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Member Topic for the Month of April!

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    Member Topic for the Month of April!

    Your Member topic for the month of April is here!
    You made suggestions and we listened!

    For the month of April, your topic will be on the stages of grief, "which is not a one time thing, but something that is dealt with over and over", as one of our members defines it.

    Please join in this important conversation on how this has affected you on your MS journey so far. Your thoughts and concerns on this topic are always welcomed.

    Thank you all for your participation and stay tuned for more of your suggestions in the months to come! We appreciate all your thoughtful ideas and hope to hear more from you! You can add more suggestions here http://www.msworld.org/forum/showthr...the-Month-quot
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    #2
    Same symptom

    Hi, Seasha,

    I was diagnosed after starting to trip over my feet. It turned out to be a left foot drop. So your symptom seems ms related to me. Then again, I am not a neurologist. Good luck

    Comment


      #3
      This topic is well timed for my life. I was diagnosed nearly 30 yrs ago. I've experienced the many ups and downs, highs and lows, attack and recovery, with RRMS. With each dramatic bite that MS took, the depression and grief of loss has been overwhelming.

      I have always been somewhere in that 5 step process of denial, anger, bargining, depression, acceptance. And now that I've descended into SPMS, the daily/monthly/yearly loss isn't dramatic but still ...

      And to add to it all ... after over 30 yrs of marriage my husband left and wants a divorce saying that not wanting to live with MS as one of his reasons to leave. Grief and depression, yeah.
      Karen

      Comment


        #4
        Originally posted by Karenkay View Post
        And now that I've descended into SPMS, the daily/monthly/yearly loss isn't dramatic but still ...
        I know what you mean, Karen. Back when I was RRMS, the anxiety I felt of not knowing when the next flare was going to rear its ugly head. When a flare happened, the suffering of more losses pushed me into a place of deep grief and depression. With the help of meds and therapy, I was able to deal with things somewhat better.

        Now, with SP, it's been a gradual decline. However, I still grieve when I think of all that I accomplished in the past and what is reality now. I know it's not in my best interest to compare, but it's still there - I'm human. I try to remain positive, but it isn't always easy.

        I was at the Dr. office today, pushing my walker and noticed all these people in their 80's struggling with walkers too. I know, I know- I'm comparing again...

        I'm sorry you've had to deal with a divorce on top of everything else.
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

        Comment


          #5
          Originally posted by Seasha View Post
          I was at the Dr. office today, pushing my walker and noticed all these people in their 80's struggling with walkers too. I know, I know- I'm comparing again....
          I do that too and wha really sucks eggs, those 80 & 90 yr Olds still walk better than me.
          Karen

          Comment


            #6
            Grief

            Yup, good topiv. My neuro used to warn me that depression itself is a physiological result of MS, which screws with our brains even to the very heart of how we feel, happy, sad, suicidal. And then there's the of course I'm grieving for my lost job(s), lost opportunities, lost abilities, grieving the loss of my ability to take a walk around the block. At the outset of my symptoms 27 yrs ago, getting doctors to figure out what was wrong, yrs of taking tests, delayed diagnoses, I was more angry than depressed. In denial, eventually, yes, kept working in very hot weather when I shouldn't have, etc.

            Anti depressants make me dizzy. So stopped that years ago. Never did marry and everytime I hear about another spouse who wants to desert his wife, or vica versa, I get disgusted, and angrier still. Can't really imagine that heartbreak.

            Best things for me are, sorry, comparing helps me, i.e., I'm not dying of something awful like AIDS or Ebola, I'm not paralyzed, don't have primary progressive.

            And coffee -- not good for bowel and bladder symptoms or insomnia, but the best anti-depressant ever. Good espresso drunk diluted with plenty of water and milk. Three cups a day. Better than food.

            Can't exercise like I used go, so no natural endomorphins to re-experience the pure bliss of dancing or walking very very fast, but there are other routes to that -- one is trying to help other people. Altruism for very selfish reasons. It does your heart good, seriously. Try it. It's easy on line. Gofundme.com or kickstart...

            Writing and painting or coloring. i can only use one finger to type re tremors but that's all you need these days. Buy a refurbished tablet and gggggrrrrr your heart out. Join a poetry group. (April is national poetry month --NAPO -- write a poem a day.) Poetry, reading and writing, beautiful or empathetic words can help. Finding poetry written by children is very joyful for me. see rattle.com.

            Laughter, another natural anti-depressant. whatever works. I Love Lucy! New nbc show sunday nites at 8 about kids, funny, cute.

