I dont really know why I am posting this as anon - its not as tho we know each other walking down the street.
So I have been dx almost 4 years now. REBIF 2 years and now on Tysabri. I am almost 30 (DUM DUM DUMMMM).
So, I have never liked being touched, I dont like anyone stroking my hand or my arm - its uncomfortable like people are touching me with something really hot or sometimes its like someone has given me a dead arm just by patting it. Well, I have had this feeling for years. But I have alwasy managed to have normal “nocturnal relations” with my hubby. But the last year has been a nightmare the feelings of pain I get when he touches me anywhere is just too hard to bear, and I dont mean the pain itself - I could cope with the pain if it were just that. But when my mind is constantly on the pain I just dont want to do the deed, I have no desire at anytime to have sex - at all, ever. half the time I just do it because I feel guilty that we dont do it and I just hope and hope its quick. He understands - its not that he pressures me or anything and he is completely happy with our relationship. But I want us to have a normal relationship and it just always ends in tears. I also know that I am not helping myself by not talking to the dr or nurse - but I cannot seem to ever get myself to say it to them. Every appt I think “Thats it - I am saying it this time”. Then I never do. I guess I feel I will be judged and they will think that sex problems are the least of my worries - although I know in my head they wont say that.
How easy have you all foudn it to speak to people about sex? Have they given you advice? Did it help? I have only been married 3 months, we should be swinging from chandeliers - well if I had one and even if I did it would probably collapse with the weight.
I just will say again my hubby is completely understanding - he has MS too, he couldnt understand it more if he tried.