Me and my big mouth

I think you could say I am direct, blunt, in your face, a ‘say it as it is’ type of a guy. I tend to speak a bit too quickly and be a bit too blunt. I used to think I was just being honest and open, as I’ve got older, I realise it can cause problems and sound rude.

I remember when I was 16 in the 1970’s, that can’t be right, it makes me in my fifties now. Surely, I’m not that old. So, I had just started work and I was working in London in a photographic studio. Not as glamorous as it sounds, because I worked in the black and white processing lab attached to the studio. I printed up photos for professional photographers that were used in magazines and for displays. There was also a larger photo department with a De Vere Mk 10 enlarger, that printed huge black and white photos many feet wide and high. These were used in exhibitions and on one off billboards. These days such things are produced by large laser printers. In those days a small run of prints had to be done photographically as any other form of printing cost too much to set up for a small run.

I couldn’t find a photo of the De Vere Mk 10, so this is a later floor enlarger
to give you an idea of scale.

A large format negative

I am going to make an aside here, this was the 1970’s and I know a lot of people post things on Facebook about a ‘rose tinted’ lack of health and safety in the 1970’s. I just want to balance that a little, health and safety can be a good thing. I was a trainee along with a young girl also about 16 at this photographic studio. We were used as human packing to transport precious photos to exhibitions. Yes, you heard right. When the company had high value photos to take to an exhibition, evidently higher value than us. They put the two of us in the back of the van to hold the large photos and stop them getting damaged, no concern for us getting damaged. The van driver was not careful in his driving around London. He made no allowance for having two young people unsecured in the back. Both our hands were holding the photos and there were no seats, so we were leaning, half crouching against the side of the van. One day he slammed the brakes on so hard we were both thrown forward. The girl was hurt much more than I was, and she never returned to working at that company. I heard that she had whiplash and back injuries and couldn’t work at first. I really hope she recovered. I for one am glad that companies can’t get away with such things now.

Back to the photo studio. I coveted working in the large printing department. It had a photographic enlarger that was so large it was on a train track, used large negatives, and projected the image onto rolls of photo sensitive paper held on a long wall by magnets. The room was huge, a bit cold in winter, but a fun place to be for a young man. To develop the exposed paper, you rolled it through giant baths of processing chemicals. I would be sent down occasionally to help with this part if there was a big job on. Rolling the paper through developer, stop bath, fixing agent and finally a wash bath. The sheer scale was exciting. The guy who worked there was called Gary and one day he told me in confidence that he was leaving for a better job. But he also said:

“Don’t tell Alan.” That was our boss. “I will tell him at the right time, once it’s all finalised.”

What did I do in my excitement at hearing the job was becoming available? Next time I saw Alan, I totally forgot I was meant to keep it a secret and blurted out.

“Can I have Gary’s job when he leaves?”

I was not very popular with Gary after that. Don’t worry, he did get his new job. But you know the worst bit? I didn’t even get his job after he left. Apparently, I was too young and inexperienced, as if.

My big mouth seems to have a habit of speaking too quickly. A few years later I was working as a manager in a company. Yes, I had worked my way up over the years and it wasn’t a photographic company. I came back from lunch one day to find that my staff had received a visit from a lady in accounts who enjoyed trouble making. She had spent a while stirring up dissent. Not knowing that she had walked in behind me while one of my staff told me this. I then expressed my opinion of her trouble making nature. I don’t think I really held back on saying what a pain she could be. I did wonder why the chap I was speaking to was looking behind me rather than at me as I spoke. Lessons learnt, don’t be rude about people even if they cause you difficulties. Always look behind you. Think before you speak.

Those who have read my other blogs, will know I am a Christian. As a Christian I know it’s important to be loving towards everyone. As a human being, I fail in that all the time. God loves us not because we are perfect, but even though we are not. A church is just a place full of sinners who recognise the fact and are asking God’s help. OK, preach over, back to the blog.

I also seem to have a similar tendency to be blunt and say the wrong thing in what I write. I have noted that some things I say have been misconstrued. Odd really considering that my first blog was about misunderstandings in language. The way carers sometimes say things (“Shall we get dressed now?) Pot, kettle and black jump to mind. Of course, my carers do point out my inconsistency to me, with a raised eyebrow. Especially when I say,

“Shall we hoover the floor now?”

It seems somehow more inclusive saying it that way, it’s also good to say to Mary when she comes back:

“We washed up, we tidied the front room and we got me washed and dressed.”

I feel I really achieved a lot in my deputising. Supervision is an important role, even when it involves me doing absolutely nothing.

I am sure that when I am old and grey. When I am older and greyer. When I am extremely old and totally bald. Well, I am hopeful that at some point before I die, I will become better at thinking before I speak and being gentler in my words. My big mouth does seem to get me in trouble.

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Sink or swim

I am taking bets now, ready for Friday. Will I sink or swim?

If you have read my blogs then you know the difficulties of me getting a bath (Shall we get in the bath?). What you may not realise is that even in a bath I am only partially covered by water. The last time I was submerged in water was years ago, in a swimming pool. Now I have an opportunity to repeat that. Hopefully my head will stay above water, at least some of the time.

