Monthly Archives: November 2016

NHS cruelty part 2. (lies and more lies)

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So what could possibly happen when you are turned down for a wheelchair by the NHS, because of where you live, but you find the perfect chair at a good price, from a reputable company? A lot, believe me. (If you haven’t read part 1 and would like to, click here http://bit.ly/2gfxbNo) Because of the health and safety issues that the NHS cited as the reason to not give me an electric chair, I was really cautious. Before I clicked that buy button, I read all the small print. The only piece that niggled at me was a line that referred to the delivery. It stated that the delivery driver would deliver the package to our front door, but no further. What it didn’t say, was exactly which door qualified as our front door. To us, clearly it is the one that we open to enter our flat, but I worried that it might be possible that the driver would see the door at street level as our front door, rather than just the door to our close. With the chair being second hand, I didn’t want to loose it, as it could be weeks or months before we found another one. It was late on Thursday evening and their call centres were closed, so we took the chance and clicked buy.

That night, it kept going around and around in my head and I couldn’t get it to go away. Adam had agreed that he would call them first thing on Friday and if they wouldn’t bring it up the stairs, well we would work something out. When he called, he spoke to a really nice helpful and friendly person, who said we had nothing to worry about. My chair was to be delivered by TNT and it was already on its way and would arrive on Monday. If we called on Monday morning, they would them be able to give us the tracking number and we could speak to TNT to double check about the stairs, but they could see no problem. So we had a good weekend, counting down the time until I didn’t have to be pushing myself or have Adam pushing me around the house.

Monday arrived and Adam called TNT, then phoned me to confirm yet again, there was no problem with the delivery, and that it would be here in the afternoon. I was at ease, and I have to admit I was actually just that bit excited as well. Monday morning passed as usual. First the district nurse, then Laura arrived, who I think was just about as excited as I was. I really have found a total gem in her, to the point, that I actually wish I could now afford to have her here more often. If possible, I would have her here every weekday and I would extend the time from half an hour to an hour, but it’s just not possible. Anyway, I digress, I will come back to her in the future.

Laura had just been gone for about 20 minutes when the front door opened, it was Adam. At first, I thought that he had just come home for lunch but he explained that he had taken the half day everyone is given off in the run up to Christmas, to do Christmas shopping. He wasn’t going shopping, he was home because he just wanted to be totally sure about the chair being brought up the stairs. I was so pleased to see him as I too, wasn’t totally at ease about the whole thing. We had been chatting for about an hour when the buzzer went, Adam answered it and it was TNT. He opened our storm doors, our front door, and was waiting to hear them coming up the stairs, nothing happened other than the buzzer ringing again. I then heard Adam heading off down the stairs. I thought that he was just going down to help them, but it didn’t play out that way at all.

When he got down to the street door, the driver was standing on the pavement with a huge box, a box that he totally refused to even help him get through the door. He told Adam that there was absolutely no way that he was going to help carry it up all those stairs and turned and left without another word. By pure luck, the flat above us is having some work done and their plumber was also outside getting something out of his van. He overheard the whole thing and offered to help Adam get it into the house. This total stranger helped pick up a box that had to weigh about 15 stone and carried it, along with Adam’s help, all the way to our inner hall. We concluded that he was just as disgusted with the attitude of the delivery driver as we were. Adam told me that he had actually been really quite rude, about the whole thing. If it hadn’t been for this niggle about the whole thing that we both had, I could have so easily found myself sitting up here in the flat, with my new wheelchair abandoned in the street. I’m sure that your guess is as good as mine as to how long it would have remained there. We do live in a good area, but we know from throwing out old TV’s, that anything your not standing beside, well, it vanishes within a couple of hours.

It took Adam about another hour to put the chair together and for us to work out all the little fiddly bits, that the so-called instructions, didn’t really explain. The chair was already fully charged and appeared totally perfect. I’ve been using it now for about five days, and I can find nothing, really wrong with it. Even in this short length of time, I can say with certainty that it is going to change my life. My arms are already far less painful, and my fatigue levels have lowered. This is the answer that I have been looking for, despite rules and rude people, I nearly never got.

