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    Dissapointment

    I'm really hating how MS is bringing a lot of disappointment to my life.... When I can't do the things I used to, it not only is disappointing to me but others...family, friends, coworkers, etc. That makes it that much harder when I see they are also disappointed....It just piles on top of what I'm already going through.

    I know I'm doing the best I can but sometimes I don't think they see that>> "I look so good" - yeah, but you can't see my brain and spinal cord ....yeah, It's like having a nice shiny, spiffy looking car that bogs down when you step on the gas because the engine isn't working properly. Yeah - I'm not "playing it up for sympathy....really" -- I guess it may seem like it whenever I'm having a good day and keeping up on top of stuff and then have a relapse..."but you weren't able to walk as fast last week" -- yeah, that's why it's called relapsing, remitting...

    Please feel free to post your own frustrations with how MS has brought disappointment to your life... I usually like to keep on the bright side and be grateful for the things I can do ...but hey, the sun can't shine all the time...sometimes you have to acknowledge your feelings and vent

    #2
    Hi VikingKitty,

    I can certainly relate. I have had many disappointments with this awful disease but I just recently had a big one. After years of excuses to not getting in a pool even though I wanted too, I finally did about 2 wks ago. I wanted to see if maybe by some miracle I could swim. Well, I could not, my left leg sunk like a lead weight. I do have drop foot but was hoping I could lift and kick in a pool and even though I haven't swam in long time I was hoping. So yes it was a big disappointment.
    God Bless Us All

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      #3
      Originally posted by REG53 View Post
      I wanted to see if maybe by some miracle I could swim. Well, I could not, my left leg sunk like a lead weight.
      My heart sank right along with your leg made me sad to read ((hug))

      Comment


        #4
        Originally posted by VikingKitty View Post
        I'm really hating how MS is bringing a lot of disappointment to my life.... When I can't do the things I used to, it not only is disappointing to me but others...family, friends, coworkers, etc. That makes it that much harder when I see they are also disappointed....It just piles on top of what I'm already going through.
        Yeah, I have been one of those aggravating Type A perfectionist all my life, then MS arrived. For a while I was able to push through it and still get things done - well mostly. But after over 20 years I am no longer able to just push through things. My house is such a mess that it depresses me, but I don't have the energy to clean it properly - or even to maintain the few rooms that I try my best to keep on top of . The yards? HA. Not gonna happen again, but that too is such a disappointment to me. I love the flowers and shrubs that I used to have blooming, and the koi pond was at one time my pride and joy. Now it is just another reminder of what I cannot do.

        Family knows about my MS, but like you say they seem to think that I am doing so well. I am not in a wc, so it can't be too bad. And because (for my mother's sake) I still handle the family Thanksgiving and Christmas dinners then there simply isn't any problem. But they aren't seeing that it takes me all year long to get the stuff together for the dinners, and that for at least a week before I am non-stop (well under a very tight schedule checking off lists) trying to prepare the dishes and last minute things to pull it all together. It is almost a resentment to me that they don't understand that things aren't what they once were - or maybe they do and since they cant be bothered with it they accept it? But it is disappointing to me that by the time Jan 1st rolls around I am in bed trying to recover.

        My granddaughter simply loves it here at 'silly grandma's' house. And she is a good kid - for me anyhow. But she is a 5 yo with all the energy that a 5 yo has to spare. I remember once my daughter called to see if she could come over to spend the night and I was feeling really bad, so I suggested maybe another time. My dd told the baby that I was sick, and the baby looked at her like she was crazy. She told her mother that I was always sick, so why couldn't she come out anyways ? I love her dearly, and she seems to really enjoy her time here (and tries so hard to be good for me) so it is a major disappointment to both us us when I am not up to dealing with her .

        I feel that I am a disappointment to my DH, but he insists that I am not. I feel that I should have a good meal ready for him after he gets home from work, but too often I cannot even manage that . He is forever telling me that all I "have to do is to be here and look beautiful". Since I cant manage the 2nd part I work hard at the first . But honestly I feel that he is getting the short end of this relationship because I simply cant do the things I would like to do.