One of my carers was swimming at the Wellington Sports centre a few days ago, and noticed a hoist out of the corner of her eye. Maybe that’s an occupational hazard, spotting disability equipment when having a fun time with your boyfriend. She mentioned it to me, so Mary and I went to check it out. What a lovely greeting we received there from the staff, they were happy to welcome us and show us around. One of the duty managers showed us the disabled facilities. They have a lay down bed shower, I want to repeat that so I can soak a bit longer, they have a lay down shower…ahhh. I am looking forward to that bit, never mind the swimming pool, I just want to go for a shower. It consists of a height adjustable soft plastic bed with drain holes, next to a shower head, all within a disabled changing room. After being hoisted onto it, I lie on it and my carer or my wife gives me a shower. Luxury has never been so luxurious. Normally I would then have transferred to a poolside wheelchair to go through to the pool, but that has been stolen! I don’t understand some people. So I will need to use my big power wheelchair on Friday and I used it for the show around, it fits through the narrow gates. If you have never driven a large power wheelchair on a swimming pool side, you have not lived. I felt like I was breaking all the rules. Remember the don’t run, no splashing, no outdoor shoes, no petting rules? OK so I wasn’t petting, what is petting? I didn’t have any animals with me. But my wheels were from outside, is that like outside shoes? I felt so naughty breaking all the rules, I thought I should go fast just so the life guard could shout, “no running, I mean wheeling fast.”

On the poolside there is a hoist/chair to take me into the water. It looks like someone has taken the top of a bucket type school chair and stuck it on a metal contraption that swings around and goes up and down. The whole thing hooks on the side of the pool. One rather large problem though. No, not me, but how to transfer me into the chair. The only other person who uses this hoist chair can momentarily stand, with assistance from her carer in order to transfer. I can’t stand even with assistance, so I can’t transfer without a hoist. Just as well they have one, but it hasn’t been used in a long time. Hence the weeks delay before I can try out the pool. They have to get it charged, tested and receive training. My carer can use it, but the pool staff have to be trained too. Once this is all done I can access the pool.

The whole process on Friday will be. Arrive, get ready in disabled changing room, by using hoist onto the shower/changing bed, hoist back into wheelchair for trip to poolside. Hoist from wheelchair to the poolside chair, swing poolside chair round and lower into pool. Of course I don’t do any of this. At some point I will have put on a flotation vest. In the pool two people will be on hand in case I have a collapse they will have noodles, hopefully not egg ones. I can’t actually swim, so I will just enjoy floating till I get cool. Back out via poolside chair, to my wheelchair via hoist, wheelchair to changing room, hoist onto shower bed, shower…ahhh luxury, wash and dress, hoist to wheelchair, wait somewhere while carer gets ready and home, simple eh? With all the flotation devices and people I shouldn’t sink.

I am really looking forward to it.

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Strangers on a train

“I just wish I could be spontaneous.” This was said by another wheelchair user on the train to Dawlish on Thursday.

He had decided to travel by train, the first time in years. In common with all wheelchair users he was forced to plan ahead. You can’t just leap on a train in a wheelchair. Well, you can’t leap for a start. To begin with there are only two or maximum four wheelchair spaces. Two being the most common, four on the very long trains. When there are four, two are in first class.

Wheelchair spaces double or is it treble use anyway, as pushchair and large luggage areas. Why is there no other space on trains, or buses for that matter for pushchairs or large luggage? Are wheelchairs really just an afterthought? On a train at least you can usually book the wheelchair space. So, you have some right to the space. On a bus you rely on the goodwill of the other passengers to move. No law forces them to move. That’s right, there is no law enforceable about wheelchair spaces. A wheelchair user can be left stranded if an intransigent passenger refuses to move their stuff from a bus or train space. There needs to be a change in the law. Wheelchair users have no option to fold up their chair and sit themselves on their knee as a parent does with a child in a pushchair. Wheelchairs don’t fit down the aisles as luggage does. The wheelchair space is an essential, not a nicety.

One of the many wheelchair space layouts on a train

Back to our trip to Dawlish. Yesterday was the first time I have travelled with a second wheelchair alongside. We do tend to travel at less popular times and have only travelled Taunton to Dawlish. It was an odd experience, two wheelchairs in the two spaces make it tight for turning. I know its supposedly designed for two, but I have a large power wheelchair. Fortunately, the other guy had a smaller push wheelchair. The other wheelchair user was very chatty. What struck me most was his observation that I have heard before and noticed myself. People often think that the fact you are in a wheelchair gives them the right to offer advice. I suppose it’s a natural step on from the help folk offer, people are often very helpful. But advice is a mixed blessing, especially for this chap. He got the same unwanted advice repeatedly:

“why don’t you get a power wheelchair?”

He also got lots of offers to be pushed. As an independent young man, he particularly disliked that. He just wanted to be treated normally. Of course, that’s not going to happen. You can’t be treated normally in a wheelchair; our world is not setup for wheelchairs. Everywhere you go there are steps and narrow doorways. Doors that need holding open, tight corners, toilets that are too small or don’t have hoists etc. In a wheelchair you can’t do housework without a lot of adaptations and help. Kitchens need complete redesigns to be accessible, likewise bathrooms. I understand his desire, but reality is going to fight him. He has the muscular and physical strength to do the things I can’t and is still limited by his surroundings.

