Announcement

Collapse
No announcement yet.

Speaking my truth

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Speaking my truth

    I have a bit of free time to collect my thoughts as I'm alone - which has been rare lately with lots of family visiting this entire summer. This may be long.

    I recently had a serious conversation with my husband about the progression of my MS.

    To back up a bit, I've been living with this for 30 years and in the beginning I was misdiagnosed. there were only 3 DMT's at the time of dx which were not very effective for me, and in hindsight, I'm thinking progression happened more quickly. I've been SP for 11-12 years. Today, I am still getting around for short distances with my rollator walker and w/c and 4 wheel scooter for longer.

    SO, this all started when I've overheard my dh telling friends and family in social gathering or on the phone that I'm doing great! He speaks with enthusiasm telling all that I'm still gardening and babysitting and cooking every night, cleaning, etc. but she sometimes get tired.

    I thought this was the "straw" and had to set him straight:
    I am not doing GREAT (I'm doing just ok and please don't say I'm doing GREAT.)
    Sure, I garden, but this is going to be my last year - it's become too much for me!
    Sure, I cook, clean and babysit, but all of it is such a struggle!
    I'm not tired! I'm mentally and physically fatigued!
    Blah, blah, blah... I have explained this all to him umteenth times. He really is a good man, but clueless. I suppose it's because nobody really understand what we go though unless we have MS.

    But, this time I got very emotional and started to cry. I think the lightbulb finally went on as he held me and also had tears. He has been more supportive, helpful and tenderhearted since. I had some talks with my adult kids as well. In the past, I haven't wanted to scare my kids and just soldier on, but I've decided it's time to get very real with all and speak my truth.

    I just thought I'd share this experience with you all. Have you had to get seriouly real with your loved ones? How did it go?

    Thanks for listening.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    #2
    We have some similarities; I'm just a few years behind you.

    I've had MS for almost 18 years. It took me two years to be dx. There were 4 DMTs at the time. I was on betaseron, which was mostly ineffective for me, for five years -- so ... , seven years before copaxone.

    Perhaps another med may have been more effective than copaxone, but I mostly believe it's working for me.

    Or was. I'm progressing from rrms to SPMS; I don't know if I'm all the way there yet. I'm not sure if copaxone is effective anymore, or if I'd be free from flares even without it.

    Hubby doesn't minimize my symptoms bad much as Seasha's, I don't think. He tries to help when I'm tired. He sought out a power chair even before I'd considered its' advantages. I don't use it often; but it's useful for occasional outings that require more walking than what I can do.

    But, I've had conversations similar with him too. And, I don't believe that he "gets it.

    I'm giad, Seasha, that you seem to have gotten through to your husband. Tears from him; wow. That's an indication that the beginning of true understanding and true empathy is there.
    ~ 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


      #3
      I am glad you told your husband how it really is. I think sometimes "great" is a relative term to others - not in a flare and still moving, so you are great!

      I know I am fortunate, but sometimes have to remind my husband that I do have limitations.

      As for the grown kids, I am sure as a parent, you are always in protect mode. But at some point, they do need to know the truth. I am sure they want to understand as well.

      You have had a really busy summer. And as much as we love having company and seeing family, it is exhausting for anyone, let alone with SPMS. Glad that you were able share your reality with them.

      Hope you can get some well deserved rest and take a little time just for you.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Iím sure our spouses or partners live in a bit of denial. I think deep down they know very well but on the outside... maybe sugar coat things a little.
        I think itís a coping strategy and a show of support for us
        I hear all the exact same things.
        I do do some complaining from time to time but mostly just deal with my progression on my own best I can.
        Itís maybe a little different for a man as I feel Iím supposed to be the strength,the provider,the protector, the problem solver , the whole bunch of other stuff and admitting that Iím having a hard time...well Iím just going to have to stay strong no matter what and try and set an example for my spouse and my children and grandchildren.
        It is very tough though and I only show my fears and uncertaintyís here. I know you guys get it.
        It was one agains't 2.5million toughest one we ever fought.

