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    Grieving losses of predictability during our new norm

    I've decided that grief is the word that I need to describe the "funk" that I've been stuck in since this COVID 19 necessitated a new norm. I just have a difficult time motivating myself to do anything productive. I experience maybe some sadness, but more pessimission and less hope for the future.

    Here's an article that I read. https://www.cnn.com/2020/04/15/healt...ess/index.html I hope it will be helpful for me. Maybe it will also be helpful for others. Here are some of its main points:

    - "Maybe you're among the most fortunate in the coronavirus crisis -- your loved ones are healthy and you're sheltering at home. Yet you still feel emotionally bulldozed by the pandemic. Those feelings of uncertainty, helplessness and exhaustion may be grief."

    - Our losses might include "sense of certainty, that sense of safety, that sense of predictability", "anything we're attached to deeply: the loss of economic stability, the loss of our ability to move around freely, the ability to participate in life's milestones in person", "the sense of loss that we have for all that we thought we were secure in -- like the loss of the illusion that we're in control of our lives".

    - "Guilt doesn't help grief. While it's easy to look at your situation and compare it with others who may have experienced more profound losses, judging your feelings isn't helpful in honoring them and moving through them... You can acknowledge any privilege you may have in facing this crisis while still honoring your losses."

    - "Restoration and gratitude are part of grieving. Being present in our sadness is important while at the same time holding as much gratitude or joy as we can." She suggests crying and screaming are OK, as are dancing and singing. Use humor, get enough sleep, consider exercise, meditation or a personal passion project.

    - Connect with others. Virtual connection is better than nothing. Make "a short list of people you really care about and scheduling calls with them. Don't wait until you feel like calling your friend, or your mother, or your sister, because if you're one of those people who never seem to really feel up to it, that feeling is not going to dissipate."

    - Have compassion for yourself. "Put activities that bring you peace and moments of happiness at the center of caring for yourself."
    ~ 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.

    #2
    Hi Faith,

    I think many are experiencing the same, MS or not. I can't tell you how many people I have spoken too said they have no motivation.

    When ordered to first shelter in home, for some, it was actually fun, having more family time. Others used it is a time to do a few projects they never seemed to have time for. Or take up a new hobby to fill time. But as the novelty wore off and the weeks were prolonged, the "new norm" seemed to provoke sadness, anxiety, and a loss of motivation.

    Hang in there. Be kind to yourself and know you are not alone.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      I’m more introverted and a homebody so the restrictions on gathering fit my lifestyle. But I’m beginning to miss personal visits with my mother and adult children. And I had my May Alaska cruise canceled and will probably cancel my Europe cruise in September. I know that these things are superficial, however they are losses to me. With my mobility worsening every year, I’m not sure if these trips will be possible much longer. It saddens me but I try not to obsess over it. Ever since my diagnosis, it’s been loss upon loss.
      Paula

      Comment


        #4
        Originally posted by pennstater View Post
        I think many are experiencing the same, MS or not. I can't tell you how many people I have spoken too said they have no motivation...
        [As] the weeks were prolonged, the "new norm" seemed to provoke sadness, anxiety, and a loss of motivation.

        .
        I know, right? We're all in this together.
        ~ 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


          #5
          Originally posted by RonPaulaD View Post
          I know that these things are superficial, however they are losses to me.
          That's exactly right. I have so much to be grateful for -- a home, a husband and son whom I live with, steady household income, opportunities for virtual contacts.

          Yet that doesn't negate the losses and the things that I miss.
          ~ 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


            #6
            Years ago, when I was struggling, I had a conversation with my 1st neuro. I was frustrated with myself, telling him that I knew I had so much to be grateful for, but sometimes, I couldn't help but get both angry and sad that I had to deal with MS , its symptoms, and treatments.

            He told me my feelings were my feelings and that I had every right to get mad or sad, but that he wouldn't worry about it as long as I could continue to see the good in my life and not let the anger and sadness overwhelm me. If either happened, then he would be concerned.

            I still miss my first neuro!!!
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              I think this has been harder for people who are healthy or have mild cases of MS. My life really hasn’t changed a lot. It’s been many years since I have felt well enough to participate in ‘in person’ in events. I passed out from the heat at my son’s graduation from high school in 2003. Since then, I have stayed inside most of the time.

              It tore my heart out to miss his college graduation and his graduation from physical therapy school. His wedding will be coming soon. They would have gotten married this summer but for obvious reason that will be delayed. I don’t know what I will do if I can’t go to that.

              Greive for myself but mostly for him that his mother has never been healthy since he can remember.

              Comment


                #8
                Originally posted by palmtree View Post
                I think this has been harder for people who are healthy or have mild cases of MS. My life really hasn’t changed a lot.
                Perhaps you think I'm more mild and more healthy than I really am. I don't consider my case a mild case. I've had MS for 18 years. i'm pretty sure I'm in SPMS. I nap every day. I use a cane whenever I leave the house. I can't walk more than a block or two. I didn't perceive myself as being very active. And I certainly don't perceive myself to be healthy, at least not my mobility, energy to do things and endurance.

                But I still got out. I exercised at the Rec Center and the senior center, often with people 20-30 years older than myself because that's what I was able to do. I went to church weekly. I did a little bit of volunteer stuff, although much less than i used to. I attended my small group. And other little things. None took much effort; all could be done even without my case being mild. Getting out took effort, but I determined that it was worth the effort.

                I suspect that the bigger difference between those who cope well, and those of us who don't, is our personalities. I'm an extrovert living with two introverts. Many weeks, my "introverts" are the only people that I see in "real life", although I do have virtual contacts. I likely don't converse with my son more than 30-60 minutes per week. Thankfully, my husband is more than that. (Helpful, but so-o-o not the same!) No matter how non-mild my MS gets, I expect that I will always have a need for people.

