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    Need advice/mantra/new way of attempting pain & fagitue/ new me????

    Well clearly this is a ranting pity party I've thrown for myself however, no one has shown up. Imagine my not surprise. Am all set up for my w(h)ining with numerous types of cheese and crackers available for guests to listen to me all evening but not the first guest has arrived. I would be hurt but having been diagnosised in 2000 I believe I've already expressed my discontent at not being able to do the same things as I once could to all even the random stranger on the street, gas station or Kroger checkout line. It's old, old, old !!!! The inabilitiy to not be able to do what I once could. Has nothing to do with me being "vintage"(note: I refuse to be old, senior or disabled).

    I have dh that is fabulous and truly understands and tells me not to worry he KNOWS I'm doing the best I can. Which makes me promptly want to slap him across the face as THAT IS NOT what I want to hear. I want a solution to be able to function like I did 30 years ago before MS, 5 back surgeries, both knee replacements blah blah blah blah blah!!!

    I have finally at 72 accepted I can't do what I once did like clean the enitire house 2200+ sq. ft. in a day. I must say this has been huge and I truly don't like it but guessing no one at this age likes this either.

    My irksome issue it this: I accept due to mostly back pain issues I can only stand for about 15 to 20 minutes at a time before I have to sit or lay down. Just had 3 nerves burnt in back and use rx and tens unit. However, this sends me to a place I am not enjoying vacationing at Supreme IRKDOME!!!!!! because it may take 2 or even 3 days if spring cleaning which I'm trying now to get all done in just one bathroom. Note: due to issues I sweep then lay in floor on side ( due to knees and back issues) to be able to wash baseboards.

    Well no one showed so I'm going backdown stairs and sit in the chair to shampoo a small area of carpet cause standing is entirely too painful. But the invention of the chair is a huge help but still can't do entire room drats.

    Help out there anyone????

    #2
    Originally posted by jkforrest View Post
    )My irksome issue it this: I accept due to mostly back pain issues I can only stand for about 15 to 20 minutes at a time before I have to sit or lay down. Just had 3 nerves burnt in back and use rx and tens unit. However, this sends me to a place I am not enjoying vacationing at Supreme IRKDOME!!!!!! because it may take 2 or even 3 days if spring cleaning which I'm trying now to get all done in just one bathroom. Note: due to issues I sweep then lay in floor on side ( due to knees and back issues) to be able to wash baseboards.

    Well no one showed so I'm going backdown stairs and sit in the chair to shampoo a small area of carpet cause standing is entirely too painful. But the invention of the chair is a huge help but still can't do entire room drats.

    Help out there anyone????
    Hello jk

    It is awfully difficult to accept the idea that we just can't do all the things that we used to do.

    I kept trying, until certain tasks put me at risk for hurting myself or falling.

    Had to ask for help in doing those things. Fortunately I have family that helps me with the big tasks. This has been a huge relief for me, both mentally and physically.

    Hopefully you will be able to find someone to come over and help you.

    Good luck!

    Take Care
    PPMS for 24 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Hi jkforrest,

      Wow, sounds like you still do a lot! I can't imagine cleaning like I once did, and am younger than you minus your surgeries. I can relate to how frustrating it is.

      I also need help from others - family, friends, and hired help. Its hard, but have had to lower my standards, too.

      Be careful and take care of yourself
      Kimba

      “When you change the way you look at things, the things you look at change.” ― Max Planck

      Comment


        #4
        Hi jkforrest-

        I'm almost your age with a 1800+ sq foot house to take care of and also can't stand for very long, so I hear you! I'll get part of the house clean, but because I'm so slow in doing so, another part then needs immediate attention. My entire house is never clean. (I'm picky )

        I used to pay my dil come do the whole house cleaning, but she's too busy now. My husband takes care of other things (car,outside, big projects), but it finally dawned on me a few months ago that he's perfectly capable of helping inside. And now he does - to an extent.

        Do you have a husband to help you? If not, I agree that getting help from other family members (or hiring someone)

        After all these years of cleaning, don't you think you deserve some outside help? Especially, with MS and a bad back? I do!
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

        Comment


          #5
          reply to all to answered me thanks

          Congrats to me and sweet hubby of 34 yrs today!! yeah rah

          yes he does help. Does most all meals and grocery shopping. He is almost perfect except for his procrasting which makes me crazy feeling. Truly!!!!!!

