More than a partnership

I spent most of yesterday afternoon, making my Psyllium pancakes. Adam hadn’t been happy about me making them when he was out, he wanted me to wait until he was here today to help if I needed him. It took some convincing, but I managed to get him to accept that I was perfectly capable of just stopping and lying down when I needed to. He finds it hard to let me do anything by myself, he for some reason is always concerned that something terrible will happen and he won’t be here to help me. Actually it’s not for “some reason”, it’s because he cares and loves me and doesn’t want anything bad to happen to me. I do understand that, but it’s hard sometimes just accepting that and just to let him help me more than he does, simply for his peace of mind. Living this life is often a balancing act, between what I believe is possible and what Adam believes is impossible. I guess every couple who is in our situation has the same issues, the same desires and the same problems. I often think that being on my side of the scales is the easier one. I may be the one in pain, unable to do most things and easily tired, but I know all that and it is me that feels all of that. He can’t, he has to guess and assume then just watch and worry. If that wasn’t bad enough the worry only grows when he isn’t actually here to do the watching.

He was right, but I knew that before I even started to make the pancakes. It’s a long slow job and I am not up to doing it all in one go. Once I had made the batter, I went to bed for an hour while the yeast did it job and turned the solid lump that Psyllium forms, into a light fluffy substance that is easy to spoon and stretch into pancake forms in the frying pan. After an hours cooking, I was only half way through the quantity I had made and I was once again shattered. One of the beauties of this stuff is that it will keep for several hours, just cover and take a break, it will be fine. By actually just taking my time and doing it bit by bit, I got the job done without collapsing, falling or any of the other things I knew was running around in his head. This morning, I am paying the price. My pain levels are high and I am tired. Despite doing everything I needed in the kitchen while sitting on my perching stool, my legs and ankles are killing me. I am not the slightest bit surprised by any of it and I am sure he knew this would happen as well. I am sure that many who read this who aren’t ill will find my determination to put myself through something that would cause so many issues, as more than odd.

On the surface, I can see that. In fact, if Adam and I were in the opposite position, I would have argued it to the last minute that he shouldn’t do it. Adam knows that doesn’t work with me, argue with me and all I do is get angry and more determined that I will do what I want. He knows it as well as most chronically ill people do, our independence is incredibly important, as important as breathing. If there is something, anything that I can do for myself, I want to do it. The price I pay for that is just something that I accept. I accept it as I know that whatever the task is, I will have the satisfaction that I have done something by myself. My independence is precious. So all I did was make some pancakes, not exactly a big deal, but I did it all by myself. OK, it was in stages and I am paying the price, but I was for a few glorious hours, doing something other than sitting on my backside in front of a computer.

It can be difficult when your partner becomes your carer. Right now we are still stepping up more and more what Adam does for me. Every few months his support is needed more and my independence becomes less. Not because I am getting lazy, but because this illness is stealing more and more of it, and more and more of me. I know that he is happy to do whatever is needed, but it’s painful for both of us as we are both witnessing my decline. Adam knows perfectly well that when I ask him to take on something new, it is because I have no other option. Which just makes it harder for both of us. I can’t step into his mind, but I can empathise and at times he has slipped and I have seen it. No matter how much he says he doesn’t mind, I know that on some levels, he really does. No one wants a million jobs dropped on them that will eat up their once spare time. I admit that I held onto many for longer than I should, just for that reason. But the point eventually comes when you have no choice left. It has been and still is a long painful process for both of us. Our roles have changed so dramatically from the ones we had when we married. I was the carer, the homemaker and the breadwinner. Now I am none of them and he is all of them and so much more. Everything changes when your brain will no longer cope with even the little things when you have to ask someone to be your proxy brain. That is one thing I can’t imagine, how it feels for him to be doing things like reading my mail and sorting out my meds because my brain can’t deal with it. I can fully empathise with him over all the physical stuff, but being someone’s physical replacement is one thing, being someone’s mental replacement is totally different.

