Nothing can destroy love

Posted on February 5, 2016 by livinginalimitedword

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……

A guilty secret

Posted on December 31, 2015 by livinginalimitedword

I found myself feeling some unexpected emotions yesterday. Adam had gone back to work and I was once again on my own. It was the oddest thing, but I found myself with a sense of ease. Don’t get me wrong, I missed him, god do I miss him, but I was also at ease. I hadn’t realised that I had actually spent the majority of our four days together, feeling guilty. It’s something I often feel at the weekends, but we have been in a settled routine for so long, that I had grown used to it. Almost every minute that Adam is awake, and I’m sat here at my PC, I’m feeling guilty. Guilty that I haven’t shut my PC down, and that I’m not sat on the settee beside him. I know that he is equally occupied doing whatever it is he does on his laptop, or his second favourite thing, relaxing lain across the settee, browsing on his phone, but the fact he appears content doesn’t change how I feel. If I were to shut this PC down, then I would just be sat in a different location and I would be doing nothing, something that drives me up the wall if I have to do it, for too long. Not to mention, that I would also be feeling bad about not doing what I have a need to, writing, tweeting and keeping up, with what has become my life. For me every day is identical, weekday, weekend or holiday, it always remains the same, it’s part of my way of keeping myself settled, de-stressed and able to live as healthily as I can. My routine, is even more than that, though, what I do here online, is incredibly important to me. It gives my life housebound life purpose, something we all need. Yet, still I feel guilty.

Adam has had to give up so much of what should have been his life, because of me. He has taken over so much more than just the odd chore, he has taken over everything I once did, and on top, has taken over what I can’t do for myself. He deals with my mail, looks after everything to do with my medication, hospital care and much more. Not to mention, a full-time job, or the fact that my being housebound, outside of work, makes him housebound, in so many ways. He might be able to walk down the stair and out the front door, whenever he pleases, but he too feels guilty, guilty about leaving me alone. It doesn’t matter how many times I’ve told him that he shouldn’t feel that way, as he has to have a life, he just stays here, inside, day after day, night after night, with me, the person at the PC. He should have friends, people who he can share the world out there with, people who are so much more than a disabled wife, which I so often feel, is a wife in name only. I have to be the most useless wife anyone could ever have wished for. When he is here, when I can, I feel I should be sat with him, talking about whatever, being true companions, and I’m not even that.

As things stand, our weekdays are all the same. Well, at least, they were. We used to get up at the same time, although our time together was brief, we, at least, spoke a few words and shared a kiss, before he went to work. With my insisted change that I can no longer be up at 7:30 every day, as I need more rest, we no longer see each other in the morning. He has to rise, get ready quietly and leave without a word. Weather permitting, he comes home for 25 minutes each lunchtime, stopping just long enough to put his mind at rest that I’m OK. Failing that, he phones and more than double checks, that I haven’t had some terrible accident, the sort, I have never had. Come evening, after he has been for a walk or stopped by the shops, he returns, for those precious three hours we can spend together before, I once more have to sleep, at 9 pm sharp. From then on, he’s alone, hour after hour, into the night. At weekends, he stays here, a short walk, weather permitting, but other than that, we are here in our home. Me, at my PC, him at his laptop, or doing the housework, cooking, changing the bed and carrying out all the other things that a house needs taking care of, not mention, his care of me. Weekend, or weekday, it’s just those three hours in the evening, it’s the only time we are truly together, and that leaves me guilty.

I guess that’s what chronic illness must do to us all. We land up feeling guilty, just as our partners feel guilty as well and there appears to be no way around it. When we first met and married, we were rarely at home, we didn’t spend our hours sat in silence, separately doing whatever, in the same room. We were together, connected always by hand or body, not isolated, not two people, more one. Having three in a marriage changes everything, as that’s how my health feels. It has pushed its way between us, separating us in almost every way, the only thing it hasn’t done, is to break our love. We can’t go out together, we can’t do anything together, physical contact causes me pain, so even when we are sat beside each other, we’re still apart. Three hours each day, when we watch TV together. Is it any surprise that I feel guilty. It’s me that ill, not him, but he is paying a higher price than I do. I might have all the physical pain, but I know he feels it too, in so many different ways. Chronic illness never affects just one person in a partnership, it’s cruel, destroying “lives”, not just “a” life. No one warns us that there is a future ahead that will be filled with guilt, because of these illnesses no one can do anything about.

