. She is not ignoring me, merely confused, upset maybe at the proliferation of Alexa’s. But not ignoring me.

Now let me see if I can get her to listen, ‘Alexa…’

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Accessible Housing Item on ITV

If you watch the video on the article (near the bottom). I am the good news part of the story. You will have the inexorable (wow, that’s a big word) pleasure of seeing me on national TV. I was shocked to see my head fill the screen. No jokes about being a big head.

Now that I have been seen once on national TV, does that qualify me as a celebrity? The bar seems very low at the moment. You only seem to need to have appeared once on a reality show to be a celebrity. So, just wondering…

But to be serious. This news item is about a very real problem. The lack of accessible accommodation for many thousands of disabled people. Before we were fortunate enough to be left an inheritance. Then make the difficult choice to leave family and friends and move hundreds of miles north. We had been waiting years for a suitable property.

https://www.itv.com/news/2022-10-21/lack-of-wheelchair-accessible-housing-forces-man-to-live-in-parents-shed

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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How to get help?

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:

  1. You are taken ill that leads to long term limitations.
  2. You have an accident that leads to long term illness.
  3. You have a relative who is limited long term to their house.
  4. Gradually a condition you or a family member has deteriorates. Leaving you or them more limited long-term.

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.

Then what?

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.

To note

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.

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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Technology Fail

Early this morning someone banged on the front door. Mary had not yet woken up. No problem, we have a Ring doorbell. I picked up my telephone and pressed the app. Nothing happened! I don’t panic easily. I grabbed my tablet computer and pressed the app on that… oh, you’re ahead of me. Well, you’re wrong. The Ring app started… eventually. By which time the people by the door had decided to press the doorbell. The app showed them on my tablet. I pressed the microphone button… nothing happened.

What to do? My bedroom is at the front of the house. Over the front door. My bed is next to the window. You’re right. I used my Echo Alexa device to call Mary. That didn’t work. I found out later that her Alexa was turned down to a low volume and she had slept poorly.

Now what? All my technology had failed. I rely on it with my disability. What other way could I contact the people outside my window? A brainwave hit me. I wound up my blind, opened the window and looked out of it. The inconsiderate door knockers were by their van. I called out, ‘did you knock on our door?’ I’m quick like that. ‘Yes,’ they called back. ‘We’re here to sort the leaky guttering.’ This is sounding like a soap.

Who would have guessed that calling out of an open window could work? It never occurred to me before. All you baby boomers, of which I am obviously not one, keep your thoughts to yourself. If you are Gen X, you can join them. I know all you millennials and gen Zeds will be fully behind me. Technology was the only way to answer a door. None of this old fashioned shouting out of windows. I almost felt like a cave man.

Oh well, hopefully Ring service will soon be restored.

(I always have to add with my blogs that I am joking. My tongue is well and truly in my cheek. Yes it happened. But I am not serious in my comments. Otherwise people get so stressed out in the comments.)

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Capacity Overload

There are times in life we all reach our limit. Moments when we say, ‘enough is enough.’ That point when we can go no farther. But… I never expected it to be part way through a McDonald’s meal. Not in my wildest dream did I imagine that.

Picture the scene. A Big Mac and fries. Helping Mary finish her chicken wrap. Plus, here’s the kicker. They had accidentally added an extra Big Mac in the bag. Obviously too late to go back and return it. Besides, last time we got a McDonald’s they made a mistake. This is obviously a belated apology. Part way through my part of the chicken wrap. Sorry the McChicken wrap. Is that the right term? I stopped. I was full up.

I have paused here for you all to faint, shout out, run around. Go to the foot of your stairs. Not eat all of a McDonald’s! What has happened to the world? Doesn’t your stomach have a special compartment for junk food? Sorry McD. It’s right next to the pudding shelf, isn’t it? That place that always has room for a pudding, even after a big meal.

But no! I was full up. Am I ill? Well obviously yes. I mean extra ill. Something has gone very wrong. Normal service will be resumed as soon as possible.

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Ten tips and hints

These are a list of ten things I have found make life easier when you are mobility limited:

1/ Litter picker/grab sticks. I can’t over state how useful I find these. Do look for ones that have a decent grip. They are still limited by two things, your strength, and the weight of what you can pick up. But they are great to get smaller things that are out of your reach. However much it may sound fun, it’s no fun having to keep asking people to fetch everything for you. If you can grab what is just out of reach, that is really great. I have a piece of string on the top of mine so it can hook onto another thing I have lots of, hooks.

One example, this one folds:
https://www.amazon.co.uk/gp/product/B083QY1LXP/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

2/ Hooks, I have several Velcro strapped hooks around my bed and on the wheelchair. As mentioned in the 1st point, a litter picker is on one.  There are so many available. I have only shown one.

