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    Guilt? Disappointment? Continual Loss?

    Thank you for reading this post and I hope you can give me some insight into what I am feeling. I am a rather stoic individual so when it comes to feelings and emotions I am at a deficit.

    I am in counseling and about to dive into the impact multiple sclerosis has and will have on my life. Over a decade into my MS journey, I probably have never allowed myself to truly complete the grieving cycle. I was raised to take your lumps and keep pushing forward. A stint in the military reinforced that type of mentality where emotional struggle was considered a weakness.

    In the past week here are a few examples of where MS continued to impact my life:

    - Thursday my wife was curious if I would be interested in taking a vacation overseas. Before MS this would have been a no-brainer because I love to travel. The problem is I have physical limitations that would make the trip rather difficult and detract from the overall enjoyment. Being extremely heat intolerant is one of the major limiting factors where even a lengthy plane ride could put my health in jeopardy.

    - Saturday there was a birthday party for a childhood friend of mine that I could not attend because it was outdoor (90+ degree weather).

    - the church had outdoor water baptisms on Sunday and again the heat prevented me from participating.

    - Yesterday, the church also had a meeting about 2020 mission trips and of course the same limitations prevent me from truly considering this as a possibility.

    So you can see that I am routinely missing out on opportunities due to MS limitations. Besides the current stuff there are other things that still pester me.

    I often tell people that guilt is the proper emotion when you do something wrong. I know I didn't actively do anything wrong to get diagnosed, but I often feel like I have let her down.

    - I loved working and it really hurt not being able to continue my career. I still struggle trying to find productive things to do with my life.

    - When I got married the plan was for me to continue to work and my wife to stay home. Things didn't work out that way and my wife is still working and I am home on disability.

    - We also both loved to travel (over 50 countries combined before we got married), and this just isn't a reality.

    So there's a glimpse into what I am dealing with and trying to find the correct way to articulate it for the counselor to best help me.

    I welcome any and all opinions about my situation and look forward to learning from our community.

    Thank you in advance and I wish you well.

    #2
    Ahhh Marco, our friend,

    Thanks for opening up to us. I feel for you. I have some heartfelt words for you, but I'm leaving for PT and errands in town and don't have time to express my thoughts now.

    Be well...more later!
    Seasha
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Originally posted by Seasha View Post
      Ahhh Marco, our friend,

      Thanks for opening up to us. I feel for you. I have some heartfelt words for you, but I'm leaving for PT and errands in town and don't have time to express my thoughts now.

      Be well...more later!
      Seasha
      This!
      I too appreciated getting to learn more about you and will respond later. In the meantime I think self-reflection is amazing and opens the door to all sorts of possibilities.
      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


        #4
        Marco, I am so sorry you are going these emotions. I wish I had some words of wisdom but I will leave that to your counselor.

        I have always enjoyed you post and all the information you offer and I will be thinking of you and praying for you while you are going thru this.

        Feel better my friend.
        God Bless Us All

        Comment


          #5
          Hello Marco ~

          Sorting out thoughts and feelings, and learning coping strategies through therapy, was extremely valuable to me.

          I didn't clearly realize what my thoughts and emotions were until I went through the process, with an understanding and patient therapist.

          Hopefully you will benefit also.

          Good Luck, Marco!

          Take Care
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            Originally posted by Marco View Post
            I am in counseling and about to dive into the impact multiple sclerosis has and will have on my life. Over a decade into my MS journey, I probably have never allowed myself to truly complete the grieving cycle. I was raised to take your lumps and keep pushing forward. A stint in the military reinforced that type of mentality where emotional struggle was considered a weakness.
            In my short time here I have seen your hard-won perspective and guidance help people immensely. You are highly valued and respected.

            At 14 I lost my mom. Now, as my friends go through the process I offer "the grieving never ends, it just changes." I believe MS to be the same. Then there is the guilt, which comes in different forms. Mine is "I could have done something to avoid MS, I could have been more responsible, I should have followed a different path and this wouldn't have happened, I will be a burden on my friends, family, and society" - Background noise that ebbs and flows like a dark wave. I acknowledge my emotions about it but not that it is the absolute truth.

