Living in a limited world (an introduction)

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The truth of our worlds?

I started writing this blog in 2011 on another site that is now closing. So here I am complete with the past and heading into a future I am happy to share with you. I suspect like everyone else when they start to blog, they believe that it will just be a few lines every now and then, the truth for me, has turned out to be something else completely. I write daily, so this is a full and detailed account of living with chronic illness. The symptoms and what they do to me, not just physically, but emotionally. The impact on everyday life, not just for me but my husband, and of course, on our marriage. I am now in my 50’s, but I was just 21 when my story really began, although it took nearly another 20 years for the doctors to work it out.

When I was a child, I thought a good life meant that the sweetie jar was always full, and no one told you when to have a bath. It’s odd how life just takes hold, and nothing is ever what you first believe it to be. I chose the picture above, to sit here, as it is all about belief, it’s truer than most think it to be when they first look at it. Take a good look, then ask yourself honestly, which is your view of people with chronic illness? If it fits any but the last, well prepare yourself to see that side and more, as I hold no punches, and you may find out things, you don’t really want to know. But unless you read, you will never understand and understanding, is such a small thing to ask, and that is all I and others with a chronic illness really ever ask for, a little understanding. My blog is a picture of my life, there are happy, sad, funny, painful moments, lessons I learned and things I’ve discovered. If you leave here with nothing else, please leave with a touch more understanding at the least.

Relapsing Progressive Multiple Sclerosis took over my life and slowly, I found myself housebound, with a list an ever growing list of conditions. My collection is a list as long as my arm, the more they really looked, the more they really find. Being housebound isn’t an easy place to be at first, but with a little time and planning, it has become my sanctuary, where I live and live well. I am happy, I am more than happy, yes, you can enjoy life just as much as ever, and still discover new things about yourself, and others, without leaving your home. If you follow me on Twitter, you will know that my bio has one strong and true statement within it ““Being housebound is no worse than being earthbound”” It’s time for you to understand that statement, please enjoy reading my daily blog.

If you really want to start from the very beginning, well follow this link for some not so well-written entries, yes they do improve, I learned to write along the way: My first post from January 2012

It’s time

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.

The facts about people

It still feels like every day is 10 hours too short and that I am no sooner out of my bed and I’m back there again. It has been such a strange week for me as Laura, my main carer, has been on holiday and I have had the joy of trying to get along with a complete stranger again. It could have been worse, as they wanted to send me not one new person but two, as Maureen, Laura’s replacement, couldn’t cover all the days. I quite simply couldn’t face that. The stress of one stranger had been more than enough, and I couldn’t face the idea of yet another one so soon. I know that to some that simply doesn’t make any sense. What could possibly be so difficult about having another person here to look after me, especially when there were several days separating them? For me, that’s a complex thing to answer, as it is a feeling that has appeared over the last few years. Having to say “no” to the agency was a simple to justify in my head. What is the point of having someone in your home to do things for you, when you have to be with them every second telling them what needs doing and how to do it. As Maureen was to cover all the other days, well that made sense, but someone else for just one day, that made none. It is the other part that is really so difficult to explain.

I have almost always found both strangers and crowds difficult. Which OK sound strange from a self-proclaimed extrovert. If you had seen the way I dress and acted back in the early 90’s, well you would never have guessed that inside that gregarious DJ, was someone who was shit scared nearly all the time. I had learned that if I put on a show, that that act allowed me to not show the truth. My work protected me from everything else, not just because there were bouncers all over the place, but my DJ booth meant I lived in a perfectly protected zone, one that no one else ever enters uninvited. Admittedly, those 7 years of working as a DJ allowed me to be the most extreme version of me, but that act started long before and still goes on to this day. When I don’t know people, and I am forced to be around them, well I panic, I get into a muddle, one that my health has now made so obvious, that I can’t bear having to go through it at all. These days I stutter, get wound up, drop things, forget not just my words but what I am doing and far more. It hurts, really hurts to be exposed in that way. This is the reason that I go nowhere without Adam by my side. But asking Adam to come home, to protect me and to keep my carer in line, well that would have been really mad.

