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    Anxiety (again)

    Well I'm doing well, almost fully recovered. I'm happy about that and just take every day as a gift.

    my recent breakup has me sad, and still life's challenges seem to have a dark MS cloud hanging over everything still. I always remain positive and say to myself I have MS now, I'm back to everything I used to do, except scaffolding at work and skating. Winters done (worst on in my life). I've worked so hard to push back against this disease and made some really good changes (diet, near daily exercise) I'm stable since January and tolerate tecfidera well (really easy to take) all this is well and good but I am scarred from my relapse in sept 2017 and living well with my MS. I can do all the right things and feel that I have control but I know I'm at risk of getting another attack which scares me still. I wouldn't mind if I can maintain this lvl of health for a long time (decades) but I have to live with the fact that maybe, yes I can or maybe, no I'll be disabled one day. It tears me apart inside at times but I try and not let these thoughts and MS control me. I will live my life as best as I know how,

    how long does does it take to come to terms with this dx and I want to almost forget about this disease but that's not gonna happen, anxiety is controlled with a very busy life but it still has its ways of sneaking up on me.

    i just want to have a good quality of life

    #2
    Hi Ant.

    i just want to have a good quality of life
    That's all any of us want.

    Every single person with or without this disease has struggles, those storms that cause fear, pain, anxiety, uncertainty, sadness, hopelessness and anger. With each storm we learn we are stronger than we thought. You learned you can get though an exacerbation and you became stronger and healthier in spite of what the disease tried to take from you. You learned you are able to fight back when needed. It takes strength, mentally to fight back when dealing with MS.

    Whenever you start to feel anxiety wash over you remember these two words:

    ANXIETY LIES.

    Live for today, not in the past or the future. Today is what counts.
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

    Comment


      #3
      I've been trying to crawl out of denial since 2001! And the anxiety.... for me it is a contant... always lurking and causing problems. It is so hard to beat anxiety. I get panic attacks and palpitations, stomach problems, dizziness etc etc. It's much harder to deal with the mental side of anything.

      You sound a positive person. Keep on going.
      Marti




      The only cure for insomnia is to get more sleep.

      Comment


        #4
        Sorry to hear. But what you are experiencing happens to everyone with any chronic illness.

        My first neuro told me it takes on average, two years for people to truly adjust to the MS diagnosis. I was alot better at the one year mark, but struggled off and on with fears.

        For me, the two year mark was right on. During that second year, MS stopped consuming my thoughts, a little less each month and the ups and downs were more spread out. At about the two year mark, MS had just become part of my life. I had to accept it, as the injections forced that, but the injections were just another part of the day not something that made me think about MS and my future.

        Given that, I still get anxious if some changes occur. Then comes a new acceptance. I always go back to my first neuro reminding me that I can stress and worry about my MS future, but could get hit by a bus tomorrow! A little morbid, but it reminds me that there is uncertainty in everyone's future. He also would ask me if I drove, knowing full well I did. Then he would remind me that fear of accidents didn't stop me from driving or being a passenger for that matter.

        Take comfort in knowing that you are doing all the right things for a healthier you. And research continues, so if you do progress at some point, who knows what options may then be available.

        Here's hoping your anxiousness is just a moment in time. If it is increasing, make sure you reach out to your therapist for help too.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Excacerbation

          Originally posted by SNOOPY View Post
          Hi Ant.



          That's all any of us want.

          Every single person with or without this disease has struggles, those storms that cause fear, pain, anxiety, uncertainty, sadness, hopelessness and anger. With each storm we learn we are stronger than we thought. You learned you can get though an exacerbation and you became stronger and healthier in spite of what the disease tried to take from you. You learned you are able to fight back when needed. It takes strength, mentally to fight back when dealing with MS.

          Whenever you start to feel anxiety wash over you remember these two words:

          ANXIETY LIES.

          Live for today, not in the past or the future. Today is what counts.
          Yes I appreciate that I recovered so well but the next time is the scary part, wat if it's a bad attack and put the utmost faith in my tecfidera to make it less severe so I can bounce back without much lingering deficits.

          hard to escape that thought.

          Comment


            #6
            Originally posted by Ant1981 View Post
            but the next time is the scary part, wat if it's a bad attack and put the utmost faith in my tecfidera to make it less severe so I can bounce back without much lingering deficits. hard to escape that thought.
            I know Ant. Many with MS could relate to how you feel, even myself. When you experience such a severe exacerbation it can scare the **** out of you. No one wants to ever experience something like that again...I get it and definitely understand.