Without a doubt, both of us are walking the same tightrope wire. It doesn’t matter if it is the physical help or the mental assistance, both have a huge psychological impact on both of us. Neither of us want to hurt the other, or even upset the other, but we both have very clear and often opposite views of what I am able to do. That is the tightrope, I have asked for and given him permission to take over so much of my life, but I still need my independence. It is a hard balance for both of us and I am very aware of it from both our sides. Once you are on that tightrope there is no way off, no way of turning it back into a nice wide road. Well, except if my brain checks out totally, but other than that, our future will always be a balancing act. We are always going to be protecting each other and doing and saying what we think is right, regardless what the other thinks. I know that if I find it odd having someone else having so much control over what I do. I also know that he must find it even odder to be so much in control of another person. We didn’t choose to be in this situation any more than I chose to be ill, but here we are, tiptoeing around and trying to do what is right. I fully admit that at times I let him have his way, even when I don’t actually agree with him, but sometimes we have to accept the help we don’t want, to get the help that we do. It avoids disagreements and loud unmistakable exasperation and it lets me demand my independence when I really want it.

All marriages are partnerships, ours though has become somewhat unbalanced. It’s hard to sit and take and take again when all you have ever been was happy to give. What I can give now is so little, yet somehow I still feel we are a partnership, that we still share and we still care for each other and we still feel like equals. It’s an odd one, though, as it’s not like any other partnership that I have ever come across before. None of us marries expecting to be in either of our positions. It is a thing that is out there in the dim and distant future, something that old age might bring your way, but not expected. For a marriage to last through chronic illness seems to be about a fifty-fifty chance. We have been together over 16 years and it’s now 14 since my diagnosis, we have had our ups and downs like all couples, but there is one thing that I believe is true. Our relationship has been made stronger by my illness. I once feared that it would be the end of us, that he would run in fright of what it all meant, but that was a long time ago and didn’t last long. I guess the truth is that there are no handbooks on how to make your marriage last through chronic illness any more than there is one for surviving that chronic illness itself or being a carer to the person who has it. We all write our own ones, as being individuals means we can’t write it for anyone else, all we can do is try and give hints.

We haven’t reached and are still a long way from the end of that tightrope. What I know of our future tells me that it will only get harder. I will on my bad days need him more and more to do even the basic things for me. On my good days, I know I will insist that I can do everything myself, despite the fact we both know I can’t. But that is life with a pigheaded ill person.There will be days when we will be exasperated with each other and days when we still totally adore each other, probably a few which are both. If there is a secret to making this life work I guess more than anything it is just holding onto the love you have for each other and to push through those bad times, as the good ones always come around. We both know that I will have to hand over more and more of my life into his control, that he will have to take on the few things that I still do. We equally know that I won’t let go of them without a fight and if independence comes down to just brushing my own hair, I will brush every single one of them alone and be happy.

I have found great happiness in both my marriage and even the situation I find myself in now and that has a great deal to do with my fussy, fussing and frustrating, but always adorable husband.

Please read my blog from 2 years ago – 09/08/2013 – Time to face it

I spent some of yesterday making decisions, not major ones really but ones that have actually made me feel that bit better in myself. I set to on the list of bookmarks that have been haunting……

Who’s job is it?

I guess I should have known that this was going to be an odd week when Adam announced last week that he was taking a week off. He swore he told me before and I equally swear that he didn’t. Nothing new there then, as he is probably right. Another one of those annoying things about slowly losing your memory, you can’t demand any longer that you are right. I used to be the sort of person who could repeat word for words conversations had years ago. I doubt now I could actually repeat one that I had yesterday. It’s another one of those frustrating things that you have to get used to, not always being right. At times, it becomes another of those very personal things like it is some kind of retribution for being a know it all, you become a total know nothing for sure. Last night I was helping Adam with some of his college work, I thought I was on the firm ground as it was basic Excel and I do mean basic. There I was, the once queen of the subject; the person who could build complex worksheet not only filled with embedded functions, swish graphics and programmed to do all the daily work of updating by a simple single click; staring at a spreadsheet unsure how to sort out simple percentages. Of course, I got it right eventually, but I felt so stupid for getting it wrong on my first look. It doesn’t matter that you have the perfect excuse of no longer owning a brain, you still feel as though you are a first class, idiot.

