Cold comfort

Posted on February 13, 2019 by livinginalimitedword

I have been trying so hard over the past week to find the time to simply write. Somehow, I have found myself unable to do even the little I would normally do in any given day. It is taking me an entire day, every day, to just manage my Twitter account. For some reason recently I’ve just been able to get up each morning, then sit here working my way through the twitter task list, that I’ve been using for years. Whereas I used to be able to be finished at around 1:30, giving me the rest of the day to sit writing, playing games or whatever takes my fancy. But now it’s been suddenly 4:30 or even 5:30 and I have done nothing but complete that task list, and I’m exhausted. I know that writing is just sitting here letting my brain drop out on to the page, but when you can’t even find that brain through the fog of fatigue, well you can’t write, moronic games are about all I can manage and I’m even finding myself frustrated by them.

So this morning, I grabbed the day and shook it into shape, even though I was up late, I was once more working well and I wasn’t letting my brain drift or disappear. Which may I tell you is really hard work. It’s far from the first time that I have gone through spells like this, in fact, they have been a constant occurrence from well before the doctors decided to give me a reason, that something I longed for things to blame them on. What I have noticed over the years is, there is only one thing you can do and that is go with them. Yes, you can shake yourself out of it for a short while, but it just comes back and your once more sinking into this quagmire that feels as though there is no way out of. So if I start to ramble, please forgive me.

I’m still fighting with the freezing nerves, it doesn’t matter how many layers of clothing I wear, at some point in every day, I will lose the fight and I’ll be in agony again. I have slowly found that the layers were actually too much. Yes, they helped my legs, but the rest of me would be pouring with sweat. It has become this never-ending game of altering what I am wearing, to deal with how things are at that second. Normally, I can wear less when I’m sat at my PC, as I have this high powered gaming machine that throws out tons of heat, sat right behind me. My legs though need those extra leggings and socks, sometimes, I’m even having to add one, two or even three wheat-bags, which I heat in the microwave. It is the evenings that I am finding the worst. I am literary strapping the wheat-bags to my legs inside my blankets while sitting in a tee-shirt and thin strappy dress. I can’t imagine that I’m cutting much of a pretty picture for Adam. Mind you, I bet he’s quite used to his rather odd wife by now.

I don’t think that my freezing nerves are helping much with my being exhausted as I am wasting so much energy daily just putting on and off clothes. I know that just going to the loo is a total nightmare. Freeing myself from the layers then sorting them all out again, often leaves my arms dead and hanging limp at my sides. When you have spent so many years just working out a routine that leaves me with enough energy to enjoy my life. It takes so little to knock this out and it’s so annoying when it happens. There is though one other factor that until the other day, never entered my head.

Due to things out with anyone’s control, mainly sickness or accidents, there have been continual changes with my carers lately. One of the women they sent as a replacement after her coming here for two weeks, I eventually chucked out of the house. She was a total waste of space and I landed up doing more and more of what was supposed to be her job. I would never have thought just a few years ago, that something so simple as the people I am used to seeing, being replaced, would actually cause me to be exhausted, but it does. The need for consistency in my life seems to be growing and I have been spoilt in the last two years as that is exactly what I’ve had. I knew on which day which people would be here, and that they come in the front door prepared to do what they always do, no need for me to stand over them, or teach them, or even explain anything to them. Now, who knows. I do know that I have lost one for good, she had an accident in December and has been trying to work ever since but has no decided to cut her hours, something that means she won’t be here anymore.

It will all be sorted out, but that doesn’t help me right now.

Winter delights

Posted on January 24, 2019 by livinginalimitedword

Last winter I developed problems with the nerves in my thighs. It was just at the front when it began, but this winter it has spread and now it covers from the tips of my toes, right up to my hips, and no longer just at the front. At first, it was just this odd feeling of parts of my thigh were colder than any other part of my body. Then came the morning when it felt just like frostbite, despite the fact that the temperature inside the house was well into the low 70’s and I was already wearing winter clothing. As I had some of those grain filled sacks that you microwave for two minutes, a safe replacement for the now old-fashioned hot water bottle, I had been sitting with two of them on my lap as well. But the cold became more and more painful until I found myself sitting here in tears talking to my doctor on the phone. I don’t know what I thought he was going to do for me, clearly nothing at that second, but he did write me a prescription for yet another drug to augment the tablets I was already on for neuralgia. It was also that call that led to my once more visiting my Neurologist. By now, I’m sure it’s clear where this is going as to be worse this winter than I was the one before, neither of them has come up with a drug that will help me. They have tried, but I realised quite quickly that like almost everything else with my health, I was once again really on my own.