Please read my blog from 2 years ago today – 27/11/2014 – It never ends 

I can’t believe that Thursday is here already, somehow everyday this week seems to have been cluttered and so busy that I haven’t felt as though I have rested at all from waking to eventually sleeping for the night. Yes I have been having……

NHS cruelty

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I discovered the other day the ultimate lie, the NHS doesn’t care for the sick, they care for themselves. We are all told from childhood on, that no matter what is wrong with you, the NHS will care for us. If we are really ill, they cure us, if we’re disabled, they will supply us with the equipment that we need to make our lives possible. It may not always be pleasant to the eye, but they do supply it, no matter what. Well, it might not be all a lie, but trust me, a large part of it is. I’ve know for years that they can’t always cure us, bu the next step, surely they can’t get that one wrong.

Last Thursday, Adam took the day off work to accompany me to the hospital, my long awaited appointment to go to Westmark to get an electric wheelchair, had arrived. This isn’t the first time that I have asked for an electric chair, I have, in fact, asked before and at that time, I was turned down. The first time, was years ago, I was still working and I was finding the fatigue from using my manual chair in the office, was just too much for me. I was the Operations Manager for a company who sold distance learning to the public. In the world of that time, that meant a call center, and trust me if you have never been in one, they are always huge and always not designed for those who can’t walk. I was turned down on the basis that because there was more than just one step, from street level to our flat, we couldn’t get into our home to charge it. I explained that the chair would be kept at my work, where there was a lift, and as I had 24/7 access, I could pick it up whenever needed outside. In reality, I actually spent more time in a week at the office, than I spent anywhere else, but they didn’t see it as my home, so it was a no.

My life now is clearly totally different. This is now my 10th year of being housebound and I have now been using my chair all the time in the house for nearly a year. Those who have been reading my blog for a while, will know that my chair has been causing me huge problems. My grip has slowly been diminishing and the pain in my arms has been off the scale. That along with the fatigue has meant that Adam, has been pushing me around whenever he has been at home. My chair was actually causing me almost as many problems, as it has cured. Despite the fact I had been turned down before, the District nurse agreed that I should apply again as there was no comparison between now and my first application. So we did, and we waited for the appointment.

When it arrived, Adam phoned them as they wanted me to go to Westmark, rather than them coming here. It made no sense to us as without seeing our home, how could they know what chair would be suitable. We live in a Victorian flat and there are so many tight twists I have to negotiate, that without being here, getting the right chair would be hard. He told them about my condition and how difficult it is for me to go anywhere and what the impact of going out, has on me. They said we still had to go to them, so they can see what sort of controls I would find easiest to use. It kind of made sense, so we gave in and booked an ambulance to take us to what used to be called the Southern General Hospital. I say used to, as they just built a huge new hospital on the grounds and renamed the whole place, the Queen Elizabeth.

When the ambulance arrived, the attendants asked why I was going to Westmark, when we told them, they instantly told us, that because we lived in a flat, we wouldn’t get an electric chair. No one ever did. We still wanted to try. I knew that the attendants had been there loads of times, with loads of different people, with different conditions, but we had to at least try. There was a kind of heavy silence all the way there and even when they fetched a chair for me and handed me over to Adam, they said nothing, not even “Good luck”.

After about a half hours wait, we were eventually called through. The woman who saw us was really nice but within minutes, we heard that word, “No”. Both Adam and I wanted a true answer to why and what was going on that the NHS was leaving me unable to get around my home, something that in time, would mean I would need a full-time carer, just to be able to live, feed myself, go to the loo, all the things we all do throughout a day. The ultimate truth is as follows. Because an electric wheelchair weighs 14 stone or more, it can’t be lifted up all the stairs to our flat by one person, in particular, the person who was sat there talking to us. It would break all the health and safety rules. Even when we offered to have a group of people here to carry the chair up to our flat the answer was still no. The rules are set in concrete, a member of NHS staff must on their own be able to deliver the chair to the patient’s home, so that they can go through how to use it and so on. If they can’t, then no one else can either. The patient’s needs and health are of no importance what so ever.

We then asked why we had had to come to the hospital to be told this. After all, it would only take the person sending out appointments, to look at the address to know that we might not live in suitable accommodation. In Scotland, we use a numbering system that makes it totally clear it’s a flat. Ours is 2/2, translating as “second floor right”. Glasgow if filled with Victorian Tenement blocks, so the odds are there won’t be a lift. Clearly, to those who don’t know the area, we might have, but a simple phone call would have answered that question. On top of that, when Adam spoke to them, he had told them about the stairs. Still no one managed to use their brains, and simply say at that point there was no point in us making the journey, as the answer would be “No”. Therefore, saving both our time and freeing up more time for those who are suitable. The whole system stinks, including the rather smug ambulance attendants who took us home again.

