Whose been eating in my bed?

There is a mystery I have yet to solve. Where do the crumbs come from in my bed? Some people try to suggest I am to blame, I know that isn’t true.

Cornflakes, crisps, bits of rice, crumbs of bread, even a piece of cheese, have all found there way into my bed. I can only assume that when I’m not looking, an army of little munchkins picnic on my bed in a very messy fashion. You may well assume it’s me, eating in my bed and dropping crumbs left and right. Funnily enough that is exactly what my carers say. You could blow me down with a feather at the suggestion. Of course it’s not me.

I will give you an example. The other day one of my carers was giving me a therapeutic massage and she stopped while down no my back, saying, “there’s a crisp on your back.”

“I wonder how that got there.” I said.

You won’t guess in a million years her answer. She suggested I’d been eating crisps in bed. As if the mere fact of eating crisps in bed, which of course I do, would cause them to drop on my bedding. What a foolish notion.

There have been similar suggestions for all the other crumbs. I am certain that none of the food I eat in bed goes anywhere other than my mouth. I never see any of it fall, and if I don’t see it, then it can’t have happened. Isn’t that a general principle of life? I’m sure I’ve heard people use that excuse before. Besides the crumbs I see in my bed look nothing like the food I eat in my bed. They are tiny crumbs, the food I eat is much bigger.

Forgive my little bit of silliness, I find nonsense a good way to combat all the stresses of the day.

Me not dropping any crumbs

Planes, trains and automobiles

I discovered the other day that it’s physically possible to fly in my condition. I don’t yet know if it’s practical, but it’s something airlines can do. Apparently when a wheelchair user can’t transfer from their chair by standing or walking there are two options, depending on the airport. 1/ Some airports have hoists that take you from outside the plane to your seat. 2/ Some airports use a few people to physically lift you from your wheelchair to your seat. No extra cakes before your flight then eh? Of course, in my case that doesn’t answer the problems of what happens if I am in a collapse at the point of transfer. I can’t be hoisted when I’m like a rag doll. Or whether I could sit in an airline seat, would it be supportive enough when tilted? I could certainly take a pressure cushion and my neck brace. First class would work, but prices are crazy. I won’t give you the nitty gritty, but as I can’t access a toilet on the flight, I do have a way to cover that, external catheters etc. Planes then, while very tricky might be possible. I have never tried it, but they obviously aim to make themselves accessible for people in my situation. Interesting as I had assumed the only way to fly would be on a stretcher by purchasing several seats and therefore well beyond my means.

I have tried the train a few times. It’s an interesting experience. With train travel, if you want the easiest trip you need to book assistance at least 24 hours ahead. Then you are told to arrive 20 minutes before your train. On a cold day, if there is no waiting room that is a nuisance. The reason is so that the station staff can get ramps ready and plan where you need to be. I have only travelled between Taunton and Dawlish, with the occasional enforced stop at Exeter St David’s due to bad weather. Taunton is a great station, large lifts and plenty of helpful staff. Exeter St David’s is similar. Dawlish is a 2-platform station, the staff are great but not always there, so you can only travel at certain times if travelling to Dawlish. Taunton to Dawlish gets you in on the seaward side platform, the only way off that platform via wheelchair is across the railway line, via locked gates. You must be escorted by railway staff. It’s a busy line and we have had to wait 10 minutes to cross at times. As Dawlish is right next to the sea, it’s vulnerable to high waves. When high waves crash over the line they don’t allow wheelchair users to cross the line. Something about not wanting them to surf their way across. Therefore, the rail company lays on a free taxi from Exeter for any wheelchair users. When the line was damaged in the storm and a replacement bus service ran from Taunton, they laid on a taxi from Taunton for me.

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Dawlish train station in distance by the sea

One time we were on our way to respite at the RCH convalescence hotel in Dawlish and had a train booked. A storm hit before we travelled and we got a phone call from GWR to say we would be taken off the train at Exeter and taken by taxi to Dawlish. We arrived at Exeter and waited to be taken off the train. No one came, but the train stayed in the station. Eventually a rather hassled looking couple of train assistants arrived. Apparently the person who booked our assistance on the phone had put the wrong carriage on the station system. Then just to add to the confusion, they found in that carriage an elderly lady with mobility issues who was going to Dawlish. So when they had asked about who was needing assistance she was taken to be the one in need. They got her off the train into the cold and wet. It took a few minutes before someone realised it was meant to be a wheelchair user they were assisting. They got her back on and came in search of me. The train was held up about 15 minutes.