          Clearly due to being a man he has not perfected the cleaning I desire (want/need/want/need which is it lol) for all the jobs I find to be done.

          We have no family and now on a fixed income so two solutions blown there.

          I was wanting some kind of kick in the butt, head, etc ((please spare the back))to develop a new mantra, way of looking at the things facing me or ways to figure out how to get things done.

          I'm guessing in general how do "regular" folk learn they are not able to do something they "once" did. I am having a huge hard time accepting my limitations even though I am faced with them daily.

          Comment


            #6
            Sometimes, it can be difficult for us to differentiate between what is just giving up, what is healthy acceptance, what is being lazy, what is pampering ourselves, what is adapting to what is, etc. In the end, most of that doesn't matter to me. I do what works for me.

            I'm younger than you are (57), with a smaller house than you have (1200 sq ft). I've hired a housekeeper for 10 years already. I can stand for about 15 minutes at a time. So, I could clean my house. I don't like cleaning my house. I didn't like it before MS; I don't like it now. So, I don't. Letting go of cleaning was, for me, a blessing, not a hardship, so for me, that worked.

            Here's a little bit of a kick.

            Sometimes, we need to let go of the "shoulds" that we tell ourselves, and do what works. And, that's an individual decision that's different for all of us, depending not just on our abilities but on our desires and motivations and personalities.

            But, you're different than me. Letting go of cleaning for you sounds like a loss, not a blessing. However, maybe it's time that you let go of some of your "shoulds" regarding cleaning your house, jkforrest. You've had some suggestions about how to delegate it (husband, hiring someone, etc). Some of those aren't ideal for you. You may need to adjust your expectations. Or, maybe he can clean and you can spruce it up when he's done. For example, ask him to wash the floor to get the dirt off and you get the corners where he missed spots.

            I suggest you take a look at what small pieces of cleaning you really desire to do by yourself and keep just a few of those. Maybe, it's just keeping clutter picked up in between cleanings, continuing to make your house a homey place and a happy place where you and your husband like to be, and letting someone else get rid of the grime and dirt. Maybe there is one room that you'd like to clean by yourself. Maybe you'd like to continue to do your own laundry, or maybe that's something you want to give up. Our community has a business called Marilyn's Wash, Dry and Fold that will do laundry for customers. They charge by the pound. I wash and dry my own laundry but my housekeeper folds it. Evaluate what's important to you. Let the rest go.

            While you do let things go, its OK to take time to grieve for abilities that once were. It might also be a good time to look at "purpose". What other things in life give you purpose -- now, or in the past, or new things that you could add to your present and your future?

            That's not giving up or being lazy. It can be acceptance, pampering yourself (and that's OK) and adapting to your changing abilities. That's life.
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment


              #7
              Originally posted by jkforrest View Post
              Congrats to me and sweet hubby of 34 yrs today!!
              Happy Anniversary jk and hubby!
              PPMS for 24 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #8
                Reply

                Tks re happy anniversary. It's his birthday today.
                Tks mama for your perspective. I have heard most of what you said from him for years. However, for some reason. I could actually take info into guilt ridden heart/mind today.

                I think I am gonna print the words you said like acceptance etc on pieces of paper and tape to bath mirror,fridge and front door. Then move them around daily or perhaps weekly so I can accept I am a human being instead of a human doing(it's from some of my childhood also guessing need to still be working on that bahaha)🤔😁😉

                Comment


                  #9
                  Originally posted by jkforrest View Post
                  I think I am gonna print the words you said like acceptance etc on pieces of paper and tape to bath mirror,fridge and front door. Then move them around daily or perhaps weekly so I can accept I am a human being instead of a human doing(it's from some of my childhood also guessing need to still be working on that bahaha)🤔😁😉
                  Awesome. Choose the words or phrases that speak to you.

                  - Acceptance
                  - Pamper
                  - it's ok
                  - Just let it go
                  - Adapt and change
                  - I still have value
                  - I'm a human being
                  - I'm not a human doing
                  - That's life
                  ~ Faith
                  MSWorld Volunteer -- Moderator since JUN2012
                  (now a Mimibug)

                  Symptoms began in JAN02
                  - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                  - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                  .

                  - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                  - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                  Comment


                    #10
                    Please get a cleaning lady once a month. It is not that expensive. And things like baseboards can go longer than a month between cleanings. Your life will improve immensely.

