Author Archives: livinginalimitedword

About livinginalimitedword

About 30 years ago when I was a young mother I became aware of spells of feeling exhausted, at times confused, bad spells of dizziness and pain all over the place. It would go away and then come back making life impossible at times and no one could tell me what was wrong. Each time it reappeared it was worse than before and always left me with either a new symptom to live with or one that I already had was worse. Every Doctor I saw in the first 17 years dismissed me and told me there was nothing wrong because, by the time I got an appointment with a specialist, I was better. In 2000, there was a sudden change. It started just as all other spells of illness had, but it was going on and on. I decided to demand an answer, it took a year, a year were it never went away and a year to continual tests. 2001 is marked by the news that I have Multiple Sclerosis. The toll it has taken on my life is now clear for all to see, but I am a fighter and although housebound I am still fighting. This isn't a medical site this is an ongoing story of me, my health, and my health.

Cold comfort

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23

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

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14

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?

Here we go again

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26

I know that I have been saying for quite a long time now that I am going to come back to writing, but it somehow just didn’t seem to happen. Days passed one by one and when you live in a world where every day is the same, they pass all too easily without even knowing that they have. I seem to have slowed down in everything that I do, it’s not intentional, but it doesn’t matter what it is, I’m slower at doing everything. The routine that I live too, just a few months ago always left me the afternoon to play with, which was often just what I did, I played games on my PC, now if I find an hour at the end of my day to play, I’m lucky. It is that more than anything else that has held me back from starting to write again, where was I going to find the time? I still don’t have the answer to that, but I have woken up to the fact that if I don’t write again, I probably never would and I couldn’t have that happen. I know already that each post is going to take me days to write, not just a couple hours, so please don’t expect to find them pouring out and appearing on every day, that is not going to happen, but I am back and I will write when I can.

Originally what caused me to stop was I honestly needed a break, but I had every intention of starting again after the New Year, I never thought it would be the New Year after that one. My plan was destroyed as I have been really not well for the first five months of this year. It actually all started on December 31st when I went into a flare. Unfortunately, it was a rather dramatic start to the year and even just as dramatic to witness. It was the worst flare I’ve had for a long time and it was one that I couldn’t hide from Adam. It left him very panicked and scared of what was happening to me. I was shaking and having extreme spasms that were making my breathing difficult at times. I’m normally really good at hiding all those things, other than when my body shakes, that’s impossible to hide. Adam has never been good at handling anything extreme, he is one of life’s worriers and incredibly good at assuming the worst. I’m not sure who took longer to feel normal again, him or me, but we both eventually got there, just for me to lose my voice. And so it went on, bouncing from one thing to another, struggling to find my health and somewhere along the line, my brain started to slow and I was struggling trying to just keep up with my daily routine. Trying to fill in all that has happened is almost impossible as I honestly can’t remember many of them, but they will become part of other posts as things happen to jog my memory.

One thing that has happened, is I have returned to seeing my MS consultant. Just after I became housebound, I stopped going to the hospital. I knew they would collect me by ambulance, but the effort it took and what it took out of me, just to have him listen, nod his head and say he would see me in a year, made it all seem pointless. Because of the unusual problems, I was having with sleeping, I feared that I had a large new lesion growing in my brain close to my sleep center, my district nurse said it was possible and that even if not, that I had to have it looked into. I know I have written about it in the past, but I had started finding myself sat on the edge of my bed in the middle of the night, unable to wake up fully and fighting with myself to stop myself falling to one side or the other. When I did wake properly, I always took myself to the loo and went into the kitchen to have a cigarette, but I was falling asleep in one or other places as well. Adam was having to come and find me and take me back to bed, with the whole thing to happen again a couple of hours later. They sent me for an MRI which showed that my hunch was wrong, I had thought there was a new lesion around my sleep center, but now that he had me back in front of him, my consultant started to actually help me with other things that he had before ignored. He changed some of my meds and has started me on a new one to help with the spasm which grow in number throughout the day until in the evening they are so tight and painful I don’t know what to do about them.

The first drug we tried I didn’t last long on, even though I only took half a tablet slowly built up to three times a day then increasing to whole tablets, by the time I reached two whole tablets and one half, I started falling, often. I’d found I had to be really careful and I had to think and concentrate every time I stood up. It was so bad one night, that I landed up falling backward into one of our units that is filled with part of my crystal collect. Only one glass was broken but I was hit on the head by a decanter. I refused to take any more. Luckily he had suggested another to try if I had problems and this second table is working well. I have to take it four times a day but I am happy now on two whole and two half tablets without issue and I’m holding there as their effect is good and I don’t feel I need anymore. So far my return to the consultant’s care is working well. We will see how things go, but the first smiling nod will see me pulling out again as there’s no point going if I don’t need to.