I am as always when Adam is at home, at a total loss as to what day of the week it is, or how to work out time, when it isn’t all done around his working hours. I have been totally thrown at every turn and lost as to even how to get things right with our TV viewing. TV programs are usually either half an hour or an hour in length, so it should be simple. Yet, I have managed to make a mess of that simple calculation three times in the past three days. I have forgotten to take my meds and even struggled with the idea that it is lunchtime. It hasn’t been helped by the alarm clock being set for 8:30 each morning rather than 7:30. Add in the events of Monday and I really don’t stand a chance of being in control of anything. I may have softened my routine in the past month, removed all those rigid timings, but even in its softened form, it and I can’t cope. I have been very tempted to reset the alarm to its normal time, in the hope of removing one element, but I have to admit that that extra hour in bed is really nice when I get it. All of them are such trivial things, the kind of problems most people and even I several years ago would have loved to swap places with those I faced hourly. These days, they are major disruptions to my life and hard to get my head around. Once again, change, even such tiny ones just aren’t something that I can manage without it exploding into a major disaster of some kind in my mind.

I think that it was on Sunday that I woke from my nap to find Adam sat here at my desk. To my horror, he was cleaning it. Most people would be grateful of such an act, he was being caring and helpful. I saw someone making a mess of my life. He was moving about all those tiny things that have to be placed exactly where I last saw them, just so that I know the world isn’t ending. I sat here, once I had removed him from my space, shifting things back to where I thought they had been. Moving them over and over, trying to find the exact scatter pattern of pens and cream bottles that lurk to the left of the screen. Shuffling papers, and pushing the keyboard from side to side, then adjusting the screen, that I knew had moved, be it only by millimetres, it wasn’t where I left it. The whole time I was wound up to exploding point. Not meaning to be ungrateful, but so distressed that you would think he had removed everything on my computer hard drive. I can’t control things like that. I wish I could, but I can’t any longer. It has been on a downwards slope for ages and although I know that Adam understands, it doesn’t stop me afterwards from feeling really guilty over my behaviour.

Losing control, whether it is minor or major, is really hard to accept. I need my life mapped out, I need to know what will happen next and where it will happen. Which is part of what I was trying to get across yesterday. I know some took my words as being totally about euthanasia, it wasn’t. In fact, the majority was about knowing the details of what and where my later months or years will be spent and how and who will care for me. I have like every other single person out there lived for years, knowing that any minute I might find myself in the hospital. For me, it holds an extra trauma. A problem that is so huge that I actually fear it more on the how will I manage than what could be the medical reasons for being there. Just as much as my surrounding, I find strangers hard to deal with. If they are here, here in my home, well I manage far better, but still find it really hard. A couple of years ago, I found myself having to be visited by the district nurses three times a week. Thier fleeting visits always left me unsettled and at times distressed. I know that without a doubt that that situation will happen again, as there is a list as long as my arm as to why their presence could be required.

My need to be able to plan and prepare for what I know is ahead is based in the fact that I know I will be a lot iller than I am now. Knowing what the possibilities are as far as even my care, might just make it all that bit easier. I want to know what aid is available, the actual people I know isn’t possible, but just knowing, having a ladder of people who can be contacted for this or that reason, would make me feel more secure. Knowing what the possibilities are of pain control and other medical interventions that are available to me at home and what point that care has to be moved to a hospital. Knowing what aid is available for my care at home. Despite Adam being here, what care can I still have from the NHS to make his life easier. Would there be respite care? Can I stay here right through to the end, or is there hospice care available should it be too difficult? Where would that be? What are the costs, as we can’t afford anything really? The list of questions that haunt me is huge. Their worst side is the distress it will all cause me and what my reaction to people and places by then. One question especially haunts me, if my bizarre reaction to change gets worse, what then, how much would it change all of it?

