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    #16
    Originally posted by peggyprobus View Post
    I imagine losing your husband in a divorce is a lot like losing him to death.

    I hope your situation improves.
    I have made that comparison as well, but I think death would be easier to cope with. I'm lying to myself, he's still here in this world and he might change his mind and come back to me.


    I hope your situation improves.[/QUOTE]
    Yeah, me too. Thanks.
    Karen

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      #17
      Thanks to all for sharing - it helps to know we're not alone in this.

      I found this at Heathguide.org:

      Myths and facts about grief


      MYTH: The pain will go away faster if you ignore it.

      Fact: Trying to ignore your pain or keep it from surfacing will only make it worse in the long run. For real healing it is necessary to face your grief and actively deal with it.

      MYTH: It’s important to be “be strong” in the face of loss.

      Fact: Feeling sad, frightened, or lonely is a normal reaction to loss. Crying doesn’t mean you are weak. You don’t need to “protect” your family or friends by putting on a brave front. Showing your true feelings can help them and you.

      MYTH: If you don’t cry, it means you aren’t sorry about the loss.

      Fact: Crying is a normal response to sadness, but it’s not the only one. Those who don’t cry may feel the pain just as deeply as others. They may simply have other ways of showing it.

      MYTH: Grief should last about a year.

      Fact: There is no right or wrong time frame for grieving. How long it takes can differ from person to person.


      This source talks about the grief and loss of a loved one, but certainly can be applied to ourselves as well! It speaks of defining grief, tips for coping with grief and loss, when to seek professional help and much more. http://www.helpguide.org/articles/gr...f-and-loss.htm
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

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        #18
        I was just diagnosed with RRMS 4 weeks ago. I am a 21 year old currently still in university. While my symptoms have subsided, I grieve the loss of a quality of life I thought a 21 year old should have. I have even tried to convince my MS nurse I didn't have MS (she wasn't buying it - can't say I didn't try! )

        I guess right now I am mainly in denial. I have written and re-written this post many times but didn't quite understand what I was feeling. I have tried telling myself that everything will be alright, but really who knows what is going to happen with this disease? There's always a voice in the back of my mind that reminds me I have no idea what this disease will turn into for me.

        Anyway, thank you all for sharing your experiences! It is really comforting to know there ARE people who can understand what I am going through.

        Lauren
        "Don't lose hope - when the sun goes down, the stars come out". - Unknown

        Comment


          #19
          Thank you Seasha.
          God Bless Us All

          Comment


            #20
            Grief

            I have been hiding from the world for quite some time. Since I went out on disability, slowly but surely all of my friends have dropped out of my life. It is too difficult to get out very much and my house is never in any shape to have company.

            I was never much on facebook, but feeling lonely this week, I logged on to see what the rest of the world was doing. It was a surreal experience as I realized I felt as though I had died and the world was going merrily along without me, as it should be. But it made me feel very sad that I am no longer a part of it. I don't fit in there anymore.

            I was diagnosed in 2008 but had this much longer. Still, it was a shock to be diagnosed and I still feel like I am trying to make sense of it all. I have a wonderful husband and grown sons plus a 10 year old daughter, whom I love very much. Sometimes I go along thinking they get this disease and understand why I am the way I am. And sometimes I realize, the longer this goes on, the more difficult it becomes for them to forgive me. They don't deserve to be burdened with my care.

            I once had a boss whose mother had been disabled from ms and had been living in a nursing home for more than 10 years. She rarely saw her (I mean years between visits) and needed to get drunk just to talk to her on the phone. I'm so afraid my daughter will feel this way about me. Ironically, when I worked with this woman, she fretted constantly that she might one day have ms. I already had ms before I met her, but I had no idea. I think about all the issues I was having at the time, and I just kept most of it to myself. I didn't understand why my life seemed to be falling apart and I just kept trying to put it all back together and push myself to control everything.

            When I did share, even with my doctors, I was made to feel that I was crazy or lazy or clutzy. I had doctors tell me I needed to wear different shoes or pick my feet up more when I walked! Yes, I still get so angry thinking about how the two physicians I saw for severe vertigo treated me as though I was faking it or as one suggested, doing this to myself. And when I was finally diagnosed, I was almost already SPMS. So, if I had been diagnosed sooner, might the DMD's have delayed my disability a little longer? At least long enough to raise my daughter and not have her grow up to hate me?

