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.

Here we go again

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

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

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.

Looking forward

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……

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.