On the odd occasion that Adam ventures out for a day without me, he always checks that it’s OK with me first. Why would I ever stop him from going anywhere? But I do understand his question, it’s that thing called guilt again. He’s guilty about wanting to do anything, without me. What he doesn’t get, is that makes my guilt even stronger, I’m guilty because I’ve made him feel that way, even though, I’ve done nothing. You can’t avoid guilt, it creeps up when you’re not looking and suddenly it’s there, once more eating away at you. No matter how well we understand each other, no matter how much we are in love, we both racked with guilt, over what we can’t change and what we should have had.

When Adam goes back to work after a few days off, he always jokes that I will have peace and quiet when he’s gone. That I will be able to hold a party, have fun or any other ridiculous playful notion he can come up with. Our time apart is good for both of us. Adam has a few hours of freedom, yes, I know he worries about me when he’s not here, but he has a taste of normal life, the life we all should have. I, well I too benefit, but not in the way he thinks, my guilt goes away. I’m not holding him back, he’s free of me, my needs and my health. In an odd way, we both have a few hours of freedom as I can sit here, doing what I need to, without the guilt that I’m partially ignoring him, which I’m not. I spend those hours not just busy, but as I said in the first few lines, I spend them missing him. But that love, you can’t escape it, any more than we can escape my health.

Please read my blog from 2 years ago today – 31/12/2013 – Just life

For those that don’t live with an illness that slowly destroys more and more of your body, I know it must be really hard to imagine the truth of our lives and how we even manage to keep going. I know because…..

Taking the pain

Posted on January 28, 2015 by livinginalimitedword

Despite being up nearly an hour early, I am already so far behind on my day that I doubt I will really be able to catch up. I woke both needing to go to the loo and the pain in my left arm that I have woken with a few times recently, was back again. I quite simply can’t work out what I am doing to myself to cause it, I know it could be something to do with my PRMS as I have had continual problems with that arm now for years. Waking and finding that it feels heavy and sluggish has happened so many times I couldn’t possibly count them, this pain though is new and is in places that mean I am sure I am putting it in some odd position while sleeping, four hours on and it has nearly totally vanished again. Being up early had a pleasant twist though, with Adam now making it into bed at night I didn’t have to return to bed and just lie there waiting for the time to pass, I could just come through here and start my day. There has been so much going on in the last week that I realized that I haven’t been for a shower and Adam hadn’t reminded me to either, so for the first time in years, I had a shower in the morning. I know it wasn’t probably the best idea as my balance for some reason always seems to be worse when I am first up, but it was an oddly pleasant thing to be doing, despite the fact it was totally out of routine and it kept going through my mind that I was simply doing the wrong thing, only time will tell. It doesn’t happen often, but for once I actually enjoyed my shower. As I have been doing for a long time, I now always twist the showerhead so that the water isn’t been sent at me like vicious spikes, more a gentle cascade, today was one of those days where it was just perfect. When there is something that you have to do, but you know that it is going to cause pain, well you are put off from even trying. I sometimes even wonder if part of the reason that I totally forget to do it without being reminded over and over, is in fact part of the reason my brain finds it so easy to ditch as a possibility, a touch of self-preservation. Today it all went well and I found myself in the rare position of actually not wanting to leave the warmth of the water and I did stay a little longer than normal, despite the fact I knew Adam would be wanting in there at any minute as I had heard the alarm sounding not that long after I got in there. It was a sudden pang of guilt that shoved me out, as I remembered chasing him out of his shower a few days ago so I could go to the loo and here I was dilly-dallying.