For myself I get lots of offers of help, Mary isn’t very tall, so folk can see she struggles operating my chair. I don’t mind that although I find it a surprise when people smile at me, men and women. I don’t mind the women. I guess it’s to be encouraging and positive. The last time this used to happened was many years ago when one of my sons was a baby and I was carrying him on my back. But I guess all the young ladies were smiling at him, not me. It’s just that his head was so close to mine… I wonder if there is a baby just behind my head in the wheelchair these days.

Our trip to Dawlish was to visit my 92-year-old father in law. He has made an amazing recovery after an emergency operation a few weeks ago and a time in ICU. He is an inspiration, how he has pulled round after that. We were out on the sea front walking and wheeling in the unexpected sunshine. What does BBC weather know anyway? On our way to Coryton Cove, it’s one of our favourite jaunts and a place Dad walks to most days. Now the weather has improved, the café at Coryton is open, so we stopped there for a coffee.

I grabbed a table; it was trying to run away. I had a choice of two, one next to a group of French ladies, just drying off from a swim and enjoying a fairly loud chat and even a sing. As we were still recovering from the train ride where just six ladies had impersonated a crowd of several thousand, I was not keen to choose that table. I looked to the other at the far end. It had a mixed group around it, equally loud. The table between the two had people sitting at it. In the end I chose the table near the Gallic ladies. I’ve always enjoyed the odd spattering of French, especially a good song. I have never been able to speak French, my French teacher at school threw her hands up in defeat. I was surprised though as I thought an F in French O level meant fantastic, but apparently it meant fail.

Mary and her Dad were buying the coffees, hence my agonising over the choice of tables. The position I had taken placed the rear of my wheelchair towards a slight step. I kept saying to myself, “don’t forget, do not go backwards.” Fortunately, I didn’t. The coffee was very nice for a paper cup, portable cabin coffee. The wind was light, the sun warm and the company wonderful. We then travelled to the URC Church for lunch.

On route to the Church, we saw the famous Dawlish black swans. They were next to the fountain near the viaduct. I was commenting to Mary on how the wind looked like it was blowing the water from the fountain towards the path, when it hit me, the water that is. Mary decided to stop a moment and enjoy looking at the swans. Not in anyway related to me getting a light shower. How refreshing on a hot day to get a light splash of fountain water, is what I wasn’t thinking as I asked Mary to move on.

Sausage and mash, is there anything better? Yes, sausage and mash without broccoli and cabbage! I couldn’t believe it, I ordered sausage and mash at the URC Church café and expected either onion gravy with peas or baked beans. But not gravy, carrots, broccoli, and cabbage. What is happening to the world? I know there are some serious issues, but I didn’t know it had got this bad. Still at least I could leave the cabbage and broccoli. The URC Church café do a main, pudding and drink for £5, seems good value. It’s also a nice big space for my wheelchair and has a ramp access. They let me have a cheese scone as my pudding as I don’t eat sweet stuff. It’s a choice I made a few months ago. The easiest thing to do when you are mobility limited is to eat. The easiest things to eat are sweet things. I can eat a packet of biscuits, or a bar of chocolate at one go. So, if I don’t have those things at all, it stops me gaining weight. That way I won’t end up needing an extra-large wheelchair or bed. Doesn’t stop me fancying sweet stuff, but I can just about keep off them.

After lunch we had a short time to visit Dads flat before our train home. Dad’s flat is a tight fit for my wheelchair, but just about possible. I was able to sort out his laptop for him. Nothing major, such things would be beyond me now. Just checking why the internet had lost connection. Then it was time to head to the station, the required twenty minutes before the train. You can’t arrive last minute when you have assisted travel.

The sun was really beating down on our trip to the station and on the platform. If you don’t know Dawlish station it overlooks the sea. In a storm the sea overflows the station. We looked out at the flat, glistening ocean. A beautiful end to a very enjoyable day.

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How the station looked when we were there
This is what can happen to Dawlish Station in a storm

A fragrant offering

For Father’s Day, no don’t panic, it isn’t until 16th June. Mary is planning on buying me some aftershave. No, let’s be posh, eau de toilette. No, I’m not posh, some smelly stuff to slap on my chops. In order to choose the right one as a surprise, well maybe not such a surprise, Mary asked the staff at Superdrug. That’s right we use only the highest-class shops. She asked them to spray samples of a few possible scents on cards. These cards came home into my bedroom, come lounge, come everything room (see my blog “Bedroom, dining room, lounge, toilet”) where I smelt them to see which I liked. Having selected three, we visited the shop to have those three sprayed onto my skin. We then travelled on to the Cleve Spa. I don’t know what the staff thought when serving me coffee. Probably something like:

“Wow! Mike smells amazing.”

Or possibly more likely:

“Why does it suddenly smell like a Turkish boudoir in here?”

Either way the coffee shop certainly smelt very different around where I sat. The three scents wafted around on the warm air. I was sitting in the conservatory and the door was open. A few people said hello, I’d like to think it’s because of the scent. But they were probably just friendly.

While at the Spa Mary and I were trying to decide which of the three scents was best. One problem, we both forgot where they had sprayed them. Was it inside or outside my arms and the back of which Hand? We must have looked very funny taking turns sniffing my arms and hands. At one point Mary inhaled deeply then said, “no, that was just sweat.”