            And yet, I did have many good years when my sons were growing up. I wasn't disabled at a young age and I feel I should not be throwing myself any pity parties. And if I had been diagnosed sooner, maybe I would not have my daughter at all because I would have been on a DMD and would have made sure not to get pregnant. I can't tell you how much happier she has made our family.

            I hope you all can understand and forgive me. I just really needed to vent my grief today.

            Thank you

            Comment


              #21
              Originally posted by MBC3mom View Post
              I hope you all can understand and forgive me. I just really needed to vent my grief today.
              Thank you
              Forgiving yourself is a key thing. In your case, try forgiving yourself for forgiving others.

              MS is nobody's fault. It's not yours as much as it might be a kid's, so don't expect blame from them. If they do blame you, they'll get over it in their own time or they won't. Same goes for the friends that disappear. Sure, they could be blamed for bailing, but forgive them, just like forgiving yourself for blaming them.

              Be there for the people that are there for you. The're the ones that want you around. If they don't want to be around you, let them go. It can be rough, but that's the best way to have it in my opinion.

              Letting go of others in your life is a step of grief as much as anything. You can deny that "lifelong" friends are leaving, you can try bargaining with them or yourself, get angry with them, get depressed about their absence, or just accept it and move on. There won't be room for a real support structure until you do.

              Comment


                #22
                I can relate.

                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 hear you Karen, I always thought I was doing great and I have seen so much go away. I use a cane all the time. I fell and broke my knee last year and am hoping not to break anymore. Hang in there Karen. Enjoy the things you can do.

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                  #23
                  Must be so incredibly hard😰

                  I have almost the exactly same story but in my case my huband and I are together since our first date 50 years ago. However he has been in chronic pain for the last 30 years as a result of a damaged nerve due to sinus surgery. It has been 26 procedures later, 3 operations in the brain. In all of this I have had to be the caretaker and have found that combined with stress it is a real steamroller experience. Amazing that when you have a good day it is like a mini miracle.

                  Seems like time and MS take such a toll on one's resilence. I must admit I never get zen like and mostly despise what this disease has robbed me off. Do all the stuff you are suppose to like keep a gratitude journel but all in all never feel happy anymore. More of an endurance course and the potholes in the road are more like craters to climb out of. Trying the low dose naltrexone so see where that goes. Also now have interstitial cystitis so can't even comfort myself with chocolate. Who ever knew it was acidic??? I do manage at times to laugh at all if this but who would have thunk?



                  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.

                  Comment


                    #24
                    Grief and Sadness

                    I have gone through they cycles over and over since dx. I can't seem to snap out of it this time. I lost my happiness. My only consolation is that I have gotten over it before and hope it will happen again.

                    I am doing mindfulness meditation and now I believe that as low as I feel, like my life is ruined, is just an emotion and it will pass. I just wish it would hurry up!

                    Comment


                      #25
                      I can totally relate!

                      Originally posted by Laurendiana View Post
                      I was just diagnosed with RRMS 4 weeks ago. I am a 21 year old currently still in university. While my symptoms have subsided, I grieve the loss of a quality of life I thought a 21 year old should have. I have even tried to convince my MS nurse I didn't have MS (she wasn't buying it - can't say I didn't try! )

                      I guess right now I am mainly in denial. I have written and re-written this post many times but didn't quite understand what I was feeling. I have tried telling myself that everything will be alright, but really who knows what is going to happen with this disease? There's always a voice in the back of my mind that reminds me I have no idea what this disease will turn into for me.

                      Anyway, thank you all for sharing your experiences! It is really comforting to know there ARE people who can understand what I am going through.

                      Lauren


                      Hi Lauren, it is great to meet you and everyone else! I am sorry that you feel the way you do. I absolutely understand where you are coming from. I am 21 as well and I am a junior in college. I was diagnosed with RRMS MS when I was 16 going on 17 in my junior year of high school. I went from going blind at a championship meet to to being in a hospital bed the next day.When I was in the hospital and I found out, all I could do was cry. I was just given a packet explaining to me what this disease was with a doctor saying that I will be fine and that I would grow old and live a great life. At the time, I could not even comprehend what was really going on and I still thought my life was over.

                      However, now, I always happen to find myself laughing with all of my infusion friends and the nurses every 28 days as if this disease is just that uninvited guest that just doesn't know when to leave haha. I know personally for me, I have had my ups and downs with not just this disease and the medication, but just the diagnosis itself. When you find out, you think why me or where do I go from here? Or even do I bother to find a google doctor to tell me different? It is one of the mysteries where everyone may never know why.

