That longing to touch

We had a bank holiday this week, which meant that Adam was at home, rather than working. It’s totally thrown me, I don’t know how many times I have checked what day it is today, but I’m still lost. Adam spent it cooking my psyllium pancakes and worrying about his mother as it’s today that she will be having her mastectomy. He said that he’s been having bad headaches over the last week, not surprising really. He is stressed, far more stressed than normal. I went into the kitchen while he was stood there at the cooker and all I wanted to do was stand up and give him a cuddle, but I couldn’t. It wasn’t because he was visibly upset, it was simply because a few years ago, it was the sort of thing I would have just done. I would have just stood behind him and wrapped my arms around him, and simply held on while he continued what he was doing, or he turned around to face me. All those simple, little, spontaneous acts are gone. It’s not quite the same wheeling up behind him, pinning him with my chair, and finding my arms in line with his hips. Somehow, it just doesn’t work any longer. I used to love spontaneity, but when you have to think through every tiny action, consider how your wheels are going to get in the way, how much energy you have, what pain it might all cause and if you have the physical strength left, destroyed that long ago.

It’s rare now that we have a true cuddle. Well if you think about it for a few minutes, you would see why. It’s nothing to do with not loving each other, and everything to do with this stupid body of mine. I have two positions, sat down, or laid flat on my back. If you’re stood up and faced with someone who is sitting, how do you cuddle them? Harder still, how do I cuddle him? Whatever you try, it will be brief and not really comfortable, nothing like a true cuddle. I am now after many years of being ill, well acquainted with his stomach, not exactly the part I would prefer to see during our daily cuddles. If he comes down to my level, as he does every night to say “good night”, it requires a lot of strength in his quads, something that’s not always there for long. Even when we sit together on the settee, cuddling is hard work. I can’t sit still for long, I am always having to change position, either to breathe better or to relieve the pain. I’m never still for more than a couple of minutes, so it just doesn’t work. Adam is as always, scared of causing me pain, and takes it personally when I suddenly pull away or move him due to the pain. It’s not him, just me my body screaming it can’t take any more. Lying down isn’t any better. I can’t roll over, not even onto my side. I am stuck there flat on my back, and yes, he can cuddle me, but I can’t really cuddle him in return. All I can do is lie there, feeling like a spare part in life. Even if he helped to bring me onto my side, I couldn’t stay there for more than a few seconds, as the pain just builds and builds, until I flop once more onto my back.

Every single element of our lives has changed. Even at times like now, when all I want to do is try to take some of his pain away, mine gets in the way. All I could do yesterday was to talk, to try and use words to reassure and to sooth. Yes, we share the odd touch, reach out to each other in passing, but none of it is even close to the way we once were. It is at times like this that I get angry with my health. I feel so useless, so unable to do anything. He has taken tomorrow off work so that he can spend the day at the hospital with her, I will be stuck here, feeling beyond useless. I should be there for him and for her, but once again, my health wins. When it comes down to it, I am a head on a body that doesn’t work in anyway that is of use to anyone, not even me a lot of the time. I get angry at what has been taken away, from not just me, but from everyone that I care for. Acceptance doesn’t help them, and I know because I am human, that the logic that says, “I can’t do anything else”, doesn’t fill that space I once occupied. Tomorrow, no matter what the operation found or didn’t, there will be times when Adam will have that need to have my arms around him, and I, of course, I won’t be there.

In many ways, I am the living dead. To the outside world, I am gone, it is only those who come to me, know that I am alive to at all. To most, I am gone, just as completely as if I were dead, to others, I am the ghost, that empty space, that no matter how much I want to be filling it, will always be empty. Even to the few who know I am still alive, I am the body that no one quite knows how to touch, how to be with and even how to show love to. Thier not alone, as my once spontaneous nature, who didn’t care what others thought, would hug, hold hands with and be affectionate to those that I loved, no longer even knows where to start.

Being the owner of a physical form like mine, is a trial for all those around me, and even for many who aren’t. It is a position in this world that is hard to come to terms with, but can still be far better than most imagine. Love is the most amazing creature, as believe me, as an invisible force in this world, I have learned to understand it, better than many. I might have been forced to not be like others, but I’ve found many ways of still showing my love, of still being part of and of feeling it in return. The physical aspects of love, those moments where we pass it from one to another, don’t have to be physical at all. I don’t feel any less loved by Adam than I did on the day we married, and by refusing to remain invisible, by building a network of friends here online, I’ve found more love than I ever expected. Not once will any of you ever see me, nor I see you, but that doesn’t change a second of what we share, by sharing right here, your time with me.