                I'm sorry for the family activities that you have needed to miss. MS certainly adds challenges to our lives. But, COVID 19 adds a whole set of additional challenges.
                ~ 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


                  #9
                  Mamabug I am sorry you are spiritually down. I have had anxiety off an on but most days I am fine.

                  Do you have someone from your Church you could confide in?

                  My belief is, no matter what is happening God is still in control and that is what gets me thru ea day. Although it's hard to shelter in place I believe it will get better. This to will pass.

                  I love the article you posted and I hope it helps you get motivated again.

                  Saying a prayer for you.
                  God Bless Us All

                  Comment


                    #10
                    Mamabug, I have said to my wife more then one time

                    That I wish you lived in New Jersey so We could have Had the opportunity to meet you. I have admired your wise and compassionate post for years. You have helped so many people and you have more admirers then you are probably aware of. I hope this black cloud passes quickly.

                    Comment


                      #11
                      Originally posted by REG53 View Post
                      Do you have someone from your Church you could confide in?

                      My belief is, no matter what is happening God is still in control and that is what gets me thru ea day. Although it's hard to shelter in place I believe it will get better. This to will pass.

                      I love the article you posted and I hope it helps you get motivated again.

                      Saying a prayer for you.
                      I believe everything you said. And yeah. I have to believe that things will get better. I might need to wait until after a vaccine for that. But, yeah.

                      I wonder how Romans 8:28 (all things work together for good ...) fits into all of this. Sometimes, I see some good things. Creativity in getting together despite physical distancing, caring for our "neighbors", etc. Other times, I see the clouds.

                      Thanks for your thoughts, prayers and kind words.
                      ~ 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


                        #12
                        Originally posted by robert152 View Post
                        That I wish you lived in New Jersey so We could have Had the opportunity to meet you. I have admired your wise and compassionate post for years. You have helped so many people and you have more admirers then you are probably aware of. I hope this black cloud passes quickly.
                        Oh my! Your comment just warmed my heart. 💗. Maybe we'll be able to meet one day. 🌸
                        ~ 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 Mamabug View Post
                          Perhaps you think I'm more mild and more healthy than I really am. I don't consider my case a mild case. I've had MS for 18 years. i'm pretty sure I'm in SPMS. I nap every day. I use a cane whenever I leave the house. I can't walk more than a block or two. I didn't perceive myself as being very active. And I certainly don't perceive myself to be healthy, at least not my mobility, energy to do things and endurance.

                          But I still got out. I exercised at the Rec Center and the senior center, often with people 20-30 years older than myself because that's what I was able to do. I went to church weekly. I did a little bit of volunteer stuff, although much less than i used to. I attended my small group. And other little things. None took much effort; all could be done even without my case being mild. Getting out took effort, but I determined that it was worth the effort.

                          I suspect that the bigger difference between those who cope well, and those of us who don't, is our personalities. I'm an extrovert living with two introverts. Many weeks, my "introverts" are the only people that I see in "real life", although I do have virtual contacts. I likely don't converse with my son more than 30-60 minutes per week. Thankfully, my husband is more than that. (Helpful, but so-o-o not the same!) No matter how non-mild my MS gets, I expect that I will always have a need for people.

                          I'm sorry for the family activities that you have needed to miss. MS certainly adds challenges to our lives. But, COVID 19 adds a whole set of additional challenges.
                          Good for you to keep up the fight. You are correct about personalities. Being alone is very comfortable for me. After my diagnosis and almost a year in the hospital, I started reading books, books and more books.

                          Our MS sounds very similar. I think what has been different for me is that I started struggling with asthma and skin rashes when I was 47. Then a sun allergy. Ten years before I found out I had MS I had to shelter in place because of the environment. The only time I felt well was inside.

                          Exercise is a different thing. Until 2010 I would drive almost an hour each way to swim in a 50 meter pool. This was every day for forty years. When I couldn’t do it anymore the choice really wasn’t up to me.

                          A church community is something that wasn’t available where I was living. That is a wonderful thing. I hope you are able to get back to worshiping as soon as possible.

                          Comment


                            #14
                            Originally posted by Mamabug View Post
                            Perhaps you think I'm more mild and more healthy than I really am. I don't consider my case a mild case. I've had MS for 18 years. i'm pretty sure I'm in SPMS. I nap every day. I use a cane whenever I leave the house. I can't walk more than a block or two. I didn't perceive myself as being very active. And I certainly don't perceive myself to be healthy, at least not my mobility, energy to do things and endurance.

                            But I still got out. I exercised at the Rec Center and the senior center, often with people 20-30 years older than myself because that's what I was able to do. I went to church weekly. I did a little bit of volunteer stuff, although much less than i used to. I attended my small group. And other little things. None took much effort; all could be done even without my case being mild. Getting out took effort, but I determined that it was worth the effort.

                            I suspect that the bigger difference between those who cope well, and those of us who don't, is our personalities. I'm an extrovert living with two introverts. Many weeks, my "introverts" are the only people that I see in "real life", although I do have virtual contacts. I likely don't converse with my son more than 30-60 minutes per week. Thankfully, my husband is more than that. (Helpful, but so-o-o not the same!) No matter how non-mild my MS gets, I expect that I will always have a need for people.

                            I'm sorry for the family activities that you have needed to miss. MS certainly adds challenges to our lives. But, COVID 19 adds a whole set of additional challenges.
                            One other little thought. God is with us whether we are at church or not.

                            Comment

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