As I said yesterday, I don’t intend to die any time soon, but I want peace of mind about what will happen in the future. When you know how you react to the unexpected, being able to put things in place so that I have the time to come to terms with it, could change everything. Not just for me but also for Adam. I know he already stresses over the idea of my going into hospital, partly because of this. He has already told me that he worries how he will manage to get it through to the Nursing staff and Doctors that I don’t deal with change at all. That my routine has to be stuck to, as throw it into disarray and I will be highly distressed by it all. There doesn’t though seem to be anywhere to get these questions answered. Nowhere that I can contact to start making arrangements for what I know is an unknown future, but one that I desperately want to clip the thorns off, for both of us. The closest that I have managed to come up with is to write a detailed care plan, but even for that, we would need some medical input and some of my questions answered.

It seems so wrong that all of this should be so difficult. After all it isn’t just for me, it is for the benefit of the NHS as well. Without a way of getting all of this sorted out in advance, some way of putting my mind at rest and with preparation time to get this stupid brain at ease with it, I will be a horrific patient, not on purpose but because it’s something I simply can’t help. My doctor is a really nice guy, but he is busy, far too busy without me wanting what in reality might be hours of his time, not in one session, but still time I don’t think that would be spent doing what his job is. But who’s job is it?

Please read my blog from 2 years ago – Unpredictable

Yesterday was my day of atonement and boy was I paying for every bit of Sunday! While I was writing my post yesterday I actually thought that I might just have got away with having a day…. https://livinginalimitedworld.com/2014/08/05/

Finding our balance

It was clear yesterday that Adam had been playing catch up with my blog. I have for a long time worked on a safe theory of not telling Adam about things when they happen. If I do, he goes into a panic mode and spends the next hours jumping at every tiny flinch or twitch. If I don’t, then he reads about it least 24 hours later or at least a point far enough from the event for him to see that I am not about to roll over and die and that no real damage has been done. From nowhere last night, he started questioning me about the blank that appeared in my brain when talking to Jake last Tuesday. Out of all the things I had written about in the past week, this was the event he had pickup on and was clearly still playing on his mind, no matter how far past that point in time that we had travelled. I guess we all have things that worry us and to be honest, I had totally forgotten about it until he mentioned it. I had like all the other odd things in my life, just chalked it up as the first. That doesn’t mean I am expecting it to happen again, just like my leg going on Saturday, it started as a first long ago, now it’s a concern.

When you live with a list of serious conditions, the odds on your body doing something to you that a healthy person would find odd in just a single day, is high. I am so used to finding myself wondering either what was that, why did it do that, or trying to remember if I have felt that before. My body is a mass of odd. If it wasn’t I think I would be stunned, I actually can’t remember what it is like to live in a normal body, rather dull I would think. Joking aside, my body really is a mass of odd. I don’t think I could find an area that hasn’t produced a strange feeling, a peculiar sensation or an actual pain from an ache upwards. A muscle that hasn’t felt a spasm, a twitch or weakness beyond a kitten. Or a nerve that hasn’t learnt to fire off messages that are nothing but complete lies. Maybe, yes, I am complacent and dismissive about it, but who wouldn’t be. Then there are occasions where something is so marked, so outstanding, that I can’t help but not just chalk it up as something new, but I do find myself afterwards just a little concerned. I admit that is the case with last Tuesday. Adams mentioning it was expected, I knew that just like I was at the time, once read he would know it was beyond anything that normally happens and would worry. We had one of those odd conversations, which are probably universal with couples when one has a chronic condition. Adam clearly wanted me to know he had read it, his tone of voice and the way it began with a long “So”, said he wasn’t really happy I hadn’t told him that day. I spoke in a bright, but matter of fact way, putting in the side note of ‘don’t be silly, it was something and nothing, not worth talking about.’ But I also echoed his concern, just to show that I understood how he felt. Our words didn’t matter at all, it was all in our body language and all in your voices. Both of us making our point and both of us equally saying this is something to be noted and not ignored.