 

Please read my blog from 2 years ago today – 04/05/2014 – Lightening strike

Over the last couple of weeks, I have been having more and more spasms in me rib cage. There have been the total lock downs which I have become used to, they don’t phase me any more than a spam in my arms or legs would, but now I have a new pain and it catches me off every single time it happens. They are sudden, sharp and painful, like lightning strikes that circle my torso and cause me to stop dead whatever I am doing and then they are gone. I know well enough that the length of time that spasm lasts can be anything from a second to weeks, but these are so different and have now been around long enough for me to add them to the list of things that are happening. The very first was when I was in the kitchen sorting out my lunch, I thought that I had caused it by twisting or maybe nipping a nerve, but while I was there it happened three times, but still I dismissed it. It didn’t happen again until the next day just as I was getting up and dressed and bang, I was stopped and in pain, not in the same intercostal….

On the edge

At first, I didn’t know what to do about it, well, what do you do, when your mother who hasn’t spoken to you for three years, suddenly sends you a birthday card. Almost since the day I was born, my mother and I have had what I can only call, as a fractious relationship. The first time I realised that I wasn’t the same as the rest of the family was when I was still in primary school. I don’t know what it was that woke me up to it, but it was as clear as the nose on my face, I was treated differently. None of it made any sense, I couldn’t work it out at all, but I was told off all the time for things that the rest of the family got away with. I was the middle child, if, you can have a middle out of four children. My elder brother and sister were separated by only two years, five years later, there was me, and five years after that, my little brother. He was the apple of her eye, not at first, but when it was found out that he had received brain damage from the forceps when he was born, he became the special one. No, I wasn’t a jealous child, I wasn’t even aware of him being special until years later, at the time, he was just different.

My older sibling, they had freedom, everything new, and everything they asked for. Me, I was the hand me down child, and not just from my sister, from my two older cousins as well. I never felt as though I mattered, that anything I said was listened to. A lot of the time, I felt in the way, a nuisance who was always too young or too old, the inbetweener who never belonged. I didn’t find out why, until, Mum and I were having a huge row about nothing. We were in the garden and whatever she said really got to me, I screamed at her “I hated you”. Then it came out, I was totally unwanted. I was 10 years old and my mother told me she never wanted me, but her doctor wouldn’t giver her an abortion. A couple of years later, that argument was elaborated on, I had snuck into the world through a whole in a condom. In the early 60’s family planning wasn’t quite the science it is today, and abortions, well there had to be a real reason, and she didn’t have one. My little brother too was an accident, but his problems made him special, I was just an annoyance. The child that stopped her from having the career she wanted, and the life she wanted.

Knowing you were born unwanted, isn’t the best information a child needs, to make them obedient and compliant to their parents desires. Yes, I admit, I turned into a rebel, who wouldn’t under those circumstances. When my parents divorced, I was sent with my father. Mum yet again didn’t want me, and during the next 18 months, I discovered neither did my Father. I was in my early 30’s before I confronted her on that one. I lived through a year of abuse, that no child should have to and I thought she always knew. She says she didn’t, but there was something about the way she said it, that left me still not believing her. From the day my father took me out the back door of our house, into his care, to today, my relationship with my Mother has been totally off and on. She was delighted when I married my first husband. A Royal Navy officer, at last I was doing something she approved of, after all, even though I was 16, he was a very respectable match and meant I was at the other end of the country. Throughout the 10 years we were together, she was the model Mother, Mother-in-law and grandmother. Then I left him. She didn’t speak to me for a year and when she did eventually speak to me when I phoned, rather than her hanging up, it was as though nothing had happened. Which, was more than bizarre, but that’s my Mother.

