we are going through this right now with my eldest son and his fiance and her family, and their upcoming wedding, they dont understand why i cant stay longer or why the heat from cooking all day at their place is too much for me ect.... ect.... I actually texted him this morning and told him to do me a favor and look at what MS is and get his head out of the sand, well the word i used rhymes with glass, only thing i can figure is he is in denial, my so called friends dropped me like i had AID's ages ago when I was DX'ed, so that showed me how much they were my friends, as for feeling guilty i dont anymore, they can all, as you so poetically put it

BITE ME

My two best friends (and only friends) pretty much quit talking to me after I got diagnosed. One lives in another state, and she's got 4 kids, so I can understand that she'd be busy.

My other friend has tried, she'll email me about meeting up to go out for lunch. Then the date for the lunch will come and she hasnt emailed me back or called me saying when and where. But, she does have a kid, and a job, so I can understand that too.

It just sucks that they dont even call me anymore.

Only person who didnt disappear on me was my boyfriend. (yay!) He's been so nice, and a lot more understanding than other people. Might have something to do with him being pre-diabetic and he at least understands the whole "not feeling good" part of the MS.

He's been after me a bit to try to work out and build up some muscles and for me to at least try to keep in better shape. Good idea, but the lazy person in me is too lazy, and that's not from the MS. I'm just a big procrastinator.

Having MS has been a great excuse for not doing things that I dont want to do. Lately when I've used it as an excuse tho, it's been true and not just me fibbing because I didnt want to do something.

I'm so tired! Combing my hair makes my arms hurt. When I take a shower, just drying off and combing and drying my hair exhausts me. (I'm going to go get a shorter haircut soon) My left hand is numb (not totally) but my arm and hand get so tired and sore that even my favorite hobby of crocheting has been a chore lately.

I'm about ready to go and take a nap in a few minutes (I've been up since 11am...time for sleep again apparently) I'm actually happy the cleaning lady slacked off today and didnt show up like she was supposed to. Now I can go take a nap and dont have to listen to the vaccuum cleaner.

Most of my friends are pretty understanding if I pass on a lunch date etc, but I've got one friend, who I've been friends w/forever, that just doesn't get it. She's older than me and therefore, thinks that I can just drop everything to do things w/her. She actually gets mad when I say I can't. I have gotten to the point when I see her name/number come up on the caller ID, I don't answer. It's just too exhausting for me to deal w/her anymore.

In fact, her Sister's DH passed away and the visitation was last night. Well, I'm still on ''pay back'' days from my trip, so I just couldn't go out of town to pay my respects. I expect a phone call from this friend today wondering WHY I didn't go. Thank you Caller ID!

I know what you mean, DM. I love my caller ID. Sometimes it's just easier to avoid those people than repeat (in vain) the same thing for the millionth time.

My best friend from the 3rd grade, lives just 6 blocks away and I've seen her once in the past year. What can I say, I'm no fun anymore.

She has been ill and she does keep in touch by e-mail and calls once in awhile. But we used to share everything...her 3 kids call me Aunt Sally...still, and they are all in their 30s.

I hate this damn disease..

I don't think it's denial, honestly. I think it's just they don't understand and it's a wedding and they want everyone to be involved. It's great that they want you all involved. Your son, they know. They are probably just getting to know you. It will take time for those who don't get it to try and understand. If they don't, just go about your way doing what you can and let it ride. It's not worth it in the long run and in reality, your son will have to live with them the rest of their lives as long as he's married in the family. Maybe it would be better to let your son try to explain to them how your ms affects you so not to cause tension in the family for him.

Jim and I explain to people and if they still don't get it we just pass it off as ignorance and go about our way. It's much easier that way. We have a wedding to go to in June but I explained that it would be easier for Jim to just come to the after wedding bonfire because being up all day would wear him out. Our son is in the wedding and we really wanted to go but knew it would be hard on Jim. They understood and have me helping get the bonfire ready and Jim can stay home and rest until it starts. We got lucky.

Myself, I don't try to explain anything. If I am to decline, I do not give a litany of reasons, I simply say that I choose not to attend/accept/appear. If someone doesn't like it, well, they'll just have to deal with that themselves, won't they.

My friends are right there and I do make an effort to invite them for impromptu coffee, etc., even if it's just a matter of giving them a chance to decline my own invitations. It at least tells them that I do value them and want to spend time with them.

Social interaction is a two-way street as is all communication. It makes no difference why you will decline, why feel obligated to offer huge explanations?

I avoid using MS as my catch-all excuse; sometimes, I'm simply not interested in doing certain things. Conversely, sometimes getting dressed is too overwhelming. They don't need to know precisely why, I just ask for a rain check. No harm, no foul.


Wow, Frank. Way to boost your son's outlaw reputation among his new family members! I'm not sure it's fair to expect others to "get it" when we, ourselves, barely do.

I have to wonder about your "so-called" friends' true reasons for turning away if you actually treat people like that!

Good advice, Sandy. I've been talking to my son's future MIL and she is trying so hard to be understanding of my MS. His GF spends many a night here at my house since she works only a couple of miles from here so I know she tells her Mom how things really are for me....which I don't mind. It helps in fact. Her Mom actually said to me today that she doesn't want me to feel left out of the wedding planning but doesn't want me to feel obligated to do things that I know I just cannot do. She asked me how I'd prefer to handle this.....which I thought was so nice. I told her as long as she understood when I had to decline an invitation she could just include me as she would everyone else.....I'd just have to play it by ear and take things a day at a time. She really is a sweet person and is trying hard to be respectful of my limitations.

Frank, if her family isn't familiar with MS this will be a perfect time to educate them......but you'll just have to be patient and understand that even for us MS was a mystery when we were first dx and even now we're still learning about it. Give them a chance and you might be surprised! Good luck!

hugsss all
even undx, I know what you are saying, hard to balance what I can do, and how much I can do, with what I need to do for my own health. UGGG frustrating part right now is, somedays I get thru working and hardly can do with the kids anything...that sucks!! hugsss,sarah

I can relate. I don't have the energy for socializing. The thought of spending the evening out making small talk just makes me cringe. I only have energy for my daily chores, work and the dogs. My partner keeps telling me that I need to get out more, that it isn't healthy to stay home all the time. First of all I do not need people around all the time, I do not need to go out, I am not and never have been a social butterfly. I am perfectly happy to putter around and occupy myself. it does not bother me in the least to be alone. I have a couple of close friends and I have my family. What else do I need? Plut I just don't have the energy for obligatory small talk.