For three years now we have lived with our living room suite being covered by throws, it used to be totally beautiful. We chose it as after months of searching, I had eventually found two settees that were the perfect size to fill the two spaces we had in the room, plus they were pale cream with loose covers so that I could wash them whenever needed. Added on to that, I knew I had found a total bargain as together they cost less than I had seen other similar suits costing. Everything was perfect for the first 4 years, then the material started to thin in any place that received heavy wear and each time I washed it, it got thinner and thinner, so I covered them up and although I thought they were a total mess, I had no other option at the time. A couple of months ago I received a payment that I didn’t expect from the credit card company, thanks to the “PPI” scandal I got back every penny I had wrongly paid them, plus a small amount of compensation. It isn’t quite enough to pay for the work, but close enough when I add on the money I have saved by using an e-cig instead of real ones all the time. It means we can at a last afford to get our settees looking like new and fit to last for many years to come. This morning we had our second quote, I always like to shop around before I say yes, so we were both up and speaking money and fabrics before 9am. Thursday will hopefully bring our third and final, but so far the one we saw this morning is winning. There were several things that made his company stand out too me and the materials we saw were much better quality. As soon as I said that I had MS, they said at no extra cost due to my illness they would include changing the cushions for orthopedic one, I might actually be able to get up off it without feeling as though I am fighting my way up a mountain. Thursdays appointment is going to have to come gold plated and wearing feathers, otherwise I honestly think they are on to a loser. It’s odd how something as little as the expectation of having a suite that I can be proud of makes to how I feel, if I could, I would be walking with a distinct spring in my step, the first for a long time. It is also more than that, it is one of the things that is on my list of things to sort out for the future when I am not here. I have a strong need to know that our home will take Adam onwards without the hassle or expense of doing the things he would just put up with. I don’t want him to be putting up with anything, I want things perfect for him and as the salesman said, do the work now and it should make the suite last at least another 15 years. The last ten days have turned our lives upside down, it somehow seems right for us to be sorting out other things together as well.

I seem to be popping more booster pills in the last few days, I sort of expected this, it is a fact that all forms of MS don’t react well to any form of stress. Clearly when life takes a turn and you have to almost wipe the slate clean and start again rebuilding relationships and all the things that surround them, well an increase in pain and fatigue is inevitable, which without a doubt is all part of our problems. Adam has spent so long trying to protect me from the world, to maintain a calm and stable home life, that he just buried everything out of fear of making my health worse. I can’t speak for him, but I know enough now to know that what I have seen in the last few years was a totally loving and caring front, covering a mind filled with a million things that couldn’t be said. I have said it many times before, but an illness like mine doesn’t just affect the person with the illness and I fear that right now there are carers out there doing exactly what Adam has been doing, all I can say to any reading right now is talk, please talk. From my side, the last thing I ever wanted was to put him under any pressure, I still can’t believe that I was blindly going on with life unaware of it all, but I guess that we all want to believe that life can go on as it always did, Adams desire to care for me in every way was working too well for me and not at all for him. Taking a few more tablets for a short while, well it’s worth it, I can manage a bit more pain if it takes away the pain from him.

Please read my blog from 2 years ago today – 28/01/13 – There is no fear.

I had a message yesterday from someone on Twitter yesterday in which they said they admired my ability to cover my fear, I didn’t answer it at the time as 140 chrs would have been impossible. I just hope the lover of honeyed parsnips is reading today. To some I know that it will sound odd……..

Another door opens

Posted on January 27, 2015 by livinginalimitedword

A major question appeared yesterday, one I thought was in the past now and that both of us had come to terms with in our own ways, my death sentence imposed by my health. Those who weren’t reading back in June 2013, well click this and it will take you back to the day I was diagnosed with COPD and the following days were I worked through the impact and my conclusions at the time. Oddly although we both knew that my PRMS was equally a slow death, it was one where we had no time line, no point given where things might end or ever a time line of how my future would pan out. My diagnosis with COPD couldn’t have been more different and for that reason our reactions were very different.

A diagnosis with something slow moving, like PRMS, is always going to be difficult, but you don’t look at it as a death sentence, it is more a life sentence. You are going to die sooner than you might have without it, but it doesn’t feel like you are dying, it just feels like you are being given a very unfair and unbelievable future that none of us want to face. I don’t know if it is our age difference or if it is because we are very different people, but I accepted it with much more ease than Adam did. I suspected then as I do now, that it had a lot to do with him losing his father when he was just 10, I was going to be the second person he loved, who was going to leave him far sooner than he could imagine or handle. But as the months and eventually years past and I was still here, not fit and healthy but here, I thought he had accepted that there was nothing we could do about it and we had to just enjoy the years we had together as much as we could. I stopped thinking about it, yes occasionally something would appear on the news or in some TV program that would trigger a moment of thought, even discussion and occasionally tears from both of us, but you can’t spend your entire life just waiting to die. Life goes on and we seemed to be together on the same page and working our way through our life together. Then came the COPD, it was very different for both of us, as it was a totally different situation, this time I was given 10 years to live if my now diagnosed Emphysema was to kill me, or sooner if my PRMS managed as it has been trying to ever since, to squeeze my lungs so tightly I couldn’t breath at all. Suddenly the whole ball game changed and everything had a totally different feel. We spent days talking and Adam seemed to accept what the doctors had said and what I had decided, that life would go on unchanged, other than making a few arrangements for when my time was clearly up. In fact, I actually believed that Adam had accepted it far better than he did my PRMS, well he was older and had already handled the original diagnosis, so once I saw normality returning, I didn’t give it a seconds thought, I was so wrong.