            Certainly you know the other perspective - that these people are with you because of love, and you did travel together to all of those amazing places. To practice gratitude sometimes feels forced (gratitude drills?) but it truly lets light in.

            Through all of this, I hope new challenges and sources of enjoyment arise for you. Sending you peaceful wishes.
            All the best, ~G

            Comment


              #7
              Guilt, Dissappointment, Continual loss

              I am so sorry to hear this from you Marco. You have been and will continue to be a very important voice on this site. Many of us have learned so much from you through your knowledge and support. This is a different disease for everyone. For some of us our lives haven't changed at all and for others like yourself the life we once had is gone but the memories of that other life stay strong in our minds. It's so important to have a good therapist who can help you through this. I can only imagine how difficult this is for you and your spouse. Please don't stop your voice on this site. You are so important to all of us.
              I hope that through therapy you will find some peace and acceptance of your evolving situation.

              Thinking of you

              Comment


                #8
                Hi Marco,

                While I wish the need wasn't there, I am so glad you opened up here. I am sure your post is one that so many can empathize with - it is a shared emotion.

                One thought - maybe print what you wrote here and give to your therapist as a starting point. It gives alot of insight.

                It is hard to learn to say no. And once we do, do we say no to more than we should? Or do we try, say yes and wind up making things worse for us and our family? Either way - the result can bring guilt and disappointment.

                It is a fine line, one that can move with time. It seems like you have said no to things that would be impossible for you due to heat. I have to do that to and also feel like I am disappointing others, even though they understand. It also reminds me of what I am missing out on. For some things, I have found other options. When our church was doing something outside, I offered to do some things in the kitchen/ hall to keep cold drinks ready, etc... It was air conditioned in there.

                For travel, can you explore any accessible tours? I don't know enough about your concerns for flying to know if even feasible. Maybe take a short flight domestically, one that if need be, you could return via rental car or train? If it goes ok, it may reduce some of your concerns on travel. Or look into an accessible cruises? Have you reviewed your wish to travel and concerns with your neuro?

                But if you know travel is out definitely, is it possible for your wife to travel occasionally with friends or family? I tried to get my husband to go on a trip without me, but he wouldn't. He said he would feel guilty. So either way, one of us was feeling guilt. I felt I was limiting him - he felt he was leaving me behind. We both knew the guilt wasn't rational, but still felt it.

                As for the career loss, it is hard. It is a loss of something you enjoyed doing, a social loss, and a financial loss. It was another loss related to independence, and even part of our identity. My husband is working a few years longer than originally planned. Like you, the guilt is there.

                The biggest thing I try to do when some of these emotions hit me - acknowledge it for what it is and then in my mind, reverse the scenario. If I didn't have MS and my husband did, would I want him to feel guilty, disappointment, etc... Most times, it helps me let go. But sometimes, it just sticks with me and only time helps let it go.

                Not sure if I helped at all or just rambled. Really glad you reached out and are also seeing a therapist. Try to give yourself the same break you would give others. I hope you find some peace.
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #9
                  Hi Marco,

                  I guess you learned that you are human!

                  As a fellow MSer, I have felt all of the above (especially the SSDI guilt-women get that too, but I am wondering if it is still more prominent in men).

                  I guess I never fully grieved either. I am too busy just getting through the day with all these awful sensations my MS gifted me. Grief will probably follow me to my grave unless they find a cure for this thing!

                  My husband will never, ever EVER get what it's like to have MS, I've more or less accepted it at this point. Sometimes, my husband will be, "do you want to do XYZ"? I feel guilty if I say no, but sometimes I just want to say, "really? do you know what it's like for me to do XYZ?" I will soldier through until I can't anymore I guess or die trying. I really should see it as a blessing that he has pushed me so hard over the last 15 years. Otherwise I might be in worse condition than I am now! Who knows?

