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Guilt? Disappointment? Continual Loss?

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    #16
    Hello Marco. I could have written the same thing. Just saying you’re certainly not alone in wrestling with this. I get anxious when I think of a task or chore or my future. I feel the guilt of not being the person I should be because of MS. It’s a card now we have to play with every hand. You are exercising wise choices for you’re limitations and well being. I know you’re not happy with those choices but you know the lessor of the two evils. Go out and struggle physically or stay home and struggle mentally? MS has beaten us up enough without us beating our selves up too.

    My only advice is to continue to make the choices that are going to be the best for you. I do think that travel is still attainable for you just plan it out knowing what you know now. Easy small airports are a must for me. Some days are tougher than others. It’s the absolute rotten miserable ones that make the good ones feel pretty darned good, all things considered. I’m not atheist and I’m not religious but I do believe it’s all just part of a journey and when we finally get there none of this stuff will matter, or if it does in a good way. Just a journey. Ours
    Other people have theirs different yet the same.
    Chin up , we have to make the best of it. And who knows tomorrow there might be something to help us. Don’t lose hope. Always darkest before the dawn.
    It was one agains't 2.5million toughest one we ever fought.

    Comment


      #17
      Originally posted by Seasha;1522585,
      I bet 75% of us here have benefited with counseling and are better because of it.
      This is the only life I have to live and I need to do the best that I can with it. My wife deserves the best husband that I can be and that includes me being emotionally and mentally healthy. I also need to do this for myself to have more peace in my mind and life.

      In the past, EMDR has helped me overcome recurring military-related nightmares that I suffered with for well over 20 years. So I know progress is possible and look forward to overcoming additional areas of trauma.

      I've been in counseling for a while now and we're going to start EMDR on Wednesday. So my current task to is to create a list of past circumstances that correlate with current psychological symptoms (anxiety, stress, guilt, etc).

      I talked to my wife about it and the first thing she said was, "you feel guilty about MS." I'm smart enough to know she is correct and that was the catalyst to this post. I've already learned a lot from the responses and feel better equipped to move forward.

      Thank you for helping me on this journey.

      Comment


        #18
        Originally posted by oceanpride View Post
        MS has beaten us up enough without us beating our selves up too.

        I’m not atheist and I’m not religious but I do believe it’s all just part of a journey and when we finally get there none of this stuff will matter, or if it does in a good way. Just a journey. Ours
        Other people have theirs different yet the same.
        Chin up , we have to make the best of it. And who knows tomorrow there might be something to help us. Don’t lose hope. Always darkest before the dawn.
        Thank you for your reply. There's comfort in just knowing my thoughts are not out of bounds from others in a similar circumstance.

        I do realize that I am unfairly beating myself up in some areas and that's exactly why I am reaching out for help here and professionally with a counselor.

        As a person of faith, I am very grateful for and count my blessings daily. I know even this, and other, hardships are part of my journey and wholeheartedly believe there's a greater purpose for it. I have never had a hardship that did not turn out to be a blessing for someone else down the line.

        That said, I believe we owe it to ourselves to be as healthy as possible and that includes emotional health. I've made great strides in other aspects of life and it's now time to focus on my emotional and mental well-being. So I am embracing this next chapter with hopeful expectations for a better tomorrow.

        I wish you well...

        Comment


          #19
          Originally posted by Marco View Post
          Over a decade into my MS journey, I probably have never allowed myself to truly complete the grieving cycle.
          I don't believe that I will ever "complete" the grieving cycle. Five stages of grief have been identified as denial, anger, bargaining, depression and acceptance. Although I've been through all of them, or stages similar to all of them, at various times, I occasionally feel a need to cycle back through stages when something triggers old feelings or past memories, or when new losses occur.

          Originally posted by Marco View Post

          - Thursday my wife was curious if I would be interested in taking a vacation overseas.

          - 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.
          Yeah; I'd be too anxious about my limitations to be able to enjoy traveling or consider missions at this point.

          Originally posted by Marco View Post
          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.
          The heat doesn't keep me from activities, but I do need to plan carefully around my energy level, stamina, tolerance for stress and for busy schedules. I also loved working and had hoped to go on to a master's degree and the ability to contribute to a higher income for us.

          I don't believe that I feel "guilt", exactly. But sadness and regret.

          Originally posted by Marco View Post
          As a person of faith, I am very grateful for and count my blessings daily. I know even this, and other, hardships are part of my journey and wholeheartedly believe there's a greater purpose for it. I have never had a hardship that did not turn out to be a blessing for someone else down the line.
          Wisdom. Thanks for this.
          ~ 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


            #20
            I'm always a fan of therapy when there are things we aren't able to problem solve alone or if we need someone outside the family, friend network for objective and professional insight.

            What struck me the most about your post is that it seemed to focus on activities or travel that you aren't able to do because of MS limitations. In addition to disappointment it is a recurring hit which in the case of mental health is similar to a trauma history and I would think could result in a more severe course based on the repeated exposure.

