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?