        I dealt with the job loss disappointment but there are still times when it hits me all over again. As stupid as it sounds I miss working. I am disappointed that I can no longer handle a job.

        So yeah MS has caused a whole mountain of disappointment for me too.

        Comment


          #5
          Originally posted by msgijo View Post
          Yeah, I have been one of those aggravating Type A perfectionist all my life, then MS arrived.
          Ditto for me...I've gone from type A to type B and then down through the alphabet I too don't have the energy to clean my house properly. It takes me all week to get it 1/2 "ok." I've been working on cleaning the bathroom over the past 2 days...been doing it in shifts as I can. My husband is 5 1/2 years older than I am and when I met him just about 10 years ago I had more energy than he did..over time he passed me up and now I feel a lot older than he is. I'm just about even with my 69 year old mother-in-law in keeping up with the house work. She said it takes her all week to get the house clean.

          And even after a week, the house still isn't totally clean most times...I usually have to settle for "good enough". My husband offers to help but he already has the yard work, etc. outside to do. Yeah - my pride probably gets in the way of letting him help me.

          Comment


            #6
            All that and then some...

            Hi -- Been a while since I posted here but in my current state of mind, it struck too close to home. Just like all across the country, MI is siizzling hot and I am in my 'shut in' mode. The heat does a number on me physically, and now mentally. Planted my usual veggie garden (raised bed), tending to my MIA neighbors bed next to it; just going out for 15 minutes to harvest the veggies and water wipes me out! Pathetic.

            My user name - mgb4ms - represents my new phase in life: master gardener Before MS. I am mad and disappointed and jealous, envious really. Managing the landscape beds was my passion. I could literally spend all day outside doing that. Now it falls to my DH. It's awesome he has picked up the slack, but it's not the same; breaks my heart I've had to all but abandon a cherished hobby. Even going to buy the flowers for my pots is a exercise in planning! Nurseries are full of challenges - are the aisles paved or gravel? Do they have carts? After walking around, will I be able to get the stuff to my car? Ugh.

            I hear of friends going to the ball park to catch a game. So many concerns there - esp getting to the bathroom. Getting inside from the parking lot, to the seats. I know it's do-able, but the mental gymnastics of planning and executing it (esp for my hub) take away from the whole thing.

            So, now that I've managed to scratch the surface of the dark cloud over my head (just barely, could go on and on), I expect responses that will offer possible options to all this stuff....believe me, I have thought of them, even done them...just **** off about having to, that's all.

            I normally try my best to be positive, but this week it's gotten to me.
            Hopeful my next post will be more upbeat!? Thanks for 'listening'!

            Comment


              #7
              hi mgb4ms! I have been a life long gardener and landscaper too. It is my passion! I often thought that after retiring, I'd take master gardener classes to further my knowledge and experience. Well, MS struck that down to the ground as I had to go on disability retirement.

              It's been a few years now and I still garden, but it has become so limited, it's a joke now. Like you, it takes all of me to water, harvest and tend and I'm so disappointed. I poured sweat and tears planting the landscape and setting up raised beds for the garden years ago when I was more able bodied and now I can hardly walk out there with my walker. Once I get there, I have to crawl around. At least my dh helps some, but like you said, it's not the same.

              So, yea I'm heartbroken, disappointed and mad too
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #8
                Disappointment....and stunned.

                Hi everyone,

                This thread stuck a cord with me. Thank you for starting it, even though its so sad to hear everyone's stories about losing the ability to do the activities the love so much. I'm sorry for everyone's loss(es).

                My [most recent] disappointment is this week. Recent MRI noted "mild global brain volume loss".

                I remain stunned. Trying to research as much as I can. SPSS for awhile now, I suppose it's inevitable, but it's hard to see/hear it.

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