        Comment


          #5
          Thank you for telling us about a very loving experience. Iím not happy that your MS weighs you down (like the rest of us), but the fact that he was so sensitive to your feelings and it brought you closer is beautiful.

          When you told me he tells others you are doing great i viewed that as his way of being supportive. I know many people like that when I ask how a sick loved one is they will say he/she is doing great (we just put her in a nursing home with Alzeimerís and she doesnít recognize me), but she is doing great.

          My mother was always the opposite. When someone asked her how a sick relative was she would say ďreally B A DĒ. I always wished she would allow then some dignity.

          But you feelings are your feelings and he was sensitive to them. That is wonderful. My husband could never cope with illness. I was sick practically from the day we were married but he always thought I was lazy or crazy. If I had had an MS diagnosis then maybe things would have been different for us but I donít know.

          Comment


            #6
            Originally posted by pennstater View Post
            I think sometimes "great" is a relative term to others - not in a flare and still moving, so you are great!
            Although I don't have a spouse to deal with, I want to comment that pennstater makes an excellent point here about using the phrase 'doing great'.

            I'm guilty of this for myself, as I tend to describe 'how I'm doing' (to family and friends) in relative terms also.

            When I assess where I'm currently at with progressive MS, and compare my abilities to a fully functioning person, then I'm certainly not doing very well. I know this to the core.

            On the other hand, when I realize that some persons with progressive MS are unable to stand on their own, or get on and off the toilet independently, or prepare something to eat - then I can honestly say that I'm 'doing great' (relatively speaking).

            It really does depend on the perspective of each individual.

            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


              #7
              Originally posted by oceanpride View Post
              Iím sure our spouses or partners live in a bit of denial. I think deep down they know very well but on the outside... maybe sugar coat things a little.
              I think itís a coping strategy and a show of support for us.
              Seasha,

              He loves you. He's a guy and has his share of flaws, but he still loves you as much today as decades ago.

              Oceanpride has it exactly right... it is a coping strategy... and I think deep down they know very well but on the outside... maybe sugar coat things a little. This is spot on IMO.

              In speaking your truth you say it's because nobody really understands what we go though unless they have MS...
              Also true: no one knows what our mates go through either, isn't it?

              Comment


                #8
                I must be the oddball here today. My husband always told people what an awful disease this is and I was always the one to minimize things. Even my doctors told me this. I've been at this since 2001 and of course things are worse now. People never understand it no matter how you present. I think our neuros are the hardest to understand us at times.

                My kids are catching on and it makes them feel so bad to see Mom feeling crappy all the time.

                Glad your husband is picking up on your suffering and catching on to things at are MS. Love you Sis.
                Marti




                The only cure for insomnia is to get more sleep.

                Comment


                  #9
                  Thanks for all your replies and words of wisdom.

                  I know living with MS could be so much worse and the meaning of GREAT depends on one's perspective. I guess I am comparing myself as to what life was like before this steady and currently fast downhill (alarmingly) progression. I'm sorry if I've offended those less fortunate than myself. It is all relative.

                  I think oceanpride hit the nail by saying it's a coping strategy by his being somewhat in denial.

                  And thank you, 502, for reminding me that I really don't know what he's going through, either.

                  Here's what is really going on with me and my dh... it's true that we've had lots of company all summer, with me being the main cook while my kids are working remotely. I am the main babysitter for a very verbal and active 3 year old for part of the day. I am utterly exhausted!

                  My dh, on the other hand, is taking his daily 1 1/2 hour walk, then lays in the hammock and reads or watches TV in the bedroom. This made me resentful, especially since he was telling everyone that I was doing "GREAT"! He also will willingly and literally drop everything to help out his friends and neighbors when in need. But, what about me? He's says, OK, remind me later.

                  But, instead of whining, yelling and complaining, I had "the TALK" with him. I think he got the message and is more alert and sensitive to my needs. So too do the kids understand more.