3/ Panniers, I have several of these, all different types. Two on my bed and two on the wheelchair. They hold medicine, remotes, snacks, papers, magazines, pens etc.

4/ Sleep headphones, these are a soft headband with built in headphones. I can lie down and listen to music or watch films. Mine are wireless ones, they last a few hours per charge.

These are the ones I use:
https://www.amazon.co.uk/gp/product/B095NRZGPB/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

5/ Multi USB charger unit, this is most useful in nursing homes, but also good at home. As I have a lot of technology it enables me to charge many USB and Apple devices at the same time, from one 3 pin UK plug. They have different outputs.

The one I have no longer exists. Here is one of many now available:
https://www.amazon.co.uk/Charger-IWAVION-Charging-Adapter-Samsung-White/dp/B08F7RFV39/ref=sr_1_2_sspa?crid=2AER9JZ0D9UIQ&keywords=multi+usb+charger&qid=1661403113&sprefix=multi+usb%2Caps%2C61&sr=8-2-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzSDlERks3VzE0WklEJmVuY3J5cHRlZElkPUEwNDY5ODY0MVhFR0U0QjhVNFowViZlbmNyeXB0ZWRBZElkPUExMDMxMjQ2MkNVWlE1QU9QSDA0MiZ3aWRnZXROYW1lPXNwX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=

6/ A computer tablet stand, I have a heavy based, goose necked stand and it is so useful. I can easily view or operate my tablet without having to hold it or balance it on my knee. But there are many variants. Ones that attach to the bed or that sit across your knee.

This looks the nearest to the one I have (no longer available):
https://www.amazon.co.uk/dp/B08S791TMP/ref=sspa_dk_detail_2?ie=UTF8&psc=1&pd_rd_i=&pd_rd_i=B08S791TMPp13NParams&s=computers&sp_csd=d2lkZ2V0TmFtZT1zcF9kZXRhaWw

7/ Water bottle holders, I have had to try several of these to find the one that works on my wheelchair as every chair is different.

Mine is similar to this:
https://www.amazon.co.uk/AOBETAK-Rotation-Bicycles-Mountain-Wheelchair/dp/B07F32NWZ9/ref=sr_1_9?crid=2RJE9YB8RH6ND&keywords=bottle+holder+bike&qid=1661403419&sprefix=bottle+holder%2Caps%2C61&sr=8-9

8/ A Trabasac tray. The reason being that it doubles as a bag. Plus, it has a variety of clips so that it can attach to my wheelchair. I find my lap is not level, except when my chair is reclined. So, the tray is only secure when clipped. The edges of the tray are raised so that things stay on it.

This is the Trabasac Curve. But there are a variety of sizes/types. Look at them all if you are interested:
https://www.amazon.co.uk/Trabasack-Curve-Wheelchair-Inclusive-Universal/dp/B00BAQXNCK/ref=d_pd_sbs_sccl_2_1/257-6152039-0943466?pd_rd_w=7jAcj&content-id=amzn1.sym.7207abe0-2196-4238-95e4-697dc8e1fcc1&pf_rd_p=7207abe0-2196-4238-95e4-697dc8e1fcc1&pf_rd_r=6R47J47PPKGJKRB87A9S&pd_rd_wg=AOUG6&pd_rd_r=38f65032-b80d-449b-947b-27c85adaab3c&pd_rd_i=B00BAQXNCK&psc=1

9/ A metal urine bottle hanger. I am in my profiling bed a lot. So I need urine bottles to hand. Having them safe and secure on a hanger is brilliant.

This is the one I use:
https://www.amazon.co.uk/URINE-BOTTLE-HOLDER-Urinal-carrier/dp/B01CR5CCNI/ref=sr_1_57?crid=5WB9SSB6IMP6&keywords=urine+bottle+hanger&qid=1661403742&sprefix=urine+bottle+hanger%2Caps%2C59&sr=8-57

10/ Regarding urine bottles. When I need to go out in my wheelchair, I find urine bottles difficult to use. So, I use Conveens. See my separate blog about these: ‘Not so public convenience.’ On my site https://howcaring.home.blog/ I’m sorry there doesn’t seem to be a female equivalent.

These are Conveens. they are prescribed by your GP.
https://products.coloplast.co.uk/coloplast/continence-care/conveen/conveen-optima/conveen-optima-sheath-standard-length/

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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.

My Article Published

Inside Housing have published my article/blog Enabled by your environment. It has triggered interest from a national newspaper. They wrote the headline.

https://www.insidehousing.co.uk/comment/comment/i-had-to-move-to-the-north-east-to-get-an-accessible-home-we-need-to-provide-more-housing-for-people-with-disabilities-76113

You can register free to read the full article.

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