Our problems were not over there. Outside the station we were taken to our taxi waiting in the pouring rain and icy cold. It was too small for my wheelchair even though I had told the guy on the phone I needed a big taxi. The driver tried to load my chair 3 times all while leaving our luggage in the rain. I have to hand it to GWR, they stayed with us and when the taxi failed they took us to a warm place, ordered a bigger taxi and made sure it took us all the way to our hotel, no extra cost. They rescued a difficult situation, even though they had caused it.

The lady who had been removed from the train was staying at our hotel and unfortunately caught a cold later in the week. Many people on the train were staying in our hotel and had wondered about the delay.

Trains themselves are improving. In the past they used to lay a metal ramp onto the step of the carriage for the wheelchair to travel up and down. I guess some must have fallen off, which is no surprise to me. As I never felt safe on those old ramps. I used to watch them lay them on the step and make sure they were well in place before I moved. The new trains have a brand new and rather slow system. The automatic doors are locked, a plate is flipped out and the ramp clips into two holes. Therefore, it cannot slip. I watch the process equally carefully to make sure they engage the toggles in the holes. The ramps themselves are not very wide, neither are the doors. But the new trains are massively better than the old. On the older trains I could not always get into the wheelchair space, I sometimes had to stay in the corridor. The alleyways were also very tight to turn in. On the new trains everywhere is wider and easier to access. On some of them I have actually been able to access the toilet.

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On a train in First Class (Upgraded as second class off platform)

One extra bit of fun with trains is platform length. For some reason they always put disabled carriages at the end, normally one in first class at one end and one in second at the other. Dawlish station can take a 9-carriage train on the seaward side and an 8-carriage train on the other. So, when we are travelling home, and the train is 9 carriage it depends which end has first or second class disabled as to which class we are put into by the booking service. If they get it wrong, or the dispatch change it, we get moved. We have often travelled first class with a second-class ticket. I guess there have to be some pleasant aspects of disability. I had never travelled first class before, but I do enjoy it now. The snacks, drinks and sandwiches all being free is a great bonus.

Motor vehicles have to be specially adapted for my wheelchair. Vans need a lift or ramps, plus clamping points and cars or taxis need a ramp and anchor points. My wheelchair is so long and high that not every taxi can fit it. It’s a bit of an art being anchored into a taxi. They attach long seat belts to my front anchor points, then I drive the wheelchair in as far as I can just before my footplates make contact with the seats in front of me. To make these lock I should really go back a bit, but my chair is to big for that, so they stay a little loose. Which means the front of my chair can lift about 2-3” on a big bump. It feels a bit hairy. The driver then locks the rear two anchor points of my chair with ratchet clamps. This prevents it moving at the back. If the vehicle crashed, I would not be able to move forward. He also presses a switch to lock the two front seat belt that have retracted as I drove in. I have a car grade seat belt in my wheelchair, but they also add an extra one.

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My view in a taxi

Vans vary a lot in how they latch my wheelchair in. In some I have room to recline fully before being latched in. We discovered that the front latching points are on the moving part of the tilting mechanism, so I need to tilt it before they connect the straps or I pull them out of the floor. Vans are very bouncy and a problem I find is being in a collapse while in a van my arms can hang down very uncomfortably. Mary therefore sits next to my wheelchair so that she can hold my arms if necessary. If I set everything up right ahead of time, tighten my shoulder straps, remove my head pillows and have my neck brace on, them my neck stays on the head rest. But once I had my shoulder straps too loose and my head bounced off the neck rest and was hanging by the side of the neck rest. Mary couldn’t reach and we were on a dual carriageway. The driver pulled off at the next exit to rescue me. I still had a very sore neck for a few days. I have mentioned before that exiting a van or minibus involves a big trust exercise on my part. I am not able to see backward, so whether I drive the wheelchair under guidance or whether it is driven I have to trust the person in control. Remember the ramp I reverse down is only a few inches wider than my wheelchair and the ridges at its side are not sufficient to prevent my wheelchair driving over it. I much prefer vans with lifts.