Our relationship slowly did become one of equals. I proved that I was more than capable of supporting myself, even if she didn’t understand why I wanted to be a DJ, or my tattoos, black & bright red hair extensions and my individual style of clothes, but we actually got on, again. She even met each partner as they appeared, she disliked and liked all the wrong ones, but she put up with their existence, that was, until I met Adam. Even though my sisters husband is 17 years older than her, my marrying someone 17 years younger than me was once more totally unacceptable. She refused to come to our wedding and didn’t even want to meet him, until a year after. Almost every time we spoke, she told me it wouldn’t last, that he would leave me. When he didn’t, even after I got ill, she still had few good words to say about our relationship. Slowly, she accepted him, as she now had bigger fish to fry, telling me just how badly I was handling my health. How she knew people with MS and they weren’t anything like I was, and no matter how many times I explained it, she wouldn’t accept it as it was me who was telling her. Slowly, we spoke less and less, it dropped from every couple of weeks, down to maybe once a month. I had so little to say once I was housebound, and she didn’t like being upstaged, by someone who was iller than her. After all, I had listened to her telling me for 40 years, about how little time she had left. She has always been the family hypochondriac, convinced from her 50’s that she wouldn’t live long. She’s now nearly 90.

Just over 3 years ago, our calls had dwindled right off. I don’t think I had heard from her for about 4 maybe 5 months, so I decided that I was clearly the one, who was supposed to call. The phone wasn’t answered, not once, but for 3 or 4 weeks in a row. I hadn’t been calling daily, but I felt it was odd, even odder when I left messages and I still heard nothing. I had no choice, but to call my little brother, mummies boy, always mirrored whatever she thought or did, so never hearing from him, wasn’t a surprise. She was in the hospital, she had had a fall and broken her hip, six months before. The decision had been taken that there was no point in telling me, after all, I was housebound, what was the point. He kept me updated with a couple of calls over the for next couple of months, as she was shifted from one hospital to another. Calling him and actually having the phone answered, was rare, he worked shifts, and no one else in the family, ever answered the phone. Then the decision was made, she was to go into a home, as she was unable to go home again. The last time we spoke was when I was fed up of hearing nothing and my calls not being answered, so we tricked him. Adam called and left a message, asking him to call. I knew he would think that I was either dead or extremely ill, but it made him call. Mum was now in her second care home, she had only been there a week and they were waiting to see if she settled. He promised he would call, she was to have a phone in her room and he would give me her number. He never called, nor did she.

This Christmas, I sent her card to his address, just as I did the year before. No card came in response from her, but there was one from him. Still there was no phone number or even an address, but he did name the care home where she is and a note saying she was well, but that was it. Then out of the blue, a birthday card arrives, with a note inside, saying how happy she was and how she enjoyed her weekends surrounded by her children, grandchildren and great-grandchildren. Once again, no phone number, or even the address of where she was. Because I had the name of the care home, the internet has supplied me with what I think is the address. I guess, she want’s me to write to her now. Part of me feels it’s too late, that there is nothing to be gained from it. Part of me feels once more out of the duty of a child, that I have to respond. Why do parents have this horrid hold over us, even when they have failed as a parent? I have never felt anything from her that I would call close to love, just duty. Despite what I shouted as a child, I have never hated her, but I have never hated anyone. So what do I do now?

Please read my blog from 2 years ago today – Plasma itch 

Snore day number one…..otherwise know as Saturday, the first day of two snore days where Adams snoring from the settee is once more blocking out the TV! How does he do it? I honestly would have thought that not……

 

 

Nothing can destroy love

I constantly stumble over people who haven’t been as lucky as I am, to still be married after many years of illness. The first thing they always do is to blame their health, for them being alone, but the more I think about it, the more I doubt the truth of that statement. Without a doubt, every single one of us will lose friends along the way. When we lose friends, few sit in tears and grieve over their loss, we just move on, telling ourselves, they weren’t real friends in the first place. Personally, I think that may too, be the truth of partners who run a mile, just because we become ill. It isn’t a deficiency in the love we have for them, but their love for us. It doesn’t matter how hard I look, the only reason that I can give for Adam and I surviving what has happened to me, is love. There isn’t anything special about us, other than we totally love each other, and the very thought, of being apart, is worse than anything my health can do to us.