So the NHS has left me stranded, we had to come up with a solution on our own. As soon as we were back here, both of us launched onto the web, to see if we could find an answer. I already knew that electric wheelchairs are expensive, but we had to look. What we found initially confirmed that. They seem to start at about £1400, and rise from there up to £26000, which put all of them out of our range. The hospital had suggested that we turned to the MS Society for help, but that just didn’t sit well with me, surely we could find a suitable chair, at a price we could pay. Our searching brought up one of the huge chemist chains in the UK who sell both new and second-hand chairs at a reasonable price. We found a chair that fitted perfectly, it was second hand, but it had a years warranty, and once we took off the 40% VAT, something the disabled don’t have to pay on aids, it came in at just £606. It was a stretch, but the chair looked great and we could just afford it, I clicked the buy button and it was mine.

This, though, isn’t the end of the story. I will tell you the rest tomorrow.

 

Please read my blog from 2 years ago today – 26/11/2014 – Naive

One of the things that goes hand in hand with living with most chronic illnesses is they are totally unpredictable, one day or even hour can be totally different from the last. This one annoying fact I think is responsible for our lose of friends early on in our illness, before all the other reasons they disappear

Trip to hell

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I’m sorry I haven’t written for a while, but life went a little crazy for me and I simply stopped doing almost everything. When I last wrote, I was full of beans and convinced that I had found the answer to the intense cold I was feeling. Ever since winter arrived, I had felt nothing but cold. Not the normal cold that is linked to the outside temperature, but a far more intense and at times, even painful cold. It didn’t make full sense to me, but I was colder than I had ever been this early in winter, and I knew I was driving Adam mad with my insistence that there had to be a draft, a vent left open somewhere, or that sealant somewhere had failed. There were a few things about it that were a little odd, but I just kept brushing aside, something I now know was a huge mistake. It didn’t seem to matter where I was in the house, including in my bed, my legs and my back were always cold. At times, it was so painful that I found myself on the verge of tears and unable to think of anything else. All I wanted was a heat source, one that was close to my legs, and my invention had to be the answer for my legs, my back, well I was going to deal with that one later.

The first couple of days that my heater was in place, I was so pleased with it, that I ignored what was happening elsewhere. After weeks of feeling nothing but cold, that warmth around my legs was magical, even though it was just during the day, somehow, it was enough. Then came the first night when I couldn’t bear for Adam to remove my socks. The night before, my feet had been so cold, that they woke me several times as they had actually become painful. I thought that my socks would be enough to make the difference, but they weren’t. That night was the first that I added my dressing gown over the duvet, trapping just that bit more heat as the cold had spread right up to my hips. It was also the night when the cold in my back jumped up from vagueness to intense. The worst of it was right down my spine, fading slowly towards my sides. Just as oddly, and as isolated, were my hands, somehow, my arms felt fine, but my hands were just as frozen as my feet. The longer I lay there, the more I was aware of the fact that when the cold was at it’s worst, my skin was burning. In addition, in my hands and my feet I had sharp tingling, yet still, I was missing the clues and blaming it all on the change in the weather.

On Thursday night things were so bad that I was up either 6 or 7 times. Each time it was the same thing, my body was telling me that I was freezing, and each time, I made some adjustment of some sort to my covers and clothing. It was one of those adjustments that actually managed to get me thinking, and to realise that it was actually impossible for the temperature change outside, to have this effect on me. I used to have thermometers in almost every room, but now, we only have two and of them, only one that I trust. I had actually that afternoon ordered a couple of new ones, as I couldn’t make sense out of what was going on. Our home has never dropped below 62 degrees for as long as I can remember, and although this is winter, according to the weather man, it really hasn’t been that cold out there. We’ve only had three nights below zero, so far. I had added two layers of clothing over the duvet trying to trap the heat and when I woke, I was still freezing, but I was also sweating buckets. Not possible, not right.

