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Can use the understanding of people who have those bad days too.

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    #16
    No, I am not ok either and I agree that life is about adaptions. I have been DX for 10 years. Today was a bad day as I was dizzy all day. I had the bed spins like a drunk but I didn't even have the benefit of at least getting a buzz before I felt this way.

    Most days I try to concentrate on the things that I can do instead of what I can't do.

    MS sucks but we just have to wake up every day with the will to try to do our best to fight it and not throw in the towel. Things can always be worse

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      #17
      dreading te 4th

      Originally posted by sweetpea63 View Post
      Life has become about adaptions. I dread the summer months and everyone wants to be outside but I just can't. It's hard.
      Speaking of dreading the summer months - my DH's family is having a family reunion on the 4th of July. It's a great family, but I know there are those who will not understand when I don't go. We must adapt and not give up, I know, but I cannot bear the heat. I've told DH I want him to go, i will be fine at home with the AC. He doesn't like it, but he has agreed. Sometimes, others must adapt to us after all.

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        #18
        there are many different scenarios to which we have to make adaptions. We just deal with different things as they come along and we try the best that we can even when all we want to do is cry about it.
        hunterd/HuntOP/Dave
        volunteer
        MS World
        hunterd@msworld.org
        PPMS DX 2001

        "ADAPT AND OVERCOME" - MY COUSIN

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          #19
          I feel like screaming but I'm afraid I'll not be able to stop.

          I'm having a pretty bad time of it all myself. Sitting here alone with four dogs and myself to care for. Yep...I'm having a pity party of one and eight soulful eyes lovingly staring at me wondering if it's dinner time.

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            #20
            Hugs to you!

            Sweetpea, so sorry today isn't better than yesterday! You deserve much better, but life is totally unfair. As is the demon we know. I try to forget doing jigsaw puzzles, which helps, but then I have to get up from the chair, and it sucks. Hope tomorrow is better!

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              #21
              It's not OK to be not OK

              Dear Sweetpea,
              Thanks for starting this thread. I empathize so much. I've had MS for over 40 years and have gone through a lot of changes, but it still shocks me how devastating a "bad" day can be within the flow of the "regular" days, which are not that great anyway.

              I try to keep up my ordinary routine no matter what: going to the health club every day to workout, cooking dinner for myself and Tom, doing bits of this and that. But on a bad day, the struggle for even this minimal life is so strenuous, that I cry too.

              But the really hardest thing, the thing that can make me sad enough to withdraw from even my possible life and can create in me an ungrateful heart for my many blessings, is the void of special experiences. Anything really fun is inevitably too physical, too hot, too noisy, too lengthy, too inaccessible, too far away, too much to add onto a day's events, too late in the evening, too, too, too ... .

              I know I am fortunate in so many ways. Complaining seems like whining. And I know that my friends and family intend to be supportive. I am ever so thankful. But being helped so much, needing to be helped so much, is like a life in a tower guarded by dragons. I see the forest spread beneath me and remember its lovely paths. Every forest is enchanted, I read, for those with eyes to see it.

              Sweetpea, and all the others who have put such insightful sympathetic messages on this tread, don't give up hope. We do the best we can and grieving is no shame.

              Stay lifted,
              Mermaid
              "Life is short, and we have but little time to gladden the hearts of those who travel with us; so let us be swift to love, and make haste to be kind."
              
-Henri Amiel

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                #22
                Originally posted by Mermaid Susan View Post
                But the really hardest thing, the thing that can make me sad enough to withdraw from even my possible life and can create in me an ungrateful heart for my many blessings, is the void of special experiences. Anything really fun is inevitably too physical, too hot, too noisy, too lengthy, too inaccessible, too far away, too much to add onto a day's events, too late in the evening, too, too, too
                sweetpea, sending you huge ((((())))), along with everybody else on this thread.

                Exactly, Mermaid! It feels like my life was very large and sprawling and is now very tiny. Everything is too too. I'm a writer and I can have "experiences" by interviewing people and using my imagination, but nothing beats actual live experiences to feed the soul.

                A friend invited me to a recent NPR event and it probably took me eight hours over the course of a few days to get ready for the 1.5 hour evening program – which I had to leave early because I needed to go to the bathroom, which was inaccessible. So that was a struggle and I didn't quite make it. Thank God for black clothing. And then the program was finished. GaHHHHHH! I mean seriously.

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                  #23
                  Originally posted by sweetpea63 View Post
                  Sometimes I just have those days where I can't do the simplest thing. Today is one of those days where I can use a hug and understanding from people that get it to. 17 years with MS it's bound to take my a mental toll too. Some days when I fall or can't walk from the couch to the bathroom without issues I just want to scream.
                  I'm only 6 years into this MS thing but I started being in a wheelchair two years ago. I can stand and walk w/ the wall a bit. This last week getting up from a seated position (my bed, toilet, shower bench) has been 50/50, my poor mom has gotten her work out for certain. I can certainly understand your frustration! Not much of a screamer myself, but cryer definitely. My family's pretty good about just letting me cry then back to work.
                  Be patient and tough; some day this pain will be useful to you.

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                    #24
                    Originally posted by Mermaid Susan View Post
                    Dear Sweetpea,
                    . I see the forest spread beneath me and remember its lovely paths. Mermaid
                    I like this line. Very poetic. It's true though. I've only been with cane for a few years, but sometimes I look down a sidewalk I am walking and I clearly remember running it. The world was nowhere near as daunting a place as it is now. I used to jump up over curbs no problem, and now they have become monsters to deal with. I bet most of us with walking disabilities can remember walking, running, skipping etc... and we hope it will be possible again in the future

                    I'm sorry you were having a rough day. I understand. I work full time and have a social life that doesn't involve many stairs or curbs. I get sad sometimes when I see other people my age running or dancing or doing whatever they want, and I don't understand why this side of life has been taken from me. It doesn't seem fair. Then the feeling fades and I remember that disability or not, there are always 100 things to do and I get back at it. Thinking about my disability isn't going to change much.

                    So I hope you feel better, and maybe it helps that so many of us understand what you are going through.

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                      #25
                      Originally posted by Karenkay View Post
                      I'm creeping up on 25 yrs with ms. Maybe I need to take a cue from you and start screaming instead of being depressed.

                      I agree, this forum is a wonderful place to unload.
                      With you, nearly. Eighteen years in and counting, and to be honest, I'm just about done with being happy and clappy.
                      World Wars haven't lasted as long as this.

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