I have often wondered if it is just me that has found that living with a chronic illness somehow magnifies all the quirks of our personality. Mind you, for me that is hard to know really which is which, as I was 21 when they think that this illness first got hold of me and who I was before that, was a child. But my inability to deal with strangers is something that has really grown over the years and the idea of being caught here in my home alone with one, that really freaks me out. It’s crazy, I know that, but emotions are always the one thing that none of us have total control over.

When Maureen arrived on the first day, well there I was all smiles and ready to show her how everything worked and what I needed her to do for me. What she didn’t see was the wreck who had been building herself up to being able to just say “hello” for the past few days. Once I had shown her everything, although I was only going to have 5 mins alone, well, I couldn’t get out of the kitchen fast enough and back through here to hide behind my computer while she finished things off. On day two, I let her in and hid straight away. Why I thought she would remember and get everything right without me, I don’t know, but that was my hope. I was of course wrong. She kept appearing in the living room to ask this question or that one and after she left, I found mistakes all over the place. She is due back tomorrow to make even more mistakes, as I simply can’t deal with the idea of taking her through it all step by step again. I will mention the biggest ones but I am still going to let her get on with it as I’d rather have shoddy than spend another half hour shaking and stuttering as I lose track of everything else again. When my health didn’t get in the way, didn’t exaggerate my every action, I would have acted my way out of this mess, but now, now I just hide and count the minutes until the whole mess is over with.

It took me about a month to totally settle myself to Laura, but it did happen eventually, and now, I fear the day that she will tell me she is moving on. I know it will happen, as she is a bright intelligent woman who has a degree and without a doubt, one day she will see that she really could be doing something that actually pays her a decent living wage. It is so wrong that our carers are paid so badly. I can’t afford to employ her directly and anyway I don’t need her 24/7. So I know the day will come when I have to face having to start all over again and I so hate that idea, especially after this week.

Laura has told me several times that she really can’t manage all the bills on what she earns. So in a bid to keep her here as long as possible and to help her out a little financially while Adam was unable to do the housework, I employed her several times outside of the system, to clean our flat for us. When I told my friend Jake all this he suddenly came up with an offer of cleaning work for her, from one of his friends. They told their friends and the ball started moving. She is now cleaning three of his friend’s houses every week. Money in her pocket on top of what the agency pays her and hopefully enough to stop her thinking of leaving me yet, but I’m not stupid enough to think it will last for ever. Well, nothing ever does.

I’m back

It has been some time since I last made an addition to my blog and I apologise to any who have been fretting as to my well being. I assure you all that I am fine, I quite simply found myself suddenly not wanting to write. Every time that I tried, and believe me I did, nothing came out, there was nothing there. After 5 years of constant updates, not only did I have nothing to say, but I had this great desire to simply take a break, to not write, to do anything other than that one thing, so that’s exactly what I did. I never intended for one second for it to be as long as it has been, but what is it they say about best-laid plans?

The first couple of weeks went just as I thought they would. I found silly games to play online until I found one that pulled me in and suddenly I was addicted. Days passed with easy, so much ease that it was almost scary. I think it was around the start of week three when Adam suddenly had an accident that damaged his back severely. It wasn’t like he did anything that you would expect to cause such an injury, he simply stood up from sitting on the settee and that was it, he was in excruciating pain. He couldn’t stand, he couldn’t sit and he couldn’t walk without pain like he had never known before. Suddenly, he was in my world.

Like many out there, he thought he knew, especially as he had witnessed what has been happening to me, over the past 17 years, exactly what chronic pain was. As each day passed, the pain he was in was wearing him down but still his admiration for the way I cope grew, yet oddly, he was reluctant to take any of my advice. Just as I once had been, he was determined to work it all out for himself and I became more and more helpless just watching him struggle. Unlike me, Adam has this thing about not taking tablets. For as long as I have known him, it has been a battle just to get him to take an aspirin, convinced that it would do damage far worse than what it would cure. It was the middle of week three, and only because his doctor had prescribed them that he started to take high levels of ibuprofen and codeine, but only when the pain was at it’s worst.