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View from my wheelchair in the Slinky accessible transport bus

One thing makes me laugh every time I am loaded in a minibus. The rules of most minibuses say the driver or an assistant has to guide or push the chair up the ramp and back down. This rule ignores power wheelchairs. Modern ones do not have a motor disengage, or at least not fully. Even if they did, my chair with me in it weighs 250kg, that’s a quarter of a metric tonne. Good luck pushing that up a ramp unaided, even better luck preventing it falling. The most ridiculous sight was one respite centre that had a young girl of 17 who was instructed to stand behind the chair to stop it falling. I pointed out, if it fell she would just be crushed. I don’t understand the logic of some places.

Buses are a complete non starter for me. I tried one out once. But the space allowed is too small for my type of wheelchair and the turning space too tight. It has put me off trying again. Coach companies say they cannot accommodate my wheelchair.

I am always glad train companies are so helpful and that we can travel in taxis and accessible vans.

Apparently there are hoists available that can be fitted to ordinary cars, but they cost £3000 and are fitted to one car at a time. My wheelchair would be far to big and heavy to transport even if my friends or family had such a hoist, which they don’t.

Travel is a much bigger adventure when your mobility is limited.

Waiting at a train station

Keep on rolling

Most people celebrate their 25th wedding anniversary by having a big family party or going on a cruise. In 2007 we celebrated ours by buying my first wheelchair. OK, so we did have a small family get together too and we went away to a hotel. Oh yes and we got our first Motability car, not sure where that comes on the scale of treats. Perhaps it’s just an essential.

Back to wheelchairs, Mary had been trying to talk me into getting a wheelchair for some time. She knew it would really help me and enable me to get out and about as I was able to walk less and less. I was too focussed on what people would think of me in a wheelchair, how I would look. I hated the idea that people would stare at me. By 2007 I could about manage to walk 25-50 yards on a good day before I was in extreme discomfort and really exhausted. Which meant I didn’t really get to leave the house much. Mary came up with a great idea that eventually convinced me to try a wheelchair. She said think of it as, “go further wheels”. I decided to try the idea and when we were given money for our anniversary, I bought a cheap, attendant fold up, push wheelchair from Amazon. It was made of steel, so it was heavy, and it only had hand brakes that operated on the tyres. No brakes to slow it while Mary pushed it.

This is the only photo I can find of that first wheelchair

This first wheelchair lasted about two weeks before we had to send it back as unsuitable. It was just too heavy for Mary to push. When I was in it Mary couldn’t even see over me. Mary is petite. Also, when pushing me down a slope it ran away due to its lack of brakes.

One day I was seeing the GP for a regular visit and explaining all this when she referred me to the NHS wheelchair centre. Within a very short time I had my first NHS push wheelchair. Because of Mary’s stature, it was custom built. They made it of aluminium, so it was very lightweight and also low slung, and it had drum brakes.

My 1st NHS wheelchair

Let me describe the absolute joy of our first trips out in that wheelchair. First, we had the Motability car that had space for the wheelchair in the back and straps to hold it. We were living in Hartlepool at the time, so we went to the seaside most days. On a typical trip we would arrive in brilliant sunshine and then get out into the biting North Easterly wind. HartlepooI had that way of fooling you with its sunshine. I had a good selection of warm leggings and coats, hats and gloves. So wrapped up like a mountaineer, Mary would push me along the road towards the promenade. Hartlepool has miles of promenade, well-kept and wide. If it was down South it would be a very well used seaside resort, as it is in the colder North East, the promenade is not really busy, even in summer. The one problem with the sea front were the slopes down, or rather back up from the lower promenades. That’s when the amazing friendliness of people so often shone through. They would either help Mary push me up or push me up for her.

Most days the seas were dramatic and invigorating, Hartlepool is a beautiful place as is the whole North East coast. I so enjoyed our trips along the coast. I used to make up stories about the people we saw coming the other way. These trips out were the highlight of both our days. At some point I will post those stories in a fiction section on my site. Mary and I miss that first wheelchair, it was light, easy to use, and we were physically close to each other in it. In my later power wheelchairs, we are further apart.