On our return home, it being a warm day and the scented cards being left in my room, we were hit by a wall of scent. I am very curious what my carers tomorrow will say. I’ve been in this room for several hours and the smell is still overpowering. Walking in fresh I expect they will either be knocked backwards out of the door or pass out in a faint. They will certainly be in for a surprise, not necessarily a good one. Whether they will be in a fit state to do any work remains to be seen.

Scent is a very dangerous thing. Mind you anyone who ever watched a Lynx advert knows that. After shave can cause hoards of women to chase you down the street. Not that I am influenced by advertising.

Smells are an odd thing. We tend to think only unpleasant smells are objectionable. There are certainly plenty of unpleasant smells in a room that plays as many functions as mine, including as my toilet. But even nice smells can be unpleasant in volume. I can think of many occasions where people have been so generous with their shower gel that the scent of it winds you. Then there are the people who use so much scented talc it literally sucks the air from your lungs. What about those who think perfume only works when a whole bottle is applied or the person who thinks deodorant sprays must be applied for ten minutes at a time. I think we all know such people. Maybe I have embarrassed you into realising one of those descriptions fits you, sorry.

Back to Father’s Day. I only want to mention it twice to make sure it isn’t forgotten. Anyone would think I’m a Father. Oh yes, I am. I’m going to bring in the obligatory statement everyone makes these days. Father’s Day can apply to any significant male figure in your life and if you only have negative male figures in your life, I am sorry to hear that. I also realise for those whose Dads are no longer around it’s a difficult time. I’m saying all this and it’s still a few weeks away. That was such a long statement I nearly forgot what I was saying.

The fragrance was chosen from the three, spray tested on my body and will no doubt be bought. But that of course will be a complete surprise to me. So, I wait with baited nose for my present. Meanwhile I am trying to get to sleep with a rather strong smell of several after shaves in the air.

This morning I called Mary down as usual to help me on the commode. For some reason she laughed when I told her my latest blog was called “A fragrant offering.” I can’t think what smell make her think that was funny.

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Science fiction or fact

“Pass me the proton gun”. That’s what I felt like saying after I heard that one of my tablets is called a Proton Pump Inhibitor. Surely it’s a laser gun, not a tablet, or at least an inter dimensional portal opening device.

It feels like medical science has shot on so fast in the last few years that the technology on my old favourite TV shows look like cave man tech in comparison. I used to think Star Trek had such amazing equipment. But in the early shows they just lay on a medical bed and a gigantic display read out heart rate and other vitals. You can now buy a ring on Amazon that will give you heart rate, oxygen and sleep patterns, a ring! Just about any smart watch does the same, well without the oxygen read out, unless you get an add on.

Sleep monitoring ring

A couple of years ago I bought an endoscope, to look behind a radiator. An actual endoscope. That’s a fibre optic cable that enables you to view into tiny holes and gaps. They use them in medicine to view down your throat and up the other end. My endoscope plugged into my laptop and enabled me to view a video feed on the laptop, now you can get Bluetooth ones that connect to your phone wirelessly and you view the feed on your phone. Of course they say, not for medical use. But they are effectively the same devices, available for a few quid. Don’t tell me no one is tempted to use them medically, hopefully none of my friends.

Then there’s the space age materials, around today. Pressure relieving gels made of silicone, breathable fabrics, super absorbent pads, and all the new polymers, plastics to you and I. Then what about the leap forward in electronic controls. I was looking at, well to be honest I was coveting, an amazing hospital bed on eBay. It was able to profile into a seat from a bed. The controls on it would not look out of place on a space ship. Multiple controls, read outs, even a colour LCD display. These days the simple controls on beds, chairs, wheelchairs and hoists are touch control. They use a circuit board level switches under the plastic cover. The more advanced even use the conducive type found on smart phone screens. These are technologies that didn’t exist when I was younger.

You can monitor most medical read outs via your smart phone and let’s face it a smart phone is one of the most incredible advances out. If you had told me when I was a teenager, much less a child, that I would be able to own a hand held computer that could: communicate with anyone on the planet with video and sound. Run so many applications the mind boggles. Track my location to a few metres. Speak to me and understand me. Translate most languages, well sort of. Be pointed at an object or place and tell me what it is. Take high definition photos and videos. Be a word processor, a desk top publisher, a portable power point device, an excel spread sheet, a complex calculation device, a drawing tablet, a video editor, a photo editor. I haven’t even scratched the surface. If you had said I could own one of these I would have laughed. Or I would have assumed it would be massive or cost thousands. But the vast majority of us now have and rely on smart phones.

My smart phone connects to my Hive heating, can check my cctv cameras, switch on my smart plugs and lights. It also links to my Amazon Alexa system. How much longer before we routinely get smart monitoring and medicine dispensing for dementia patients. I believe it already exists. Or how about a push button food preparation for people like me. Where a meal is taken from the fridge or freezer, heated and delivered to my bed robotically. Personally, although I could see that and even robotic care as possible in the future, I would never choose to replace human beings with machines. You would lose so much. Human contact is not replaceable by machines and it is vital to our wellbeing.

I like technology, it’s fun and helpful. But it has its place and its limits.

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Not so public convenience (Updated)

(This blog designed to advise and help, it is humorous, but also factual. It may cause you to blush)

Wheelchairs are brilliant machines for transport. Power wheelchairs in particular have transformed my life. But a wheelchair is after all still a chair. Think about a chair, you sit on it, it has a solid seat, and no hole in it. So, imagine that you are a man and you need a wee. I guess it may be worse for a woman. You may not want to imagine it, you might prefer to think of something else, I am trying to help for those who would find this useful. These are everyday realities of being disabled. Let’s forget for a moment if you need to do anything more than a wee, that’s a whole other area.

