Sitting here getting ready to go somewhere in an hour or so, playing the same tired old record in my mind: where do I want the balance between painting myself as a pathetic invalid, and pretending I'm "normal"?

I know the only right answers are "it's nobody's business, you don't owe people an explanation, whatever feels right to you".

But I've struggled with this issue since before I was officially diagnosed. Just when I think I know where I stand, the circumstances are just a little different and I'm not sure anymore.

I've simply GOT to learn, or re-learn, how to say simply, "sorry, I'm not able to" or "thanks for asking, but not this time" or whatever.

I need to STOP feeling that my only two choices are to smile and say "of COURSE I'll help with the picnic/supper/pageant" or else "you don't understand, I can barely get my OWN meals."




*I do NOT think invalids are "pathetic", by the way.

its so hard to live within our means. Whether that is financial, emotional, spiritual or bodily issues. I dont want headaches, but there they are. I cant see, focus or concentrate, and yet I have 3 folks show up the same day with computers that need to be fixed. its been a learning journey to say "im sorry, I cant help you." I felt like I was letting them all down, and where else would they get free or extremely low cost help?

Perhaps you can confide in the pastor and ask for some helpful suggestions. I have made a joke of telling folks that I am completely unreliable. Today I may be able to make my own lunch but I never know what tomorrow will bring. it may bring me a day that I cant tie my own shoes, so im sorry, but you simply cant count on me. If they get pushy or start showing their desperation I say "look, I feel bad enough to say no, and guilting me only makes it worse. im sorry, but I have to stick by my orginal no, but thanks for thinking of me."

I hope you are able to find some easy answers to give folks that explain that you cannot do it, without revealing too many details about why.

I'm right there with you B2Y. It's hard because we want to do these things and yet, we are limited.

I also hate it when someone asks and I am doing good at the time. So, of course, I say yes. Then the "event" comes and I'm having a bad day and have to cancel out. This is really frustrating and upsetting to me.

I'm learning to say, "I can't do xyz, but I can do abc." At least this way, I feel that I am doing something.

I think this is the most frustrating part of this whole disease. I can never rely on myself or my own judgment.

I might feel good on Monday and plan to go to lunch with a friend on Thursday. Then Thursday comes along and my feet are numb, my balance is way off and being on my feet for too long becomes painful. I feel like my friends think I use my MS as a convenient way to back out of commitments easily. Nothing could be further from the truth. But the more I try to explain myself the worse I look. Sometimes I think becoming a hermit might just be the best solution.

The bad news is I'm in a wheelchair. The good news is because of that no one ever asks me for anything and feels they should help me NO MATTER HOW TIRED THEY REALLY ARE! Like, they have jobs, you know, and don't sit around all the time like me.

Unfortunately, I don't have that problem much, anymore, Blessings.. Nobody asks and nobody even calls, unless they need money or sometimes, moral support/a shoulder..

I guess they got tired of hearing "I can't" or my canceling at the last minute. I am a damn hermit..

Tell 'em, if you see me there then you know I can make it..

I can relate, Sally. Although my boys do call me everyday.....just to check in and make sure I'm okay.....sometimes I miss the interaction with people. Kind of reminds me of when I was home with my kids when they were very young. By the time DH got home I was desperate for an adult to talk to!

It never fails, though. Someone will suggest something to do and I have to say no. Then, when I feel like doing something there's nobody to be found! Maybe I'll recreate the "imaginary friend" from childhood!

Now, if only I could remember their names I could call them back up to come have tea with me.

I am fortunate that I have some really good friends that are so understanding. Since I stopped working, I found out who my real friends are. Anyhow, sometimes I have them over here for lunch or brunch. This way I don't have to worry so much about not being able to drive that day or the cognitive issues of a slow processor and not being able to focus well in a restaurant. We try to do this at least once a month. Again, they are really understanding and sometimes I don't have much energy to pull the whole thing together and they end up doing the "work" for me (such as picking up food on the way here and things like that).

It may be worth giving this a try. Ask your friends over for lunch, dinner, or even just tea. It's a great way to stay in touch.

That's a great idea, Trish. I do that with Family....you know, bring your own everything..

I used to be such a good host, I feel guilty asking friends to do it, but, what the heck. Now if I can just find some friends..

I guess I'll give you one of my imaginary friends. Let's see . . .since you like hunks, I'll give you Bobo. He is a great friend and stuck by me when I was afraid of the dark. He's a good companion but does like lots of boy things and may run off for a bit to do boy things. (Not climbing trees because, he always would climb them with me when the "girls" wouldn't).