It has been a real case of trying what I could to find a way to relieve it, or at least, to keep it at bay, to my surprise I had some luck. I discovered quite quickly that if I could stop the nerves from starting to tell me they were heading for frostbite, that I could keep it a level that was bearable. I decided that I was going to ignore the room temperature and pretend that I was sitting outside and what I would need to stay warm. I was sure that layering had to be the answer, as that would allow me to add or take away depending on that day’s success rate. The first thing I had to do was to buy myself some clothes. Nothing I had from my working days was of any use to me. They harked back to the days when I varied between a size 8 and 10, no use at all to my now size 20 body, the result of so many years without exercise of any sort. No, I wasn’t overeating, that was something I have always been careful of and housebound or not, I didn’t want to gain weight, but I did. It was something I had become really lazy about since I had become housebound. I had basically spent my life in a nightdress and dressing gown. Well, when you go nowhere and no one visits, what is the point of getting dressed. It was just before I started to have visits from the district nurse and my carers that I changed into wearing day clothes, but they were really simple, some might have said that was little difference as what I had bought were actually a cross over between night and day wear, possibly what my mother would have called “lounging pajamas”, but my nerves now meant I needed more. First of all, I had to buy myself a really nice thick blanket which I could wrap around myself while I sat here. I added socks and thick trousers, and a selection of tops.

There were several times last winter that I found myself, despite the thermometer saying the house was in the low 70’s, I was in tears from the pain in my legs. Despite my long flowing cardigans and my layers of anything I could put on, all topped off with my blanket, I simply couldn’t win. It was on one of those days that I phoned my GP, he changed some of my meds and added another which was supposed to help control the nerves madness, but nothing changed. It was then that I was referred back to my neurologist. Of course, it was the wrong time of year by then so your guess would have been as good as mine if the new tablets would help or not. Yes, they helped with some of the other nerve pain but the cold who knew. I do now.

They don’t. Oh boy, do they not work, I am in fact, now in a far worse state than I was last year. The cold has decided that my thighs just weren’t quite a big enough area, no it was about to take over my entire legs and my feet for good measure, plus an area near the top of my back. I had over the summer months started to wear and enjoy wearing long dresses, nothing fancy just maxi length casual clothes, which were really easy to layer up, yes I had planned ahead, well I thought I had. My winter wardrobe allowed me to have long socks with leggings, underwear, a silky underdress, with a warm overdress, both full-length and a full-length cardigan. I still had my blanket to hand, in fact, I had found myself wrapping around myself during the summer in the mornings, and ditching it and anything else I could as the heat grew and last summer it grew. Anyway, I digress, I was confident that I was ready for what winter could throw at me and what my nerves could create. By mid-December, I was already using all that I had and I was beginning to worry, I was right to. But where did I go next?

The solution, if it existed in my mind was thermal leggings, yes, they existed and I found myself as I have often lately, looking at an array beyond my expectations, with just as wildly ranging prices, write-ups, and reviews. To keep it simple, my advice is don’t buy thermals, buy fleece lined ones. Out of the ones I have tried they are by far the best and to my surprise the best are the thinnest ones to look at. They appear just like 70 denier black tights I used to wear, but without the feet. To me, they are the oddest things I have ever bought, tights that are fluffy on the inside, who would have ever guessed such a thing could be made? On there own they weren’t enough but with ordinary leggings over then, I had to be onto a winner. I also added a thermal tee-shirt and wonderful thick socks which like my fluffy tights, have a tog rating. I’m getting old, I thought tog ratings only came with duvets, what next? When I laid my clothes out on Saturday to put on after my shower, it looked as though I was packing for a weekend away, not to simple wear all at one time, in the house, not the North Pole as my carer laughingly said.