                  Be gentle with yourself Marco. I, too, have a tendency to flog myself for no reason really. Maybe that's another MS symptom as we look so good! Not like I am loving being forever sick or anything!!!

                  Kudos for getting counselling and for sharing your personal experiences. I think many here will relate.
                  Tawanda
                  ___________________________________________
                  Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                  Comment


                    #10
                    Originally posted by REG53 View Post
                    Marco, I am so sorry you are going these emotions. I wish I had some words of wisdom but I will leave that to your counselor.
                    Thank you for your kind words. I actually think the emotions are both normal and healthy. Traditionally, I just stuff them and never actually deal with them. I'm just at a point in my life where I need to deal with them so I can move onward with my life.

                    I realize that continuing to not deal with them only hurts me, my wife and others in my life. So I am looking forward to making progress to be mentally and emotionally healthier through this process.

                    Thank you again!

                    Comment


                      #11
                      Originally posted by gargantua View Post
                      Certainly you know the other perspective - that these people are with you because of love, and you did travel together to all of those amazing places. To practice gratitude sometimes feels forced (gratitude drills?) but it truly lets light in.
                      .
                      Thank you for your response and sharing from your own experience. I am sorry to read about your early loss of your mom at such a critical stage in your life.

                      For clarification purposes, my wife and I had each traveled extensively prior to meeting and we had planned on traveling together after we got married. Three weeks into our marriage I started having a flare up and was diagnosed four months later. We have traveled just a bit, but nothing like we had planned.

                      My wife is amazing and extremely supportive. It's the thoughts in my head that some times consider myself a burden or hindrance to her. Or struggle to fill the lingering void from no longer working.

                      Thanks again, your perspective has helped me understand that it is the thoughts in my head and not necessarily what she thinks or feels.

                      Comment


                        #12
                        Originally posted by rsinger View Post
                        For some of us our lives haven't changed at all and for others like yourself the life we once had is gone but the memories of that other life stay strong in our minds.
                        Thank you for your reply.

                        My history is chronicled some where on this site. I started a flare back in 2012 and in 3 days my life was turned completely upside down. I lost my ability to work, drive, walk, talk normally, lift anything over 3 lbs, etc, etc. I've been through hundreds of therapy sessions (PT, OT, ST, etc) fighting to regain my abilities. Even now, I continue to make progress that many doctors said wasn't possible.

                        Part of the reason I have not dealt with the emotional side of things is I've been so busy fighting to regain my physical abilities. At this point, my greatest deficit (that I can change) is in the emotional/mental arena so that's what I am now doing.

                        I opened up about it here at MSWorld because of the combined wisdom, shared empathy of our members, but also because if I am going through this others probably are too. So while the responses are already helping me, my hope is that others will also be helped by this thread.

                        Comment


                          #13
                          Originally posted by pennstater View Post
                          The biggest thing I try to do when some of these emotions hit me - acknowledge it for what it is and then in my mind, reverse the scenario. If I didn't have MS and my husband did, would I want him to feel guilty, disappointment, etc... Most times, it helps me let go. But sometimes, it just sticks with me and only time helps let it go.
                          That's very helpful. My love language is acts of service so it still wears on me.



                          Thank you for your thoughtful response.

                          Unfortunately, saying no comes easy for me these days. My body cannot contend with the heat. Living in Texas, I carefully plan the time, distance, frequency and every other controllable aspect of my life to minimize my heat exposure. I carry a portable fan and battery pack with me wherever I go. That gives me 2 hours of fan power when an outlet is not available. I have cooling vests, scarves, head coverings, lotions with cooling mint, etc, etc, to keep me cool. The number one feature when shopping for a vehicle is remote start. Yes, we know about moving out of Texas, but that's an entire other thread for a different day.