If I am honest, I don’t think there was a single person, other than Adam and I, who thought that we would last. There were a million reasons why we shouldn’t, starting with the age difference, the fact we came from very different worlds, and what we had in common could be written on a cigarette paper. Then there was the fact I couldn’t have any more children, following a hysterectomy when I was 25, and my first child was born just a year after he was. We had only known each other a few days when he more or less moved in with me. We were engaged a few weeks later and left the shared flat I had lived in for years and into a place of our own. Which was quickly followed by us getting married. Just after our first anniversary, we bought our flat and just after our second, all my aches and pains, my growing tiredness and a list of other things, were explained as Fibromyalgia, six months later, that diagnosis was joined by another of PRMS. Not the best things to appear at what was just the start, of our lives together. Two years later, to both of our surprise, I lost my libido. At first, it was just the combination of being in pain and being constantly tired, that meant our sex life diminished, but then the whole concept became an alien thought. 11 years on, and it still hasn’t reappeared. Then 9 years ago, I became housebound. There was nothing left that could happen to us, that could or would in many people’s eyes destroy any marriages, but here we are, still in love and still very happy together. If anyone can say that chronic illness doesn’t have to be the end of a happy marriage, we can, as apart from death, there is nothing left that it can take away from us. If you truly love each other, you truly can survive anything.

Having said all that, it doesn’t mean that there haven’t been several times, that I thought it was possible that we wouldn’t survive because of my health. In fact, I still remember clearly just after my diagnosis or PRMS was know, and I had absorbed just what it meant, that I told Adam to go. I clearly didn’t want him to go anywhere, but I felt so guilty about the fact I had been ill for years without a diagnosis before I even met him. I had been trying since I was in my 20 to find out what was wrong with me, but the doctor kept sending me away, they repeatedly told me there was nothing wrong with me. I had had no choice but to accept it, so I never even mentioned it to Adam. I had lived with it for 17 years, what was there to say? It wasn’t until we had just moved in here and I found myself once again struggling, that I first mentioned it, so yes, I felt guilty. I didn’t want him to feel that he was tricked or trapped, if he wanted out, I wasn’t going to hold him back from going, as I could totally understand of that was what he wanted to do. When I said it, I was terrified. The whole thought of losing him, on top of everything else, was almost unbearable, but he stayed.

When sex went out the window, of course, I feared that that was the end. I even tried to fake it, but when the feelings not there, there’s nothing and Adam knew without me telling him, that something was totally wrong. We had always been one of those couples who just couldn’t bear to not be physically touching each other. We went nowhere without holding hands, sat as close to each others as we could get, and were always, stealing a kiss whenever the opportunity arose. Suddenly, I was pulling away, trying not to make contact, just in case he got any ideas. Every time I did, the same fear appeared. How long would he stay with me, without sex? Sex had actually been one of those difficult things for several months. I knew already that he feared causing me more pain than I was already in, to be honest, so did I, but when my libido switched off totally, my final fears appeared. We talked, we talked a lot, and although for me there is still some guilt, it has become, just the way we are. Of course, there is still physical affection between us. We cuddle and we kiss, but that’s it, it never goes any further. For me, I have to say totally honestly, sex never enters my mind. It’s unavoidable on TV, but it doesn’t matter what I see, what the atmosphere is or anything else, I feel nothing. These days, if it suddenly reappeared from nowhere, I know without even trying, that I don’t even on my best days have either the energy required or a body that wouldn’t cause me more pain than I would be able to endure. Libido or not, I believe that it would now be a closed subject. We still love each other deeply, and neither of us, are going anywhere unless the other is with us.

Marriage, all marriages start and end with friendship. If you partner isn’t your best friend and you don’t love them regardless of their faults, chronic illness may just be the straw that doesn’t just break you, it shatters you, but it isn’t the reason any marriage will end, that’s going to be due to something else, that just wasn’t right in the first place. So if you have been recently diagnosed, don’t fear what your health might do your relationships because if you both love each other enough, you will survive this as you would, anything else. If love is deep enough, it survives anything, just as long and even after you do.

