[confused1]

Cope, manage, pace ...... all words that have a little bit different meaning. Yes, I cope. I can hide my discomfort and pain from just about everybody except my husband and nearest friends. Manage is what I think you're talking about. I don't manage. I can handle one activity a day. That's it. Today I managed an amazing feat: I took a shower AND went to visit a friend. I came home exhausted after sitting in her house for two hours and talking. I had to eat a substantial snack so that I could cook supper. Yes, I know that's a bad habit. But by late in the day I often need to eat in order to be able to cook the evening meal. It's often just fine to do that, as many days I can't eat once I've cooked.

I don't know about anybody else, but I don't manage to get anything done. It's why I can't work anymore. Simplethings take the wind out of me. Some days, I can't get dressed. Many days, I can't stand to take a shower. Take a shower, go to bed. At least I sleep clean. :rotfl::lol: I tell you, if I have a week in advance to prepare for a "big day" then I can do it. And I can make it through. But don't plan on seeing me the next day because I'm going to spend the day in bed.

My hope and prayer is that this will get better. I have a good friend who has lupus and Sjogren's and during her 40s and 50s she lived with horrible pain. She says that now (she's 64) her health is so much better and she seldom has pain. I know that her health is anything but good. But she does manage. She can go and do and enjoy, even more than she could three years ago. So I keep it in my head that one day I will be much, much better. It's the way I get through, telling myself that this is temporary.

Do others do the same thing? Do you tell yourself things to get through the day? Make deals with yourself?

I wish I couldanswer your question with good news. And I apologize for saying so much. I sort of got started and didn't stop, :lol:

Sunny

 

[confused1]

MommyGiraffe, I think we are all in the anger stage. Maybe it comes and goes, but I believe the whole "stages of grief" is a continum and that we move up and down along that line depending on the circumstances of any given day.

Cope? Of course we all cope. What we don't do is get well. What we really want is our "old" lives back. I suppose that some get that -- remission or subsidence of symptoms to the point of being able to return to normal life. But for many of us -- certainly those who come here regularly, coping is a minute to minute affair. I don't believe it is possible for anyone with active symptoms to truly push that physical reality aside and live as if the disease doesn't exist.

Definitely, a positive attitude is good for anyone. And belief in a better future is good for the spirit. But, I've seen too many affirming, faithful, believing people die in the past year. Three good friends, none of whom could believe their diseases away.

I think in a sense, many people on this site are heroes, living each day with physical infirmities that would put others in a hospital bed. I read the stories here and realize my symptoms are mild and that I have little to complain about.

We adjust, all of us. We do cope. But we can't go back in time and we can't pretend to be healthy. What we can do is find a way to retrieve our sense of worth and self-value. Everyone needs to feel whole. I turned to creative outlets. When I feel well enough, I give my spirit a lift by creating something beautiful. I have accepted my house as being constantly in a state of --- , well, mess. My dust bunnies are now named -- I mean, who could "kill" the little dears when they have names??:lol: And I buy meals that can be cooked by taking off the top and putting them into the microwave for 18 minutes.

Life always changes. Who knows, maybe I'd have stopped sweeping every day even if I wasn't sick. I never was a very good housekeeper. And maybe I would have stopped working. It's impossible to know what that other future would have been. What we all have going for us is the present. I believe strongly that each of us must find an way to be glad to be alive in this present - the one we have, no matter what the daily struggle. That is coping.

Hugs to all,
Sunny