Friday morning found me still frozen, tired and weepy. When the district nurse arrived she knew almost straight away that there was something wrong with me, and when we started to chat, the tears flowed. Overnight I had pieced things together, thanks to something that happened while I was once more trying to sleep. Almost my entire body, piece by piece, started to burn and tingle. I wasn’t cold, what had been happening to me over last few weeks, was all down to my nerves and now, they were working flat out. I had already thought about calling the doctor, but I really couldn’t think of any drug that I wasn’t already on, that would help. The nurse convinced me that calling was a good idea, as there might be something that both of us didn’t know about, so I called.

Adam picked up the prescription as soon as he finished work and brought it home with him. I knew Pregabalin wouldn’t work immediately, but I honestly did feel a change that night, a good change. It hadn’t gone but the most severe effect seemed to be dampened down. Living with PRMS means your nerves have the right to do whatever they want to. I’ve gone through spells of unexplained pain, pins and needles and so on, but never so severe, and never so well disguised as something totally explainable and believable. I know from what the doctor said that it would take time, several days before I felt the full effect, but it was just so good, to not have a searing line right down my spine. Until you have lived with something like this, you have no idea, just how it can drive you into madness. I have spent the last two weeks, doing nothing but adding layers of cloth and searching out anywhere that there what the slightest chance of a little bit of warmth, including sitting against the oven, after Laura had cooked my lunch. Somehow, the change in weather conditions had triggered the whole thing, then, my body just did the rest. At the worst, I couldn’t think clearly, move or even make sense of what was going on around me, and it pulled me down and down until I had become a blubbering wreck. I just hate to think what would have happened to me, without the drugs that are still slowly improving things day by day. I can’t wait for the day that I wake up, and I actually feel the 64 degrees that my new thermometer says our house is on average throughout, and the what should be, a glorious 74 degrees, right here at my desk.

Please read my blog from 2 years ago today – 22/10/2014 – Please stop

I had my shower yesterday, after Adam reminding me in the morning, I don’t think I had had one for a week, but I can’t be sure. It was one of those odd showers, where the water was just the right temperature and I had managed to set the shower head to the exact point where water falls on me without……

Winter joy

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It’s strange the things you find to fill your days, the things you find yourself not just doing, but thinking about. Despite the fact that they say that those with MS, have huge issues with heat, I personally, also have huge issues with the cold. For some reason, this winter seems to be hitting me badly, which with a limited budget, means I find myself sitting freezing and too worried about the bills, to do anything about it. It’s rare for it to be this cold so early in the winter, we actually had our first snow the other night, something we don’t normally see before the middle of January. I know for a fact that the sudden change will be without a doubt making me feel it more accurately, but I am laired up with clothes and huddled under my sleeping bag all day long, and still freezing. At the moment, I am wearing my underwear, two pairs of socks, my trousers, a top, three thin cardigans, as thin layers are supposed to be better than thick, the sleeping bag open (safer for standing then having it zipped up) but scrunched into folds around my legs and feet and I am still cold. I don’t know why, but despite sitting in a draft free area, it is my back and my legs that are always the coldest. I have found myself reluctantly turning on the fire in the living room but counting the minutes in fear of the bills, then turning it off again within the hour, still feeling almost as cold as I was before I lit it. I know there has to be an answer, so I set too, thinking about what was needed and how to go about it.

We don’t have central heating, at least not in the way most people think of it. Ours is slightly odd to most but until this year, has been more than ample. We have one storage heater that is in the hallway and if you leave all the doors open, for normal people, it is more than sufficient to heat the entire house. I don’t have a thermometer any longer, but I used to check it closely and we normally have a temperature of 62 degrees throughout, of course, that bit higher in the hall. Over the last few years, we have improved and improved the insulation levels where ever possible and plugged every possible draft, so it should actually be warmer now than it was back then, it’s just I don’t feel it that way. Without a doubt, the worse my mobility has become, the colder I am finding each winter, so now that I hardly move at all, well-being cold isn’t really a surprise. Unfortunately, knowledge doesn’t keep you warm, but I am hopeful that having an active brain, just might.

