can I have input with regard to remarks from non msers?

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can I have input with regard to remarks from non msers?

Postby msmything » Sun Aug 07, 2011 1:45 am

So, I got to thinking the other day, that certain people have a permanent case of foot in mouth. You know the stuff, well my cousin has it sooo much worse than you she's in a wheelchair for 10 years. Come to find out cousin sisie is a 3 pack a day smoker, weighs 400 lbs, and was heading for the wheelchair by age 21.
Or the 'don't worry, things will get better, they always do"

Can I have examples that include your internal reaction to these types of remarks? Do you have any examples of people that said the right thing?

I'm gonna do a paper in a psych class on this, and want some more,,ALOT more real life flavor. Even to the types of thigs like I can walk, not really well, and NEVER alone, so i won't take handicapped spots. I'm walking into Walgreens the other day, and here's a young pup with 2 kids, unloading the kids and their piles of crap, nice and leisurely in the handicapped spot..without so much as a fake placard in the window...i was a bit peeved.

What gets you going..mostly in the 'kind remark' things though..

Thanks so much! I look forward to the no doubt interesting replies....
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Postby daverestonvirginia » Mon Aug 08, 2011 10:46 am

I have found that how people respond to finding out I have MS seems to be strongly driven by their experiences with and knowledge of MS. If a person knows someone who is having a lot of trouble with MS they can and most often show a great deal of concern for me. On the other hand if they know someone who has not been affected by MS they often give me words of encouragement. This makes sense, as when I first learned I had MS all I could think about was my Uncle who had died from MS. It took me a decent amount of time to research MS and development a more opportunistic point of view. So I would say as is most things in life knowledge is it the key.
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Postby civickiller » Mon Aug 08, 2011 3:51 pm

i dont think they necessarily need to know someone with MS. I think its how nice and caring people are. I`ve never had a problem with help from people with doors, getting thing off high shelves. Majority of Hawaii's people arent like some mainland people where they only care about themselves. I guess its the culture.

Ive parked in handicap stalls even though im in a wheelchair, i can roll, but its the space where i can fully open my door with space. sure i can park in a far away stall where theres no cars but then i gotta wheel myself across the parking lot(dangerous) and theres hawaii's heat.
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Postby msmything » Mon Aug 08, 2011 4:27 pm

I didn't mean to get on people in the handicapped stalls, I was just pointing that out because I was kind of taken aback by my reaction. Sometimes I have an aggressive internal reaction toward people that over do with 'you must not have it bad' or the like, or super happy face stuff when I'm, on the inside, feeling like junk. I know that people are being as nice as they can..I Do know that and believe it in my heart. It's just that sometimes I'm surprized at my internal response when I'm feeling weak I guess.
Is this emotional lability? Maybe I'm afraid I'm going to respond with an answer that I wouldn't be proud of inretrospect. Like 'you don't know how hard it is to walk and not fall, you don't know how much I hurt, etc'

I suppose I'm looking for a touchstone to see if I'm some sort of a surly curmudgeon that shouldn't leave the house.....some days.
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Postby itaska21 » Mon Aug 08, 2011 5:55 pm

I don't feel guilty about the anger that I feel inside toward people who disregard me as a hypochondriac, or a weak person. And when I see some loser parking in a handicapped parking spot illegally, I've been known to throw out the occasional remark to put them in their place. There's a significant amount of ignorance in regards to M.S. I realize that this anger is more detrimental to my emotional well-being than theirs, but I have'nt really found a way to cope with it in a way that's healthy for me. It's been 2yrs. now, and I'm hoping that time is the key to overcoming these feelings. :roll:
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Postby msmything » Mon Aug 08, 2011 7:52 pm

Yeah, I guess it is a part of being pissed off that people think that just because I can mostly walk, doesn't mean that this thing isn't, and hasn't, destroyed my life...I can't work, can barely think. It's impossible to learn or remember new stuff, I forget even important conversations. Even to the point of forgetting I spoke to the person.

Even people who should know better think I'm exaggerating when spasms keep me from using my hands (I used to draw blood), or remembering the 2nd step in the simplest of sequences. (never mind a 3rd).

I think what brought this on was I was reading an article about how annoying it can be when people force the 'be positive' doctrine down sick people's throats...never considering that it's OK to be negative and angry now and then..like at stupid people
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Postby itaska21 » Mon Aug 08, 2011 8:33 pm

I'm so happy you started this thread. We all need a place to let it all go, and know that we won't be judged. You know, my hands are my life. I'm also in the healthcare field. I'm a Dental Hygienist. I sit over patients all day using various small instruments to remove hard deposits from their teeth. I see about 7 per day on the average. A big part of my job is patient education, and over the last month my pronunciation and sentence sequencing has been very inconsistent. And I see the looks on their faces and feel the need to explain myself. But chances are, a decent amount of them would just think i'm an airhead or a pill-popper. I understand your dilemma with being able to draw blood. These types of skills require a steady hand. :roll: We just have to keep pushing forward in the fight for the respect and support we all need and desire. We're stronger people in a lot of ways just because of this disease.
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Postby msmything » Tue Aug 09, 2011 5:25 am

Yes, when I started this, there were basically no replies, and I thought 'oh geez, I'm being a b**ch again."

