Month: Jun 2019

Lying on the bed in an anti-room of the neurosciences ward, I’d felt some trepidation. Electricity and I have never been great friends. You might say we were no longer on speaking terms, ever since 1989 when 415 volts 13 amps of electricity tried to kill me. OK, maybe it was my foolish oversight, but being electrocuted and burnt by a washing machines mains capacitor was quite enough to put me off electricity for life (See my blog “Ambulance Transport” for the details). I had therefore not been very happy when in 2007 a neurologist referred me for a nerve conduction study, and I discovered it involved running electric currents along my arms and fingers until they jumped. Yes, it hurt, not really badly, but it was the reminder of the previous electrocution that was the worst part.

Now 12 years later and in a declining health condition my current neurologist wants to rerun those tests to see what has changed. I’ll tell him what’s changed, I now know what’s coming and I worried all the night before.

So, lying on the bed awaiting the test I was practising meditation. I’m hoping practice makes perfect and that at some point it will work. Actually, I can relax quite well when I set my mind to it and that’s what I did.

I am going to back track at this point, as the process of getting to hospital in a limited state has its points of interest. If you think preparing to go to a hospital appointment is complicated generally, try it when you have limited mobility.

First, I must call the hospital and ask what tests will be done. If they need to test me lying down or sitting up, then if it’s lying down, as this was, do they have a bed available? If they have a bed, do they have a hoist to transfer me from my wheelchair into the bed? If they have no hoist I will have to arrive on a stretcher and a banana board is used to transfer me. Then I need to book an ambulance with stretcher transport. Which takes a while because they ask a lot of questions about why you need it. I then make sure there is a bed available on the ward and tell them I’m arriving by hospital transport. Next, I must change my carers timing. Because the appointment time would clash due to allowing enough time for being ready early. When you get hospital transport you have to be ready two hours before appointment time, that’s if the appointment is nearby. When I was going up to Liverpool, I had to check a leaving time, as it took 4 hours to get there. Before I was on the latest medication, I didn’t have the concentration to do any of this, so Mary sorted everything. Even with the new tablets, which help my focus, I still get absolutely wiped by this process and it is the only thing I do in a day, organise the trip to an appointment. This all happens weeks before the actual appointment.

Back to the day of the appointment. While we were waiting Mary took a phone call, checking parking and confirming the time of arrival. Always very helpful for me as I get anxious if I am waiting for an unknown time. My appointment was at 12pm and the two ambulance crew members, a lovely couple of ladies, arrived a bit before 11.30am. Those who follow my blog will know that our house is not big and so a stretcher, which I needed as the test involved lying down, is difficult to get into the house. The crew got it through to my bed with a bit of jigging, the bed, not them. Then started to get the stretcher prepared ready for me to transfer onto it. One of the ladies recognised me from my blog, I am famous at last. Holding back on signing autographs, that for some reason she didn’t ask for, I hoisted up from my bed onto the stretcher. I was swaddled onto the stretcher with straps and a blanket. This is done so that if I have a collapse on route, I don’t end up with my arms hanging. I also had on the neck cushion that keeps my head from lolling. Fortunately, I am very light, which makes it a puzzle as to why the crew heaved so much on slopes and corners. I know the BMI says 14 stone is obese for me, but that’s crazy. After much tricky negotiation the two ladies got me through the tight doorways, round the sharp angles, up the inner ramp and down our bumpy alley. Then onto the High Street where the ambulance awaited.

If you have never been wheeled out into the High Street on a stretcher, let me just say, you have never lived. I used to think the most embarrassing thing would be using a wheelchair, until the first time I was wheeled on a stretcher in Wellington High Street. There is something about being in bed, that feels like it should be inside. I don’t know why that is, lying down, in a blanket just feels like an inside sort of thing. Obviously when you have a major accident or emergency you are wheeled on a stretcher publicly; in that situation you may not be very aware of what’s happening. But remember I was being transported that way because I needed to be tested on a bed. So, I was awake and aware, oh yes, and embarrassed. Red has always suited me though.

We arrived at Musgrove after a very smooth trip, the ambulance crew parked around the back so that we were on the correct level and didn’t have to go up in a lift. The first thing that hit us all as we entered Musgrove was the smell of lunch, they were obviously having smoked fish. I say obviously, but it could have been any fish from fish fingers to smoked.