                  Like I said, he is a good man and we love each other. We've known each other for 45 years. He has always known me to be a fiercely independent woman before my MS progression. Times have changed, for sure.

                  Love to you all, my MS friends and I urge you all to speak your truth when needed!
                  1st sx '89 Dx '99 w/RRMS - SP since 2010
                  Administrator Message Boards/Moderator

                  Comment


                    #10
                    I'm glad you shared your truth with your husband and also with us.
                    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                    Anonymous

                    Comment


                      #11
                      Thanks for 'keeping it real', Seasha ! Eloquent and thoughtful. Your posts are spot on !

                      Comment


                        #12
                        I have had the talk, but to little good effect. My symptoms come and go. They bother me with the heat, too much excercise, stress, and not enough sleep.

                        Since my husband is disabled and is a few years older, he thinks I have no problems at all. Anything I do mention goes in one ear and out the other. OTOH, until very recently, he did all the cooking and laundry, and did many other chores. I don't want to give the impression that he sits back playing king. He still does a lot, too.

                        My main beef is that he has never (not once) asked me how I'm doing with it. I ask him almost daily how he's feeling. And then there's the annoying fact that when he's not doing well and something needs attention, I point it out and try to get him to do something about it. Sometimes I notice it before he does. But when I had symptoms so bad that I couldn't get off the floor and told him, he literally ignored me. After a couple of minutes I could get up on my own. He said that he thought I was kidding. When I told him many other times that I was exhausted and weak, had troubled getting up, he took it as general conversation.

                        I was so exhausted (sleeping 12 hrs per day and working 8) that I wasn't thinking right and it took months to realize that I needed to get to the doctor. It would have been nice if he had taken the time to notice that none of that was normal and had showed a little concern. At the time, he did all my laundry, the cooking, etc. It wasn't that he didn't help me. It was that as far as MS goes, I'm on my own. I'm still pretty hot about that time, truth be told.

                        So what's worse? A husband who shows concern but does little? A husband who showed no concern at all but did almost everything in the house? I think the worst, honestly, would be one who showed too much concern ( I would have to shake that guy off.), so I'm being careful about what I wish for. 🤣

                        I know that it's his way of showing love - He's a doer not a talker. But, sheesh, if I'm having a heart attack, I sure hope someone is visiting. 🤣

                        Comment


                          #13
                          Originally posted by MMMMS View Post
                          It was that as far as MS goes, I'm on my own.
                          Isn't that the truth? Ultimately, whether we get the help, support (or fill in the blank) that we need or not, we are our own advocates.

                          Hang in there, MMMS. Hope you don't have to have a crying scene like I did, to get the message across. Or maybe you should? lol
                          1st sx '89 Dx '99 w/RRMS - SP since 2010
                          Administrator Message Boards/Moderator

                          Comment


                            #14
                            And it seems to be that the men get sympathy, concern, help, and understanding. We women are "doing great". From the common flu to MS, men are babied while we're told to pick up out plow and get back out to the field. It is assumed that men are doing their best possible. It's assumed that if women aren't doing it, it's because we're slackers, using MS as an excuse. If men struggle through and do it, they're super human heroes. If we struggle through and do it, we're "doing great".

                            I hope that your husband gets it and that the lesson sticks.

                            I'm beyond disgusted. But thank you for starting this thread. It's good to vent, isn't it. 😤


                            Originally posted by Seasha View Post
                            Isn't that the truth? Ultimately, whether we get the help, support (or fill in the blank) that we need or not, we are our own advocates.

                            Hang in there, MMMS. Hope you don't have to have a crying scene like I did, to get the message across. Or maybe you should? lol

                            Comment


                              #15
                              He takes his one and one half hour walk every day and lays in a hammock while his wife with MS is caring for him and everyone else? OMG! He was right that you are doing great in that Ďwhat you were doing was greatí. Or, in spite of your MS, you are amazing.

                              But he definitely needed a knock over the head.

                              I am very happy for you. He will be around when things get tougher.

                              Comment

                              Working...
                              X