 

Please read my blog from 2 years ago today – 05/02/2014 – Holding back the future

We all like to think we are individual, but the thing that makes us happiest is to find someone just like ourselves, just one of the many things in life that I just can’t really get my head round. We all seem to have……

 

 

 

 

 

Please let me be human

Last night, I found myself snappy with Adam, which is a truly rare thing. He realised within seconds of being home, that I was once again exhausted and that I wasn’t in a responsive mood. It’s not common for me to be like that, normally, it doesn’t matter how I feel, I manage to put on that happy face and make light of it, but not yesterday. Everything about yesterday was extreme, hence yesterday’s blog. I quite honestly didn’t know how to deal with another minute of that day, I was done before it even started. Every element that I have spoken about over the last few weeks, for some reason all appeared together and it got the better of me. I can cope when it is just the constant pain or the endless tiredness. I can get through any day where they are at levels where I can make light of them, or even if one or the other is off at an extreme, but yesterday, they hit me like a mallet, and there was no escaping either. Not even my Morphin boosters were doing their job, quite to the same extent as normal, in fact, nothing was working as normal. For me to be off hand with the person I totally adore, was just the final symptom of a day, that was filled with extremes.

Adam, like so many people when faced with someone who doesn’t want to communicate, who is clearly having a tough time, is to make light of life. To talk twice as much as normal, crack jokes, tell stories and constantly try to get a positive response. When that failed, he then started to ask questions every few minutes. “What is it that’s so wrong?” “Can I do anything to help?” “If I did this or that, would it make things better?” “Have I done something to upset you?” Inside, I was screaming “Please, just shut up”, but the words always come out as “No there’s nothing you can do, I’m fine”. Unfortunately, I was very aware, that my tone was saying anything but. It takes a lot for me to lose my patients with Adam. Like any husband, he can occasionally drive me up the wall, just as a wife, I am sure I also do to him. Even at my worst, I rarely feel as I did last night, and I knew totally, that it was all coming from me, not anything Adam had done.

It can be hard at times to put aside my health, and to try and be the person I am, and I always should be around him. When you have lost all your energy, when your patients with life is thin, even those we love can turn into another annoying blue bottle. They don’t mean to, and we don’t mean to feel that way, it’s just the way it is. Normally, those days are well spaced, but recently, I have found myself there too often, just wanting to swat, what are meant to be loving actions. Adam isn’t stupid or blind, in fact, the other day, he himself said, “Shut up Adam”, then mumbled his way back to the settee. He had come up here just to make sure all was well and to give me a kiss, he didn’t manage either. Too frequently lately, I have pretended that I was busy, engrossed in what I was writing or the game I was playing, not because of him, but because I just couldn’t cope with anything or anyone else at that very second. I feel guilty for it, more so, because I can even explain what is going on to me, far less to him.

Physically, there are two things that right now are getting to me. Firstly, my lungs. I am getting so much pain, not just the normal intercostal spasms, but a separate internal tightness. A times, when I take a breath in, there is pain right in the center, exactly where the bronchus splits in two. My right lung is the worst, as I have areas that are really painful all the time, others that spike out of the blue, sometimes in line with taking a breath, others when I move. All the inhalers in the world won’t help me, as this is muscular, this is all coming from my PRMS. I loose my breath at times, but more than anything, it is simply restricted. Secondly, once again, it’s my stomach. This one I really don’t get as with the increase in the Psyllium, I am actually going to the loo every three days, which is wonderful compared to how it was. The pain, though, is at times off the scale. It’s in the same area’s as normal, but far more intense and lying down or sitting, there is no relief. Psyllium, unlike laxatives, doesn’t cause spasms, it’s simply a bulker and one that adds lubrication. This pain is from spasms, so once more, that means this is my PRMS. Add in the rest of the pain that is spaced out around my body and clearly, the pain is getting to me badly. It’s not constant, but in the last three days, have been exceptionally bad. The pain alone is exhausting, but it’s not alone, as they way I feel right now, I know something else is at play.

If I could get the pain under control, them maybe, just maybe, I might feel better. I say maybe, as I am so used to living with pain, that I can’t be sure, that it is causing how I feel. My Gabapentin increase doesn’t seem to have touched these areas, I’m sure it has, but it just doesn’t feel that way. What it has done for me, is to turn down the pain levels throughout the rest of my body. At first, I thought, that the turning down of all the background rubbish was just allowing me to feel this all the more, but over the last couple of weeks, it has clearly been increasing. My Morphine boosters turn it all right down, but if I take too many in too short a period, I start having vivid dreams that disturb my sleep. The less sleep I have, the more tired I am and the worse the pain gets. Therefore, I try not to take more than one or two at a push in any 24hr period. Yesterday, I put off taking that tablet until 6:30, the time I close down my PC and we settle together on the settee for the evening. Unfortunately, they may deal with the worst of the pain, but they don’t stop the spasm and even without severe pain, they can be incredibly uncomfortable, and just as tiring. By 6:30 last night, I was exhausted, so tired that my brain just could deal with even the TV if I’m honest. It clearly couldn’t deal with Adams attention as well.