            Would it make sense to brainstorm a list of travel opportunities or social engagements that you are able to attend? Kind of like making the glass half full rather than half empty? IDK just a thought. Please keep us posted.
            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

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              #21
              Originally posted by Mamabug View Post
              I don't believe that I will ever "complete" the grieving cycle. Five stages of grief have been identified as denial, anger, bargaining, depression and acceptance. Although I've been through all of them, or stages similar to all of them, at various times, I occasionally feel a need to cycle back through stages when something triggers old feelings or past memories, or when new losses occur.
              I absolutely agree with you that most MS patients never "complete" the grieving cycle because as progression increases there are new things to grieve. That's why included continual loss as part of the thread title. There are also triggers that may require past items to be readdressed from time to time. I've experienced these situations when dealing with my military mess. I still avoid military movies because most are not healthy for me.

              I'm very familiar with the stages of grief and helped others understand it, or walk through a particular stage. What hasn't happened is I have never permitted myself to go through the stages. Instead I stuffed the emotions and just started the fire fight against the disease.

              So I know a lot about MS, and I'm not afraid of it. I'm not really angry or bargain, but I do need to start at the grieving stage for a number of areas. I'm looking forward to this process so I can grow and become healthier.

              Thank you so much for your response. It's quite helpful and really in sync with what you am currently going through.

              Comment


                #22
                Originally posted by Jules A View Post
                I'm always a fan of therapy when there are things we aren't able to problem solve alone or if we need someone outside the family, friend network for objective and professional insight.

                What struck me the most about your post is that it seemed to focus on activities or travel that you aren't able to do because of MS limitations. In addition to disappointment it is a recurring hit which in the case of mental health is similar to a trauma history and I would think could result in a more severe course based on the repeated exposure.

                Would it make sense to brainstorm a list of travel opportunities or social engagements that you are able to attend? Kind of like making the glass half full rather than half empty? IDK just a thought. Please keep us posted.
                Thank you for your feedback.

                Yes, I need a professional to use EMDR as a therapy to get through some of my areas. Talk and CBT will be used for other areas not well suited for EMDR.

                The examples used were just what is currently going on in life and how they only reinforce existing triggers that I have.

                I remember days when other people had to cut my food or having to drink out of s child's cup because an adult glass was too heavy. I've made miraculous improvements in the physical and spiritual realms, but largely ignored the emotional/soul areas.

                About the glass analogy...
                In the past I've always worked hard to fill the half empty glass without ever stopping to spend time worrying about the glass being half full or empty.

                I'm a hardcore thinker so I have never spent much time dealing with emotions. They were easy enough to stuff and just keep on moving on. The problem is that you cannot continue to stuff things into perpetuity. You end up playing a losing game of whack-a-mole.

                For example, I've been out of the workplace for nearly 7 years and never grieved losing a career that I truly loved. It was far more than an earning opportunity, it was a calling. So that's one of the areas I need to allow myself room to grieve.

                At the same time, I am doing my best to find new endeavors to productively use my talents despite what limitations I have.

                Specifically about travel. I know there are some destinations or activities that I may never get to. I love to go deep sea fishing, but that requires warm waters (and warm temperatures). I do believe that is one of the few things I have truly accepted and made peace with.


                It's taken 7 years of post-flare hard work to make travel options more possible. Now that physically I can do more things more things are possible.

                Wifey and I should be going to Vegas early next year before temperatures get outrageous. We may also drive to the coast later this year just to spend time at the ocean. The ocean is a place for healing for me so that would be awesome. My wife will be having ankle surgery later this year so the coast trip may have to wait until next year.

                I also contend with a number of other medical conditions besides MS. The two biggest symptoms that hinder my quality of life are heat intolerance and chronic pain. These impact nearly every area of my life, but they also serve as more of a catalyst to live to the possible full. I hope that makes sense.

                Thanks again.

                Comment


                  #23
                  Originally posted by Marco View Post
                  I'm not really angry or bargain, but I do need to start at the grieving stage for a number of areas. I'm looking forward to this process so I can grow and become healthier.
                  You've thought a lot about and worked through different areas that needed to be addressed, Marco, and just recognizing the next steps for soul healing through grief is a big step. You are halfway already there by this recognition and the willingness to work on it!

                  I'm also so glad you have a healthy relationship with your wife. It sounds like she has been every step on the way towards helping you and will continue so. That's truly a blessing.

                  Be well and take heart that healing will come
                  1st sx '89 Dx '99 w/RRMS - SP since 2010
                  Administrator Message Boards/Moderator

                  Comment


                    #24
                    Originally posted by Marco View Post
                    For example, I've been out of the workplace for nearly 7 years and never grieved losing a career that I truly loved. It was far more than an earning opportunity, it was a calling. So that's one of the areas I need to allow myself room to grieve.
                    Your positive insight and lack of bitterness is inspiring. I attempt to handle my challenges with similar grace and stride although I am not always successful.
                    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


                      #25
                      You are a brave man. Diving into these painful feelings sometimes takes more courage that being on the battlefield.