Hartlepool seafront

You may have seen Little Britain, there is a character in it who uses a wheelchair. Whenever no one is looking he runs around and demonstrates that he has no problems walking. I think there is a widespread belief in many people that some wheelchair users are like that. Comedies reinforce that idea and I think I know where the idea originates. With illness, if they affect our legs at all, we often lose the use of our legs gradually, whereas accidents tend to be acute and leave people suddenly unable to walk. This is true of many neurological conditions, MS, Muscular Dystrophy, etc in fact some conditions have an up and down element to them. Good days and bad days. So, the fact someone is in a wheelchair doesn’t necessarily mean they can’t walk at all, perhaps they can only walk a few steps, perhaps they can stand. Maybe some days they can walk further than others. Unless you have experienced this, you may find it hard to grasp.

My legs first started to play up in the early 1990’s, sometimes working and sometimes not. In 2012 I was limited to a hospital type bed and a wheelchair full time. There have been many ups and downs over the years. Between May 3rd 2015 and Jan 18th 2018 there was a medically unexplainable miracle. I will post about that separately as it is a big subject.

My second NHS wheelchair was a push high backed reclining wheelchair. I was never really able to use it because it was too heavy for Mary to push and too heavy for her to operate the recline and tilt. After a few weeks they gave us a power pack, but it ground on our step and we had to ask friends from Church to get me outside. For a whole year I was unable to get out of the house except with help. Then finally the NHS gave me a powered wheelchair. It was powered in movement and recline and tilt. I also got a grant to add power to the leg lifters.

Stuck in doorway, NHS non power wheelchair in doorway at Creech
First NHS power wheelchair outside our old house at Creech

My current wheelchair, which I got in August 2018 is the best NHS wheelchair I have ever had. Everything was powered right from when I was given it. It has 6 wheels with a central pair of drive wheels, so it rotates easily in confined spaces. The suspension is brilliant, it articulates, so it copes with uneven ground well. That may sound like a gimmick but imagine going down an uneven road and you are in a wheelchair that doesn’t give at all. The whole thing just lurches left and right, you feel like it will tip over. With articulation the uneven ground is smoothed out so that you are not thrown around as much. There is a limit to how much unevenness it will smooth out and you still must be careful in a wheelchair not to take it on extreme bumps.

My current wheelchair at Wellington park
My new chair on a train

What’s it like to be in a wheelchair? You discover that roads are much bumpier than you realised before. You also notice all those little steps, 1- or 2-inch steps than seem non existent when you were walking but feel like ski jumps when you are in a wheelchair. As for a 2- or 3-inch step, a wheelchair positively leaps in the air and comes crashing down over some of those. In the case of my current power wheelchair it has about a 2-inch clearance under the battery shroud, so it also grounds. Most roads have lowered pavements these days, but not all lowered pavements are equal, some are quite a bump, and some have a drainage channel running in front. Then you get those people who think lowered pavements are an OK place to park. Leaving us to travel a long way looking for the next one.

Mary must operate my wheelchair when we are out on the public streets due to the collapses counting as fits or seizures. She is excellent at driving it. There is a rear control on my chair, but Mary can’t see over the chair when using it, so she uses the front control. That makes us wide. Pavements in Wellington are not as wide as us, especially where shops put out signs, chairs, bins etc. Then there are those funny moments when people are walking towards us. They see us two abreast, my hands on my lap and I am mainly looking around, not ahead. Yet they still seem to assume I am operating the wheelchair and walk straight at Mary expecting her to step left and let them pass between my chair and her. Which, of course, she is forced to do. We are then repeatedly enforced to stop because of this.

Slopes are really fun. The front two wheels of my six wheel chair often come up into the air when I first go up a sharp slope. It puts Mary’s heart in her mouth and makes me very glad if I am wearing brown trousers. Slopes generally can be terrifying. The best trust game I know is when I or someone else operate my wheelchair backwards down a ramp on the accessible transport. I am being told I am lined up and going very slowly. But I must trust the people telling me or operating it. I always prefer it if Mary is there to confirm instructions or if she is operating it, I totally trust her. One or two inches either way and I would be off the ramp and crashed in a heap.

