Ashamed & in Pain

Warning: This is a graphic post, so if you don't want to hear about my disease and my struggles, then you probably should not be here. This is what I created this blog for...so here it goes.

A couple of nights ago, my husband and I had sex. I let him get a little rough and possibly even pretended I liked it. Why, because a few nights before that, I had a dream that he cheated on me and told me that no other man would ever want me because of my LS and what it has done to me. So, even though that was just a dream, it still hit me to the core. Out of fear, I let him do what he wanted and I paid the price. I now have a huge split that is stinging, burning, hurting and chunks of skin are falling off-quite possibly the worst one I have had.

You are probably asking why I did not tell him to stop. I don't know. I really don't.

I told him about my dream and instead of him telling me that he would never say or do something like that he hugged me and then proceeded to talk about his fence. That hurt.

The next day we had my daughter's birthday party. I was so freakin grumpy due to pain. It did not help that it was hot outside and hot inside the place we went. Hot and LS do not mix. Any sweat makes me itch and sting like crazy. Just imagine a yeast infection, the worst one you have ever had mixed with the split you get when you give birth-that much pain.

When we got home, he told me he was going to go get boards for the fence. This pissed me off for two reasons: we needed to clean up after the party and we still had all the kids here.

He left and came home and went outside to work on the fence. I had no underwear because laundry had not been done, there were no clean spoons in the house and there was sticky stuff all over from the party. It had to be cleaned and chores had to be done. The house was hot and I was pissed. So I cleaned for over an hour and got really upset.

In seven years since I first got diagnosed with LS my husband has not once said, "Honey, you must be in so much pain. Why don't you just go lie down and I will take care of the house and kids." Not once. Out of all the days that I needed him to show some compassion he simply went outside and ignored me.

When he came inside we got in possibly the worst fight of our marriage. He said some very hurtful things. When I told him how much pain I was in he simply yelled, "Then go lie down or sit down." He does not understand that with three kids and a mess in the house, you can't just go lie down. He made it clear that the fence was a priority (as it has been the last couple of days, even missing a date night because of it) and I realized at that moment, how very alone I am. A fence, or your wife needing some compassion?! The fence can wait, I could not.

I took off with the kids and had to wear my glasses the whole time at the park because I was crying. He came to the park and I could not be around him so I left. I drove for a while and ended up at a parking lot crying. The worst part was that I had no one to talk to or call. Not for a lack of friends or family, but because there is not one person in this world that can relate to me...not that I have ever met.

This experience gave me a glimpse into my future with my disease and with my husband. Perhaps if I had an obvious disease that was out in the open, or on the surface, he would be more compassionate. I watch my parents together (my dad has Parkinson's) and my mom takes pretty good care of him. She has to take care of his needs all day. If he is having a bad day, plans get cancelled. How am I any different. If I am having a bad day, can the fence not wait one more day?

I really don't know what to think. I am a strong woman and hide my pain really well. But I showed my husband my fissure the other night and he was aware that I must be in pain. So I really can't figure out why he was so cruel. I should not have to ask for help each and every time I am in pain.

I am hurt beyond hurt. Sometimes I think I would be better off without a relationship. No sex, no pain. No one to hurt me because they lack compassion, no one to notice that my woman parts are changing and no one to hurt me.

But, I love my husband and cannot picture life without him. We really do have a great relationship and hardly ever fight. I just think that he forgets that I have a chronic disease and am in pain daily. I don't show it because I don't want to appear weak. I work two jobs, am raising three kids and maintaining a house. Sometimes I cannot hold it all together and it takes all my strength not to cancel things like my daughter's party because I am in pain. So I suffer through it so she does not look back and say, "We had to cancel my party because my mom is sick." I don't want my kids to define me by my disease. But I do need my husband to acknowledge that me even putting on that party was nothing short of amazing due to my pain and to let me cry and just lie in bed after and be sad for a day while he takes care of the kids and house.

I fear that he will never understand or be able to support me through this awful disease because every time we get in a fight about it he says he does not understand. He will never understand. But he could try. ~S