                    Comment


                      #11
                      thanks for replies

                      this is certainly a work in progress. Some days are better than others. When dh helps and we actually get some things accomplished I feel sooooooo much better. I may actually be in more physical pain however, the emotional lift it gives me is so incredibly huge that I truly feel better. The accomplishments whether small or large make me have a sense of accompliment that I can't describe.

                      I do believe when (if I live long enough lol) to get all rooms cleaned/redone if possible to suit me which mostly involves painting and bedding and curtains (all of which I already have the material he he). I do think I can move enough to clean a room or two per day and keep up with all the housecleaning I feel is necessary to keep me feeling like I am a contributing human. That's all I want.

                      I realize I have to give up the gardening except a few hours every other day due to the heat issues which are my worse symptoms with fatigue (my dynamic duo bahahahaha).

                      Comment


                        #12
                        Originally posted by jkforrest View Post
                        this is certainly a work in progress. Some days are better than others. When dh helps and we actually get some things accomplished I feel sooooooo much better. I may actually be in more physical pain however, the emotional lift it gives me is so incredibly huge that I truly feel better. The accomplishments whether small or large make me have a sense of accompliment that I can't describe.

                        I do believe when (if I live long enough lol) to get all rooms cleaned/redone if possible to suit me which mostly involves painting and bedding and curtains (all of which I already have the material he he). I do think I can move enough to clean a room or two per day and keep up with all the housecleaning I feel is necessary to keep me feeling like I am a contributing human. That's all I want.

                        I realize I have to give up the gardening except a few hours every other day due to the heat issues which are my worse symptoms with fatigue (my dynamic duo bahahahaha).
                        Well ... , that's progress, I guess. You're no longer expecting yourself to clean the whole house in one day. But, you're also still doing it all by yourself, it sounds like. You're spreading it out over a few days, which helps. But, it's still all falling on you.

                        I'm not advocating giving it all up. I hear what you're telling us ... you benefit from the emotional life that you feel, and contributing to housework gives you a continued sense of purpose. But, keep "acceptance" and other advice you've received in mind and continue to be open to scaling down what you do. Remember ... , (in your own words) you are a "human being", not a "human doing".
                        ~ Faith
                        MSWorld Volunteer -- Moderator since JUN2012
                        (now a Mimibug)

                        Symptoms began in JAN02
                        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                        .

                        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                        Comment


                          #13
                          Originally posted by jkforrest View Post
                          Well clearly this is a ranting pity party I've thrown for myself however, no one has shown up. Imagine my not surprise. Am all set up for my w(h)ining with numerous types of cheese and crackers available for guests to listen to me all evening but not the first guest has arrived. I would be hurt but having been diagnosised in 2000 I believe I've already expressed my discontent at not being able to do the same things as I once could to all even the random stranger on the street, gas station or Kroger checkout line. It's old, old, old !!!! The inabilitiy to not be able to do what I once could. Has nothing to do with me being "vintage"(note: I refuse to be old, senior or disabled).

                          I have dh that is fabulous and truly understands and tells me not to worry he KNOWS I'm doing the best I can. Which makes me promptly want to slap him across the face as THAT IS NOT what I want to hear. I want a solution to be able to function like I did 30 years ago before MS, 5 back surgeries, both knee replacements blah blah blah blah blah!!!

                          I have finally at 72 accepted I can't do what I once did like clean the enitire house 2200+ sq. ft. in a day. I must say this has been huge and I truly don't like it but guessing no one at this age likes this either.

                          My irksome issue it this: I accept due to mostly back pain issues I can only stand for about 15 to 20 minutes at a time before I have to sit or lay down. Just had 3 nerves burnt in back and use rx and tens unit. However, this sends me to a place I am not enjoying vacationing at Supreme IRKDOME!!!!!! because it may take 2 or even 3 days if spring cleaning which I'm trying now to get all done in just one bathroom. Note: due to issues I sweep then lay in floor on side ( due to knees and back issues) to be able to wash baseboards.

                          Well no one showed so I'm going backdown stairs and sit in the chair to shampoo a small area of carpet cause standing is entirely too painful. But the invention of the chair is a huge help but still can't do entire room drats.

                          Help out there anyone????


                          Totally understand your position. Sorry I can't help, but I so have two shoulders for you. The thing I wanted to say most of all is....I AM SO GLAD TO SEE YOUR NAME POP UP. HAVEN'T SEEN IT IN A LONG TIME!
                          Marti




                          The only cure for insomnia is to get more sleep.

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