Last night I realized that I had got it wrong, our short week of talking after the diagnosis wasn’t enough and we both still have a lot to work our way through together. I was wrong in the way I handled it, I did what I thought was right, to work it out in my head and then write it all down, discuss it and close the book there, separate from everything else. I have always like most people departmentalised my life, each part of it separate from the next and not allowed to affect any more than they had to, any other aspect of life. It is undoubtedly a coping mechanism, but unlike many others, I always made space in my mind to think about things even if no one else knew I was, nothing was boxed that tightly that I couldn’t see into it, work on it and close the door again until the next time. Hence a lot of my posts, glimpses into each room that I have revisited and felt a need to reassess or adjust what was going on in there. What I didn’t realise was that I was heading forwards with all the things my health was doing to me, while Adam was still holding everything back at the points we last spoke about it and that he hadn’t been giving me his fully feeling about any of it, because he didn’t know how to without causing me more issues along with showing how it really was hurting him. As so often is the way in life, we started to talk about it all far to late in the day, I was too tired and at the point where my body was shutting me down and I just couldn’t stay up long enough to really talk about anything with any logic or feeling. It isn’t just one of those things people say, men are not as good as women at dealing with emotions or about talking about them, I found outlets along my side of life, through friends at first then through writing and I hadn’t been talking to the person who I really should have been, Adam. I thought that I was protecting him, something we women are bad at, we always think we have to protect those we love, when in fact we aren’t protecting them, we are pushing them out.

Being given a ticking clock to live with isn’t a case of trying to not hear the tick, or listening to it every second of every day. It is like that heirloom grandfather clock in the hall that you don’t hear when the world is awake and noisy, yet the second the house is quite and you want to sleep, that tick is so loud that you want to take an axe and destroy it, but you can’t. When you do hear the tick it can drive you into places that you normally wouldn’t go and when you are there you want nothing more than to reach out, but you fight it over and over as you don’t want to hurt the person you are looking to for comfort, you believe they are handling it all so well. When both of you play that game, well the results are bound to get messy. This talking game we started last week, is showing up flaws in both our methods and showing me more and more that neither of us can be strong for the other, when neither of us have quite fully dealt with our own feelings, feelings we should have shared. I honestly thought that the time would arrive driven by my health when we would talk again, that that was the normal way people deal with these things, no one had ever shown me a way of doing it differently or a need for anything else, it appears that other things has brought the time around sooner than I thought.

It’s hard for anyone dealing with the unknown, even harder when it is something people never talk about openly or they don’t have people who have been through the same to turn to. I have never seen it, or like anyone else been taught how to die or how to help someone else who loves you to go through all that this process brings with it. It is on one level the worst thing anyone can face and on the other the greatest adventure anyone ever goes on, as its the only one that no one can show you what lies ahead or how to behave along the way.

Please read my blog from 2 years ago today – 27/01/13 – A loss of trust

Yesterday evening I discovered that I have been telling myself lies and doing so with great ease and accuracy. This is a little long I know but bare with me as the sequence of events is important. Every second Saturday…….

Feelings change everything

Posted on January 26, 2015 by livinginalimitedword

For the third January in a row, I have found myself in tears on a Sunday evening, the series “Call the Midwife” is back on our screens. I find it a really great series, well made, true to it time line in history and with every episode it pulls on my heart in ways others might not feel it, as it keeps touching on subjects so close to my own life. From the child who broke my heart for ever, Jeffery, through the one I just couldn’t reach, Christopher and the one who’s love is so important to me as I lost her, then found her again, despite her father’s best efforts to keep us apart, she still comes home to me now, my beautiful Teressa. Due to circumstance more than anything else, all three of them are locked in my heart as tiny children, even the two who are now over 6 ft tall and dwarf their mother. I really shouldn’t watch shows like that, last night my pain was so clear that Adam stopped what he was doing just to give me a cuddle, he wasn’t even alive when Jeffery was born, but he knows better than many just the impact he had on me. Yet again the odd tear is running down my cheek, I guess we never forget and it never truly stops hurting.

