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Let's have some fun; stupid thing someone has said about dealing with MS

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    #46
    Originally posted by twisterred View Post
    When I had to go from full time to part time work, I remember walking past a fellow coworker who looked up at me and said, "I wish I could go home at 2:00 p.m., too."

    I flatly said "I wish I could stay here and work."
    I went on STD in Mar2003 and never got back to work. It is amazing that I miss it still. Being retired at age 46 might be fun for some But I know you all understand.

    Steve

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      #47
      ugh...

      I have not been dx'd yet...but that makes comments stupider I think...
      "if your not "officially" diagnosed, why arent you working?"

      or

      "you cant be THAT sick if they havent found what it is yet..."

      "pick up your feet, you look like quasi modo! you really need to exercise more.."
      (this last one was when my rt leg quit working while walking thru the woods, which happens occasionally)

      "they think its MS? oh, thats big deal, my aunt has it and she working and doing great!want her number? she'll tell you how to get better.."

      my fav..."you were fine yesturday, whats your problem today?"

      "try crosswords to make your brain work, that'll help your memory problems!"

      "you had a strole?at 38? couldnt have, your too young, they read it wrong, besides, even if you did, it must have been a small one!"

      *sigh*
      and this was all from friends and family...I guess to make me feel better???but looking at it like this does make it easier...lol..thanks!
      your horse must be fast cuz' you were haulin' ***** when I passed you!!!!

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        #48
        Um, lets see - pretty much anything that comes out when they open their mouths...ha ha...Nah, it's not THAT bad. But there are a lot of things I do get tired and frustrated to hear. Reading the posts, I see I'm not alone!

        The #1 has to be 'Well, you don't look sick! You look great!' I know it's mostly said to be nice but it hits the nerve of already feeling like people don't believe I'm really sick because I don't 'look sick'. And in my case, I don't use a wheelchair or walking aide, either. I just waddle when I walk. But I'm half Italian so it's not so far off from how I walked before.

        Then there's the trying to relate angle - when I talk about fatigue - they go on about how they get so tired, too but just keep pushing through! As if to say, I'm just being lazy and not trying hard enough.

        A lot of comments fit into the above - ones that insinuate they experience the 'same things' but just 'ignore them' or 'keep going anyway' thus implying that I'm really capable but just choosing to be lazy or whimping out.

        Then there's the FIXERS! 'Have you tried...?' They go on and on about everything under the sun. 'If you just did this or took that you'd feel much better!' I'm not against realistic suggestions about remedies I could benefit from - but there is no miracle cure where BING, BANG, BOOM - my MS is cured!

        Again - those comments hit the nerve implying I'm not doing something I should be and that's why I'm sick.

        Positive thinking! YES - I DO believe in it! I even believe it can and does impact our health in both positive & negative ways. Just look at how mental and emotional stress can create all kinds of serious and real health problems! But just simply being positive, reducing stress and 'willing myself' to be well again isn't going to do the trick. This disease is very real - it's NOT IN OUR HEADS! Well, it IS...literally...in the form of lesions.

        Then there's the person they know who has MS, too - but amazingly, that person is doing so much better than I am! THEY are working full time still, THEY just finished a 10k marathon, THEY have 6 kids, 3 cats, 2 dogs, a 2 story house on 10 acres that they take care of all by themselves, plus volunteering 10hrs a week at 5 different charities...blah, blah, blah. You get the point.

        It doesn't get to me much as it sounds like - I'm just taking the moment to be blunt and vent a little! It's more a matter of how many times I hear the same things - often times from the same people! - over and over again. The personal experiences and educational info & facts I share with them seems to go in one ear and right out the other. I don't know if it's because they forget or they just don't care. Sometimes I think they just want to say their peace and walk away feeling better about themselves for giving me some life saving advice that I've somehow overlooked all this time!

        What would be nice is if people just listened and were open and willing to learn. I'd love for them to not try and fix me, to not try and 'one up' me when I share what I'm going through - especially since they ASKED me. I'd love for them not to say things that make it sound like I'm not doing the right things, not trying hard enough or not keeping a positive enough outlook. As if I WANT to be sick and am just choosing not to get out of bed, choosing not to shower, choosing not to spend time with my family & friends, choosing not to do all the things I really love doing...

        I was once healthy, too - I know what normal tired feels like, I know what normal headaches feel like, I know what it was like to get enough sleep and wake up rested or being able to push a little harder to keep going when I had a cold or stayed up all night. It's not the same - it's not normal. Disease induced problems don't feel the same and don't respond the same. Normal remedies and every day ways of coping don't do the trick.