                          The biggest problem with travel, accessible or not, are "inconveniences" to many people, but pose an actual health hazard to me. Sitting on the tarmac and getting a delay is a good example where most people get frustrated, but I would start flushing within minutes and possibly require medical attention. I would never want to be that guy with medical problems that caused a plane to have to diverted or delayed. That said we will probably head to Vegas early next year on a direct flight because that is doable.

                          My limitations also don't necessarily cause my wife not to travel. Last year, she went to China for 2 weeks and will probably take another international trip next year. I get so excited for her, but of course I miss her and wish I could also be there in person. I know it also is bittersweet for her to go to some of these places without me, but she understands.

                          At church, I am part of the prayer team because that has no physical requirements. I can pray inside with the A/C, fan blowing my hair back. Unfortunately, I miss things like church retreats, but I do what's appropriate and grateful for it.

                          Originally posted by pennstater View Post

                          Try to give yourself the same break you would give others.
                          This is one of the things I was thinking about just last night. When people come to me for prayer I often tell them, "God isn't surprised by X, Y or Z. Before the foundation of the world God knew this day was coming and you would be in this circumstance."

                          Taking my own information, God knew I would marry my wife and have MS. That's really something I need to spend more time in prayer and meditation over. I believe that may help me lift some of the self-imposed burden from my heart.

                          Originally posted by pennstater View Post
                          I hope you find some peace.
                          That's exactly the goal - more peace and joy. There are some emotional and mental strongholds in my soul that need breakthrough. Some substantial progress has already been made, but I know there's still more work to do.


                          Thank you so much.

                          Comment


                            #14
                            Originally posted by Tawanda View Post
                            Hi Marco,

                            I guess you learned that you are human!

                            As a fellow MSer, I have felt all of the above (especially the SSDI guilt-women get that too, but I am wondering if it is still more prominent in men).

                            I guess I never fully grieved either. I am too busy just getting through the day with all these awful sensations my MS gifted me. Grief will probably follow me to my grave unless they find a cure for this thing!

                            My husband will never, ever EVER get what it's like to have MS, I've more or less accepted it at this point. Sometimes, my husband will be, "do you want to do XYZ"? I feel guilty if I say no, but sometimes I just want to say, "really? do you know what it's like for me to do XYZ?" I will soldier through until I can't anymore I guess or die trying. I really should see it as a blessing that he has pushed me so hard over the last 15 years. Otherwise I might be in worse condition than I am now! Who knows?

                            Be gentle with yourself Marco. I, too, have a tendency to flog myself for no reason really. Maybe that's another MS symptom as we look so good! Not like I am loving being forever sick or anything!!!

                            Kudos for getting counselling and for sharing your personal experiences. I think many here will relate.
                            It seems like we share a number of commonalities.

                            I am finally at a point where I need to face my grief for a more peaceful tomorrow. I see this as an opportunity for personal growth, but that can also help me be a better husband, person.

                            My wife deserves the best I can be and living in a wounded state doesn't help either one of us. So I am going to try to improve in this area like I fought to improve my walking, etc.

                            I truly appreciate your comments and glad my thought process isn't too far from the norm.

                            Comment


                              #15
                              Originally posted by Marco View Post
                              ..... trying to find the correct way to articulate it for the counselor to best help me.
                              Someone suggested printing your first post and taking it to your therapist and this is an excellent idea!

                              I never knew where to begin when I first talked to my therapist, but it happened with me being totally honest with myself and her. Honest to face my grief, my shortcoming, my unfounded guilt, my sorrow most of all. I know you will gain much during this time and I'm proud of you for acknowledging the fact that it''s necessary. Many men, like yourself, tend to push emotional feelings aside and view it as a weakness, like you mentioned. But opening up and being vulnerable shows signs of strength, imo.

                              You are not alone in this journey, Marco. I bet 75% of us here have benefited with counseling and are better because of it. You are an amazing man and friend to all of us here who value your help and support

                              Wishing you the best and thank you for your openness.
                              1st sx '89 Dx '99 w/RRMS - SP since 2010
                              Administrator Message Boards/Moderator

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