Clearly, the problem is the fact that we have just one heat sources and that that heat source isn’t mobile. The problem was clear, I had to find a way of moving that heat to where I am sat here behind my desk. I built my desk many years ago, well built, makes it sound as though I started from scratch I didn’t, what I did was far more an alteration of purpose. I had two tables that were the perfect height to work at, both had a shelf half way down, so I removed one and placed them together in an “L” shape. Then I made a new top from pine for them that joined to two together in a way that means they can’t come apart. I then also out of pine, boxed them in along the longest side and what would be the top of the “L”, created a small shelf at the top of the “L” on the inside and waxed the entire thing to make it match the pine throughout the house. My desk along with some bookshelves sits within an alcove at the back of our living room that is raised by about 8 inches, above the rest of the room, forming a workspace that is still part of the room, but separate in feeling. So there is my problem, how to heat this area and keep the heat here, despite the fact that ceiling is 15 feet above me, and there isn’t a wall to stop the heat leaving.

The answer is actually very simple and almost free. So far I have spent only £11 and I’m hopeful I will be wonderfully warm in the very near future. I have bought one of those space blankets, not to wear, but to line the inside of the box-shaped by my desk and the wall and within which I sit. This once stapled in place, will stop as much heat as possible from escaping, they claim to capture 70% of the heat, so hears hoping that is correct. Next, I have bought a large metal tin/box, which will hold a couple of bricks and some sand to fill any gaps. I already own one of those food warmers you might have seen in restaurants which have a couple of tea light candles placed within to keep the food warm. I intend to place the tin and it’s contents on top of the storage heater at night so that it pick up and stores any escaping heat. During the day, I am going to light the tea lights and place them, with the tin on top, on the shelf under the base leg of “L” shaped desk, the candles will help to add more heat, while it radiates its stored heat, into my isolated area. Voila, free heat for the rest of the winter.

I haven’t stopped there, as once I thought of that one, I also came up with a way of getting hot food on the two days that I don’t have help to cook my lunch. I know we don’t think of storage heater as giving out enough food to cook, but they do give out enough to warm. Yesterday, I warmed up to eating temperature a sachet of lentils and salmon and a tin of soup, both safely and to a temperature that made me feel good inside. It doesn’t take much work, just putting a dish with the closed sachet inside, a mug and the tin all on top of the heater, with a hood of tin foil to trap even more heat. After an hour, I shook the tin to mix the heat through, and an hour later, carried it all still sealed and safely on my lap to my desk, where I served up and ate my lunch. As it gets nowhere near boiling there is no danger of the can bursting, but it’s hot enough to be both pleasant and warming. Both the cooker and the microwave are dangerous for me to use these days, not to mention the danger of carrying hot food around the house, and on top of all of that, this is free.

Yes, I am feeling somewhat smug about my ideas, as you get so used to feeling totally useless, that coming up with something that is easy to do and so practical, has been a personal boost. It also proves that despite being a physical wreck and outwardly a gibbering idiot, my brain is still active within its stupid shell. I’m still trying to work out what there is about all of it that Adam doesn’t like, as any time I have mentioned what I am doing, he is distinctly silent about it, in a way that says he doesn’t like it. When I ask him, he still says nothing but hasn’t shown approval towards any of it, in any way what so ever. I’m just hopeful that once I find some warmth again, I will stop hiding in my bed and will feel just that bit more able to do things again. Being this cold has the effect of making me want to stay silent, still and even preferably asleep.

 

Please read my blog from 2 years ago today – 12/11/2014 – Frustration

I know it is totally my own fault and climbing onto my stool and the the worktop, were clearly something I shouldn’t have done on Monday, but my body is really making me pay for it. I don’t know why I was so determined to fix those stupid curtains, it’s not like it hadn’t already waited several months to be fixed, but I was just seeing red and was determined that one from the list of small……

Draining daily

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The day that you reach out and you ask for help, the day when you tell the world that you are no longer coping alone, isn’t the day where life gets easier, it’s the day when life is turned on its head and will never be the same again. What I wanted, was peace and quiet. Days, where I didn’t have to think or do anything, other than sit here and let life happen. It hasn’t turned out that way at all. I know this is only the start of week two, but I’m already exhausted by the whole routine. It didn’t take any brain power, to know that last week, was going to be spent teaching (my new carer) Laura, just what was needed and how I would like it done. So exhaustion was going to happen, but this is week two and I’m still exhausted. Admittedly, Monday wasn’t Laura’s fault, but it is also the perfect example of how my days appear and feel.

