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….

The Elephant in the room

I used to believe that life was written out for you in advance and that what happened to you was really not in your control, all you could do was go with it and survive. It’s strange how you change as you grow older. Although I don’t think I am following a script any longer I do still believe that things happen for a reason and we just have to work out what that reason is. With everything that is happening in my life now between Twitter and here I often wonder if this is why I have MS. I seem somehow to have developed a talent that I didn’t know I had, to inspire people and to reassure them that life is never over, until it’s over. I sort of fell into this and there was never a great plan of what I was doing other than I gave myself a couple of simple rules, the first that I told and wrote nothing but the truth, as I see and feel it, the second that I was going to do thing my way and not follow the crowd. So here I am suddenly with so many people reading what I write that keeping up with them all is almost impossible but I do what I can, when I can.

I have to say that all of this has really gives me a huge boost everyday and confirms constantly that having something, anything that makes you feel you are achieving, that there really is a purpose to your day, you will be able to manage your illness better as well. At times I know I make it hard for myself writing the things I would rather not think about but for me it can actually help at times, writing it down helps me process it all and settle it in my mind as well as lay it all out so that others can read what really happens.

The reality of last weeks visit to the hospital is I am still not back to normal, last night I again couldn’t stay up and only managed to stay awake as long as I did because I was watching TV with Adam. I actually really like our evening together, just sitting in the same place at the same time brings a closeness that we really don’t have as we used to. It is hard to do things like curl up on the settee together, I can’t physically get comfortable in anything less than sitting or lying out flat, pain isn’t only when you move around the pain is there through everything, just the simple thing of having a cuddle is painful. I haven’t written a great deal about the effects of chronic illness on a partnership and I feel that maybe I should as something like MS is not just a personal condition it is a life condition for all those who are around you and care. We hadn’t even been married for a year when my health nose dived and it was as hard on me, as it was on him. Both of us were helpless and both of us were in our own personal hell, while we both tried to adjust. I think it could have been easier if we had possibly talked about it more, but MS was the Elephant in the room and neither of us wanted to anger it. I think that is another reason that I would have liked to have an information pack at diagnosis, as reading it would have given us focused point to discuss, rather than wondering around each other trying hard to pretend nothing was wrong, individually reading up about it on line, when the other wasn’t there. I guess that is how it is for many, there seems to be little point in talking, as talking wasn’t going to change it or heal it. So we both silently tried to work it out in our own ways, finding information that was different from the others and expecting very different things of what the future might hold.

Those first couple of years although I was ill, life did carry on very much as it had before and we talked less and less about what was happening to me. I have heard all to often that marriages don’t last past that point, too many times I have been told that the partner left, so I am more than lucky that we survived as we have. Yes it did worry me that we wouldn’t, and there were times when I wondered if we would be split by it, but we survived. No matter though how much we love each other, MS is like having a third person in the marriage, it has a say in everything, and neither of us can do anything about it.

marriage, partner, partnership, love, talking, together,

The effect of people

You would think once you have an illness like MS your time would be spent mainly trying to keep yourself as well as possible and learning how to handle all the different symptoms, that would be a logical course of action, but life isn’t logical. I touched on this yesterday when I mentioned the standard reaction from others when you fall in a public place, but that isn’t the only reaction that makes it just that bit harder to handle. Once I had gotten over the initial shock and grieving process I decided to get on with living, my MS is progressive and the change in pace was the reason that the medic eventually realised exactly what was wrong. It is only in the past 5 years that I have become housebound and my path here was very mixed, with periods of good and bad health, but I was very aware at times of the way others reacted to and treated me.

At first when I could still walk, I was given a walking stick which I was really pleased about once I got past that initial denial of needing it, but as I said yesterday, people on the whole became more helpful, as with everything in life there were those who had the opposite reaction. My dexterity has been bad for a long time so doing things like paying for shopping, carrying things and still using the stick at the same time clearly had problems. I lost count of the number of exasperated sighs I heard from people behind me in a queue, as I tried to get change out of my purse and not loose my stick while doing so. Frequently the volume would increase if I dropped my stick and those responsible for their impatience, never thought of picking it up for me, they just tutted and watched as I tried to retrieve it without falling over myself. On only one occasion do I remember someone coming to my assistance whilst giving the tutter a lecture on manners, which didn’t go down well, as they left the shop they announced that if I couldn’t manage on my own I shouldn’t be out on my own.

As my walking got worse, we managed to convince the NHS to give me a wheelchair but they would only give me one that I needed someone to push me in, I thought it would mean that Adam and I could go out together. At first it seemed like a great object, not pretty but useful, my relationship with it was short lived. I had heard tales of people sitting in chairs being ignoring and others only speaking to the person pushing it, well the stories are true. I tried hard to make myself seen and acknowledged but speaking only cause more problems, my stuttering and word lose only compounded the impression I was completely useless. I found the whole experience degrading and soon saw it only as something to be used in an emergency.

When eventually I did get my freedom of a manual chair, the majority of people at last saw me again as a person, but I could still be ignored and tutted at. Although my freedom was limited by a world built for able bodied people I managed quite well. I occasionally would get stuck, I mean really stuck and as hard as I tried there would be no way round the situation. I then again became invisible. Surprisingly many people would walk past, on the odd occasion I tried to ask for help I found that I was still invisible until eventually someone would hear my call and then more than one would hear and come to my assistance.

It may sound as though I am painting a picture of a world you don’t know, believe me I am not. There are many many wonderful, patient and helpful people but then there is a small section of society who have no understanding and no knowledge of their effect on those who aren’t blessed with perfect health and perfect bodies. If I wasn’t a bolshie determined person I would have retreated into my home and my own world long before I had to. I fear that there are at this second, many people who have cut themselves off, simply because dealing with these people makes life harder than it already is. I would love to take them put them in a wheelchair with their legs strapped to stop them getting out, a brace in their mouths so it would be difficult to speak, then dump them in a city center all by themselves and see how they get on.