It can be hard sometimes being chronically ill, not because of what it does to us, but because we know that in many ways it is our partner that takes the brunt of it. I don’t deliberately hide things from him, writing this should be evidence enough. I would have to be totally nuts if I ever thought that he wouldn’t read it. I don’t tell him everything at the time, partly as I want him to see that I am fine as I said, but also because if we talked about it all the time, it would become oppressive and take over both our lives in a way that I couldn’t stand. Being ill all the time is draining. We have so little time together, that the last thing I want to do is sit there talking about nothing other than the very thing that keeps us apart. I can’t hide everything from him, any more than I would want to, that would be totally disrespectful, but I do want to hide enough that we can have some semblance of normality. The time we have together can never be what either of us would truly call normal for us. My health stole 90% of our normality, but what is left is precious and means the world to me.

Just as much as Adam keeps telling me, that it is his job to look after me, I equally have a role to play, to protect him from unrequired worry. I think ever single person with chronic illness wants to do that. We can’t stop our partners, carers or families from worrying, even if we never let them see a single thing that happened for a whole month, they would still worry through every single day of it. Humans are like that. We also go out of our way to protect those we love and I can’t help being human. I hate what my health has done to me, I hate even more what it has done to Adam. It’s my health, my body and my problem, it just doesn’t feel fair that it can reach out and tear him apart as well. The worse my health is getting and more it feels as though I am hurtling towards a cliff, the more I hate it. I hate the facts and I hate the possibilities even more. I might be a good actress these days, but no matter how much I act, I can’t act well enough to hide it from myself. When you have been with someone for 17 years, trust me if you can’t hide it from yourself, you probably can’t hide it from them.

My health is a scary thing. It’s scary to me and it’s scary to Adam. If I could find a way of changing that, I would give up anything I can think of. It’s not fair, it’s just so unfair that anyone other than I should feel anything about my health other than me. My prognosis isn’t good, our prognosis still seems bright and if we both hold onto that, well after everything is said and done, it is something worth holding on to.

Please read my post from two years ago – 26/07/2013 – A simple thing called happiness 

I have been told over and over throughout my life that I set myself up for people to turn on me, it always comes out of the blue and for what I see no reason at all. I have also been told just how I do it, but does that stop me from a belief in the blanket truth and…

It’s personal

There are some bodily functions that in the past few years I have learned to hate. You know those things that we have no control over and in the main don’t even know are happening. That is until you are living with a condition that specialise in putting your entire life under a microscope. Last night, I had a bout of yawning, those ones that actually feel as though your lower jaw is going to dislocate. Something I am personally glad to say doesn’t happen that often, but when it does, it is something I don’t forget about in a hurry. I am sure that all of you know exactly the sort of yawns I am talking about, but I doubt most of you have tried this while your diaphragm is in spasm. Last night, just for an extra little bit of fun, I had two bands of intercostal muscles also in spasm. Painful? YES. It is like being inside a Victorian corset that someone is trying to their hardest to tighten just that bit more. As they apply more and more pressure, your insides which already feel as though they are about to burst free in response, try to spread into all the wrong places. If that wasn’t enough, there was one other issue, Adam was sat beside me. He knew I was in pain, he has lived with me long enough to know that. He has also lived with me long enough to know that I would have been covering the true pain and showing as little as possible.

We all learn our behaviours, covering pain is one that I learned a long time ago. It started in childhood, as we the children weren’t allowed to complain about anything and that included pain. We weren’t cuddled or soothed in the way as parents do these days. That wasn’t the fashion of our post-war parents. Being either sick or showing any weakness of any sort, just wasn’t acceptable. We were brought up to show a stiff upper lip and get on with life. If we weren’t sick enough or in enough pain to be in bed or hospital, we were well and fit enough to get on with life, go to school, do our chores, all without showing any ills. When my MS was unknown to anyone other than me, I was the mother of two small children. I was also the wife of a someone who because the doctors could find nothing, had decided that I was a dramatist and had no time for what he called my antics. I learned again that I had to cover everything that was wrong with me. The children couldn’t see me in pain, that would have just upset them, so I learned. My husband, who, fortunately, wasn’t around all the time, also had to be lied to, so I learned again. My lessons in acting over the pain in those early stages, when to be honest looking back weren’t anything at all in comparison to now, became part of me. They were lessons that meant I throughout my life since then has carried me through the whole horrid thing. I could work through the pain, I could even dance through it, just occasionally having to declare a so-called cramp, well it was only a partial lie.

