Kid’s Stuff

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

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

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

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

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

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

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

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

Laughing we carried on to the park.

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

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

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

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

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Typical item that is both for baby buggy and wheelchair

Everything happens at once

When I was well and, on my feet, I was extremely active. I never used to lie in bed in the morning and I didn’t really enjoy sitting watching TV. I was a bit hyper active, preferring to walk places rather than drive, make things rather than read. Ironic then that the illness has limited me to bed and made me so reliant on others.

When we used to have visitors, I would always leap up to make drinks and be quick to cook and or wash up. I actually enjoyed tidying up!

How frustrating then to have to sit or lie down and watch others do everything for me. The most frustrating thing being when someone helps me with DIY, I want to be able to do it myself again.

There was one time, years ago, when we hired people from a local, low cost, social services funded group, to do some work in our house. I needed the TV putting where I could view it. That involved moving the TV and aerial, a job I would have expected to take me less than an hour. I watched the guy work all morning in fascination wondering just how long it could take to do such a simple job. In the end it took 4 hours! I was glad their hourly rate was so low. But I was also frustrated I couldn’t just get up and do it myself.

Many times, my wife Mary is rushed off her feet sorting out the house, organising everything ready for my carers and looking after me when I have no carers around. I have carers visit around 19 hours a week. As I need to be looked after 24/7 that means the remaining 149 hours are down to Mary.

We often find that everything happens at once. When we arrive back from a trip out there is a lot to do. Mary must remove my coat, then hoist me out of the wheelchair into my bed. My bed is in our front room and that is only small, so the wheelchair needs taking into the kitchen to give room and be charged. Then she needs to take off my sling, put up the bed sides, remove the sheets that protect our carpets, wheel across the trolley that holds my urine pots and off course empty them. Because of course I need to use them. If you are a man and have ever tried to wee sitting up in a chair into a urine pot, you’ll understand why I wait till I am in bed if I can. For the benefit of women reading this, you get easily injured, enough said. My drink also needs filling. Then my duvet needs bringing across along with a pillow for my legs to rest on and it all needs tucking in. When you are immobile your feet get very cold. Add to that the fact we often arrive back at meal times, the phone often seems to ring, or someone calls at the door and you can see how busy it becomes for Mary.

One time I was in the middle of being dressed in my pyjamas on arrival home, fortunately I was in my underwear, when a delivery driver found his way into our back garden and was knocking and waving at me through the window while I grabbed a blanket.

As I watch Mary rushing around getting everything ready, waiting for a duvet or drink or a urine bottle. I just wish I could get up and get it. It is very frustrating to look at something just beyond my arms reach, that would perhaps be only one or two steps away and just not being able to get it myself.

There was one time when I was so desperate to reach something just out of my arms length and Mary was extremely busy. So, when she was in another room sorting things out, I decided to try and reach it. The cot sides on my bed only go to half way down so I dragged myself to the bit without bars and sat on the edge of the bed, holding the bars. Still I couldn’t reach. Then I thought ‘maybe if I knelt on the floor?’ My bed is very low to the floor and I have quite long legs, but even so I dropped quite hard onto my knees. Hard enough that they bruised, and I had to explain to my carer the next day what I had done.

Now here’s a thing I should have realised, I can’t stand up or weight bear because I lack strength in my legs, all my legs, not just below the knees. So, you can probably guess what happened? I fell flat on my face. After I recovered, I used a great deal of effort to drag myself back onto my bed before Mary came back through. I still had to explain it to her. Obviously, I was exhausted, I caused a collapse, I was bruised. I never repeated it. Yes, I can be very foolish.

It’s easy to take for granted the simple things of life. Being able to get your own drink, go to the bathroom, fetch your coat, walk across a room, wash up, so many things you do without thinking. When they are gone, each one is a mountain you can just look at in wonder and be amazed you could ever do it.

Mary and I on a trip to Dawlish a few years ago

My Amazing Wheelchair

I am fortunate to live in a country and a time with the NHS. It is a brilliant institution. Any failings are more to do with political decisions on funding. I can’t fault the wonderful caring staff.

My wheelchair (shown in the photo) a Quickie Salsa M2, is supplied by the NHS, it took a long time to get, but it is excellent. It fully supports me and enables me to recline.

Quickie Salsa M2
Mechanism under the chair

Let me describe its brilliant functions:

My wheelchair has two electric reclining functions, operable via the front or rear (attendant) controller. The backrest can tilt and the whole chair can tip. When both are at their maximum the chair is as seen in the photo, it is almost flat. Due to clever design it is in no danger of tipping over and the speed automatically drops to a very slow crawl.

The legs are also electric they can raise separately or together and go straight up. The photo shows them up.