Adam has been my carer for so long that finding myself having to care for him the best I could, was hard. Not the caring bit as I totally love him, but there is so little that someone can do from a wheelchair to aid another, especially someone who is finding it hard to walk. Yes, because of my electric chair I could do much of the running around in the house, but I was totally unable to support or aid even one of his steps where ever he had to take it, and the emotional support that he needed was draining. My energy levels aren’t great and when you have to repeat over and over again the same things you said just an hour ago, well I simply didn’t always have the patience he needed from me, and he needed a lot of it. I found those five weeks of holding him up, amazingly hard work. Not too surprisingly, there were a couple of points when I did snap, like the day through his tears he said: “What am I going to do if I can’t ever walk again?” I did kind of go through the roof on that one, but I think I was justified.

After weeks of physio and doctors prodding and checking, he is now fully mobile again, but the support is still going on as they discovered halfway through his recovery that he has high blood pressure and I do mean high!. He had been at work when he started to feel really ill and he phoned me to tell me what was going on. He’d only been back at work for about a week, but all I could do was tell him to speak to his boss, then come home. It was over an hour before he phoned me again. His boss had called one of the nurses to his office and she had taken his blood pressure. Straight away he was sent out to the main hospital in Glasgow for an ECG, why that couldn’t be done in the one he works in, I still don’t understand. By the time he got there, it had lowered, but was far from low enough.

We have been going from one medical disaster to another, mine being fitted around his as they occurred. As I said, don’t worry, I’m OK, for me, it was just all the normal stuff that makes up my life, but finding the time to relax or to rebuild the energy that I needed to get through each day, has been hard and sometimes impossible. At times I have been so tired that doing anything other than playing those banal games, has been totally beyond me. I have sat here hour after hour, connecting numbers, stacking different sized boxes, eating snakes and all those other free games that are out there. I have sat here quiet simply happy to let the hours tick by and looking forwards to when I could next just go to my bed and sleep. Because Adams health has generally been so good, I had forgotten what it was like trying to be me alongside being his carer. I know there are a lot of people out there who do this daily, handle their own health along with that of their partners, but it’s all new for me.

High blood pressure is a chronic condition that can be handled with ease by taking medication. Not something that Adam finds easy and has no intention of doing for the rest of his life. He knows that he has to lose weight, something he is doing well at, he is already over a stone down but upping his exercise levels isn’t going so well. I am finding it so hard not to nag him, as I know he doesn’t respond well to that, either mentally or with the level of his blood pressure. I can see now that he has probably had this problem in the background for a while as trust me, I can see when it flares. I know that if I could just get out there with him, go swimming with him or just on long walks, that it would be easier for him, but I’m trapped here in the house unable to support him any more than do. I am such and easy excuse for him to use, as doing any of those things that are good for him, would mean leaving me behind and once again alone and he doesn’t like that. Somehow we will work it out, we always do.

So now you know what has kept me away. What was supposed to be a short restful holiday, has been anything but, but I’m back and I’m happy to be here.

 

 

It just keeps coming

When you live with a body that never gets things right, well, eventually, nothing ever surprises you. Doing something incorrectly is as second nature to my body, as breathing is.

If you live in Scotland and you are aged over 50, every two years they send you out a bowel cancer test kit. All you have to do is supply a smear of your stools, from three separate dates within a ten day period, then post it back to them. It’s that simple and free, so to not do it, seems rather silly. I have to admit that I didn’t do the first one when it arrived, as it arrived on my 50th birthday, not exactly something that filled me with joy, in fact, I put it in the bin. Well, I already knew without someone rubbing it in, just how old I had become. Three weeks ago, my third test kit arrived and I once more set out to comply with their wishes. It all sounds really easy and it is, but when you have problems both with twisting your body and with your dexterity, well, it adds a new level of complexity to the whole thing. Once complete, I put it back in it’s prepaid envelope and asked Adam to post it, then set about life as always, and as always, forgetting all about it.

