I related a lot to what Tendonshurt said but wanted to expand without hogging her thread. I liked what Tigg2 said about how you can hurt lying around or you can hurt doing something, and I have pushed myself to do something. My problem comes from more the socializing aspect. We have moved twice, once right as I was getting sick and then when we moved here when my disease was progressing rapidly. So I do not know anyone who knew me when I was well. That's nice as far as expectations go but it is really hard to make new friends with all the baggage I bring. Plus I am almost 40, we have no kids so there is no common ground in that aspect. In addition, I haven't worked in about 10 years. I have been on disablity since 04. For some reason people either think I never worked or just don't want to ask. But I find I have nothing in common with most normals and it is torture trying to find some common ground. Add that to I am a natural introvert, an only child from a very small family. When I was well, I was very social, and looked forward to spending time with people. Now it is pure torture. In addition of nothing to talk about, I will also get the, oh my cousin was sick and tried this new pill, supplement, diet, etc.And if you would just try them you might feel better. I am so sick of having to defend myself. Not only do those "Cures" do nothing for us, with our prescription meds, they could either hurt or kill us. One of my husbands friends hounded us for months to try this powder. Everyone they knew was now off all their meds, was feeling a 100% better, was back to doing things they hadn't done in a very long time. Well I finally got so sick that they were not getting our backoff clue of silence, I looked into it. It was nothing more than glucosamine and chondrotin. Now I know this has helped many as a joint supplement, but it has shellfish in it and I am deathly allergic to shell fish. So if I would have blindly taken it, I would have had a severe allergic reaction. So these supplements are not harmless and you must know what you are putting in your body. Hey, maybe I need to get the Letter to Normals on a t-shirt and wear it to social events.LOL

I am dreading the holidays coming up, my husband's business requires a great deal of socializing and it only quadruples over the holiday season. He is a very social person and if it was up to him we would be out every Friday and Saturday. It is just overwhelming. I am the type that would rather stay home cuddled up with my dogs and a good book. And we do, he goes to a lot of these things on his own, but ultimately it is not good for him to be at too many social events without his wife. We have already run into some issues. The last thing I want to do at the end of the day when I am at my worst, is do my hair and make-up, put on heels and go and try and pretend that I am interested in all their new toys and exotic trips while my pain is an 8 and I am trying not to show it on my face. We've been invited to a Halloween party, costume required and I so do not want to go. By the time I am ready, we drive over 40 minutes to get there, I will be ready to go and I feel guilty about making my husband take me home because he would like to stay and socilaize with everyone. I cannot blame him because if I was well, albeit I wouldn't be jumping for joy about going, but I would be much more able to endure it so my husband could enjoy himself.

Here is my experience with any party or gathering. We get to the host's house. The men make a beeline to where all the other men are and the women are in the kitchen, messing around with the food. If kids are involved their attention is split between kids and the prep of food. I have already used a lot of my energy to get ready and get there so if I need to go sit down, I have just isolated myself. People might come over and ask how I am but I have nothing to say as I DO NOT want to be one who only talks about my health, But with no kids, they definitely don't want to hear a lot about my dogs! So if they stay, I end up hearing all about their jobs, kids, family, vacations, etc. and I have not been asked one question about me or my life beyond how do I feel which is usually prefaced with:' Well you look like you are feeling better!" DO not even let me get started, just refer to Letters To Normals!! SO after they leave, my feelings are hurt because I was not asked a single thing about my life. Yet I listened to them go over everything in their lives since the big bang!!

I am stuck sitting there feeling isolated and alone. I can try and help but most often these people are friends and have done many get togethers and as I have to cancel ones where I am sick, I don't have the relationships that they have been able to build. So I end up feeling more in the way than someone whose and shortly I will need to sit down again and so it repeats. I would rather have a root canal, seriously!

Another example was when I tried to get involved in a Bible study. Of course afterwards they would all go for coffee, but most times getting to the study and being there for an hour or 2 was hard enough and I had no energy left for going somewhere else for coffee. So I don't have the time invested in bonding with the other women. My husband and I both went to the pastor and told him our situation and asked if any of the ladies would be willing to come to MY house for coffee. He told me he would ask a few and have them call, and no one did. This was our second attempt at a church that left us hurt and disillusioned. The first is a very long story ending up with me cleaning a members house(she was sicker than I was) while her son and husband layed on the couch and watched.Literally had to ask them to lift their legs up so I could vacuum under them.

So I have made an effort to make friends and socialize. If it was up to me, I would not do it. Now I am considered a very friendly person and if a neighbor needs something and I can do it, I will in a heartbeat. If I can't my husband usually can. It's just in small talk socializing I do so badly in and hate with a passion.

I know there is no easy answer, my husband and I are in therapy trying to come up with a compromise that works for us both. As of yet we are still struggling with me not wanting to go at all, and him wanting to go to everything LOL!!! No seriously, I know it is a negotiation. But at times I get frustrated having to remind the therapist that ours is not a normal situation. I was reading a blog and the person referred to he and his spouse being a threesome with the chronic illness being the third. So very true.

Well sorry for writing a book, just really venting and obviosuly I needed to vent !! LOL You would think it would get easier the longer we do this, NOT!