                      You are not alone. I am constantly turning down invitations because of the fatigue. Maybe people understand but they give up and don’t ask anymore.

                      I have got a real difficult one on my hands. My son and his girlfriend want to come stay at my little apartment for a week over the holidays. That sounds good, doesn’t it? Except they are coming from camping and will bring all their filthy gear and descend on me. I have gotten so cleaning and preparing something like that are too strenuous. My skin i s so thin and fragile that one speck of dirt can send me in agony.

                      Do I tell my own son, who I love to see, that he needs to stay in a motel?

                      Comment


                        #26
                        Originally posted by palmtree View Post

                        I have got a real difficult one on my hands. My son and his girlfriend want to come stay at my little apartment for a week over the holidays. That sounds good, doesn’t it? Except they are coming from camping and will bring all their filthy gear and descend on me. I have gotten so cleaning and preparing something like that are too strenuous. My skin i s so thin and fragile that one speck of dirt can send me in agony.

                        Do I tell my own son, who I love to see, that he needs to stay in a motel?
                        If it is just the dirt, can you tell your son that they are welcome, but the camping gear needs another place to stay? And that you may nee some help cleaning up at the end of their visit?

                        If any company, regardless of how clean they are, is the issue, it seems you don't have much choice but to let them know that you really want to see them but need them to stay elsewhere. Let him know that you would like nothing more than to be able to host them and spend a lot of time together, but that MS limitations make that impossible. Or if you feel you could host for a few days, then let them stay in motel the beginning - that way they are clean when they come.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #27
                          Originally posted by palmtree View Post

                          I have got a real difficult one on my hands. My son and his girlfriend want to come stay at my little apartment for a week over the holidays. That sounds good, doesn’t it? Except they are coming from camping and will bring all their filthy gear and descend on me. I have gotten so cleaning and preparing something like that are too strenuous. My skin i s so thin and fragile that one speck of dirt can send me in agony.

                          Do I tell my own son, who I love to see, that he needs to stay in a motel?
                          Your health and safety are more important than their camping wants. Maybe they could come visit you before they go camping and getting all dirty? Or maybe they should get a hotel. I'll be honest a week long visit would wear me out.

                          What advice would you give someone in a similar situation?

                          I believe the best answer is to have a heart to heart conversation with your son and just be honest with him. That you eagerly want to see him (them) and are excited about their visit, but you have both concerns and health limitations.

                          Your limits are not a reflection on your relationship, but rather the reality of life with health complications. I would hope his attitude would be to do whatever was possible to helpful to you during their visit.

                          I'm so sorry that you aren't able to just be carefree about their visit, but you should not cater to their wishes at the expense of your health. I hope you can find a good compromise so you can enjoy catching up without harming yourself.

                          I wish you well.

                          Comment


                            #28
                            This article hit my news feed this afternoon.


                            The Journey to Self-love Is Long and Painful

                            Excerpt
                            "I was raised to be silent with my struggles. I was taught to smile politely and listen. I was told to reply that I am well, thank you. This was not done with malicious intent, rather a desire for good. The unfortunate truth is that I hid myself. At a time when I felt most alone, I learned to remain that way.
                            ...
                            But I still feel that little girl. She is beside me. Now with secondary progressive multiple sclerosis, I fight in her honor. I am caught between 17 and 50. The memories are visceral, yet today I am whole. I am enough.

                            I am often reminded to be gentle and kind to myself. As silly as it sounds, chronic disease and pain can rob us of the ability to do so. The virtues we so easily show others often are lost on ourselves.

                            One of my greatest adversaries has been guilt. I am a work in progress. I feel guilty that I am sick. I feel guilty that I require such expensive medications. I feel guilty that I can no longer do things. I feel guilty at my ever-growing disability.

                            And then I stop. I remind myself that guilt is a crippling emotion. It renders us immobile. I want to move and I want to grow. I want to learn and I want to do better with that knowledge.

                            Multiple sclerosis and chronic pain continue to be unsuspecting teachers. I am surviving and thriving while taming my demons. I am learning to coexist with even the most uncomfortable of physical and emotional pain.

                            And in doing so, I wave goodbye to the little girl and embrace the woman.

                            Comment


                              #29
                              This is touching, and I love it, Marco - could you supply a reference to this to keep in accordance with our copyright guidelines? Thanks so much
                              1st sx '89 Dx '99 w/RRMS - SP since 2010
                              Administrator Message Boards/Moderator

                              Comment


                                #30
                                Originally posted by Seasha View Post
                                This is touching, and I love it, Marco - could you supply a reference to this to keep in accordance with our copyright guidelines? Thanks so much

                                So sorry. I meant to Link the complete article.

                                https://multiplesclerosisnewstoday.c...gnosis-growth/

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