What is OK

So here we go again a day of left leg pain, not the horror of last week but daily pain with a note of extra intensity. I have had a need in the past few days to write on a fixed topic and haven’t really updated how I am, the reason is simple, it hasn’t really changed. Silence for some people means that it has to have got better, it doesn’t for me and I am totally sure as well that it isn’t for the majority out there with a chronic illness. You can’t talk continually about how you feel, as it is in itself something that gets boring not just for me but I am sure for Adam as well. Being asked how I am on most days will get the stock reply that we all us, “I’m fine” or “I’m OK”, it actually means I am as OK as I can be. It would be incredibly hard to daily answer that question with a list of what has been driving me mad that day. I know from a life of being in pain, that if you don’t talk about it for a while, the assumption is that you are better. I have in my head a line of shocked faces from when I informed them of the reality, that I am never fine or OK, and that the pain I mentioned six months ago, or a year ago, is still there. There is a fine line between informing and whinging, none of us want to be seen as a complainer or a wimp, often a difficult line to walk. The problem starts when you find yourself leaving the consultants office at the hospital and you realise that once again you have said “I’m OK” while silently expecting him to read between the lines and pick up all those things that you have forgotten about, in the year since you last saw them.

I haven’t actually seen my consultant for about 5 years, Adam managed to get me there not long after I became housebound by not being able to use my wheelchair. At that point I could get up and down the stairs, as long as I went slowly, but once I couldn’t get out the appointments ended. It feels as though somehow they have washed their hands of me, because I am now a difficult patient to include on their list. Something I am not actually bothered about as the Neuro’s have never done anything helpful for me other than to sort out my pain meds, which I and my GP have fine tuned, I really can’t see any point in going back, especially if the pain clinic that I finally will see next month can improve things, the Neuro role in my illness is gone.

I had hoped that by now my sleep patterns would be back to normal, it’s now well into my second month of sleeping from 9pm on every day. There just doesn’t seem to be anyway of staying up past that point, and I have to say in the past few of days I have felt the tiredness settling in much earlier, then fighting to get to nine o’clock. I really don’t want to give up any earlier and although I don’t normally fight things, I am fighting this. The strange thing is that it seems to make no difference how much sleep I have in the day. I occasionally only have one hour instead of my normal two, and I have tried sleeping for three hours, but the night sleep still arrives when it is ready. Once it arrives, it has control and I never lie in bed for more than a handful of minutes without being deeply asleep. I am still considering letting my body sleep as it want over a 48hr period, just to see what happens, it is only the kick back from the change in routine that worries me, is it really worth it just for an experiment? I’m not sure.

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?