        I don't know why people can understand the reality of and empathize with those who have a disease like cancer. Most wouldn't dare say half the things they do to us to someone in that situation. But when it comes to MS, they just don't seem to 'get' that it's a real and serious, life changing disease. It's not some simple thing we can just choose to ignore and live life pretending nothing is wrong. I swear, it's like MS is an illegitimate disease! It must be because we all look so darn good and they're just jealous!!!

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          #49
          I'm lovin this thread!

          Stupidist thing was co-worker with a sick aunt that had MS and was bedridden. Co-worker told how she would go with her mom and change her catheter.

          wtf? I had been dx only 2 years at that point, still working full time, had minimal symptoms.

          I could be bedridden one day and people helping me with basic bodily functions?
          thanks for sharing that, Miss D!!!

          (Need to have a best thing thread, too. not everyone a knucklehead)

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            #50
            I remember writing something about the exact things Im reading here, one of my most memorable responses that I got was from someone with MS who said - "you should be happy someone is asking you about MS - dont be so sensitive!"
            To each his own, just because you decide to "bless me" with your drivel will NEVER mean I am required to grin and bear it!
            We don't receive wisdom; we must discover it for ourselves after a journey that no one can take for us or spare us.

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              #51
              lol..

              Then lets not forget the ones that want to have a pissing contest with symptoms, you know...the "one-uppers"..

              mention ONE thing about the painful stiff joints..and.."man, I dont know how I get out of bed some days, my bones ache so bad!" or "you think you have it bad? you should see me after typing for hours at work!and man, doe smy back KILL me after!"

              mention headaches "I had the WORST migraine the other day, I couldnt see straight, maybe I should go get checked out too!"

              when I told one close family member about the MS or Lupus possibility and the stroke, the reply was "Well, MY dr thinks I fractured my back...in THREE places..." (and she went on to describe IN DETAIL her problems....)(umm, turns out theres no fractures..or anything..)

              I would LOVE to tell them I am not interested in "competing"...lol...so now, when they ask how I feel, I respond "with my hands"...and leave it at that!!
              your horse must be fast cuz' you were haulin' ***** when I passed you!!!!

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                #52
                When a doc said "Don't worry, the state will take care of you". Um, really? I've got turned down for every medical aid program and financial assistance program I've applied for over the past 6 months. The only help I've been getting has been from Biogen-Idec.

                Also when my insurance said "You have a pre-existing condition, so your Avonex will be covered". Really? Shouldn't that be the reverse?

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                  #53
                  You won't need a wheelchair for at least 20 to 30 years!

                  That is what my Neuro told me within 5 minutes of laying down the dx of MS on me. And he said this with a smile and tone that implied he was giving me the most wonderful news!!

                  I was in shock - I didn't really know much about MS but now he's basically saying I WILL be in a wheelchair one day...and should be thrilled it's not until many years from now. But I calculated the top end of 30 years and realized I'd be younger than my dad was at the time and he was still going out dancing two or three times a week.

                  I think my doctor was disapointed I didn't see it as the great news he did!

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                    #54
                    My husband came thru and asked what I was reading so I gave him the highlights of this thread about the insinuations that we could do more and get over it. He replied, "you could, you can stop having MS." He the laughed and edged just out of reach of the incoming poke. When I said that was a horrible this to say he replied, so is implying you can do more than your best. He may be a raving jerk but he is my raving jerk and I love him and the way he sees things sometimes.

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                      #55
                      Handwritten in Christmas card, "be thankful that you have your health" I am thankful that I am a very forgiving person and won't tell their grown children what they wrote to me

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                        #56
                        i mention multiple sclerosis to my boyfriend, which he knows nothing about and he goes 'well atleast its not as bad as my back, i have scoliosis.' mhm

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                          #57
                          The best ever

                          Originally posted by Marie12 View Post
                          Handwritten in Christmas card, "be thankful that you have your health" I am thankful that I am a very forgiving person and won't tell their grown children what they wrote to me
                          Ok I almost fell off the chair this made me laugh so hard. Did you send them a medical sympathy card in return that would have been too funny. Especially if you wrote on it that you were so sorry they had been diagnosed with MS.lmao Ok sorry but that is funny.... hahaha
                          Time is but a name we give to the passing moments of life, it is these moments that hold all the meaning.

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                            #58
                            I was actually told yesterday that its the wrath of god punishing me??????

                            Well my God doesnt work like that- he may test me but he's loving and kind xxxx

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                              #59
                              Originally posted by MrsChip View Post
                              I was actually told yesterday that its the wrath of god punishing me??????

                              Well my God doesn't work like that- he may test me but he's loving and kind xxxx
                              if that's true, I might wonder aloud how folks like that are still walking around then....

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                                #60
                                From a "friend" I was driving to the grocery store--"You're so lucky you have handicapped plates. Now I don't have to walk so far."
                                Peg

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