You are sitting down, and you need to wee. Well you might think, there are urine bottles you can use. True, there are. Think then about Wheelchairs, they are narrow, the width of your bottom typically, so your legs are together. Still with me? Maybe you need to act this out in your head. Where does the urine bottle go? If you can put it in the right place how do you ensure, no leaks at a 90-degree angle without injury to yourself. Perhaps you are beginning to see the issue. It is possible but not easy, after all it can be done. Then imagine you are on a train in the disabled space. The train companies give much more space these days for wheelchairs. But typically wheelchair spaces face the rest of the seats. That is also true on many buses. Perhaps we are expected to entertain the crowds while we are there. Getting back to relieving oneself, I don’t really fancy entertaining the other passengers by using a urine bottle in front of them, or under a blanket with everyone wondering what I am doing. It would be a little off putting. Talk about performance anxiety. Fortunately, there is an alternative and I found out about it after I had struggled with urine bottles in wheelchairs for years.

You might think how can Mike share such intimate details publicly. But, if I do maybe I can help others. I didn’t know about these things. I have had to struggle finding out. If my embarrassment can speed up the help for others, then so be it.

The alternative is a Conveen. I believe there are various makes, but I only know about the one I have used. Coloplast Conveens. They are external catheters. Normally catheters go inside the urinary tube in either a man or woman. Conveens, which I think are only available for men, fit on the outside. They look like a condom, but they have an open end with a fitting for a tube to go to a urine bag. They are adhesive, I will come back to that as it causes some fun fitting them. The bags come in two types, ones that attach to your leg and ones that attach to your bed or directly to your wheelchair.

Remember I said Conveens are adhesive, so they must stick all around to prevent leaks. Obviously, you need the right size. Yes, they send you a device to measure the diameter of your manhood. After you have recovered from the disappointment of the fact you are average, boasted in the fact you are large or wept over the fact you are small. You can order them. When I phoned the surgery to give them my size, I had a very funny conversation.

Prescription line lady, “what size do you need?”

Me, “30mm”

Prescription line lady, “is that length.”

Amazed silence from me, then “no, that’s diameter.”

I feel like I should wait a few minutes at this point while all the guys reading this, finish measuring. By the way the diameter range available is 21 to 40mm. Who knew such things eh? Or who wanted to.

There is a special measuring device (See picture below):

Fitting a Conveen, is, let’s say tricky. Think adhesive, hair, preparation adhesive, yes they give you a preparation wipe of extra adhesive. So, everything is sticky. You really need the two pairs of hands you have with a carer to fit it successfully. If you get it right and don’t catch all your hairs in it. Then connect the tube right, it works great. Much better than any urine bottle.

I would say if you are someone who needs to use a Conveen, read the instructions carefully and follow the advice of the rep to the letter. I ignored one bit of advice and realised afterwards why it was important.

Below is a picture of a Conveen sheath, the part that fits over your manhood. It’s rolled up in its package so you can only see the top that connects to the tube, that then goes to the urine bag (see photo below the Conveen) the ribbed part is a strain relief or air gap. This is where I went wrong. It’s important to flatten all this part with your thumb and fingers when fitting so none of your manhood goes into any of it. If it does, then that strain relief part, with the ribbing just acts as a pinching device, not nice. The only bit that goes over your manhood can’t be seen in the photo, it’s all rolled up and sticky. It unrolls as applied. Glue on glue, very sticky. Hence no leaks. So long as you apply it right and have the size right, no boasting. (Also note, there are two lengths available, so check you get the appropriate length, no comment).

Next step you connect the tube from the urine bag and attach it by straps to your leg. Make sure when attaching it to allow for expansion, after all it will get filled up. The urine bags come in different sizes and will need emptying, so leave the drain tap accessible and check it’s closed. It’s easy to accidentally knock it open if your carer pushes it back under your trouser leg after draining. By which you will realise they have a drain tap at the bottom and your carer or partner has the enjoyable job of draining it, see photo below.

Conveen sheath in its package. Note the ribbed section, avoid inserting your manhood into this bit by squashing the top of sheath when putting it on.

Leg bag, pipe at top connects to the sheath, see below for close up of the drainage tap

Note, make sure tap is closed after draining.

At the end of the day you may be thinking, but how do you remove a sticky rubber thing from such a delicate area. Your eyes may be watering in anticipation. Don’t panic, they thought of that. There is a non stinging release spray that is amazingly effective at removing the glue. It’s a pain free process.

This is the glue remover spray.

Have I freaked everyone out sufficiently and caused everyone to need a lie down or at the very least some counselling? Seriously, I hope I have helped to explain and clarify some things and point you in a helpful direction.

Let me just emphasise these Conveens have been life changing for me. I can only recommend the Coloplast ones as they are the only ones I have tried. They sent me samples to try first. They work brilliantly, the only failure I had was when I applied it wrongly the first time. Every other time since I have had no issues. So follow the instructions carefully.

I read this blog our at a writers group in Wellington and one big issue that became apparent was, what about women? There are internal personal catheters for women, but that is not as easy or convenient.

