Sex is a personal topic - I understand that and I'm acknowledging that right up front.
That being said, any part of this experience, including the physical aspects of recovery, aren't something I can talk to my friends about because no one really understands. They listen, but how can they possibly contribute? So I turn to anyone here who is willing to share either on this board or through private message.
My experience of GBS caused paralysis to my waist. This included losing almost all control of my "bathroom areas". I could always tell when I had to go, but it was an instant urgency, and completely emptying my bladder or bowels is still a challenge - GBS has a way of challenging you to keep your dignity about some basic bodily functions, doesn't it?
I came back home 20 days ago, and I think I was a bit ambitious. I wanted to get back to normal life in as many ways as possible, and as quickly as possible - which included having sex. But it's so difficult in a body I feel like I don't understand anymore. The issues are twofold:
First off, my loving and supportive (and very sexy) boyfriend is finding it difficult to want to be physical with me. Which, I can understand. If it were him who were sick, and always in pain, and couldn't take a full step while walking around the apartment, my first thought would not be "oooh, let's get it on". I'm sure I would just want to take care of him. And he does take care of me, amazing care of me. He is worried he will hurt me. And then there is the issue that my body looks SO DIFFERENT. Before I was smacked with GBS I was active, worked out regularly, invested time and energy into my body. Now, it's still bruised from all the shots and needles in the hospital, and my posture is different, and my major muscle groups are so soft. weak looking and tender to the touch. I definitely don't recognize myself when I stand in front of the mirror before a shower. That's not to say he doesn't still show me affection. He is constantly stroking my hair, holding my hand, sitting close to me, kissing me. We still sleep wrapped around each other, so it's not like he is disconnecting from me. It's just now our "normal" is sexless.
Perhaps the most frustrating part is that it's not a libido issue. It's not like the problem is that I'm no longer interested. I'm very interested! My brain still responds to him and the idea of being together in the exact same way it did before illness. My body is just not cooperating.
Then there is the second issued. In an effort to take matters into my own hands - literally - I was determined to not give up that part of my life entirely and decided to take care of myself. It was a bad idea. First off, I felt like a virgin all over again. Which was bizarre. It hasn't been since my teenage years that I felt awkward or nervous about my own body. My private areas are still a bit numb, and so skin doesn't feel like skin yet... and to the touch it felt like electric shocks were pulsing through my most sensitive areas, like being struck by lightning again and again from the inside out. And it didn't stop when I stopped, it went on for a couple hours after my quick, failed attempt. It was so horrible I cried, not just from the physical pain but from the realization that just like walking, and dancing, and being totally independent - sex is just another area of my life that isn't going to come back to me on my own time table.
Has anyone else dealt with GBS affecting their romantic relationships? How did you cope? Has anyone recovered to the point where sex felt normal again? Was it incremental progress? Was it sustained or were there good days and bad days in that area too?
*sigh* That's all I got...