There is something very nice about arriving on hospital transport. It makes up for a lot of the inconveniences. Because the ward has advanced notice of your arrival, you often go straight into the side room that you will be seen in. That happened this time. I still had to wait for the doctor. Next came the transfer from stretcher to hospital bed. At home I used my hoist to transfer onto the stretcher, here I had to be slid on a banana board. I had on my day sling, which is a polyester sling that covers all my torso. This has straps which they could hold onto and pull. There were three people in the room, two ambulance crew and a nurse. Here I had confirmation I am not obese, they called just one more member of staff. A year ago, when I was transferred into the MRI machine, they called a total of 8 people! I must be half the size, mind you I have lost weight. The 4 of them transferred me easily. This involves lining the two beds up close and same height, slipping a board under me, pull across and take board away, simples, for me anyway.

I didn’t have long to wait for the doctor. She asked me some medical history questions and then started the test. She attached electrical contacts to parts of my body starting with my feet and asked me to say when I could feel a pulse, while recording the results on a computer. After I felt the first pulse several more followed. She repeated this at different points on my feet, lower and upper legs, arms and neck. At some points she warned me that I would feel a whole series of pulses in quick succession, at others that my arm or leg would jump, they did. If you have ever used a TENS machine or one of those electrical stimulation exercise machines, that’s what it feels like. I would not describe it as painful, as such. The pain for me came from two things, anticipation and memory. The other thing I noticed was that it was less painful than the test I had 12 years ago and that this time it included my legs, which previously it hadn’t. In that test 12 years ago, the doctor had spent a long time on my hands and arms. Testing each finger many times. This test was over more of my body, but less detailed per part. I suppose that’s because this is updating how things have progressed, at that point 12 years ago, I could still walk, a little, I could also stand.

The next part was an electromyogram, this was very specific in my case, looking for a rare but unlikely neurological condition. So, I only had the needle inserted in my head, above one eye. I think if you had the test, it more likely to be in other muscles. This part did hurt at times as the doctor kept moving the needle around as part of her test, it also took a long time. I was well ready for it to be over. While the test was ongoing, I could hear a continuous sound like rain on a metal roof. Every so often she said to the nurse “Now.” Obviously, a button was pressed, the sound stopped for a second then re-started.

It’s always frustrating after these kinds of tests that you don’t get immediate results. They write to your consultant, who contacts you. When it was over, we only had about 20 minutes before the same ambulance crew returned to collect us. But just before they arrived, I had a collapse which lasted part of the journey. So the only way I knew where I was in the journey out of the hospital was a combination of Mary telling me and the smell of fish near the exit.

In Wellington we had the High Street parade to look forward to. A repeat trip along the High Street, maybe I should wave, no wait I can’t, my arms are strapped to my chest. Then back up our alleyway and home. The end of an exhausting trip out.

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Over the years I have had carers as young as 17 and some into their 60s. You would have thought the older ones would be more mature. Not always. You can never tell who the best carers will be. I used to think young people would never be suitable, then I was proved wrong. Then I thought older people would be unsuitable for me, again I was shown to be wrong. In the end it’s the particular person and their character, not their age that makes a good carer. I have had brilliant carers of all ages.

I will tell you two true, but funny stories of Carers at both ends of the age range. Some time ago, I will give you no clues of when or where. I had an older carer who was just there to sit with me while Mary was out. I can’t safely be left alone for long. It’s a safety issue. As I am at risk on my own, I can’t get into the wheelchair or out of the house alone, I would be in danger from fire or problems. That’s while my muscles are working. In a collapse I am completely helpless. While the carer was there, she made my lunch and not untypical for me I had a collapse after lunch. That’s where my muscles go into a paralysis for a short while. It’s a kind of fit or seizure. I still call it a collapse because when I used to be able to walk, I fell over. I am fully awake in a collapse even though my eyes are closed. While I was in the collapse, the carer was sitting in a chair next to me, so I was waiting for my muscle function to return and I heard a light snoring sound from beside me. My carer had fallen asleep! During her stay with me I had 3 collapses and she fell asleep 3 times! Of course, she might say she wasn’t asleep. Anyone who has been alongside someone who snores would probably recognise that argument. You may not be surprised we haven’t used her services since.

At the other end of the age scale I had a 17-year-old carer straight from school. As part of her duties she needed to prepare my lunch. I asked for a fried egg. I had assumed this was a simple task, but apparently not one she had come across before. I guess still living at home, if you don’t get a chance to cook or are encouraged to do so you never learn. That was the case for her. I have had other young carers who are very capable.