Another great feature on this chair are the raising arms. They flip up out of the way. This means that in a situation without a hoist, the wheelchair can be lined up to a bed, profiled to match, a banana board (plastic board used to transfer people) used to transfer me with assistance from others. Or the arms can just be moved away to get closer to a table.

The arms also have extra wide indented rubber tops so that my arms can sit in them. This is to help them stay in place if I have a collapse in the chair.

Note tiny gap next to door, between chair and bed wheelchair has accessed

The seat is high backed and has a wrap around back for support. The seat cushion is a battery powered ripple cushion that I added with money from donations. The NHS will only supply mains powered ripple cushions for wheelchairs or ordinary pressure cushions.

Here you can see the Alerta ripple cushion & the padded cushions Mary added to headrest

The main seat belt is a car type lap belt, then it has additional shoulder straps to keep me in place in a collapse. I have added a neck brace because my neck also loses function and the neck brace holds my head securely against the head rest. The combination of seating and straps hold me securely even on a bumpy van journey, apart from my arms. Mary has recently made arm restraints for these.

The NHS no longer provide lighting for wheelchairs if you live in a town. Even though we live down a dark alley. So we have added bicycle lights, an led strip light (also for fun, this one) and strips of reflective tape. Best to be seen at night.

The six wheels on this wheelchair keep it secure even over rough ground. At worst the front two leap up, four always stay firmly on the ground. The articulating suspension and springs are not perfect (its still bumpy) but they are an improvement on my previous wheelchair. I notice the biggest improvement on uneven ground. Where before, I would have skidded left or right or just lost all traction, the Quickie Salsa M2 seems to cope and keep going. I have managed to get through some pretty tough ground conditions, gravel, sand, mud, leaves, very uneven ground and potholes in the path.

You will see on the photo I have added side bags for my bits, a drink holder (hidden the other side) and a rear bag (hidden behind) that holds my waterproofs. Waterproofs are the one thing I have struggled to get for this wheelchair. I cannot find one that fits such a big chair from head to foot. So I have a separate head and leg covering.

Waterproof covering, in two pieces.

Mary has also made me removable cushions for the arm rests and head rest.

All in all I am really pleased to have such an incredible chair.

(Also see my blogs “Climb every mountain.” and “Keep on rolling“)

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I can go places I previously couldn’t

You look so well

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

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

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

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

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

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

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The cot sides

I didn’t just wake up one day and find myself in a hospital bed with cot sides and carers. It was a gradual process of decline over years. My muscles used to lose function without much warning, from my viewpoint without any. It was when I could still walk and drive that it first happened. I was driving on a motorway! I need to tell that story separately. That incident stopped me driving. Then months later a collapse happened while I was walking, I just crumpled like a rag doll onto the concrete path, then another time down behind a toilet and even into the bath! That stopped me having baths. Gradually my ability to walk and safety factors meant I was limited by the doctor and nurse first to a reclining chair then to a hospital bed.

Then came the day that led to bed sides, they call them cot sides. By this time, I had daily carers as my general ability to function had declined. Not all of them were helpful. At this point I only had a diagnosis of ME, which is really a non-diagnosis. It means they have ruled other things out. Lots of people either have that diagnosis or know people with it. As I now know ME is the least of my problems, it’s no surprise I never found anyone with the same symptoms.

One day a particularly unhelpful carer came, whose husband had a diagnosis of ME, he’d actually been exposed to organophosphates, which gave him the ME type symptoms. She decided I needed encouraging to get well, a kick up the pants, as that had worked for him. So, she sat my bed up to nearly 90 degrees, flung a wet flannel on my chest said, “you start washing your face and I’ll get a bowl of water for the rest of you.” I objected, warning her my muscles were very weak and I had sudden collapses. If she’d read my care plan, she would have known all of that.

By the time she returned I had collapsed, I was head first out of bed all my weight on my head pressing on the edge of a wooden tray between my bed and the wall. Only the narrow gap between my bed and the wall stopped me falling further. I was in agony and calling for help. But the collapses immobilise my main muscles, I am effectively paralysed in that condition. No amount of pain and discomfort, danger or fear can overcome it, time is the only thing that changes it. They can last from 10 to 30 minutes.

The carer went into panic mode, she leapt onto the bed, no mean feat for a large lady. Still totally unaware of my limitations she hauled me up a little and I slumped back harder onto the tray edge. Realising I was too heavy for her to manage on her own, she rushed out to a neighbouring house where her supervisor was giving care to a neighbour. Returning after what felt like an eternity to me, I now had two large ladies leap onto my bed and heave me up. Feeling they had succeeded they let go, I slumped onto one lady’s large bosom. They lifted me again, I slumped onto the other ladys’ bosom. I don’t think they were quick learners because this happened a few times before they understood I was like a rag doll and they lay me down. They were soft pillows, but my head was at some awkward angles.