Last night, I found myself once more wrapped up on the settee in my blanket, with the fire on and a heated wheat-bag inside my blanket on top of my feet, to which I had added a third pair of socks. The cold was once more intense and even with all that on, all I could think about was just how cold I was. When I went to bed, I was hopeful that all would be well, as I planned to have my electric blanket on low for the whole night. An hour after going to bed, I was still awake and although the backs of my legs were fine, lying there flat on the electric blanket, the front was unfortunately cold, there was nothing to hold the heat on them other than the duvet. I landed up with leggings and socks on, plus my dressing gown laid on top of the bed, to lock the heat in. How long before I’m fully dressed, even in bed?

Looking forward

Posted on August 9, 2017 by livinginalimitedword

We have made so much progress in the last few days. On Monday the house looked as though a bomb had hit it. We had old stuff waiting to go and new stuff piling up waiting to replace it. The furniture that I ordered has arrived bit by bit, and bit by bit, Adam and I have either constructed it or positioned it just perfectly. It was the dining area that was the worst, it is small with one table and chairs in it, with two, it was impassable. One of the things that was in that pile, was the old NHS bed elevator. I can’t even remember how long I have had, but all the time it was on our bed, it had caused this ridge down the middle. I don’t know if you have ever slept in such a bed, but the result is that you move slowly to the outside edge then spend the rest of the night hanging onto it. Until now, we had had no other option, but Mums money has meant that I could source and buy a new one, one that wouldn’t cause that dreaded ridge. The problem was caused by the fact that the old one was made of steel tubing, reminiscent to the backrest on an old hospital bed. The new one is made out of box tubing and it, is, totally, flat. Even the way that it extends means it still remains flat, regardless what size of bed it is on. I even watched a video on YouTube to be sure it was right before clicking the buy button. Now it only has to arrive for me to be totally sure, but whatever it is like, it can’t be worse than the one that just left through my front door.

All my life I have over and over again said just how much I hate shopping. When I first said it, there was no other option than to trawl through shops, which were over crowded for my taste, even on a week day. All those people use to drive me up the wall as I hated shopping so much, that I turned into someone who had the item I wanted in mind, headed for it like a missile in flight, not once looking at anything else that was on offer all around me, I bought whatever it was and flew straight home again. I was delighted when online shopping appeared, and I was one of the first to use it. For the first time, I discovered that shopping could be fun, that finding what I wanted was easy and best of all, they delivered it to my front door. Unfortunately, that statement is no longer totally true. There are now so many sites out there that it is actually becoming harder and harder to find what you want. Not even Google can now hone in on some things, especially not those slightly different items. It took me one whole day of searching to locate three royal blue and gold key tassels and another full day to find the cord that matched them so that I can make new pull cords for the new living room blinds.

I haven’t just been buying things for the house, I have bought myself a couple of things to make my life easier. Firstly the bed elevator and secondly, another item that should be here soon, a new blood oxygen meter. There is in some ways, nothing wrong with the one that I have, but it is so simple and all it shows me is what is happening in that second. It doesn’t save any of the readings and I can’t download them for later use. Whatever I learn from it is quickly gone as my brain just won’t hold the information and I can’t show it to a Doctor if I have any concerns and right now, I have a big concern. Those that have been reading for a while will know that I keep finding myself sitting on the side of my bed in the middle of the night with no idea why or how I got there. So far the doctors have been useless in finding out what is going on. Sometimes I find myself unable to pull myself in the conscious world long enough so that I can just lie down again. Recently though, there have been a couple of times when I have woken sitting up, with the vague feeling that I didn’t breathe until I got there. I have been left with the idea that maybe, just maybe, it is because my blood oxygen has fallen so low that my body has acted by moving me into that position.

