Month: Apr 2019

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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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.

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.

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.

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.

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

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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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.

“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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“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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