Through more tests, it was discovered that my night time adventures were being caused by a form of sleep apnea, one they can’t do anything to help with. Apparently my the fault lies with the signals being sent to my lungs from my brain, it seems to forget every now and then that I need to breath. Adam had said several times that he thought I was dead, in fact, he twice woke me up as he couldn’t wait any longer for me to actually take the next breath. The good news is, my brain does work it out, that’s why it keeps making me sit on the edge of the bed. Somewhere in my head, I know I have to breathe and I’m doing all that I can, to make it happen. So here I am with yet another condition to add to my ever-growing list.

The other biggy is more recent and at this moment still active. On the surface, it doesn’t sound like much when I say that I have a UTI, it’s just this infection has been live now for, well neither of us can really remember if it’s 10 weeks or 12. I have been on different antibiotics the whole time. Every time I finish a course of them, some of which have been for a week other totaling three weeks, with a gap of a couple of days between the first and second attempt. Every time I have finished a course of them, within 36hours the stinging starts all over again along with terrible pains in my lower stomach and I send in another sample for testing. Each test results, show a different bacteria than the first did and we start all over again with another attempt. It is driving me mad, but what can the doctors do, nothing really. Even if he sent me to see a specialist, they would do exactly the same thing, run urine tests and put me on antibiotics, so there is no point making the trip.

I promise I will be here within a month, probably a lot, lot sooner, For those of you who follow me on twitter, well all you have to do is look out for the blue lady from my home page, to appear in my tweets about #chronicillness, that will signal that I have made a new post that day, so keep your eyes open.

I’m here

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22

I thought that I should add a quick post just to reassure those who kindly worry about me when I disappear unannounced, that I am still alive and as well as possible. The last few weeks have been none stop and totally exhausting. Every time that I have dared to think that we are heading towards the possibility of normality, yet another workman or disaster has entered our lives. What I dared to think what going to be a ten-day whirlwind flying through our home, still hasn’t left.

Before I embarked on our grand plan of restoring and updating our home, I thought that I had every little detail planned. I just hadn’t planned for just how stressful the whole thing was going to be. Honestly, I would far rather move house twice over, than go through the last two weeks again. I wasn’t stupid enough to think that it would be stress-free, but there was a new form of intense stress that I hadn’t allowed for. My plans hadn’t allowed for the fact that I would feel an ever increasing guilt on top of all of it. When you are stuck in a wheelchair, inside a flat that is already tight to navigate, having ladders, pots of paint, tool boxes, and wrinkled dust sheets obstructing even the simplest trip and back makes life hell. Constantly having to ask people to stop whatever they were doing to move this or that, or to assist me, slowly pushed me into the position of trying to hide all the time, but when hidden, I was having to ask Adam to fetch and carry for me. I felt like a useless lump that was quite simply a burden and in everyone’s way. With every new drop of guilt, the stress levels rose and I was constantly on the edge of either screaming or crying.

The actual painting only took four days, something that still amazes me. Adam has been a wonder, not only was he stripping rooms of all the contents, relocating them in another, but he took on the task of washing every ornament and piece of crystal, which I have rather a lot of, before putting them back to where they came from. While I did nothing, except for getting more and more tired, something that I still am. Oddly, it didn’t end when the painters left. Yes, our home was freshly painted and more vibrant than I have seen it for years, but a week on from their departure, we embarked on having the kitchen floor replaced, another task that sounds easy, but stretched over two days rather than one, with a weekend of nothing in between. Each and every day of which, meant the kitchen was out of bounds. Tomorrow heralds the day when I will, at last, have access to the whole of our home for the first time in two weeks. Despite the fact that I am desperate to set to putting the whole room back to how it should be, I honestly don’t think that I have the energy to do the one thing I had planned all along as my job, sorting out those final touches, that makes it our home.

As we cleared each room before handing it over to the painters, I took the time to thin out my crystal collection. This, of course, means I have to rearrange everything. I was really looking forwards to it, now, I just feel over whelmed by it. It doesn’t matter how much I have slept in the last days, tiredness has taken over and I feel as though I could sleep forever. Physically, I have spent two weeks doing nothing, yes, mentally, I have been stressed to my limit so here I am feeling, even more, guilt as Adam rushes around after a full day of work, trying to do what I should be doing. The work isn’t over, but we are taking a break to get what is, right, before we find and have laid a new hall carpet and the new curtains for the bedroom. Every single thing that I have bought or paid for to get our home sorted has been documented, so if asked, I can show where my mothers money has gone. I did though allow myself around £400 to spend on some picture for both the bedroom and dining area, extravagance they might say that wasn’t essential, but to me, they are the things I didn’t get from her as objects. Not that she would have had them in her home, but memorials if you like. In a few years, the house will need redecorating and flooring replaced, but the pictures I bought, will still be with me.