Whenever I have checked my oxygen during the day lately, it has never been above 89%, often showing as low as 84%. My consultant has said in the past that those aren’t levels for me to worry about, but back then, those type of readings were occasional, now they are all the time. Our oxygen levels naturally drop when we are asleep but I have no idea how low that drop is, so I have bought a meter that has a 24 hour read out and I can down load to all to my PC. I have been looking on and off for one but they were all over £100, some over £1000 the sort of money I didn’t have. Just because I have some right now, I still wasn’t happy about spending that much so I went on a search. It turned into another long day. By tea time yesterday, I had found one, and it was closer to what I wanted to spend, just being £56, but it was that time of day, where I always switch this machine off and become social. This morning, I completed what I always do when spending money, I copy pasted its name into Google. Sometimes I do it mainly to see reviews from other users, but always because I believe in just checking before I buy, that I have the best deal. I was surprised to find the exact same one priced as high as £170, quite a jump but it often happens. I was though delighted to find one company selling it for just £24.50. I bought it straight away. It just shows it’s worth double checking, even if you don’t think you can afford it, check, you might just be able to. If I had found this months ago, I would have bought it there and then, but I didn’t. Maybe in future, even when I think something is well out of my range, I will make sure, before putting the whole idea out of my mind.

Busy, busy, busy……

Posted on August 3, 2017 by livinginalimitedword

Right now I feel as though I am on a playground roundabout, clinging tightly to the central pivot to stop myself being thrown off. There is so much to organise and to make happen in the next month that my brain is now throwing me from one job to another, it’s not even taking a proper break at night. It all sounded so simple when I said I’m going to spruce this place up again and make it the way it should be, now part of me wishes I hadn’t even thought about it. So yesterday, I decided to try and put the brakes on, to bring the whole thing down to a pace where I can at least get my head around each step. Apart from the delivery of all the stuff I have bought, nothing major is going to happen before the 21st of this month. I desperately need time for my mind to accept everything before the big push arrives. I never used to be like this, in the past, I was one of those people who once I had an idea, I made it happen that day, or if not, the day after. Now I need the time to build myself up, to settle my brain and calm down this feeling of impending doom that has taken over my life. In fact, when the decorators asked if they could start later this week, I could feel myself starting to shake inside. That was despite the fact that Adam and I had discussed it all the night before and he had already in his head, that I would need him here when the work was being done. I was so relieved when he said that. Fortunately, his boss has been able to give him the time off.

It seems that everyone who is involved in my care, all know me too well. It wasn’t just Adam, my nurses, and carers when told them of my plans all instantly asked how I was going to cope, and all looked relieved when I gave them the answer. It’s odd how we get these ideas in our heads that we are still just like everyone else and that no one but us knows the problems we live with, especially when it concerns those things in our heads. Then something happens and it turns out we aren’t people, we are books and everyone around us has read every page of us and some, everything that is written between the lines as well.

I don’t need any of them to tell me that I have been pushing myself too hard lately. I started by making what was, in fact, a horrific list of everything in this house that needs fixing or replaced. Until I found I had the funds to do something about it, I had somehow managed to know about all of it, yet sort of ignore it as well, as what could I do about it. Now every tiny thing on that list is real and growing in my mind by the second. I can’t even sit still here at my computer as I see this or that or remember I still haven’t done that other thing. I have been web surfing like I have never surfed before, trying to get the best deal on all that we need. In some cases, it has just been a case of trying to find what I need. It is amazing how some of the simplest of things, turns out to be the most obscure. Without a doubt, it would all be a lot easier if I actually had a brain. Just sticking to one task and completing it is hard as I keep thinking of another, or panicking that I just did the wrong thing. Every day when Adam gets home from work, he stands here telling me to slow down and calm down, as he can spot it the second I speak, As a result of my perpetual muddle, my speech is now also all over the place. Even his telling me how well I have done, and that it will all work out and be OK doesn’t really have the effect he is after, my racing brain doesn’t listen.

My panicked state isn’t only down to all that I am doing. My brain has put itself on high alert, there is this feeling that any minute, the one thing that could destroy all my plans might just happen, that I could be thrown into a flare. It has been my experience that this is exactly the sort of time when my body suddenly decided to do something horrendous to me. I have become hyper aware of every spasm, twitching or pain that it picks to throw at me without warning, and the ticking time bomb that all with an illness like mine lives with, seems, to sound just that bit louder. Irrational, well yes I suppose it is, as I have nothing other than fear and sod’s law to base it on, but I can still hear that ticking.

