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    #46
    Beach Betty

    Originally posted by mkwhite35 View Post
    I'll just play the devil's advocate here...

    Is social activities truly making you tired- or is it just an excuse?

    And for those who say you're tired from hiding your symptoms- why hid them? Sure you might have to explain, but it will add to people's education, but probably less tiring than trying to hide something that is a part of us.

    And a last devil advocate question to throw out there-
    Are you trying to hide MS from everyone else- or yourself?
    Oh my, if only fatigue came from hiding symptoms, it could so easily be remedied! I suppose by not accepting evening invitations, I would be "hiding" symptoms. But those symptoms, like increased lack of coordination and falling, not getting a fork to my mouth instead of my cheek, and talking in gibberish, have only received comments such as "am I drunk"?!! No, I was not drunk or drinking. It's simply embarrassing and does not make for enjoyment. So I don't go out when I know the fatigue is overwhelming. Is that hiding? Perhaps. Or perhaps it is self preservation and making myself feel better by not going out to follow the crowd. I don't feel guilty about it.

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      #47
      DianeD, check out the online/catalog retailer that rhymes with Bands Bend. Really cute styles cut for a woman's body. Soft, good quality fabrics that are easy care, and non-binding and comfortable styles without lots of frumpy elastic waists Their Starfish line is fantastic.

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        #48
        Originally posted by mkwhite35 View Post
        I'll just play the devil's advocate here...

        Is social activities truly making you tired- or is it just an excuse?

        And for those who say you're tired from hiding your symptoms- why hid them? Sure you might have to explain, but it will add to people's education, but probably less tiring than trying to hide something that is a part of us.

        And a last devil advocate question to throw out there-
        Are you trying to hide MS from everyone else- or yourself?


        I don't hide my symptoms; neither do I advertise them if I can help it. I have poor balance and it's actually sometimes a bit funny. Good friends don't care. I believe and relate to those who say they don't enjoy socializing due to many factors; noise, fatigue, feeling overwhelmed, etc.

        If you are in pain as some are, then why would you feel like socializing? Everyone copes in different ways. I'm pretty secure with mine.

        I didn't pick up the same feelings you did. I didn't see anyone trying to hide. I think they were saying they didn't enjoy displaying their particular symptoms.

        I don't know what it is about the noise and hustle/bustle thing. The 'din' in certain situations just gets to me.

        Anyway, if you aren't experiencing it, or if you just handle things in a particular way, it's fine. We all have to find our way.

        Diane
        You cannot dream yourself into a character; you must hammer and forge yourself one.

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          #49
          Goodbye, China! :-(

          After living and working in China for more than 20 years, it's time to say goodbye. This has been one of the most difficult decisions in my life.

          My family and I came to China in 1993 as English teachers. We raised our two children in China, and fell in love with this amazing culture.

          Fast-forward to two years ago. I didn't know it at the time, but Oct. 2012 was the first presentation of MS - optic neuritis and a messed up sense of balance (I'm pretty sure that's the correct medical term. :-)) That was the beginning of a very long road to discover what it meant to live with MS, a road that I'm still learning how to travel.

          From what I understand, my MS has decided to attack mostly sensory nerves rather than motor nerves. The upside is that my mobility has hardly been affected at all, other than my balance still being pretty messed up. But that just gives me a good excuse to go arm in arm with my wife anytime and anywhere. :-)

          The downside is that I experience almost constant, non-stop sensory overload, especially in the senses of sight and sound. While most people are able to filter out most of the sensory input and consciously focus only on the input that they want to deal with, I've lost that ability, so I'm always conscious of all of the sensory input that impinges on my senses. It takes an enormous amount of energy to manually filter out the input that I don't need to focus on.

          If you've ever been to China, you will understand when I say that it's a constant assault on just about all of your senses. And if you don't have MS, this assault can actually sometimes be pleasant. The challenge of learning to read signs created with characters that look like pictures instead of letters; the experience of tasting food that is at times absolutely amazing; the opportunity to learn how to relate to people VERY different from yourself...and much more.

          Enter MS. Now, many of those wonderful experiences, particularly sights and sounds, suddenly become non-stop assaults on my senses. The effect is that what used to be experiences that I looked forward to have suddenly become an enormous drain on my energy. The sound of the crowd of children yelling to each other as they walk past my window on their way to school; the ever-present jackhammers and earth movers and the army of workers that are constantly building something; the constant stream of vehicles of all kinds competing for road space; the crowds of people whose normal tone of voice is what we would call yelling...and I could go on and on listing things that drain me just in being proximity to these activities.