I know that I don’t have the slightest reason on earth to hide anything from Adam, but I quite honestly, can’t stop myself. It is actually so much part of me, that I act even when there is no one here to see it. I doubt though that even the greatest actor on earth could totally cover the pain that enters my life from time to time. There are now times, like when I start yawning at the totally wrong time, that can’t be hidden totally. I might be full of Morphine and acting the hell out of life, but the pain is now visible. My face may not show it all, but my body lets me down and it reacts without permission and it is doing it more and more. I don’t like that, I don’t want Adam to have to see the truth, he worries about me enough without me showing what has always been hidden from everyone. I don’t want him distressed and feeling my pain, it’s one of those things in life that is mine, it’s somehow personal. Illness is intensely personal and I believe that is often forgotten by those around us and especially by our doctors. I know that my writing every detail in here, means that Adam has a view into it and gives him permission to be part of it, just as I have given permission to you to be part of it. But it’s still personal. As much as I know that doesn’t make sense when I read it back, it make perfect sense to me. I would actually put money on it that those of you with a chronic illness who are reading this will also understand.

This is my chronic illness, each and every one of them. It doesn’t matter what the medical stats say about how many of us share these conditions or how many of us share all my symptoms, they are mine, just as they are yours, if you share any of them. Whatever they are doing to me, it is my body they are attacking, it is me that feels it, sees it and lives with it. Doctors have our permission to poke and prod us, they have our permission to look inside us and to take our blood or even parts of us in a quest to diagnoses us. Their view of us is as an illness or a problem to work out. But it is our body, our insides and our diagnoses and all of those are intensely personal. The younger doctor, well on the whole I think they get that one, but the older ones, well most don’t even see us at all. At best we are a case, at worst we’re not even that. If we don’t fit into their speciality, we’re a waste of their time, time that now means they have to pass onto someone else as quick as they can.

I actually wonder sometimes if the fact that I do pour out daily what is happening and what my feeling about it are. If that actually makes me more precious about holding it all inside when it comes to my interactions with individuals. It doesn’t matter if it is Adam, Teressa or anyone else, talking about what is happening to me, either at the second or after, is something I try to brush over. How I am in microscopic detail, is in here. How I am when they are talking to me is in my voice, my words and my eyes, what’s hidden is hidden because it’s a form of personal and doesn’t need to be spoken about there and then. My brush off a statement of “I’m fine”, is there because there is nothing they can do to change what is happening to me. If I can’t change it, how can they and their worrying about it is going to do nothing other than make them feel bad. Which is another reason why it’s personal, I personally don’t want them to become ill out of stressing about my being ill.

Please read my blog from 2 years ago – 23/07/2013 – What annoyed us

When things don’t work it caused frustration for all of us, I am no different and I am heading for a really loud and explosive scream……

It’s important to remember one thing

Last night, in fact, not long after Adam came home from work, I asked him to take on the laying out of my medications. I decided that if I waited if I pussyfooted around arguing with myself, the result would probably be like many others. I wouldn’t do it. In the past, I have put off so many requests for assistance when they were clearly needed, that I know the pattern all too well. Hours spent trying to convince myself that my problem was a one off, even when it had happened several times in the past. Days trying to prove that I was up to it, that if I just concentrated totally, everything would be fine. Weeks of kidding myself, until it happens again and back to the beginning of an all too familiar circle. So almost as soon as he sat down on the settee, I asked him. I knew without a doubt that he would do it, that he didn’t really need me to explain why, as if I needed his help, he would give it. I, of course, still had to go through a discussion of what had happened the night before and to actually ask him if he would mind doing this for me. Sometimes, it doesn’t matter what you know inside, you still have to be firstly polite and secondly say the words, as without saying them, that final step hasn’t really been taken.