The other fun thing about a power wheelchair is that it stops when you take your hand off the controller. Well, it stops in about a foot or so at top speed. Very exciting if you are heading towards a road at the time. Controlling a power wheelchair generally is an experience that really should be for the youth of today as they are joystick controlled. Our son’s and daughter operate it like experts. Mary and I took a while to learn. I don’t know how older people manage. The joystick is so sensitive and frisky that we had ours adjusted to be less sensitive, but it still involves a lot of skill to get it round our house. Anyone would think the Victorians hadn’t thought people would use a power wheelchair in the house in the future, short sighted eh? As for British roads in the average town, they are just not wheelchair friendly at all.

Wheelchairs are life changing, essential bits of equipment. Embarrassing to get used to being in. Tricky to use in many settings, but I could not do without it. It enables me to get out of my house into the world.

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Watching music at the park last summer, thanks to having a wheelchair

Fun and games

I realise my recent blog posts have been a bit serious. Actually, I’ve a lot of fun with my carers. I thought I’d share a few stories.

At Christmas one of my carers did some decorating for me. She attached a knitted Santa to my hoist bar, that my daughter made as a child. A hoist bar is the metal bar that hangs beneath the electric hoist mechanism on the track attached to my ceiling. Santa was attached in such a way that he was staring straight down at me. He looked like he was strapped to a railway line upside down.

I have two slings I use when hoisted. One is a day sling for transfer into my wheelchair or reclining front room chair, as its name suggests, you wear it all day. The other is a toileting sling to transfer onto the commode. When using this second sling Santa has a rather shocked look on his face, well who wouldn’t. I was so glad when the decorations were taken down, mind you Santa looked relieved too.

In order to make my wheelchair seen better at night and so I can see in the dark, I have bicycle lights on it and reflective tape. At Christmas I was given some waterproof LED strip lights. I decided they would be a great extra safety feature. I was not thinking “let’s pimp my ride.” Nor did the idea, “this will make me look cool.” Cross my mind for a moment. So, I asked one of my younger carers to fit them, as I knew she would understand the need for ‘safety’ and ‘visibility’. I didn’t ask her because she would understand the need to make my wheelchair look good, because obviously that wasn’t on my mind anyway. Then at Church the next Sunday evening I demonstrated just how safe these lights made my wheelchair by switching them on and rotating my wheelchair. I have demonstrated the safety feature several times since, to lots of people. Kids love them.

I enjoy a bag of chips, well who doesn’t. Every now and then Mary goes to visit her Dad and I have a carer for a full day. On these days I look for an excuse to go out to the park via the fish and chip shop. Funnily enough they don’t object too much to the idea. We always enjoy sitting in the park eating chips watching the world go by. Sometimes being cared for is very hard work.

I tend to have a good laugh with my carers. It’s important that the carers I choose have a good sense of humour and all of them do. Sometimes we laugh so much I am nearly in tears. Laughter is a great medicine; it is also good way to deal with embarrassment. One of my carers noted that there is a warning sign that I am about to go into a collapse it’s when I become quiet and stop joking around. I start to stare into space and become unresponsive. When it first happened for her, she thought she had offended me.

My bed is supplied by the district nurse and it can rise up and down as well as profile. That means the head and legs can separately raise in various ways. The reason it’s height adjustable is so my carers can reach me without hurting their backs. Whenever my bed is adjusted in height or I am hoisted, I like to sing an appropriate song. “You raise me up…” Or “up, up and away…” You get the idea. I am sure hearing the exact same song every time is a delight to my carers. I can see it in their faces when they look bored. Or when they say, “not again!”

My riser recliner chair has a ripple cushion as does my bed. The cushion on my chair consists of fingers of inflatable pipes. So, any unsuspecting person sitting on my chair gets a surprise every few minutes when the ripple effect kicks in. It’s as if a hand massages your bottom. My bed is not quite so dramatic in its ripple effect, although when someone has perched on the edge they have been surprised to feel the rubber tubes ripple.