          This past school year I've discovered that in order to have enough energy to do even an adequate job teaching, not even considering doing an excellent job, I need to cut out as many of these sensory perceptions as I can - in effect, becoming a hermit from the very culture that I've come to serve. Fortunately, the school has totally inadvertently scheduled me to teach four hours a week rather than the 16 hours that the contract allows. I can't even imagine what shape I'd be in if I were teaching 16 hours a week! I'd probably have to be carried back home every day in a stretcher!

          And so it is with a heavy heart that my wife and I have decided that this semester will be our last semester in China. I have no idea what waits for us when we move back to the U.S., but at least I'll be dealing with a culture that I'm used to, surrounded by a super-supportive family and friends who understand what's going on.

          And so the adventure called life moves into a new chapter!
          "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

          RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
          Currently following Dr. Jelinek's OMS (Overcoming MS) plan

          Comment


            #50
            Miwealia

            Yes, I too have lived in Asia and visited China. Sensory overload....understatement. Just learning to speak the Korean language was taxing enough...let alone read it...which I never was able to do. And that was before MS.

            I truly understand your difficulties, and I think you made a sensible decision. However remember, 20 years is a long time...a lot has changed in this Country. Be prepared for a little "culture shock". It will be an adventure certainly, however the medical care will most likely be a bit better.

            You will always have fond memories of your time in China. Treasure those memories as you move into the next phase of your life.

            Safe Journeys Home.
            Katie
            "Yep, I have MS, and it does have Me!"
            "My MS is a Journey for One."
            Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

            Comment


              #51
              social exhaustion and fatigue

              I agree with so many of you. If it isn't something important to me I can't expend the energy. I am too tired and people don't understand that.
              I appreciate the few people that do and go out of their way to accommodate me on my schedule based on energy.

              I too can get so wound up that a 1/2 of Xanax is what is needed to rest.
              I feel trapped and stuck inside most of the time but just keep finding reasons to be grateful so I don't stay in a constant depression of "why me".

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                #52
                avoided a party...

                Last Friday, my husband was invited to a party after work with some of his coworkers (OR staff from the local hospital). He invited me to along with him and I said I would. As the week progressed, I got more and more reluctant to go.

                I don't do well in crowds (I'm a bit shy and knew there were a lot of people I would not know). I knew I'd get tired before he was ready to leave and so I told him I'd be happier staying home with our dog. He was a bit concerned, but accepted that and went to his party. As I thought, he didn't get home till almost 10:00, so I knew I did the right thing by staying home with a good book.

                Comment


                  #53
                  Originally posted by mkwhite35 View Post
                  I'll just play the devil's advocate here...

                  Is social activities truly making you tired- or is it just an excuse?

                  And for those who say you're tired from hiding your symptoms- why hid them? Sure you might have to explain, but it will add to people's education, but probably less tiring than trying to hide something that is a part of us.

                  And a last devil advocate question to throw out there-
                  Are you trying to hide MS from everyone else- or yourself?
                  For me it's not a matter of hiding my symptoms, it's a matter of hiding my emotions and shielding others from what I am feeling, both physically and emotionally.

                  I'm sitting there, possibly in pain, dizzy, off balance, being bombarded by sights and sounds that make me want to bolt from the building to seek quiet, and yet in order not to let on and make the rest of the folks uncomfortable, I hide how I'm feeling and pretend I'm enjoying myself. I'll bet there are too many MSers (that have been at this journey for awhile) who has not experienced what I just described.

                  The other alternative is to not go, and there have been times I have opted for that, but sometimes there are commitments that must be kept...family gatherings, weddings, funerals, etc. and you must muster up enough "strength" to make it through the event.

                  Sometimes we do have a pleasant surprise and the anticipated "weirdness" or MS symptoms don't show their ugly head, and we are more than thankful for times like that. But more often it's the "bad" scene that you expected it to be (because self knowledge of limitations) and we muddle through or use the "escape plan" we pre- thought out before we even started.

                  I never hide my symptoms, but I hide how my symptoms make me feel.

                  Comment


                    #54
                    Originally posted by mkwhite35 View Post
                    I'll just play the devil's advocate here...

                    Is social activities truly making you tired- or is it just an excuse?