Monday, Wednesday, and Friday mornings are always dominated by the fact that the district nurses are here. My mornings are always the same, a rush to try and get all my Twitter stuff done before they arrive. I have, in fact, become quite good at it. My timings and routine from when I wake to their arrival is tight, but by getting everything out of the way before they are here, it means that once I’ve had my enema and gone through the results, I can relax and recover over the rest of the day. All that pushing myself around the house in my wheelchair, to just answer the door is exhausting, but then into the bedroom to undress, have my enema and chat while we wait for it to work, then off to the bathroom, where once safely on the loo, they leave me alone, letting themselves out of the house. Sometimes, I can be there quite a while, at others, it’s not too bad, but then I have to dress again, tidy up all their bits and pieces and lock the house up again, as they can’t do anything other than leave the storm doors open. That level of activity, well it’s draining and I thought having someone here to make lunch, would mean I could relax more, but that’s not the reality. It feels as though no sooner have I settled myself again, than I am once more back in my wheelchair and active again.

It doesn’t take much brain power to work out, that few meals can be prepared and cooked in half an hour, well other than ones that go ping and generally taste terrible. So before Laura arrives, I have to prepare and sometimes put in the oven whatever I want her to finish off for my lunch. During her half hour here, she also puts together my supper and sorts out my psyllium pancake, so once she is here, she is kept busy.

As I said, Monday was an extended version and total madness for me. The nurses were late, very late. Instead of 10am, it was 11:15am when for the first time that day, the intercom buzzer rang out. Of course, I thought it was the nurse, but it wasn’t, it was the postman, I let him in and had just returned to the living room when the doorbell rang. He had a parcel for me, so once more I had to head for the door. With the parcel in hand, I went into the kitchen to start on lunch and I had just put the potatoes on and returned to the living room, when bang on 11:30 am the doorbell rang, this time it was Laura. I showed her into the kitchen and I had just explained what I wanted for lunch when the buzzer rang again. This time it was the nurses, more than an hour and a half late. Somehow I had to go through that whole process. The undressing, the enema, the whole embarrassing process with three relative strangers in my home, and be ready for lunch to be served at 12:00pm. The enema was just in when the sound of the buzzer was heard again at 11:51am. This time one of the nurses answered it, it was a delivery man with another parcel for me.

12:01pm and suddenly, I had silence. The nurses had gone, the parcels where stacked in the kitchen and Laura had left my lunch going cold in the living room, while I sat on the loo, exhausted, and I hadn’t got as far as dressing and eating. So much for relaxation, so much for help, I felt deserted, totally deserted and snowballed by life. It was no one’s fault, just coincidence, but, I felt totally drained and I was wishing that I had never asked for help. I know it was a one off, well at least I hope it was, but somehow it felt like it was the perfect example of how I feel all too often. To everyone else’s, I’m cared for and my life must appear quiet and straight forward, but to me, I do nothing that is for me, it’s always for routine, governed totally by timings and events I have no control over. From the moment that the alarm clock demands that I get out of bed, to the point it tells me that I must go to bed and sleep again, otherwise, I won’t get enough sleep to cope with the next day, my life is governed by time and others. Right now, I feel as though I’m drowning in help. I know it’s all going to settle down, that it’s all going to be worth it and life will feel normal and far better than it was, but right now, I’m drowning.

Door bells and buzzers that have to be answered, not just for people who are coming to see me, but all too often there is no one there or it’s for another flat number. Every time I have to move, for others or for me, it’s draining and since I asked for help, I don’t feel as though I have sat still for any longer than a few minutes. With every extra piece of help that is added, I’m still for just that bit less time than I was. My initial belief that help would equal more energy left for me, just hasn’t worked out that way at all. I am learning to dread the very sound of that buzzer, as no matter why it’s been rung, it’s always going to steal what little energy I have. Is it any surprise that I feel as though I drowning, as though I’m struggling just to stay awake, and doubting that the logic that brought me to this point, was logic at all.

 

Please read my blog from 2 years ago today – 03/11/2014 – A new fururefurure

I have always believed in the saying that “The first step of any journey is always the hardest”, it’s taken me years to realise just how wrong that statement is, the first step may be hard, but you can be sure there will be many as hard and some even harder along the way. It doesn’t matter how many……