On Thursday morning Adam opened the post, he’s on holiday again this week, as he had more time off to take, to use up his annual leave before April. Amongst the mail was a letter for me, they had found blood in my sample. I knew there can be a lot of reasons for that and what they found was so tiny, that I’ve never seen the slightest sign of it, but it meant that I had to do the test all over again. Unfortunately, I am in the position that I can rule out two of the most come reasons, I don’t have piles or haemorrhoids. How can I be so sure? Simple, I have an internal examination from the district nurses when they give me my enema, that has now been three times a week, for nearly two years. They have never found anything, and I have never felt any pain. So when they say that there can be many reasons for blood being there, I can get rid of the two most likely ones, without even thinking about it.

I can only think that it is because I am so used to my body doing things that it shouldn’t, that I find myself in an odd position, I’m not actually worried about it at all. I wouldn’t be human if I wasn’t slightly concerned but I’m not scared in any way. In fact, I am more worried about the possibility that I may have to have yet another endoscope, rather than what it might even find. For me, it has to be the worst process that I have ever had to go through, not so much the endoscope itself, but the preparation that you have to go through, the day before. I have had three endoscope investigations, all well in the past and I really don’t understand how anyone, actually drinks the two litres of that disgusting stuff they give you to clean out your insides. Not once have I managed to drink it all. How anyone could possibly drink two litres of anything in under two hours, totally bemuses me. It is for that reason alone, that I have found myself praying that no blood shows up in this second test kit.

I may be unworried, but from the second that Adam read the letter out to me, I could hear and see that he doesn’t share my calmness. Despite the fact that he has lived through every single little trauma that my life brings with it for the past 19 years, he has never become any better at putting it aside until there is something proven to worry about. I’m quite sure that he worries more about me than I do on any given day, but when something happens like this, I watch it take its toll on him over and over. In fact, I have always believed that the cruellest things that chronic illness does, isn’t to us who have it, but it’s on those who love us. We know how bad the pain truly is, how difficult daily life is, and every single thing that we feel or happens to us, but they don’t. All they have is their imagination and I know myself, just how dangerous a good imagination is.

I don’t think there is a single illness on this planet, that I haven’t imagined that I may have had at one time or another. When your doctors can’t tell you what is wrong with you, well imagination is the only thing that we have. It took them nearly 20 years to actually pin down that I have PRMS, so I know what it’s like to watch a body do things that there is no explanation for, but even back then, I knew its extent, if not its cause. I still remember what it was like to live like that, and I can see clearly its effect on Adam. Worse still, it doesn’t matter what I say or how I try to show him there is nothing to worry about, he still worries. Reading that letter tore him apart, and despite his attempts to show a calm face, I saw his pain and concern as he read it to me.

I thought that in time, he would see that worry did nothing but make him feel bad and the things that he worried about, never proved themselves to be bad as he thought. Time seems to have taught him nothing, or maybe, he just has a way of seeing only the worst possibility in front of him. Either way, there is nothing I seem to be able to do or say, to calm him. It just isn’t right, that my health should cause him such pain.

 

Please read my blog from 2 years ago today – 16/03/2015 – Ups and downs

Today is turning into a nightmare and one that means I will be keeping this post short. Yesterday afternoon I suddenly started having problems with my broadband, it kept dropping out making scheduling all my tweets pure frustration as one second it was fine, the next I had no connection at all. When I go up……

It comes to us all

I knew the second that I heard his voice, that what I was about to hear wasn’t going to be good news. In fact, the last time I heard from him was back in April 2014, but you can’t mistake my little brother, he’s the only one of us with an Aberdonian accent. We’re not exactly a close family and the contact between us has been sporadic over the past 30 odd years. That didn’t stop it hurting when I heard the words I knew were coming. “Mums dead”.