                    And for those who say you're tired from hiding your symptoms- why hid them? Sure you might have to explain, but it will add to people's education, but probably less tiring than trying to hide something that is a part of us.

                    And a last devil advocate question to throw out there-
                    Are you trying to hide MS from everyone else- or yourself?
                    The fact that you made this post tells me you do not suffer from this. I'm happy for you that this is not an issue for you but believe me for those of us it is an issue for it is no excuse. Also hiding symptoms is something done sub consciously, I don't try to hide things, I just find myself doing it.

                    Comment


                      #55
                      Originally posted by KatieAgain View Post
                      You will always have fond memories of your time in China. Treasure those memories as you move into the next phase of your life.
                      Thank you for your encouragement, Kate. It really means a lot to me! I really value this group!

                      Fortunately, it hasn't been a straight 20 years with no breaks. We come back to the States every summer when our students go home for their summer holiday, and from '08-'11 we lived in the U.S. so we could be near our kids during their final years of college so we could attend all the special functions of their senior years instead of hearing about it from half a world away.

                      But yeah, I understand what you mean. The U.S. isn't the same place that we left in '93 when we first went to China.

                      And you can bet that as we begin the long process of packing, tears of sorrow mix with tears of joy as we are reminded of all the friends who are attached to so much of the stuff that are going into boxes now. And the good thing in this modern world of technology is that, while we may never see them again face to face, there's always Skype!
                      "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

                      RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
                      Currently following Dr. Jelinek's OMS (Overcoming MS) plan

                      Comment


                        #56
                        This is one of the most important threads I've read in a long time.

                        It's not enough for US to know how this disease affects us, but our families and friends need to know how difficult every day can be. One minute you can be fine and the next you're so unbelievably exhausted!

                        And most of us have other health issues to pile on the mess we have going on.

                        I always try to see what other people are suffering through and think, "well at least I don't have that". But really, it doesn't help much when every part of my body is rebelling. Including my mind. That's the hardest part to deal with. The anxiety never lets up and makes social life so impossible.
                        Marti




                        The only cure for insomnia is to get more sleep.

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                          #57
                          Interesting. When I could still hide my physical symptoms, I suppose I did hide them. Mainly because I wanted to live as 'normal' a life as possible and I wanted my friends and family not to worry about me too much.

                          People were cool with me being 'tired' and needing a lot of sleep.

                          I didn't make much of a fuss, because, for me, at that time, it really wasn't that bad. Oh, for the good old days of the invisible disability.

                          Now I can't hobble out of sight on a dark night, and I can't hide that. I'm not embarrassed - it's not my fault and there's bugger-all I can do about it. And I kind of like sympathy.

                          But, there is one symptom I absolutely do hide, and I doubt anyone would want to advertise, and that would be bowel and bladder trouble.
                          When I need to go, I need to go, and by the time the message arrives from down there to up here in my brain, it is literally a race against time. I can't 'hold it', and I can't really race.
                          So the fear of basically befouling myself takes the fun out of socialising quite a bit.
                          I haven't had that happen in public. Yet.

                          The other reason I don't go out much is because it is just plain exhausting. Shopping is no longer a pleasure, but one of Dante's circles of Hell.
                          Dinner, lunch, coffee, a quiet beer at the pub? Well, I've got to get into the venue and I've got to put up with the noise. Sensory overload city, so thanks but no thanks.

                          It's a reality for me, and no excuses needed.

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                            #58
                            I agree, this *is* an important thread. As someone who has been a virtual hermit for 7 or so years, I can relate.

                            It is hard to find people who will stick with you when you rarely answer the phone (usually asleep or cannot cope with interaction), cancel plans unexpectedly for health reasons, or can't drive too far to see family/friends. I've been fortunate enough to find two.

                            I'm one lucky girl.

                            Comment


                              #59
                              Originally posted by Thinkimjob View Post
                              Shopping is no longer a pleasure, but one of Dante's circles of Hell.
                              I think that's a great analogy

                              Exactly how I felt when I was driving and able to shop, I think it's the sensory overload, plus the effort and heat (here in Florida walking across a hot asphalt parking lot is a marathon in itself.)

                              Don't know about you folks "down under" but in the US the online shopping experience has been refined to a point that it's almost all you really need. My husband makes one trip to Aldi, and one trip to the produce market, everything else I buy online, including our meat and a lot of our groceries. So I've escaped from that level of the "inferno."

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