I was reasonably sure of what would happen, without any issues at all he set out my meds for me last night, while I watched over him explaining as he went why things were set up in my draw of drugs as they are. This morning also went as I expected, he was so far behind as he had taken too long in the shower or whatever, that he rushed out of the house without doing it. We will get there. I have already worked out the answer and it so simple that I wonder why I didn’t think of it last night. All we have to do is for him to sort out both my night time and the next morning at the same time, leaving my morning tablets sat in a medicine cup. As I don’t have any liquid meds in the morning, it is a really simple system and won’t have him remembering in a panic, once he gets to work. I am just waiting for either the phone to ring or for him when he gets home to apologize, something that’s not needed at all, but I know it will happen.

I suppose that it is inevitable that when you live with someone long enough, that not only do you know what they will do, but you also start to reflect each other. There is something within what I have just written, that on reading back suddenly made me realise that if we were to switch places, nothing would change. Life would actually be exactly as it is, we would still be reacting to each other as we do and our caring for each other would continue. Despite a list of reasons that have in the past and will in the future split other couples, we continue to just grow closer. I know there will be a million reasons for that, but one that stands out to me is that neither of us assumes when it involves the other and we always say sorry. Even though I can say with confidence what I believe will be Adams reaction or needs, as I am sure he can mine, we ask and we still say please and always thank each other. We also have a healthy respect for the fact that we can annoy the hell out of each other as well. No, we’re not perfect. But those four small things, somehow strike me as majorly important glue.

I actually remember reading those silly little cartoons series that were around in the 70’s called “Love is…..”. They were really simple, just a man and a woman, in Adam and Eve style, naked apart from fig leaves, but with a really cute aspect to them. There were two I remember, one was “Love is never having to say sorry” and the other was “Love is never having to say thank you”. Some might say they are right, in a way I get them, as when you are that close to each other, well the other will know, without the words being said. Just as I know even if Adam forgot to tell me several times a day that he loves me, I can see how other things might not need to be said, but saying them is our way of affirming exactly our feelings and the fact those feelings still exist just as they did the day we got married. I don’t believe that there is anything that doesn’t need to be said, choosing to do so just shows our total appreciation of the other and that even after 17 years together, we don’t take each other for granted.

I know that I don’t say thank you enough to him for all that he does, but that is actually down to him. Almost every time I do thank him for doing something I consider my job, he tells me that I don’t have to thank him. I know he doesn’t get it, but without saying thank you, there is a guilt that builds up, especially when I can see that he has had enough of lets say, cleaning the house for that day. Housework was always my job, but only because I was so fussy and as I remember him saying, I cleaned everything before the dust even settled. I know without a doubt it is a job he hates, but he does it and every now and then I still slip a thank you in and I still get told off. Being a couple when one of you is nothing more than a shape that fills a whole in the room, is hard. We don’t have what other couples have, we can’t go on holiday, or go out for the night and sex hasn’t been in our marriage for over 10 years. I could list and list all the things that we don’t have, but not one of them matters as we love each other and we never stop telling each other just how much. Neither of us is complete without the other and that is something that not even an army or illnesses can destroy. What we have will always be more than what we don’t.

The phone just rang, just as I knew it would and just as I knew he would be, he was worried that I hadn’t taken them. Every change that happens has it’s teething problems, but together we always find the answer, As long as we fix things together, solve the problems that our rather unconventional life throws at us together, then nothing can pull us apart. We’re not unique, I honestly believe that if you get through together the worst news that any couple can get, that one of you is either chronically ill or dying, or both, then you have what it takes to go on together and to survive anything life has left to throw at both of you. It just takes the ability to remember what brought you this far and will take you the rest of the way, the love you have for each other.

Read my blog from 2 years ago today – 14/07/13 – Walking the walk

I have so often wished that there was a machine that could record your every thought, so all I had to do was listen back to it in the morning and type my blog from my oh so perfect words, written in my mind as I went to sleep. I think since I was a child I told myself stories to help me fall asleep, back then and for most of my life they were the type of story that we all….