            I want to stress; it is very possible to have a life where MS isn't necessarily in the fore front. Yes, you have MS and the exacerbations can be quite scary and depending on residual symptoms it's not possible to completely forget about MS. However, it is possible to have a good life IN SPITE of MS. The fear and anxiety, in my opinion, comes from a lack of control and not knowing when or if there will be another exacerbation and the ultimate outcome.

            There are things in our life we cannot control and those things we can...focus on those things you can control.
            Diagnosed 1984
            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

            Comment


              #7
              Things I have in my favor

              Originally posted by SNOOPY View Post
              I know Ant. Many with MS could relate to how you feel, even myself. When you experience such a severe exacerbation it can scare the **** out of you. No one wants to ever experience something like that again...I get it and definitely understand.

              I want to stress; it is very possible to have a life where MS isn't necessarily in the fore front. Yes, you have MS and the exacerbations can be quite scary and depending on residual symptoms it's not possible to completely forget about MS. However, it is possible to have a good life IN SPITE of MS. The fear and anxiety, in my opinion, comes from a lack of control and not knowing when or if there will be another exacerbation and the ultimate outcome.

              There are things in our life we cannot control and those things we can...focus on those things you can control.
              thanks for that Snoopy, I take the thoughts of my excellent recovery and other things I can control like diet, excersize, stress management, this keeps my anxiety at bay. Also just living my life and keeping busy... very busy.

              I had a lesion in a "bad" spot in midbrain pons, but a new lesion could appear anywhere one the CNS, doesn't mean I'll get a nasty flare up like that everytime either.

              plus the fact I read that MS is rarely severely disabling (especially this day and age) just a management of the disease for the most part ("just" is kinda the wrong term I'd guess).

              Early dx and quick treatment also relieve me a little so I should b ok I try to go with that.

              thanks for all your responses they help too

              Comment


                #8
                Any, I am feeling very scared too right now....especially after many years of feeling positive about managing my MS. It seems like emotionally I have regressed and quite frankly I don’t know how to respond.

                My recent flare has caused my now teen girls some anxiety and a feeling like they have to care for me. I don’t want to be a burden on them at all.

                This whole IVSM with a predinsone taper has scared the heck out of me....mostly because I feel like I don’t have good information on what to expect.
                I am trying to take one day at a time...sometimes an hour....but right now it is really hard.

                Feeling very vulnerable,
                MGM

                Comment


                  #9
                  DMD

                  Originally posted by MyGirlsMom View Post
                  Any, I am feeling very scared too right now....especially after many years of feeling positive about managing my MS. It seems like emotionally I have regressed and quite frankly I don’t know how to respond.

                  My recent flare has caused my now teen girls some anxiety and a feeling like they have to care for me. I don’t want to be a burden on them at all.

                  This whole IVSM with a predinsone taper has scared the heck out of me....mostly because I feel like I don’t have good information on what to expect.
                  I am trying to take one day at a time...sometimes an hour....but right now it is really hard.

                  Feeling very vulnerable,
                  MGM

                  Hey MGM, are you on a DMT??

                  I'm not sure if you mentioned that before.

                  Comment


                    #10
                    Ant, no I went off Copaxone about 1 1/2 years ago due to lack of injection sites. I fear the side effects of the heavy dose therapies more than the MS progression.

                    I think this anxiety is the flare....trying hard to be positive. Feeling afraid and alone.

                    Comment


                      #11
                      Rookie

                      Originally posted by MyGirlsMom View Post
                      Ant, no I went off Copaxone about 1 1/2 years ago due to lack of injection sites. I fear the side effects of the heavy dose therapies more than the MS progression.

                      I think this anxiety is the flare....trying hard to be positive. Feeling afraid and alone.
                      Im just newly dx but I do hear you, I felt so isolated during my flare too it really sucked (like big time)

                      i just got smacked real bad by dx flare and had a horrible introduction to the world of MS. Have you tried tecfidera? It's actually so easy to take and tolerate so well I get 0 side effects. That's just me though do you plan on trying another DMD?