The most fabulous job I ever had, and the job I thought would be my retirement job was teaching a public speaking/presentation skills class to physicians on behalf of pharmaceutical companies.
While that 'big money' is gone, I can do it elsewhere, but I'm terrified to be up in front of a room of professionals, and lose my thread. Though I always had notes wih me as a security blanket, I NEVER used them. My fear is that no one wwould feel THAT bad about me going for notes, I would be sloppy doing so because I'd have forgatten where I was, so wouldn't know where to look to regain my place...FEAR. and because part of the message is to be so familiar with your material you're not reading from Power Point or notes, it kinda takes the steam out of that point huh?

Anyway, my salvation may yet come in that I learned the program in the mid 90s or so, so it's in there in th long term part, it's just the retrieval. And the part that's changed is the 1st 15 minutes or so. YIKES, really changed. The opening is the part where you're testing the climate of the room, and capturing them, so if you screw it up the next 1.5 hours is torture.

It scares me so much that I am too lazy to get on the project going. Roman Candle up the arse perhaps.
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Postby itaska21 » Tue Aug 09, 2011 7:07 am

I feel like my life is on hold. I used to be so confident in my career as a hygienist. I really want to put an end to my pity party and get back in the game, but i'm afraid of failing. I know I can't take another hit to my self-esteem. How can you move forward with so much uncertainty in your future with this disease? :cry:
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Postby Wonderfulworld » Tue Aug 09, 2011 12:14 pm

I was thinking about this and yes I've had some poor reactions from people - I particularly dislike the 'awwww' pity-face some people put on. I am matter-of-fact about my illness, but I know they feel they are sympathising with me for something they feel is awful. As this is a lifelong illness, I feel they don't grasp I'm normal and I have a life to live, I just have MS. I don't take offence to it though, it just irritates me a little.

What does really upset me is members of my family or extended family who think I am putting too much of an emphasis on symptoms like memory loss or brain-fog. When I hear, 'Aw listen I did exactly the same thing yesterday..' it does upset me, I feel that they are suggesting I am exaggerating the impact MS has on me. I spend my life trying to hide it to be honest, but sometimes I just want to share that it really pisses me off with a close family member. I don't like getting a 'we all get that' as a response and it makes me think if my own [/i]familycan think like this, other people must think I am completely hypochondriachal.
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Postby msmything » Tue Aug 09, 2011 3:07 pm

YES, so I'll just mention something off-hand, like OOPS my right toes are in a complete right angle to my foot right now inside my shoe, it's so wierd!!! And I'm laughing about it, and I have 1 daughter that laughs with me...the other (who's getting her PhD in pschology, what does that say) gives me a look like I just farted in public or something.
She has told me that it feels like every conversation comes down to 'my MS'. What? It's funny to have your toes have a life of their own..can you get that???

Yes, and if I run stuff by you about how I feel, maybe it's because I respect the amount of education you have in your field silly! Not because that's all I want to talk about.

AND sorry, I lost my job because of this crapola, so my world has gotten smaller...........
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Postby Needfulthings » Thu Aug 11, 2011 3:15 am

OMG yes yes yes, 10 years of disease and counting and now MS????? I have had comments from my own father that he feels some of my symptoms and just deals with it and I want to scream that he has NO idea what it really feels like to lose everything a college education gone cant use it nobody wants to hire someone with no more then 1 hour of energy.

or the best one: You look great!!!!!!!!!!! and I reply: Thank you. and they sigh in relief im so happy your so much better you sound so good and I think what the hell are they talking about? I look great so im cured?????

Disabled parking is my biggest problem in life. I am still able to walk but I am so weak and in pain not to mention the balance problems that I cannot walk for long distances but my family still needs to eat I have a card and car placard but I am constantly accused of misusing handicapped parking privileges and I wonder should I have not put makeup on? should I be 400 pounds? should I not wear current fashions what exactly does "sick" look like? I walk with a cane and apparently that is not good enough for the healthy people in this world, I cannot help that I dont fit the mainstream criteria for needing to park in handicapped parking im only 44 years old and none of us knows what someone looks like when they are ill..

Im sure alot of you have felt this way!!!

Thank you for starting this topic it made me feel great to vent!!!!
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Postby msmything » Thu Aug 11, 2011 6:18 am

Yes, Wonderful World....I HATE the fast 'comebacks' when I share things with 'my significant other', no one can piss me off like that man. EVERY single time I remark about some symptom or other that is absolutely specific to MS, like choking on my food for a couple of days in a row, I get "yeah, I was eating thus and such when I was 10 years old, and.."

I have, on occasion, stopped him cold and said no, this is me, I'm talking right now...it does make you feel like clamming up. Actually I have noticed that I don't initiate idle conversation as much anymore.

Is it MS making me tired, or the people around me
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Postby kibibikel » Thu Aug 11, 2011 6:36 am

I have only been diagnosed since April, so I don't have a lot of experience with people and how they react or what they say, but there are definetly some things that have got under my skin a little. I think the biggest one is when I hear from people that they know so and so who has had MS for x amount of years and they are perfectly fine and there's nothing wrong with them. I actually had someone follow that with so suck it up its not that bad. All I could think about was are you freaking kidding me?!? Its so aggravating that some people think that everyone with MS is the same. So frustrating!
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Postby msmything » Thu Aug 11, 2011 2:28 pm

Exactly Kibi, that's the thing, if you're not in a wheelchair, you're not sick, don't fit their definition...

Anyway, to those who are following this, what about the cheery stuff, like keep your chin up, you'll be fine! No One feels cheery every day...

Followed by something they saw on Inside Edition...
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