It’s time

Posted on July 25, 2017 by livinginalimitedword

I’m heading out on another of those journeys that I find I have little choice over as it quite simply has to be taken. A couple of weeks before I took my break from blogging, my mother died. It wasn’t unexpected as she was a rather elderly and unwell woman. What did surprise me, was that she has left me some money. I believed that because of the way our relationship had been over the years, I had expected she would have totally written me out of her will, just as she had told me years ago, she had done to my elder brother. It turns out that was just another one of the hurtful things she said, rather than acted on. She chose to leave all of her four children, exactly the same as each other. If she had died four years earlier it would have been a considerable amount, but almost everything she had, has been swallowed up paying for her care over those years. What we have each been left is still a wonderful gift and one I never thought I would receive.

Like everything in life, closing a persons life, doesn’t go as smoothly as anyone would think, and it has taken until now for the money to actually be on its way to me. The delay though has allowed me time to actually think about what I want to do with that money. Not that it was actually that difficult. I have decided to spend it on repairs and redecoration of our home. Some rooms haven’t been painted since we moved in here 17 years ago, the most recently done was the bathroom 7 years ago when we were forced to change the entire room so that I could manage to have a shower. It was always me who did all the DIY. I had been doing it all my life without a seconds thought, it was there to be done, so I did it. 10 years of being totally useless and another 5 on top of being almost useless, well the results are not clear to see. The whole place desperately needs attention and at last, we can afford to actually do it. Along with other jobs like getting the curtains cleaned and small bits and pieces being fixed through out the house, all equally long over due.

It all seemed like such a good idea when I first thought of it, but my doubts have grown precisely to match my excitement. I guess that it is a female thing this making our homes, our personal nest, something I did years ago before I became housebound. I knew that one day I wouldn’t be able to work, so it all had to be perfect. When I look around the flat now, well it makes me feel as jaded as it is. I know nothing lasts forever, but I never thought that I would have the opportunity to do anything about it. I have decided that I am going to simply have them redo our home exactly as it is. No new colours, nothing changed too much as that would mean changing everything else as well, and my mother didn’t leave enough for new furniture, carpets, and curtains too. It is enough though to fix all those little jobs that have been piling up because I can’t do them. Like the last three doors in the hall that never got rubbed down and polished to match the other three I did. Or the dripping tap in the bathroom, which Adam is too unsure about what it takes to have even tried. Or the flooring in the kitchen that has gaps where some tiles have slid and bear patches caused by my electric chair. Or the sealant around the windows that have discoloured and needs changing. Luckily, there is enough to do all that.

On the surface, it all sounds wonderful, but there is one huge problem, me. You just have to read my previous post to know exactly why that is. How am I going to manage all those strangers in my home? Yes, this is another one of those joys that chronic illness brings with it. I have been longing for years to have the house redecorated and to be honest, Adam isn’t the person to do it, but like any other house proud woman, this has been a dream of mine for years but it is equally, a total nightmare all rolled into one.

I have spent several hours over the last few days online, searching for a company to undertake the work, which has good reviews and so on. So far, I have spoken to 5 different companies and two of them, have actually been to the house to take a look at what needs doing and to give me a quote. A few years ago I would have approached this whole thing differently as it is no longer just about the quality of the workmen, it is also about finding a company that is happy to undertake the work and willing to work around my medical needs as well as my irrational routine fixation. I had initially had this dream in my head that I would be able to find one company who would do everything, my searches have shown that dream to be impossible. Although, I am hopeful to have brought it down to just three rather than streams of them. Either way though, this will mean a lot of people in and out of my home for several weeks. I am thinking that it might be a good idea if once I have a complete timetable of who is here and when that it might be a good idea if I asked Laura to come and sit with me at least once a day to help keep my anxiety level just that bit more settled. Not just for me, but for those who will be around me.

Despite all of that, oddly, I am looking forward to all these things being completed, to actually having a home I can wake up in daily and be proud of again. I know without a doubt that the way it has deteriorated has played a role in my not wanting people here, even those that I’ve really needed. I have been ashamed of it, as it just isn’t my home as I remember it, the way it was when I for the very last time, I closed my front door behind me. I also know, that it isn’t just me who will be pleased to see all these things done, as Adam has said often that he feels the constant pressure of all those things waiting for him to one day find the time, the money, and the skill, to fix. As I said at the start of this post, I never expected to be left a single thing, but thanks Mum, you have left both Adam and me exactly what we both really needed, but you have also left me a future living nightmare.