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Into the Ark

The plan was a nice day looking at the animals, but as the taxi neared Nailsea we began to wonder if the zoos’ name may be slightly prophetic.

For weeks we had planned a day out at Noahs’ Ark Farm, it’s a zoo near Nailsea and Bristol owned by friends of ours from our days in Nailsea. The planning had started during the most unusual April ever, when the weather was more like summer than spring. Easter I’d actually got sunburnt. Understandably we were expecting the weather to be even better in May. Have you noticed how the weather seems to read your mind and enjoy surprising you? Gradually as you will have noticed, if you are reading this live, the weather had been getting colder and wetter.

To go out for a day involves a lot of planning for us, so we can’t just wake up one morning and say, “weather looks nice, let’s go.” We decided on a date, Thursday May 9th, booked a taxi and had already organised early morning care with my micro provider, I have both an agency and a micro provider. My micro provider tends to often cover early mornings and evening visits. She is a really lovely person and very good at her job.

We kept looking at the BBC weather app in the weeks before, first it showed colder, overcast weather, then rain. Then a few days before we were due to go, it showed a break in the rain. We still hadn’t booked firmly with the taxi at that point, just provisional, so we decided to confirm the trip.

The day before was heavy rain, but we hoped the air was just clearing. On the morning of May 9th it was clear and dry; in Wellington. Our hopes rose. I checked the BBC weather for Nailsea and it showed rain all day, what do they know.

As we were going to be out all day I had a Conveen put on. These are external catheters. I will look at those in another blog, because they have caused much hilarity, but they are also extremely useful in my situation.

Knowing it was cold and rain expected I was wrapped up like an Eskimo. I have faux fur lined leggings that I sit in, on the wheelchair. Then a coat, hat, scarf, gloves and a lined waterproof cover over the top. People look jealousy at me and often comment that I have the right idea. Because the back of the waterproof cover goes over the head rest I look a bit hunchback.

Mike all wrapped up

We were travelling with our favourite taxi firm, Archies cabs, his taxis are bigger than most. So I can easily fit into one of his cabs and slightly recline. I have to make sure my shoulder straps are tight and neck brace on plus my arms under the restraints. That way if I have a collapse I don’t get bounced too much. I did have a collapse and all was well. Archies cabs have good suspension. Paul, the owner was driving and he is careful on bumps.

Most of the journey was fairly clear weather, just the odd raindrop. As we neared Noahs’ Ark the Biblical floods started. There was not just water pouring out of the sky, but water forcing it’s way back up from the drains! Water from above and water from below, if you know the Bible story you will understand the reference. Mary and I didn’t know whether to laugh or cry. But we decided we would pray that there was a break in the weather, and we would make the best of the day.

Arriving ten minutes early we had to shelter in the bicycle shed, but a kind ticket office staff member let us in early. I don’t think I have ever spent as long buying tickets and reading the signage. I am sure it was not because that bit was sheltered and the rain looked heavy. When we did venture out the rain had eased. Even so we headed for somewhere warm and inside, the reptile house.

One of my previous carers gave Mary and I a pink bendy toy. Really it’s a plant clip to hold a plant against a stick, but we use it as a mascot and call it Kermit. He travels with us and gets photographed in various locations. He posed by one of the reptiles.

We didn’t need to shelter in an ark, there was no Biblical flood. Although there were some bouts of heavy rain and it was chilly. We also had sunshine, long periods of dry weather and times when it just lightly rained. Our prayers were answered. We also met lovely people, both other visitors and the staff. Everyone was helpful kind and understanding.

Mary feeding the meercats
Mike wrapped up next to lion
Lion eating
Mary feeding lambs
Elephant close up

At lunchtime we went into the café. The tables were laid out in rows. Normally as I am in a wheelchair I go on an end. But I fancied a window view, so I weaved down between the backs of peoples seats in between the tables to the window. It worked ok getting there, but on the way out more people had arrived and one poor child had to be lifted in their chair, by Dad, out of my way. It may seem I was being unreasonable going to such an awkward place, but why shouldn’t I have a window view occasionally.

Mike having lunch

We managed to see a number of the talks and most of the animals played ball and came out to prowl, frolic or at the least feed. Probably the most exciting talk was the Wings of Wonder which, given the weather was inside. You haven’t lived until various large birds of prey have brushed by your ear at speed.

Mike & Owl

As may be expected from my previous posts, I had several collapses during the day. The zoo was so empty, maybe twenty or thirty people, that we could always find a quiet sheltered spot for me to recover.

Mike reclined in wheelchair

We also bumped into someone we knew from our Nailsea days who works there. It was so lovely to catch up a little.

Since our last visit Noahs’ Ark has improved it’s disabled facilities greatly, including a changing places toilet. No, that’s not where you become someone else. It’s basically an adult changing room for disabled. Think baby changing but with hoists to do the lifting. They have one in Weatherspoon’s Wellington. It’s new at Noahs’ Ark and everything is very swish. Lots of room to manoeuvre inside.