When all of this started a few months ago, I never thought then, that it would get this bad. The more I think about it, and the more I analysis what I have written over that period, the more convinced I am, that something bigger is going on. I can’t help thinking, that the increase in pain, and the growing exhaustions, are symptoms, rather than the conclusion. If I could just deal with those symptoms, then I might find out what is behind them. I have always told myself, that it doesn’t matter what my body throws at me, I can deal with it. I still believe that. What I can’t deal with, is the way it is affecting me when it comes, to how I’m treating Adam. I know, that he doesn’t let it affect him, he understands that it’s not really me, but that just makes me feel worse. He doesn’t deserve to come home to someone who it crotchety and frequently downright rude. As he keeps reminding me, “Marriage is for in sickness and in health”, what he conveniently forgets, is that we have been married for nearly 16 years and I’ve spent 13 of them sick. I don’t want to spend whatever time I have left, short tempered and snappy, but I don’t know what the answer is.

 

Please read my blog from 2 years ago today 04/02/2014 – Making things better! FOR WHO??

After years of getting frustrated by not being able to pick something up or dropping something without warning,I now have a new and unexpected addition. I had been using my E cig and was ready to go to bed…..

 

 

 

 

 

Changing the impossible

It appears that although my fall the other day didn’t hurt me, it’s spin off did more damage than just break my crystal bowl. Adam is once again to be worrying about the “what if….?”, or “what might……?”, and any and every “But……” you can think of. It has even gone as far as him asking me when I was about to climb into bed on Tuesday, “How am I going to be able to go to work if you are going to be falling like that?”. One of the things that I thought was going to be curbed by my taking to wheels was Adam’s worrying about me. One silly little fall, in which I didn’t even receive a single bruise or the tiniest scratch, and we are right back at square one. What is so annoying, is if that silly little bowl hadn’t been broken, not only would he not know that it even happened, neither would anyone else. That is how minor and irrelevant it was, it was totally unnoteworthy.

One of the hardest things about living with chronic illness is not what it does to us, but what it does to those who love and care about us. Every day that we are ill, they suffer too, and at times, I think they actually suffer more. Not having ever been on the other side of this situation, the only thing that I can compare it to, is the love and caring that I had for my children when they were small. I can remember the feeling of sitting there beside them, so tiny and ill. Sitting there looking at them, stroking them, and feeling totally useless, as there was never anything that I could do. When my son was dying, I held him in my arms looking at this beautiful sleeping child and wanting to switch places with him. There was nothing anyone could do, and knowing that, just made all even harder. It has to be the point in my life where I felt the most useless and powerless of all. I may not be dying right at this second, but I can only imagine that daily, in a lesser way, that is what Adam goes through. For a long time, I thought that the fact that I could tell him, and that he could see, that I was fine, then he had to believe and really see it. He doesn’t do either. In his head, it appears that whatever I say, he decides for himself, what is actually happening. He has somehow decided that he is responsible for everything I do, and everything that happens to me, whether he is here or not. That it is somehow, his responsibility to protect me from an illness that no one can cure. I recognise that sort of madness, I recognise it because it’s called love and yes, it is adorable of him, but it isn’t required.

Love is like that, it is not only the most wonderful feeling that we can ever know, it also often, at the very same moment, the most painful and the most destructive feeling, we will ever know. Emotional connection and commitment are unbelievably difficult to control, in any way, even by ourselves. The chance of my being able to control someone else’s love is zero. Yet, it appears, that is the only possible way there is of putting his mind at rest. What more can I do than what I already do? I have shown him over and over that I am capable of caring for myself unless something unexpected happens. Which actually makes me identical, to every other living person on this planet. Just as you could fall today. I might not, it’s the luck of the draw and that is a reality that we all share, ill or not. But still, he thinks that he has to be here to stop things happening to me. Oddly, it has become worse in the last couple of weeks. It is as though my wheelchair has somehow woken him up again to the fact that I am disabled.