I have noticed that certain agencies have higher proportions of younger carers and other agencies higher proportions of older carers. Probably because some agencies provide anything from 15 minutes upwards of care and so carers work solidly all day, every day. A young person looking for a job wants that kind of work, regular hours, plenty of them. Other agencies do a minimum of an hour. They often seem to employ those people returning to work after children or semi-retired. Sometimes these carers want more flexible hours and so doing a couple of hours with one client, having a gap and a couple of hours elsewhere suits them. These are just my observations. We have used both types of agencies. We have also used Micro providers, who are self-employed carers, and can be any age.

A final comment about age. Some of my family came to visit recently when one of my carers was around. All of them said to me afterwards, “Isn’t she a bit young to be doing care work.” She is 39. But she does look very young. I obviously told her and she said she often gets told that. Of course, I fully understand as I am often being mistaken for a teenager, or is that a pensioner, I forget.

Age is a funny thing; we make assumptions based on it both in terms of ability and maturity. We guess peoples age by how they look and act. Yet in reality we can’t always guess a person’s age nor can we tell how capable and mature they will be.

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“We want one with a bigger bottom next time.” As I said it, I realised it could be taken the wrong way.

I wasn’t talking about carers, perish the thought. Nor as my wife suggested my own bottom being bigger. I’m sure you realise I meant aftershave bottles. We were in a shop and the said bottle was on offer. My current one seemed to fall over for a laugh. It sat and waited until the carers back was turned and them, bam, it fell on the floor. Every single day just after my carers had finished with it and the bottle was returned to its shelf on the trolley, there was a loud bang and we all knew what had happened.

“There goes the aftershave, it’s got too small a bottom.” One of us would say the obligatory words.

It’s as if the dark blue upright bottle of lotion waited silently for the right moment to catch us out. Always just as my carer is turning to do something else, yes it waits till her back is turned. It’s not a gentle thud when it falls to the floor either. Who would believe such a small plastic bottle could make so much noise hitting a carpeted flood. I suppose it does often hit the plastic protection I have around my bed, but that’s no excuse. So, as you can now understand I did not want a small bottomed bottle again, no matter how cheap it was. Even if the shop gave if away, I would give it back.

Today as I write this, we are at Cleve Spa coffee shop, no we don’t live there, well only every other day. Mary’s Dad is visiting and she is ordering him a hot chocolate. The lady serving offered it in a very nice glass mug. Mary said “can I have it in one with a bigger bottom?” She didn’t want it to tip over too easily. The glass mug offered had a very slender bottom. What is it with slender bottoms, is the world becoming obsessed with them. When I was a child mugs had big wide bottoms, as did everything and everyone else. Sturdy and wide were the standard, not slight and svelte. I suppose we are at a Spa and fitness centre so maybe slender is to be expected.

But why has crockery become so small and strange in the modern world. Slender bottom mugs, old pop bottles for water, milk bottles like I had at school for serving milk, gigantic wine glasses, you could fit a whole bottle in ones these days, and wooden platters. I know a wooden platter looks nice and it works OK with many things, a cheese dish looks great on it. But I was once served fish and chips on a wooden platter in a fancy pub. The peas just rolled on the floor, and I like peas. What next? Am I going to get a full roast dinner on a platter, where will my gravy go? It needs an edge, a barrier. I don’t want to have to start my meal by making potato walls around my plate.

Thinking again of small bottoms, as I am sure you weren’t. I fully understand the problem of small rear ends. I don’t have lots of fat on mine and the pressure of sitting long times can be a problem. This is not something that is covered sufficiently in the media. Shapely and fashionable posteriors are often covered, or uncovered. But the issues facing those of us with little fat on our rear ends just doesn’t see the light of day. I think it’s time we took a stand, not literally obviously. It’s a pain in the posterior, that is literally and I need to pad it out to make things more comfortable.

I do have a serious point to make, as odd as that may seem. Those of us who spend all our time sitting in chairs and lying in bed have to protect our skin. Pressure sores are a real danger and must be avoided. If you find yourself limited to bed or a chair for long periods of time (days or weeks) without being able to move, make sure you involve the relevant professionals in your care. In this case district nurses, who you contact via your GP. Prevention is better than cure with pressure sores. If you are concerned, chat to your GP.

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