            Coloring books work apparently for everyone

            I am in the middle of writing at a NaPo web site many haiku, Doctors and Toads, Haiku and Prose. Up to day 11 of 30... Breaking every known rule of haiku except 5/7/5 syllables per line. Very helpful, keeping busy...

            best of luck to all of you

            Comment


              #7
              Originally posted by Karenkay View Post
              This topic is well timed for my life. I was diagnosed nearly 30 yrs ago. I've experienced the many ups and downs, highs and lows, attack and recovery, with RRMS. With each dramatic bite that MS took, the depression and grief of loss has been overwhelming.

              I have always been somewhere in that 5 step process of denial, anger, bargining, depression, acceptance. And now that I've descended into SPMS, the daily/monthly/yearly loss isn't dramatic but still ...

              And to add to it all ... after over 30 yrs of marriage my husband left and wants a divorce saying that not wanting to live with MS as one of his reasons to leave. Grief and depression, yeah.
              I can relate to you in so many ways; diagnosed 31 years ago and now I'm SPMS ,too. My husband took wonderful care of me until he died in July after 50+ years of marriage. I feel so lost and unable to function like I should. I imagine losing your husband in a divorce is a lot like losing him to death. Trying to deal one day at a time. I rely on God but haven't been able to go back to church without him. There are many things we can't change but just have to go on, facing one day at a time. I hope your situation improves.

              Comment


                #8
                Originally posted by Karenkay View Post
                This topic is well timed for my life. I was diagnosed nearly 30 yrs ago. I've experienced the many ups and downs, highs and lows, attack and recovery, with RRMS. With each dramatic bite that MS took, the depression and grief of loss has been overwhelming.

                I have always been somewhere in that 5 step process of denial, anger, bargining, depression, acceptance. And now that I've descended into SPMS, the daily/monthly/yearly loss isn't dramatic but still ...

                And to add to it all ... after over 30 yrs of marriage my husband left and wants a divorce saying that not wanting to live with MS as one of his reasons to leave. Grief and depression, yeah.

                Hello Karen..I have been diagnosed going on 10 years now. I am sorry that your husband has decided on a divorce. I am single and sometimes just want some one to hold me and tell me it will be okay and I will be here for you But it isn't happening and I am okay with it. I have found that my life is what I make of it but sometimes I go thru the five steps and get to anger and depression about the same time when I am trying to do things and can't and I say but I used to do that and now I am just worthless. So Start all over in the stages. But thank goodness for my brother and my dad they say just do the best that you can and keep thinking that it will get better. I know it isn't going to get better the way I want but I know that I will be able to make it another day. God Bless and stay strong..Prayers for you Harley

                Comment


                  #9
                  Grief

                  Originally posted by peggyprobus View Post
                  I can relate to you in so many ways; diagnosed 31 years ago and now I'm SPMS ,too. My husband took wonderful care of me until he died in July after 50+ years of marriage. I feel so lost and unable to function like I should. I imagine losing your husband in a divorce is a lot like losing him to death. Trying to deal one day at a time. I rely on God but haven't been able to go back to church without him. There are many things we can't change but just have to go on, facing one day at a time. I hope your situation improves.
                  Hi,

                  This is my first time posting. I can relate to the loss of someone very special in your life. Mine is different however because it was my grandmother. I lost her on Halloween of 2011 and her funeral was on November 7, 2011. I was diagnosed with MS on December 5, 2011. I didn't handle her death well at all. I began to drink alcohol everyday and went into a deep depression. It would've been better for me to go and seek counseling instead of what I did. I know it's going on 5 years but sometimes it's still hard.

                  Being diagnosed with MS was hard to deal with as well so I handled it the only way I knew how to. I asked the doctor the do's and dont's behind the diagnosis but the only thing he said was "don't change anything. Keep living your life." To me that meant, keep drinking. Wrong choice. Taking these MS meds and drinking can only lead to to bad things down the line.

                  Because I didn't know then what I know now, I made the decision to never have children for 2 reasons, first, I didn't want the child to be born with this disease and secondly, I didn't want the added stress in which caused a little depression. I am under the age of 35 and I feel that I've accomplished a lot in my life already.