While thinking of riser recliner chairs reminds me of the first time, I had one years ago. It was before I had a hospital type bed and when I could still stand for short times on good days. I was sitting in the chair and I wanted to get up, but my legs wouldn’t let me, they were too weak. This was one of those days my legs were not working. But I thought to myself, “I’m in a riser chair, why not use the chair to help me stand.” I can be such a genius. I powered the chair upright and as it rose up, I slipped down the chair and into a heap on the floor, where Mary found me a few moments later. Had I used my brain I would have realised that if my legs were too weak to lift me out of the chair, they were too weak to hold me up. Instead I had to wait in a heap on the floor for the Deane helpline people to arrive and assist me back onto the seat. I’ve had a lot of instances over the years where my desire to try and stand has overcome my common sense. I think sometimes it just feels silly that my legs won’t work, and so I think of course they will, then I try them and find they don’t.

I have a lot of smart technology to assist me. My main one is Alexa; it connects most of my other smart devices together, so I can use my voice to control them. One of my main ones is a doorbell with camera and intercom. It’s my favourite way to surprise, I mean greet, someone at the door if I get to use it before Mary or my carer answers the door. When someone rings the doorbell, I try to get to the intercom first so that a disembodied voice can say “Hello!” It’s always fun watching the reaction on the camera.

One day the postman was standing waiting with a parcel having rung on the bell. Mary was upstairs, so the front door was unlocked, I said “Hello, I can’t get to the door as I’m disabled, can you please just put the parcel inside the door.” He nearly jumped a foot in the air and was looking around for where the voice came from. The problem is, it only works on someone once.

My time with the carers is a time I look forward to. We have fun, it’s a laugh and they’re a support and help. We have interesting conversations about all sorts of things, and we become friends.

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The LED lights around the base of my wheelchair
The obvious safety benefits of my new LED lights

Oops, I didn’t mean to say that

Have you ever said something and then realised it could be misunderstood? I find that happens all the time with my carers. Here are a few classics.

One day one of my carers had come in from a very cold outside. I was warmly wrapped up under my duvet. She got the water ready to give me a bed bath and pulled back the duvet. When she touched my skin she exclaimed “Wow! You’re really hot!” Then realising that could be misconstrued she corrected “I mean your temperature, not your body.” Sometimes we just need to stop digging.

One time Mary was sorting out care for her elderly Dad and after finding out they were really organised she said “They’re on the game.” Meaning, of course, really on track, up to speed or on their game.

When I stayed at a nursing home once I was asked by a 17 year old carer how old I was. When I told her I was 57 she said I looked much younger than that. Still glowing with the joy of being told I looked youthful by a young lady I was unprepared for the next carer who came in. She was in her early 20’s and asked me the same question. I gave the same reply and awaited the response in eager expectation. “Oh, Umm, yeah, I guess so.” She mumbled looking at me quizzically. Talk about highs and lows.

Another time I had received a minor pressure mark from a sling used to transfer me in a nursing home. It was inside my thigh quite high up. The sling used is called a toileting sling and has an obvious use and less obvious ones, transfer to baths and showers. I am convinced they were designed by and for women because the straps that go through your legs come excruciatingly close to a part of the male anatomy that doesn’t want crushing. They also cut into your legs. I now have my own toileting sling that is much better padded, but this happened a few years ago. Hence the minor injury. A few days had gone by and two carers were checking to see if things were better. In a nursing home you always get two carers at a time. You can read a bit about that in my blog Body mapping.

I asked how things were and one of the carers said “Your groins excellent!” She said it with a surprising degree of enthusiasm. That’s one comment I was happy to take out of context, in fact I quoted it at the breakfast table, the dinner table, at tea…. Oh yes and I have posted it here.

There is one last mis-quote which I have touched on in my blog Not so public convenience. I was at a nursing home and had suffered an injury from using a urine bottle in my wheelchair. One of the carers asked if I had ever used a Conveen. I said I hadn’t, so she suggested I try one that they had. One of the nurses who was on duty and doing the rounds was drawn into the conversation. She said, “Oh no! He’s much too big for the Conveens we have.” One thing men like to do is boast about the size of their manhood. But, before I go any further I should point out, they only had the smallest size in stock and I am average. Conveens are primarily measured on width. Still I had a moment of feeling good about myself. I didn’t mention this at breakfast.

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.

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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