Changing places toilet
Changing places bed

I was able to get most places, only a couple of the animal enclosures had steps. The maze is not accessible, and there are a few platforms with steps. The exciting bit is getting around the site in a power wheelchair. Some parts are an old farm with concrete drives, other bits are very steep. Everywhere has tiny bumps and indents, plus cambers on the paths for drainage. The gravel bits have various size stones and in some places the stones have gained bigger holes. Overall the ride around is thrilling. Not sure everyone would enjoy that, but I did. Of course not every power wheelchair user would attempt to go everywhere I went. I also travelled fairly fast. A push wheelchair would not be as exciting, but you would need strength on the slopes. All of this is explained in their accessibility brochure. I find they gave the best details of anywhere. It is an accessible site, more accessible than most. As with all such places you just need to be cautious. Because I am not cautious by nature it is just as well my Quickie Salsa M2 was able to cope with the terrain.

High view of Noahs ark park

The only thing that would stop us going lots of times is the taxi cost. We had to save up for this special treat. You might wonder why we travelled all the way by taxi, it may sound an extravagant method. But, the taxi to Taunton Station plus train fare and a taxi from Bristol station to Noahs’ Ark is the same as all the way by taxi. It was a fabulous day out and the weather didn’t dampen it.

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It’s a Smart life

Back in 2014-2015 I had a Mother. OK so we all have Mothers, even if we’ve never known them and I’ve had one since birth that I do know. But this Mother was a 6” white plastic electronic unit with a big wide bottom and a narrow top, blue glowing eyes, red lips and a tendency to make weird noises. Don’t say your Mum’s like that, it’s rude. My unit was a Sense Mother, one of the first the Internet of Things (I.O.T.) smart devices. From such humble early devices, it’s a surprise the idea ever took off. My Mother was a crowd funded device, made in France and unfortunately the company has now gone bankrupt. Probably because Sense Mother didn’t do enough things to make it useful.

Sense Mother

The idea sounded great back in 2012 when they first talked of developing it. The concept was of a smart unit that would monitor your life and give you prompts. The slightly creep advertising talked of a mother better than your own. It certainly wasn’t that. But as someone who needed prompting to take tablets, monitor temperatures and wanted to know when people came in and out it sounded great. In practice the reality was more limited. Little devices called cookies were attached to things you wanted to monitor and when they moved the Mother unit registered their movement and checked the temperature around them. It’s ability to register movement was limited in distance and type. So, I could know if I had picked up my tablet pack and I knew when Mary returned home by the front door monitor clunking. But beyond that it really only enabled me to monitor temperature in different rooms.

Fast forward to 2018 and the I.O.T. had leapt forward. Amazon Alexa devices, Hive heating, smart plugs, smart cameras, smart switches all connected and controlled through the Internet. They could be controlled via voice or directly on an app. Enabling me to radically improve my setup last year. So that now I have Amazon Echo devices in all rooms. The one next to me even has a small screen. I can use my voice to call any or all other rooms. Which means wherever Mary or my carers are (including the garden, I have a portable) I can request help. If I don’t know where they are, I just broadcast everywhere.

Echo Show, like I have by my bed

I can view any of my external or internal cameras by requesting the relevant one with my voice, “Alexa show front door”. I also have a Fire TV stick, so that I can display the front doorbell come camera on the TV. I can even talk to a person at the door. The Hive heating gives me control of the heating, “Alexa change the heating to 20 degrees”. Smart switches and plugs give me control of some lights, “Alexa all lights on.” I have control of devices around the house. Before I get transferred into my reclining chair, I can turn on my ripple cushion by voice. When we go away, I can turn off the ripple cushion on my bed. There are several switches that cannot be changed as they are too complex and therefore too expensive. The ones I have changed have been presents for Christmas, Father’s Day and my Birthday. The Hive heating and Alexa were a grant to give me control of the heating from my bed. Most of the smart cameras I won in free competitions. That’s how to have a Smart house cheaply.

Hive Thermostat
Netvue Doorbell camera

One of the big frustrations of limited mobility is lack of control. Smart technology gives me back at least a little control. I would love to have electric curtains/blinds and even door controls, electric door locks do exist, but those are beyond my means. I would also love a smart hoover and a smart mower but the same applies. There is a lot of smart tech out there that I will never be able to afford.

On the none smart, but useful to control side, I love the fact that I can operate the control on my hoist and the control on my profiling bed. It’s also wonderful when I am in the park or a large building so I can operate my own wheelchair. A lack of control is not pleasant. I am so pleased to live in this modern age with modern technology. The speed of technological advance in the last few years is amazing.

I know a lot of people worry about smart devices monitoring their conversations or smart cameras monitoring their actions. For me the control and convenience outweigh the loss of privacy. Let’s face it, I don’t get much privacy in my life anyway. So, wherever I can regain some control I will.

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You’ve had your chips

Chips, chips and more chips. I really love a bag of chip shop chips. After her stroke a couple of years ago Mary must avoid fatty food, so I don’t suggest that we go out for chips. But when Mary goes to visit her dad and I have a carer for the day my first thought is ‘chips’. Well maybe it’s my second thought after getting ready in the morning.

There are two places locally we go to eat our chips. The Quaker garden, a little quiet garden behind the Quaker meeting house, off Wellington High Street and Wellington Park. Often, we will eat chips at the Quaker garden and then carry onto the park. That way the chips stay hot as the chip shop is near the garden.

