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Old 09-01-2013, 12:15 PM #1
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Default I have to bite my tongue...

Some days everything anybody says bugs me, I'll admit it. But most of the time, I can let things go. Hey, we were all there once, not "getting it" and saying stupid things. Or if not stupid, at least well-intentioned but hurtful or annoying. I've certainly said my share. Maybe more than my share.

That's why I bite my tongue. I'm not given to snappy comebacks anyway (well, maybe in my mind...) but there is one "helpful" comment that tests my patience.

That's when somebody says some version of, "Well, NONE of us knows what the next day will bring. ANY of us could get hit by a bus."

Well, no kidding. And I KNOW the "guilty" parties are sincerely just trying to help me avoid a fatalistic, gloom-and-doom trajectory. Trying to make me feel better.

But I grew up with it always in the back of my family's collective mind that tomorrow could be the day that Dad went blind or couldn't get out of bed. It never happened--he had MS for over four decades and never had that big, incapacitating relapse.

Don't get me wrong--we had a happy life, lots of laughter, no constant woe-is-we atmosphere. But we knew what could, and often did, happen to people with MS. We knew the odds were not in our favor. It was always there.

I very seldom talk (to non-MSers) about having that same thing always in the back of my mind (and sometimes in the front). My leg feels funny--will it be totally numb in the morning? My eye feels weird--could this be ON? Even though my disease progression has been very gradual thus far, could tomorrow be "the Day"?

No, I don't dwell on it. Totally unhealthy. And it's obviously true that man knows not his time--something bad could happen suddenly to anyone, not just someone with MS. The person ahead of me in line could get hit by a bus. The person sitting next to me in church might have a time bomb (brain tumor, blocked artery, DVT) and not know it.

The thing is, I know it. I KNOW it. I know it all the time. And sometimes I feel compelled to share that with somebody. When I hear, "Hey, I could get hit by a bus tomorrow...", it feels dismissive to me. I know that's not intended, I know it's (usually) prompted by a pure motive, but you know what? It pushes my buttons. And I have to bite my tongue.
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Old 09-01-2013, 02:26 PM #2
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Hey B2Y ... totally agree!

I've 'learned' since the MS dx - to just 'go away' ... not argue or 'correct' someone on my pain or feelings and being TOLD what I have from friends (?) ... ya, those friends ...

yes, I spend ALOT of time alone - being single and no family was MY choice and I'm OKAY with it ... and very, VERY independent ... I do not have to go and live in someone's basement because I could be in a wheelchair tomorrow ... etc - like you said!

where do I get my energy? cutting alot of 'those' peeps from my life ... and many were cousins, relatives, and so-called friends ...

all my life - people told me I was stupid or what I liked was stupid ... well, I've done alot in my life - in a way to say that I can do anything I want ... and if you don't like it ... there's the door, don't let it hit you in the backside!

I do NOT have to live in an assisted living center ... I am below the poverty line ... and guess what? I'm debt-free, my bills are paid, I support the roof (and own it, too) over my head, I have food to eat, and gas in my car ... I'm so much happier since the MS ... sounds weird, huh? and I like who I am TODAY ...

bring on tomorrow ... and we have Koala to already tell us that it's here!!
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Old 09-01-2013, 02:39 PM #3
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Yes, blessings, I have holes in my tongue to prove it.
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Old 09-03-2013, 12:45 PM #4
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Thanks for sharing that Blessings. I too agree...it does sound dissmissive and that can be annoying when one just needs to debrief.

Vonn, I agree with you too as I am in a similar situation to yours. I was widowed 8 years ago and we chose to not have children; but I'm independant and only have a mortgage which should be paid off in the next ten years. I very much enjoy my humble life as it is and I also limit who I associate with and when.

Those who repeatedly use dissmissive statements and/or who seem incapable of understanding and accepting others' limitations with compassion are not a part of my life to any great degree; as I think that it is healthier to make our social choices wisely and to do what makes us happy .

With love, Erika
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Old 09-05-2013, 11:33 AM #5
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I often feel that way - but - I think a lot of times people say things (like getting hit by a bus, etc) simply because:

they are trying to remind us to live each day for all it's worth and/or
because they don't know what to say, but feel they must respond.

Somedays I wish we had a pause button like on old tv shows, where the world would temporarily freeze and we could blurt out anything to blow off steam, then hit play after we got it out of our system.
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Last edited by jprinz99; 09-05-2013 at 11:34 AM. Reason: spelling
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Old 09-05-2013, 01:11 PM #6
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Jane, think of all the wars we could have prevented, if we had
only had a pause button.
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Old 09-05-2013, 03:31 PM #7
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I hear ya! and also try to be kind spirited when I know their intentions are good but...

I would guess our chances of getting hit by a bus tomorrow are way less than the chances of us waking up blind or crippled.
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Old 09-05-2013, 04:45 PM #8
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I have a neighbor who tells me my MS is great compared to her brother who is in a wc from it.
So is she trying to invalidate my symptoms, which are invisible? Or trying to make me feel that I am lucky to have such mild symptoms?

I don't think she is trying to dismiss my problems, just trying to help me understand it could be worse.

Whatever
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