I have often wished a camera was filming the whole event, it must have looked hilarious. Their faces must have been a picture. I had no idea what was happening until I felt my head cushioned on each soft breast. Even though it’s funny in hind sight, it was not funny at the time. Being like a rag doll, my muscles and joints were easily pulled in ways they were not meant to go. I was so relieved when they eventually laid me down flat.

Two things came of that day. I refused to have that carer back and cot sides were fitted to my bed. I still have those even though I have learnt to be cautious and my current carers know me well. Sometimes safety features come after we have been hurt. This carer was an exception. I have only had one other who so completely ignored my care plan and caused me pain and difficulty in all the many years I have received care. Carers are mainly really careful and helpful.

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Cot sides on my bed

An odd request from Amazon

Wouldn’t it be great to have a shower again? That was the simple thought which started it all off. I can’t have a shower or bath at home, so my carers must give me a bed bath every day. The idea of a shower kept growing on me, water running down my hair, the little I have left. The luxury of water flowing over my body. The more I thought about it the more the desire to make it happen grew.

We had booked our first respite of 2019 in a convalescent hotel in Dawlish. We’ve been there before, and it works well. They have two rooms that have profiling beds, wet rooms and are on the ground floor. All rooms have call bells and a nurse/manager is on 24/7 call. Mary must do all my personal care, which isn’t a break for her, but all food is made, which is.

I decided that a wheeled shower chair with lifting arms could be used to enable me to have the occasional shower, while we were there. So, I ordered a folding one from Amazon to be delivered there. The plan being to bring it back on the train. The assistance people on the trains are brilliant.

Day one, we arrived, and the shower chair was waiting. I was desperate to try it out, so that evening I did. I need to explain something about those of us who are limited in mobility. We are at high risk of pressure sores. Our skin is more delicate than someone who is mobile. Then you need to know that this particular shower chair was badly designed. It had a hard-plastic seat and four holes in a triangle shape about 10” wide by 2” deep. The holes were a little bigger than a 5p piece.

I had a lovely shower, not thinking anything of this hard seat. Not knowing the information which the manufacturer later told me that I should have put a soft cover on it. Would be helpful to include instructions if that is a necessary thing to do. Information is so helpful, especially if given when needed rather than after.

Lying on the bed after the shower, being dried by Mary, she gave a cry of surprise. Two red circles had appeared on my bottom, exactly were the outer two holes had been. The inner two lined up with that part of my bottom which didn’t make contact with the seat. My skin had been sucked into the holes and bruised by the experience. Mary called the nurse and she recommended I stay off my bottom. The upshot being the next three days I spent most of the day in bed on my side.

I contacted Amazon and they wanted photos of the chair and my bottom showing the injury, an odd request but I sent them anyway. Two days later I was speaking to a very nice lady who had studied all the photos in detail. It was an absurd situation, here I was chatting to a complete stranger, not even a medic, about my bottom.

She said, “I studied the photos and I see exactly what you mean.”

What did she mean? The mind boggled. In what other situation would that happen? I don’t know how I kept a straight face. I am just hoping I don’t see my bottom on a lightening deal or illustrating a review for this shower chair.

This is a photo of the seat of the shower chair showing the four small holes. They are a little bigger than a 5p piece.

Care, a unique relationship

Care is a very strange thing. It’s a relationship that is very intimate. Only in medicine do we have equally intimate, yet non sexual things done to us by other people. More intimate in many ways than a husband and wife and yet obviously less so because it’s a one-sided intimacy. Think about it, who is the last person who wiped your bottom? Who is the last person who washed you or got you dressed? Your parents presumably. It’s a relationship where strong bonds of friendship can sometimes form and yet there is a professional distance. There is seriousness and fun, work and play, sadness and joy. In a way many of life’s experiences are lived out through the relationship between a carer and client.

Every situation will be different, not every client is fully aware, alert, able to process where they are or what is happening. Not all clients receive care graciously, some will be difficult and awkward. Not every carer will connect with every client. But, when it works, when everything comes together, when people connect well. Then care can go beyond being just a job.

For me I have had many carers where things have come together just right. I started out by finding being cared for the most embarrassing, awkward and difficult of experiences. Over time I have learnt to accept it and find the laughter in the embarrassment, the fun in the awkwardness and the joy in the difficulties. Not taking myself too seriously has been a great way forward. Most of us struggle with pride and a sense of self-importance that makes it hard to accept help and embarrassing to be cared for.