I woke in the middle of the night needing to go to the loo, I don’t know what time it was but lying there beside me was Adam, it’s the first time in over 8 years that we have shared our bed at the same time. After several nights of him saying he would come through, he had at last made the jump and was there just where he always should have been. I don’t know if I woke him, or he woke me but he spoke almost as soon as I started to move, which instantly told me that my earplugs weren’t working. They only work well for about 3 days, then need to be washed before used again, it is as though they lose their spring and can’t then fully seal the ear drum from sound, so when I returned to the bedroom I had to try and find new ones, all the time hoping I was not disturbing him which I am sure I did. I had been really surprised to wake and find him there, but it was a pleasant surprise nearly marred by my falling over, I don’t know if it was because he spoke to me as I was putting on my dressing gown or pure coincidence, my balance slipped and felt myself starting to go backwards. Stupidly it flashed through my mind that I couldn’t fall, not then, not just after he had come to bed for the first time, that was more in my head than any danger to myself. Once I had made it back to being actually in the bed, he rolled over so he could hold my hand, I was glad to hold it but it was so odd just trying to go back to sleep that it took me much longer than usual, I can see it is all going to take both of us a little time to get used to it again. I know I woke several times more before the alarm sounded, mainly as I was finding being cuddled up in my normal fashion of the duvet right up under my chin was causing me to overheat. I had totally forgotten that lying next to him is like lying next to a fire, he somehow radiates heat constantly something I have never discovered to be true of anyone else I have ever known. If I am being totally honest, well I could go back to sleep right now without thinking about it and for some reason, I am also not able to hold a constant temperature this morning, I am either too hot, or too cold with no happy measure that works throughout my body. Right now, my top half is roasting and I have had to take off one of my dressing gowns, but my legs are freezing, it is all part of my PRMS I know that, but I also know that if I haven’t had enough sleep it is always worse, but as I said we will get used to it. I am sure that within a few days of sleeping together again, we will do just that, sleep.

It’s going to be an odd week again as he is off now until the 4th of Feb, as much as I love having him around, it never leads to a week that feels as though it has been normal in any way. I guess that is the reason why when anyone suggests that I should have a carer who comes into see me, well I turn it down forcibly, in a way I actually cherish that little bit of freedom that allows me to do what I want without having to think about anyone else’s needs or wants. Part of that, I know is down to my just being and independent person, but there is also a large dose of actually just enjoying my own company. Adam often jokes that I enjoy the silence when he is not around, but it is, in fact, the total opposite that I enjoy. I love being able to have the TV on loudly, not worrying that it might wake him from his normal slumber on the settee, I also don’t have to worry about letting cupboard doors bang or the floorboards creaking, I can just go about my day with my mind on nothing else but myself and what I want and need to do, when I want to do it. I know that sounds selfish, it’s not meant to be, but I know the day will come when what I want just isn’t going to be practical and I am going to have to share my entire life with others there to care for me, so whilst I can still manage, well I am going to make the most of and enjoy every minute of it. When you know your future, well you honestly then see what you have right now in a different way, being myself has become something I hold onto far tighter than I ever did in the past. For most of my life, I was always happy to go along with others wishes and accepted that what I wanted was just a small part of a much bigger picture, it took me a long time to work out, actually I don’t think I really did until I was told I had 10 years left, from then on I know I have become that bit more selfish and that bit more determined to have my life my way. I just read that back and it sounds so bad, it isn’t meant that way at all, but those who read regularly don’t need me to explain that, I wouldn’t miss a moment that I do spend with Adam, when he is awake.

Right now I don’t know why but I am in pain in both my armpits, it happens from time to time, but there is nothing there that I can find to be causing it. One of the things I have found in the last few years since my walking has become somewhat unsteady, that I develop odd pains in odd places. I am sure that I what is happening is I am pulling muscles when I catch hold of things to steady myself, just like the mysterious bruises I used to have all over my legs when I was still working in the office, I am managing to damage myself in my attempts to save myself from worse injury. I doubt there is a single person with any form of MS who hasn’t found the same thing to some extent, it somehow though just doesn’t seem fair, it feels as though you simply can’t win and this stupid illness will get you one way or another.

Please read my blog from 2 years ago today – 26/01/13 – Arguments inside

I have been reading through old entries in this blog, it is hard for me to get my head round just how much I have written in one year, mind you if you write everyday if is bound to add up quite quickly. When you sit down everyday with a purpose that says you have to write exactly and truthfully, how you feel and what has happened in the last 24 hours, it may sound either really simple or really difficult……..