                      Im so very sorry your dealing with this, but sounds like your strong. Being a single 37 year old male I was so alone, but you have daughters by your side. Draw strength from them you seem like a fighter, I just know it. 👍

                      You will see an an end to this flare and I wish you the best moving forward.

                      im not much help but felt the way you do and if I can get through it you can too

                      Comment


                        #12
                        Geeze, you probably do not want to hear this, but I never got over my anger about having MS. I just kind of manage it. I unfortunately have such bad fatigue that I can't really ever put it out of my mind completely. It is a part of me. Yoga, naps, chatting with others who get me, my pets, reading, tv...all good distractions, but I have accepted things will not be the same as before I had MS. Definately a bright red line drawn between pre-MS me and MS me.

                        Sorry. Looking for more optimistic replies to your post than what I gave!
                        Tawanda
                        ___________________________________________
                        Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                        Comment


                          #13
                          Have you considered going to grief counseling?

                          Is there a local MS support group that you can join?

                          Comment


                            #14
                            Originally posted by Ant1981 View Post
                            ...

                            how long does does it take to come to terms with this dx and I want to almost forget about this disease but that's not gonna happen, anxiety is controlled with a very busy life but it still has its ways of sneaking up on me.

                            i just want to have a good quality of life
                            I'm glad to hear that you are doing well. A good quality of life is what all of us desire.

                            Regarding your question, for me, acceptance is not an all-or-nothing stage that I either reach or don't. I think that coming to terms with this disease is sort of like the stages of grief. It doesn't happen the same for any of us, it may not happen in the same order, we may go through some steps (of "grieving" our illness and losses) and not need to go through others, and most likely, we will cycle back through some steps more than once -- sometimes grieving the same losses over again, and sometimes needing to grieve continuing new losses.

                            So, if I look at "coming to terms" with my disease using a grief model, the stages I can go though include denial, anger, bargaining, depression and acceptance. And, yeah -- we're all different. And, even after I experience acceptance, I don't stay there indefinitely. I cycle back sometimes. But, I don't dwell in my grief of the losses that MS has triggered; I spend much of my life in the acceptance stage. Or, at least, accepting it enough to be happy and to live a life that has lots of quality, even when the other emotions and challenges continue to exist. It's not all-or-nothing for me.
                            ~ 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


                              #15
                              This is such a good thread and I appreciate all the comments and personal insight that everyone has shared.

                              This disease is hard to manage and for me it seems that fear and anxiety have various Seasons in my life with MS.

                              Ant, With your DX and flare, this is a really tough time. But please know that it does both mentally and physically get better....all of it will but it will take time. It is unfortunate that each person is different and the time line isnt exact but varied and unpredictable.

                              My dx was in 2009, although I have had MS since the early 1990s. For those first 3 years at DX I really struggled with ongoing symptoms and flares, working in a job outside the home and managing two young children. Now I seem to hardly remember those days, but I know some were quite long. If I had to do that again now, I am not sure that I could....I just didn’t think about it, I just did it in sort of a survival mode I think. Crazy!!

                              Then I went through a period where I did have some symptoms but they didn’t impact my life so significantly and I was able to push them aside and just live. I would say that that has been the past 5 years...I am so very grateful for that time period where MS didn’t consume all aspects my life.

                              Of course, this past month I got hit with a flare that was probably the biggest since I was diagnosed resulting in IVSM and prednisone, which I have never experienced before. Well, my positive “can do” attitude just got an huge adjustment. I felt kicked to the curb. So much for feeling like the strong positive woman I pretend to be. Now I feel like I have regressed going back to that familiar place of anxiety and fear.

                              Please know that while I share this with all of you, people on the outside, at work or kids school, see the “smiling me” that minimizes my leg, walking and weakness issues, as I truck around with my cane in tow as if nothing was unsual and there really wasn’t a cane there or walking issues at all. LOL!

                              During these past 3 weeks, I have had some pretty good pity parties in the middle of the night when I am unable to sleep. I don’t think my daughters really remember me being this bad, so this recent flare has caused them some concern too. They are teens focused on school and their lives and trying to figure out what is going on with Mom. They have grown into strong and compassionate girls...and I am sure my MS issues over the years have given them that gift.

                              That all said and for the most part I still am positive and hopeful....for me and for all of us. We can each only take each day we are given and do the best we can. I take heart that each of you here on the Board are doing the same...staying the course during goods times and bad.

                              I am feeling so grateful for this network of MSers lifting each other up during times of darkness. Thank you for helping me to not feel so alone over the past couple of weeks. I hope that my story will help someone else know and believe that the dark times do and will get better. Hugs to you all!!

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