I promise that I will write again soon when I will hopefully have more energy, and the true inspiration to write rather than a dashed off, slightly muddled note.

Counting the cost

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23

I have been having the strangest feelings lately. I keep looking around our home and all I feel is a sense of sorrow, I feel like I am seeing my home for the last time. I know that is silly, but almost every room was decorated by me, my choice of colours and mainly my handiwork. In just a few days someone will be here hiding it under a fresh coat of paint and what “I” did, will be gone. Yes, they will be painting on the colours that I have chosen and they have promised, to protect the three-inch border that I hand painted around our bedroom, and not to touch the paintwork in the living room that I spent so long making look as though it was painted 100yrs ago, and no-one has touched since. But it’s still not going to be the home that I put together, it will be different.

10 years ago, I was locked away from the outside world and I doubt that there will be many out there who even remember that I existed. Now, somehow, it feels as though I am starting to be erased from the small part of this world that I still exist in. I know that is so silly, but feelings are the most illogical of things, and once these guys have finished, it will still be my house, just a little less “my” home.

Right now we were supposed to be in full painter mode, and it’s not. Everything went on hold late last week when I had a phone call saying that they wouldn’t be able to start on time, due to the job they were doing being mainly out doors and thanks to the weather, they were way behind. We have had nothing but rain for the past two weeks, but no matter what happened they will be here next Monday. The week’s delay is in some ways a huge pain in the butt, but in other, has allowed us more time to do silly bits and pieces that once completed would allow the work to proceed more smoothly. When I say work, I really mean Adams work, he will, after all, be the one who will be moving stuff around so that the painters can move from job to job.

John, one of the owners of the decorating company was here this morning and I am finding myself once aging starting to panic about how it is all going to actually work. We have so much stuff and a huge proportion of it is breakable. It’s as though I hadn’t really seen it until now, which I know is stupid, but until now, it was more something that was happening somewhere out there, one of my dreams not something that is real, something that is actually about to happen. Oddly, the more real it gets, the sicker I am feeling and I do mean sick. I have even been waking up at night feeling as though I was about to throw up, and I keep desperately wanting to go and lie down on my bed. I’ve looked for other reasons and I can find none. It has to be a prolonged panic attack as I can think of nothing else that could be causing it.

I can even pinpoint the day that it started. I had invited a few handymen to come round and give me a quote for some smaller things that needed doing. The second guy was great, really friendly and gave both of us the confidence to say “Yes, you are the person we are looking for”. We arranged for him to be here this Thursday as painters wouldn’t be here, and then I mentioned we also needed a new floor to be laid in the kitchen and what roughly he would charge for the job. Before I knew it, I was agreeing to him being back here the Tuesday after the decorators leave, to do that work as well. Slight problem, we hadn’t even chosen the floor we wanted. By teatime on Sunday, we had chosen it, paid for it and the stuff required to fit it. I know it hasn’t, but that kind of pressure is exactly the pressure I have felt bearing down on me since the money left to me by my mother, hit my bank account.

I don’t know a single chronic illness that isn’t made worse by stress, but even our governments seem to be out to make sure we have loads of it. Part of the problem is being caused by the fact that I am on benefits. If you receive an inheritance it can mean losing then, until you have used it all to live on. There are though certain things that you can do, that will be accepted and not seen as trying to rip off the country. Our case, of using the money on household repairs and decor that hasn’t been touched, due to not having the funds as I don’t work, is allowed. We have only been spending on things that were either dangerous, as in the kitchen floor and replacing of tatty rugs, repairs such as the plaster that is at this second held to the wall by a thread in both the living room and kitchen, and making what was a dumping area into a useable space, are all OK. As are of course the medical aids I bought, Once it is all done, well what is left over the £6000 we are allowed to have in our bank accounts, will go to paying off another chunk of our mortgage, also allowed. But the pressure of documenting everything, keeping accounts to show what it was spent on, is just another pressure I could do without. It has to be done though, just in case someone asks any questions. Nothing is easy for us, the second we are too ill to work, we aren’t allowed to have anything that is private, especially not our finances. I’m just waiting for the day they want to install web cams, just to make sure you’re really as ill as you say.