Me, MS and my sexuality
Open Door - August 2011 page 9
For a long time after my diagnosis in 2003 I tried to carry on as normal. Things came to a head in 2005 when a serious relapse left me with permanent pins and needles and burning sensations down my right hand side.
While addressing all the issues thrown up by my previously ignoring the situation - attending counselling and getting back in touch with an MS nurse - I became aware how patchy awareness is of the psychological and physical damage MS can inflict on our sexuality. I had mentioned vaginal numbness to the specialist and she replied, "It takes about six months to recover completely from a relapse. Any numbness left at the end of that is likely to be permanent." I felt like I was asking too much to be regarded both as a person with MS and a normal woman who wanted her body to work properly.
Not long after that I started dating an old friend. We began to discover that there were lasting problems caused by my MS. I struggled to explain that what might feel nice one night could hurt the next. Even stroking my side and my back could cause pain if I was tired. The terrible suddenness of my fatigue and the need to rest left him feeling unloved, unsexy and unwanted.
We had rows about this. He would be angry if I changed my mind about going to bed early one night so that we could have sex the next because I wanted to meet up with a friend or watch a film. I could understand his frustration - there is never enough energy left with MS.
In the end we have solved our issues. It has involved an enormous amount of give on his part but he has learned that if he pushes me, I feel less like having sex. I have learned to take one day at a time and to enjoy evenings where we do not always have full sex but do get intimate. His understanding and distance have made a positive impact and I now do not feel pressured or a failure if I am too tired to have sex.
I have learned that talking is the best recipe. If something is uncomfortable, I tell him. He has learned to ask how I am feeling and not to take it personally if I do not want him to touch my arm or kiss my neck, but to ask what else I might like!
MS has taken a lot from me, but it has forced me to learn the gifts of communication and consideration. I try to rest enough, not to drink too much or stay up too late, and to tell him how I am feeling instead of expecting him to guess. We are very close and we enjoy an active sex life, more imaginative I think than many able bodied couples since I'm not always awake enough to have full sex. We enjoy all sexual behaviour we engage in and are very happy together.
We got married in January and have decided to try for our first baby, which I'm sure will bring its own challenges. Whatever happens, I have a great husband and a very happy sex life - it is possible!
MS requires us to overcome barriers and to discuss issues which are intensely personal. I would urge everyone to be more open to solutions and to discussion.