The one word of advice I would offer to anyone facing being newly cared for is to have a laugh. Don’t be heavy, try and look at the silly side of it all and don’t take yourself too seriously. Yes, it is embarrassing and awkward to think about. But, carers are so professional and well trained that when you get to the situation where they are washing, dressing or helping you on the toilet, you will find it is far less embarrassing than you ever imagined.

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Shall we get in the bath?

“OK, shall we get in the bath now.” This was said by one of the two young ladies who were preparing my bath at a nursing home.

“Is there room for all three of us?” I asked innocently.

I had noticed over the previous few days that “we” was used by carers a lot. I guess it was to be encouraging or they just hadn’t thought of it. But once I zoned in on it I realised that carers were asking to join me in the bath, in the shower and even in bed “shall we get into bed now?”. They were wanting to eat my food, wear my clothes, get into the sling before me and even sit in my wheelchair! “Shall we get into the wheelchair?” I suggested they might be heavy on my knee.

When I got home from the nursing home, I was so focused on it I noticed my carers at home similarly wanted to eat my lunch “shall we eat now?” and wear my clothes “what shall we wear?”. Of course, once I pointed it out, they started to catch themselves saying it. 

The one that inspired the name of my site is, “shall we get dressed now?” This is probably the most common and one I have to bite my tongue not to respond to the most. Having pointed it out, one of my regular carers has become so aware of this that she will occasionally joke “We! Are going to get dressed now.” Waiting for my eyebrows to raise and then we both have a good laugh.

Then again it can be two way. I’ve become much more aware of saying to Mary on her return, “We’ve tidied up.” Taking credit for the carers work. 

Language is such a funny thing; we say things without meaning to and of course it’s so easy to distort meaning. But it’s also important to be aware of what we are saying and why.

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This is the type of Bath I am talking about

Hello world!

“Hello world!” I was sitting naked on a commode with a carer either side of me. The bathroom was so tiny, and the ladies were not small, so they left the door open, as was the hall door into what was acting as my bedroom but was actually our front room. Our bungalow had been cleverly designed to line up the bathroom door, hall door, front hall door and front outer door. A brilliantly designed tunnel effect from bathroom to outside. Mary, my wife opened the front door and inner hall door as she came in, they were close to each other.

Picture the scene, a clear line of view from bathroom to outside street. If anyone had been passing, which fortunately they weren’t, I could have waved. I could probably have had a chat. Hence my exclamation “Hello world!” The two carers slowly looked at each other and me in shock. They were new and had not yet met my wife. Assuming she was a stranger they looked slightly confused at each other for a moment. Then they looked again at Mary. Eventually they covered my embarrassment just in time for Mary to introduce herself. By this time, I had requested Mary close at least one of the numerous doors leading to outside. Oh, the joys of being cared for. Oh, the joys of being unable to get up and do things yourself.

I used to joke that I had the best-known bottom in Somerset, because I saw so many carers. On that my posterior had the potential to become even better know.

This happened back in 2012 when I was still able to stand for a transfer and sit on a commode for washing, these days I must be washed lying down in bed and have to be hoisted from the bed to a chair or wheelchair. We have a high backed, reclining commode/shower chair, but no wet room that I can access. Our current situation saves a repeat of that embarrassing situation but has its own limitations.

My current lounge/bedroom has a patio door to our enclosed garden, that I always saw as private until recently. I never asked my carers to draw the curtains as our garden has high walls and a locked gate. Then a few days on the trot the gate was accidentally left unlocked and two different delivery men decided our back garden was the obvious way to deliver a parcel.

One of the occasions I was lying in bed having just been undressed awaiting a new lot of clothes, when a face appeared at the window trying to peer in and knocking on the glass. The other time I was just lying in bed watching TV when I saw a delivery guy wondering around our garden. You won’t be surprised I now follow the advice of one of my carers who had always suggested I have the curtains closed. Having told her there was no need, I now sheepishly admitted she was right.

While on the topic of embarrassment. I’ve been in one nursing home where they were taking me down the corridor to a shower in a wheely commode. Think about what a commode has on its seat, a big hole where your bottom is. So your bottom hangs through it. I was naked ready for a shower, but covered on top for decency. As we wheeled along the corridor I thought ‘This is very draughty around my rear.’ Once I realised why, I was quite glad we didn’t pass crowds of people.

I want to finish by saying carers try very hard to respect my dignity and privacy. They do cover me up and make sure doors are shut. I’ve had carers for years and there are bound to be the odd slip ups. I only mentioned these incidents because they are funny, and I can look back on them and laugh.

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Our bungalow (2014) in Creech showing ramp to front door. Window on left had my bed behind it. Bathroom in line with front door.
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