                      I can honestly tell you that in the past 4 years that I have had this disease, and not a day has gone by where I have not had that occasional thought of, "I wonder what my life would have been like without this disease? Would I be different? Would I be happier? Would I be in love? And will I ever be the person who I could have been?" I have thought these over and over and over again. Therefore, like you said, coping with this really was the hardest thing to do.

                      However, I have learned that with this disease, all it does is make you stronger. Yes, every case may vary or can even be alike, but at the end of the day this our baggage. It sucks, it really really really does, but it is ours. My nurses and my infusion friends have taught me since I have met them that I can't let this disease get me down or keep me from being the person who I want to be. As much as I would honestly love to daydream and dwell on the past, I realized I can't. I know, it feels like a piece of you is gone and isn't coming back. Literally, I used to imagine my own Titanic scene with myself letting go of myself into that deep blue abyss, begging myself to come back. As corny as that sounds, I did it. I think it is safe to say that everyone here has had that thought of not knowing who they would be after all of this. Finding out you have this disease is not easy, heck finding out you have any disease isn't. As long as you know though that you are not alone and that there will always be people by your side all the way, then that is really all that matters.

                      The possible old you could have been great and the possible old you honestly could have been terrible. The same way how we don't know where this disease will take us, is the same way that we don't know who we could have been before this struck us. So, this is why we have to be stronger. The baggage we now carry will break us down, make us tired and want to give up, but it is ours. We carry it around, not vice versa. Or at least, you can't really let it dictate you. You sound like a great person and who is in a spot that is unfortunate and has been visited by many.Take the time that you need understand everything and feel the way how you are trying to feel. It is not something easy to try to understand. It is okay to not be okay right now. Just know that you really are not alone and things may not be easy, but at some point, mentally, emotionally and even physically, things do turn around. Maybe not today or tomorrow, but they do.

                      I wish you nothing but positive thoughts and success on everything that you try and do!

                      -Patty

                      Comment


                        #26
                        Grief

                        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.
                        This makes me so mad (and sad). He doesn't want to live with MS, hello, we didn't ask to live with MS. I am so sorry that you have to go through divorce on top of everything else. I know what you mean about the 5 step process, mine didn't go very smoothly, and I don't think I have really accepted it.

                        Comment


                          #27
                          Great topic. I started my MS journey when I was 26 and my foot went numb. A few months later, I was officially diagnosed. I dealt with the grief and was able to remain positive.

                          Now, I'm 33 and I feel more scared and upset to have MS than I ever have felt! Last summer I got shingles. It was so painful and I was so mad that all these meds that are supposed to help me were making me SO miserable.

                          I've been married now for 4 years and we don't have kids. But, the typical "when are you having kids?" questions are really weighing on me. I know logically that I can have kids with MS. I know lots of women feel great during pregnancy. But, I'm still scared. I'm fatigued all the time and don't know how I'll get through pregnancy or chasing around my kids. My feet go numb all the time and I feel like this will be terrible to deal with if pregnant. I worry about all the weight I've already gained from steroids and being unable to exercise vigorously like when I was younger because I already feel overweight and unhealthy. I've always wanted kids but now I'm just scared and not sure if it is right for me. This is a hard topic to discuss even with my husband because it just makes me so sad and mad.

                          The icing on the cake this year was when around Christmas my husband said "hey, is that a new mole on your back?" I'm fair skinned and blonde. Before my MS diagnosis I was good about yearly dermatologist checks but I have let those lapse because frankly, I go to the doctor so much already... I made an appoint with a dermatologist and went in March. She biopsied the mole and it came back as melanoma. Again, I'm left so mad that the drugs that are supposed to help me are betraying me! Luckily, it was a stage 1a so I just had to have to surgically removed and then we will monitor my skin every 3 months for at least the next 3 years. But, I can't help but feel anger that this disease probably led to me getting CANCER!

                          To make matters worse, I don't think my husband and family truly appreciate the magnitude of this. Melanoma is very scary. If I had put off getting it looked at even another month, I could be in a very different position then just having it cut out. Everyone else around me acts like I'm cured by its removal so it's water under the bridge but to me, I'm a nervous wreck inside worrying it will come back or is somewhere else.

                          So, this last 10 months I feel like I've had a much harder time dealing with having MS than any other time in my journey. I wasn't expecting that.
                          Symptoms Oct 2009, Dx Feb 2010. betaseron 2/10-2/12. Copaxone 3/12- present.

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