It doesn’t matter how much bad feeling, pain or even time has passed since you last saw them, the death of a parent hurts. It was just the same when my brother phoned me in 2012 to convey a similar message about my Father and our relationship, had been a thousand times worse, than the one I had with my Mother. For both of them, the tears flowed from the second the words were spoken and the feeling of loss of something I had never really felt I had had, was momentarily overwhelming. Those ties, no matter how badly damaged, are always there, and it appears they will always have a power over us, that we thought no longer existed until they are severed in that most final of ways. Everything else in the world is exactly the same as it was 10 minutes before, all that has changed was the speaking to two little words, “Mums dead”.

He called me just after lunchtime on Sunday to let me know, as he knew he was the only one of my three siblings who would even think to bother. She died in the early hours, just after he had left her to go home to get a few hours sleep. The staff of the home said they were sure she would still be there for a while longer, but she did what she has always done, broke someones heart and left them feeling guilty, at least it’s the last time she can possibly do that one. I did what I could to try and reassure him that that wasn’t his fault and she hadn’t been alone as my sister had been sat with her at the end, but his guilt was so clear in his voice, and I felt useless.

From what he told me, it had been a long time coming. I already knew that she hadn’t recovered from the accident she had three years ago when she broke her hip. She had never walked again and had to be placed in a home. That was why I spoke to him in 2014, to try and find out where she was, but that call led to my writing a final letter to her. My mother was the most judgemental person I have ever known. She didn’t even come to our wedding because of the one small fact that Adam is 17 years younger than me, and believe me, that is one of the smaller things she has done to me throughout my life. In my letter, I laid out how she had treated me over the years and this game of not telling me what had happened to her, or where she even was, in the previous six months, had been for me the final straw. For the sake of my own health, I was severing all ties. So I had heard nothing. I didn’t know that last year she was diagnosed with Parkinson’s and by the time she died, she didn’t know who anyone was, or why they were there, so I’m sure she never once missed the fact that I wasn’t there either.

Clearly, there is no way that I can attend the funeral. Not just because I’m housebound, but we live a couple of hundred miles apart, a distance that has served several purposes over the years. Self-preservation isn’t a recent phenomenon, it’s a card I have been playing ever since I was 13. It doesn’t matter how far I ran, somehow, she always pulled me back and made me fell like the villain of the piece. That umbilical cord of life holds so much sway over us, somehow, we can’t wriggle free of it, no matter how old we are, they are always our mothers.

I knew after how I felt when my father died, that I would also feel something when she left, I just didn’t expect to feel so much. I’m not wailing all the time, don’t get me wrong, I’m not deep in grief, but that loss is there, held inside me, calmly changing the history of our lives. Death does that, it changes things, things that were written in stone, suddenly appear to be written in nothing more solid than soap.

What I didn’t expect, was for all of this to have taken a strange effect on my health. I don’t know why, but every time I stand to move to my chair, I seem to be more unsteady than usual. I don’t feel quite here, more tired than usual and somewhat sedate if that makes sense. Probably best just to say that I don’t feel totally myself, not really ill, just not quite right, but I will be.

As I said, I don’t know when the funeral will be or what all the details are, other than she will be buried with her parents, somewhere I know she would want to be. Even though I won’t be there, somehow it doesn’t feel complete until that final step is taken, so I hope it is soon.

Between now and then, I have this weekend to look forward to. My daughter is coming to Glasgow to spend a few days with us. It has been planned for a while and somehow seems to have a different importance to it now. Teressa barely remembers her, just the usual memories of early childhood, as she hasn’t seen her since I left her Dad, some 30 years ago now. I somehow have this need to have her close to me, even more than I did before, maybe, it’s something to do with that thread that runs through us when we become mothers.

 

Please read my post from 2 years ago today – 24/02/2015 – Rambling inside

I am so far behind this morning that I have given up any hope of catching up, I am just going to have to go at the pace that today will allow. Things started out alright and Adam, before he went to work sorted out the moving of the furniture in the living room, ready for the return of our newly…..