                  I commend you all for not giving up althoug others may have given up on you. I chose not to be in a relationship because once again, I don't need the added stress. I was laid off from my job because I had 2 exasterbations a month apart and the second one, I had to go out of work because I want getting better and the job let me go. I've never been let go from a job before. I went on an interview yesterday and it didn't go too well. I couldn't think clearly at all. My memory is very short and I couldn't remember all the work I previously did for 6 years. Living with this disease is not easy at all. I lived with my mother for all of my life except for 6 months because I was in a relationship that didn't work out before my diagnosis. I could go on and on but I'm not. I'm going to stop by saying, Thank you, to all of you warriors.

                  Gwynn

                  ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

                  Comment


                    #10
                    Great topic

                    I struggle sometimes. I am relatively newly diagnosed...April 7, 2015 (yay just celebrated that anniversary!). I consider myself extra lucky that my only symptoms right now are sensory (vibrations in my lower body that for the most part have resolved although I have gone through periods of feeling more ms-y than others). But every single day I think about what will I be like tomorrow, a year from now, 5 years etc. Sometimes the worry threatens to pull me under.

                    I worry constantly about my 12 year old son and if I have passed this horrible disease on to him (he is already on the autism spectrum and doesn't need this too). My husband is super supportive and kind and deals with my breakdowns when I have them but the worry is constant.

                    I am also concerned about the financial stress I will be putting on my family and what will happen in the future. I am the primary bread winner in my family and I am focused on working for as long as I possibly can. If I think about this too much, the depression could easily drag me under.

                    I am also dealing with the feeling that this disease is my punishment. I had an ex-mother in law that I didn't like. She was mean spirited and judged me from the second I met her son. She had MS and I feel like this is my punishment for not liking her.

                    So yeah, depression....
                    Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

                    Comment


                      #11
                      I too struggle with grief. I was diagnosed on June 15, 2015, then promptly hopped on a flight to go and take my Dad off life support after a tragic accident.
                      I feel as though I haven't had time to truly grieve either loss. When all of this happened last year we were providing a home to my alcoholic sister-in-law. There was no time for me in all of her drama.
                      My MS is considered RRMS right now. I feel as though I haven't had any true remissions, but that could be the depression.

                      Comment


                        #12
                        I also grieve for all of us that find ourselves in this rocky boat~

                        I found this interesting article from another MSer telling her story and listing the 5 stages of grief. I'm sure we can identify with her story. I, myself, never went though the "bargaining" stage, but maybe some of you did.

                        "I am going to tell you about my personal experience with the stages of grief I encountered when I heard that I had Multiple Sclerosis. It has been over two years now (I got diagnosed in the fall of 2007) and I can honestly say that I have finally found some acceptance in all this. But some days I fall right back to the beginning stages and am in denial once again. Grief isn't some predictable point A to point B kind of thing. It isn't like you graduate from grief and get some sort of diploma saying you have achieved acceptance. It is more like you take things day by day, sometimes feeling every emotion at once, as you attempt to live with an uncertain future."

                        - See more at: http://www.healthcentral.com/depress....3wq89HA3.dpuf
                        http://www.healthcentral.com/depress...67/conditions/
                        1st sx '89 Dx '99 w/RRMS - SP since 2010
                        Administrator Message Boards/Moderator

                        Comment


                          #13
                          Grief is what I struggle with mostly. I am constantly comparing myself with someone my age or older who are not disabled and I have a very hard time. I grieve everyday for the person I used to be and the loses I have because of ms. I HATE YOU MS.

                          My faith in God keeps me going.
                          God Bless Us All

                          Comment


                            #14
                            I don't think I've felt grief, but fear, fear that my children will have to deal with this, fear of having to cope with this alone, (my husband is great, he just doesn't get it) I deal with it mostly alone now, even in a room full of people. They don't understand!! there is no concept of what I may be struggling with, leaving me to struggle alone.

                            I also deal with denial. I really wonder what the heck is going on with me. I am certain that something is going on due to all the symptoms, but is it MS? Could it be something else? I wish there was a blood test to show MS.

                            Grief, I wonder if I went through it, if I could find acceptance.

                            I am usually pretty optimistic and enjoy my life. I thank you all for sharing your stories, your sorrows, and your tips to help manage MS. It really helps give some perspective.

                            Comment


                              #15
                              I understand

                              I have PPMS. I have to use a walker and can't drive. Therefore my husband retired early to help me. Excepting this loss of independence is a difficult process for me. My mind and desires don't match my body. The hardest thing is getting my husband to let go, he worries about me constantly. He doesn't like to leave me alone. That is really starting to bug me. I grief the loss of the way I use to be, daily. Sometimes I want to yell, "Leave me Alone," but then I need my husband's help with something and I grief all over again. 😡

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