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……

 

 

 

 

 

Three in a bed

I’m fighting to stay awake today, I have lost count of the number of time that have found myself propping my head on my fist, with my eyes closing or closed when I notice, I am once more trying to sleep. Last night I managed to sit up to 10pm with little desire to head of to bed and I was delighted to have stayed that extra hour as it gave me more time with Adam, but it could be that I stayed too long even thought I wanted to and thought I could. It is always hard to get things like that just right, I bet that right this minute there are thousands of people in the UK who have done and now feel exactly what I did.

When you are fit and healthy relationships can be difficult to get right, when there is a third entente in between you, it is harder still. It can feel that way a lot of the time, MS really is the third person in between us all the time. In the early days it was the tiredness that often meant I wasn’t up to going out or round to a friends house, slowly my trips out for anything other than doctors and work diminished to zero. All the trips to a restaurant or the pictures just ended, our time together was just that, together the three of us sat day in day out in front of the TV not wanting to talk about anything other than what we were watching. I didn’t feel that I could tell Adam how I was feeling, as I didn’t what to burden him with anymore than what he had to handle. I think that both of us tried to pretend that my MS wasn’t destroying anything but it was and we had to admit it eventually. I think it was about 2 years after my diagnosis that I was suddenly not going downwards slowly it has hurtling me straight into the ground. My brain was all over the place, the pain was out of control and I was in a wheelchair. Talking was hard at all times, and even my Neuro could see what was happening without me talking. I truly believe that if at that point I hadn’t been put onto the Mitoxantrone treatment, well I wouldn’t be writing that was for sure.

Before the treatment started I hardly knew how to walk and every time we had a cuddle or curled up together, the pain sky rocketed. Adam had become scared of causing me pain and to be honest so was I, we both started to back away from each other, as close contact just wasn’t possible. I don’t remember us actually talking about it at first and I guess that it was about 3 or 4 months before we really spoke about why we had no sex life any longer. We had only been married 4 years and up to that point things had be great, then suddenly it all stopped. Adam said that he was scared of causing me anymore pain, something that I totally understand and totally agreed with as yes, that was often the result, but for me on top of that, I just didn’t and still don’t have the slightest desire to have sex at all now. I think at first I was worried about pain and fatigue, but I know by the time we talked it had moved on. It may seem a little odd that two people who were and are attracted to each other, decided to not seek help, but to just accept that was the way things were. It wasn’t even a long or difficult decision for me because as I said my sex drive has totally vanished and unless someone put the words into my head, I don’t actually ever even think about it any longer.

Death of libido in men with MS is fairly common, but not inevitable and most I know ask for help, I did once ask my Neuro for help, but it took 3 months for an appointment with one of the MS Nurses by when I had settled back into not being bothered, so I took it no further. I had asked for help not for myself but for Adam’s sake, I was worried that he would leave me because of it and that was my only reason, and as he said that wasn’t a reason. Now I know again as it was in 2003 that I don’t have the energy, if I can’t walk across the room anything else seems impossible to manage, my falling asleep after the first 5 minutes, might just kill the moment.

I can’t speak for Adam or anyone else who is in my position, I can only talk about what I know is the truth for me. I love Adam dearly and his willingness to accept that that side or our relationship is over, without it being the end of us, has made me love him even more, as I am not too sure how many other husbands would be happy with this situation. Sitting here thinking about a sexual encounter, still gets no other reaction in me other than, please no, the same reaction that I feel when I discover I have to stand up again as I have forgotten something. Yet on the opposite side, I strive to stay awake, just to have a few more minutes with him, love is not an issue.

I actually expect that there are many many couples who due to one of them being ill, no longer share the closeness that sex brings. Getting figures I think might be hard as I suspect that like us, they don’t see a reason to talk about it, I am only talking about it here and now because I became aware it was something I hadn’t spoken about at all, and I suspected that it is an issue to many are facing or may face in the future. In Britain sex is still a subject that people don’t talk about freely, so finding someone else in the same position is even harder. We all therefore deal with it in our own way, quietly and with good old British reserve. I can imagine with ease this being behind or at least part of the numerous divorces that happen when chronic illness moves in as the third person in a marriage, and more than any of the other health problems how you deal with it, and what the outcome is, depends on your own personal views and feelings. We love each other and we both accept that just like many other things, sex is just another victim of my MS, and as long as you do love each other, does it really matter that much?