Wellington park, in case you’ve never visited, is a great place for a wheelchair. Getting there is not so easy. Wellington High St is an obstacle course and whether you take the narrow alley by Lloyds bank or the car park it’s a bumpy ride. Going across the path by the football field and cricket club is like a potholing trip. That is if you are trying to avoid potholes. There are some places where that’s impossible and the articulating suspension on my wheelchair gets a good workout. The tiny car park opposite Wellington Park is best to avoid at school arriving and leaving times. It’s not big enough for all the cars that try to squeeze in and it’s really a case of taking your life in your hands when weaving through the cars.

Once you enter Wellington park you feel you have stepped back in time. Of all the parks I have visited it is one of the prettiest. It’s also one of the best used by the greatest age range. There’s a family feel about the park. Some parks feel like spaces for the young or old, Wellington park feels like a place for all. The borders, though a bit of a blast from the past, are beautiful and well kept. There are winding paths, surprises around most corners. A bandstand that has live music for three months every summer and many events over the year. There is also a large and beautiful pond with a Chinese bridge at one end next to a waterfall.

There are trees to look at and even climb, a classic fountain and a fun and almost invisible feature, a ha-ha. If you don’t know what that is, then think invisible fencing. A drop off in the grass to give you an unimpeded view from park to countryside. In these days of health and safety gone mad, it’s survived without fencing.

The best and most wonderful things about Wellington park for me are that it has new tarmac paths, they are super smooth and I can operate my own wheelchair in the park. It’s quiet enough at the times we go to not risk the safety of others.

There is an old fashioned four-sided covered seating hut. One wet day I was visiting the park with a carer and we decided to shelter there. The lowest part of the shelter still had a 2” step up to it. I positioned my wheelchair and powered up it, the wheelchair lurched up and the front two of the six wheels flew in the air, the whole chair seemed to fly. It didn’t really, it just felt that way. With a bang the front wheels hit, and the chair stopped about an inch before the seat. I hadn’t noticed what a white complexion that particular carer had before that moment, nor did their complexion seem as white later on.

The other really nice feature of the park is a beautiful house built around 1900 that is still lived in by the park keeper and family. I have seen a glimpse inside through the front door and I hear the inside is really lovely.

Mary and I go regularly to Wellington park and I go there when I can with my carers. It’s a little haven of peace in the middle of Wellington.

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Music at Wellington Park

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

The unexpected emergency

I didn’t plan on giving Mary a big shock that morning, in fact really it was 111 that should bear the brunt of the blame.

The day started fairly normally, for me. It was 2006 we were living in Hartlepool and this was before I had the downturn in 2007 that led to me needing a wheelchair. I had a routine blood test at the GP surgery. Except it wasn’t as routine as I hoped. Anyone who has had a blood test will know that the comment, “you’ll feel a slight scratch.” is absurdly optimistic. Most times, not only do you feel a very sharp scratch, but it also aches while they take several tubes of blood. Today I felt nothing, absolutely nothing. Not the needle going in, not the ache while it was in, not even the nurses hand on my arm. It’s been said before, I am very fast to react to such things and take action. So obviously I totally ignored it, didn’t mention it to the nurse and went home.

At home I started thinking “that was odd.” Actually “that was odd.” Is a favourite expression of mine. I said it several times when our neighbours house was being burgled. When I heard the break in, and I said “you see that every night”, when I saw the thieves walking down the road with their TV. My brain churns slowly sometimes. That’s what happened after I couldn’t feel my arm, my brain churned slowly. I rolled my sleeve up at home and touched my arm, it felt like it had been anaesthetised. Finding a pin I tried sticking it in various parts of my arm but it was numb.

Before you think I am a complete idiot I did wonder about a stroke. So I lifted both arms, which I could do, same strength. I could feel both legs. I looked in the mirror and smiled. My straight and goofy face smiled back. Obviously something was wrong, but it wasn’t likely to be a stroke. Mary was in the kitchen cooking lunch and over the years I had caused her enough panic with my illness. So I decided I would check it out with 111 rather than bother Mary about it. I think 111 was a different number at the time.

Our phone was in the hallway opposite the front door and by the stairs. I sat on the stairs. Mary was through the other side of the front room in the kitchen unable to hear anything as there were two closed doors between us. I explained to the 111 operator that I had a numb arm but I was sure it was not a stroke. She told me to hang on a second, then continued to ask questions. Before she had finished asking her questions there was a knock at the door. I opened it to find two paramedics standing there. We lived just half a mile from the hospital, hence the speedy arrival. I hadn’t even known the operator was requesting paramedics, so I was quite surprised.

Explaining their arrival the lady on the phone said she had requested them immediately and let me go. I was taken into the front room and wired up to a heart monitor and had an oximeter put on my finger. Mary was still cooking in the kitchen with the door closed oblivious to all this. I was fully checked over, heart, oxygen, blood test. As always with any ambulance visit they offered to take me to the hospital for a full check up, but they could see what I had already said, it was not a stroke. I later found out it was one of the early signs of neurological damage I have.

It was while the two paramedics were standing over me with all their equipment connected that Mary walked through to say lunch was ready. She took finding two paramedics in high vis jackets, standing over her husband who was wired up to a heart monitor, extremely well. If she was shocked and horrified she hid it very well. Her jaw only momentarily hit the floor and her eyes were only a little wide. I’m also not sure it was a gasp she gave, it could have been a sound from the kitchen.

As I began it certainly wasn’t my plan to shock Mary and as you can now fully see it was really all the fault of the 111 operator anyway.

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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