At weekends, if he was up before 11 am, I was sure, that there was pig flying over our house. The last couple of weekends, he has been up and about at the same time as me. He doesn’t fill up the bottles with coke and put them in the fridge, as he does during the week. no, he has been running back and forwards to fetch each glass as I need it, keeping me sat here, unmoving and unable to land up in any sort of accident. I haven’t said anything, what would be the point. He is going to behave like this until he manages to get the biggest thing that is missing from his brain in there. I am less likely to have an accident now, than I was a month ago, as now, I am sat down. When I do stand, the maximum steps that I take without sitting again, is 5. Five steps, where I am always totally surrounded by solid walls or furniture, which I can hold on to. It is all so back to front that I am at a total loss.

The most stupid part of all of this is a fact that I am sure he isn’t even aware of. The more I watch him worry, the more I see him scurrying around me as though I am made of porcelain, the more I worry about him. I know, because I always hear him, that he sleeps with one ear open and should I wake, he wakes. I know it is his nature to have a lazy streak, but here he is living totally out of his normal. Pushing himself every minute of the day and night, to be there in case I need him. I know that worrying isn’t good for anyone, especially when they do nothing else. Right now, he is doing absolutely nothing else. Instead of him now seeing what I see, someone who was pushing her luck daily, now safe and out of danger. My wheelchair has been like some kind of fluorescent reminder of just how ill I am. Granted, all the new meds will have brought that home to him as well, but he can’t stay like this, it isn’t good for him or me. Last night, he even apologised to me for the fact that for some reason beyond both of us, our oven wouldn’t light. It’s not his fault, what was he apologising for? That is a question that I do know the answer to, he apologised because he wasn’t able to make my world perfect. Sorry sweetheart, you can’t do that, my health has seen to that, not you.

The longer I am ill, the more I see just what my health is doing to him and that to me isn’t just wrong, it’s unfair. I tried so hard when I was diagnosed not to once say things like “I can’t cope, because of my health”. I don’t think that I can remember even asking for his help, until not long before my arm died and I became housebound. I didn’t do that because I was being strong or pig-headed, I did it as I saw no reason for his life to change, until it totally had to. I knew the day would come when his care would be needed, his freedom to be himself, to me was more important then, than my health. It was going to do whatever it wanted, so every day of normality for both of us had to be held onto, and enjoyed. To me, we are still less than half way there. Yes, he has to do a lot that I can’t, but I am still capable of being independent and I believe for the sake of both of us, that is how I should be. I don’t know how other people manage their health as in its impact on their partners, but I still see him as 100% that, my partner. He isn’t my servant to order around, and I hope I never ever do that, even by accident. He is slowly becoming my carer, but nowhere near the point yet, where he is my nurse. It is a relationship that is fluid and has to be, but it is also a relationship that is formed from love, and must never be seen as a duty, by either of us.

When you marry, you never look forward into your life together and see anything like the marriage we now have. We’ve only been married for 16 years, 14 of them has been spent with the monster of PRMS hanging over us. So in some ways, the time that most couples get to spend cementing their relationship has been spent with this added angle. For me, there is always going to be an unavoidable guilt, the guilt that told him once to go, as it simply wasn’t fair on him. Adam was just 21 when we married and I didn’t want him to look back and resent me. I doubt there is a relationship out there in our position, that hasn’t gone through all of these stages. Couples, who have worried equally about each other and wished the other could see it from their side. From what I have read, those who make it as far as we have, well they all have different ways of dealing with things, which isn’t really helpful. The truth is that relationship analysis is rarely of use, as no two couples, far less two people are totally the same. Love they say is blind, it has to be to survive the cruelty that life demands that it endures and still stay there strong and forgiving. If there is one thing that love and all emotions have in common, is they are anything but logical. On that basis, I don’t stand much of a chance changing his worry into settled and content, as all I have to fight it with is logic.  I don’t have the answer, to stopping him from worrying about me every second of his life. If you do, please tell me, but I expect that the truth is, it’s just the way it’s always going to be, but hopefully, he will settle down just a little, soon.

Please read my blog from 2 years ago today – 01/10/2013 – Nature or nurture

It’s going to be a mixed up week and I know that already, simply because Adam was off work yesterday, with him working for the local hospital he gets the local holidays, I can’t even keep up with the….