Stupid things people have said to you/asked you

[Holly Golightly]

Well at least you got Jerry Lewis fighting for you.

Better than Jerry Springer, Uber-ninny!

I turn to this thread quite often to have a laugh when I need one. The Jerry Lewis comments get me every time!

[valeriem2220]

ahhhh yes the exercise remarks....ugh
Right after my diagnosis I began lifting weights again. I hadn't done it for a few years because I just didn't have the energy, but with the diagnosis I got I got a little bit of an attitude and said to my MS "So you think you are going to zap my strength? I'll show you!"
I was doing great for 3 months, but I did notice that from the very beginning of my lifting I was having to stretch because my muscles were tightening terribly, like how you would feel the day AFTER a good weight lifting session, tight and achey.
and when I did my stomach routine my stomach was cramping up. I just thought I was really working my body hard, I had no clue that this was my spasticity starting to rear it's ugly head.
I also noticed I needed a nap after my workouts, this seemed like the opposite of what you are supposed to feel like after a good workout.

After 3 months of doing great and being very proud of myself, I starting having spasticity horribly. It really started with a little spasm on my right side in my ribs while helping my son work on our dishwasher and within hours I was doubled over in pain and laying in bed crying and feeling like my body was having the life squeezed out of it.
After a few hours of this I almost had my son take me to the ER because I just KNEW this couldn't be normal. I was very unhappy to find out that yes it is very normal, at least normal for some of us.

I then tried to begin my weight lifting again about a week later when I was feeling better with my meds. Everytime I lifted something or bent over or even turned my body a little, spasms would kick in, plus from my rib cage to my hips were still being squeezed somewhat painfully 24/7.

I spoke to two mechanics at work about it when they asked me how my lifting was going and the response I got was "drink water"
I told informed them that I DO drink plenty of water while lifting and tried to explain again what was really happening to me, again they insisted I didn't have enough fluids and that spasms are common in lifters that need to drink more.

I have tried to explain to them multiple times throughout these months that I have not been able to lift when they try to talk me into trying again. I always get the same reply. I don't drink enough water. They really just won't listen.
I don't get upset with them, they just don't know and they are just wanting me to stay healthy, they are friends.

Water must be the cure for spasticity, I think I will try and drink a case of water every single day then, I will try anything to take away this pain....

[Katje]

I haven't told anyone about my MS in over 20 years, because of the stupid things they say and loss of friends.

[akafearless]

When water fails!

My doc said I can take a flexeril before I workout, yoga or whatever. Otherwise, I cramp up real bad after.

[Guzzy]

All of these comments used to make me angry. I don't know is it time, acceptance, that I've mellowed with age, or just Cymbalta (anti-D) working to calm me down but now I find them mostly amusing.

I mean, MS is very complex, very varied. Why should the average person understand what we go through?
Even amongst my other MS-friends we don't all have experience of the same symptoms. I don't have any loss of mobility, some of my friends who do have none of my bladder symptoms or nerve pain. And there's a lot of stupid ordinary people out there, immersed in their own worries and cares. I have got to the point that it's a huge bonus if anyone does understand a bit of this illness.

My husband listens to me a lot and he still doesn't truly understand until it's a crisis.
'Why can't you do it'? he asks, if there's a big job like unloading boxes. I have started saying 'Because I have **** MS' - profanity added for emphasis, as we do commonly in Ireland. 'Oh, yes' he says. And he knows me 24 years, and I'm 40 now.

Once my sister-in-law, whom I like a lot, hissed 'are you lame or something' when I limped slightly in church.

And the worse one is my Mother, again, love her dearly but each and every new symptom is, amazingly, something like she had or someone she knew had, just last week, and had I thought maybe it might be that? - and not an MS symptom after all. Denial is a powerful force.

[BigA]

Two things really, but first, Scooter, I wanted to comment on what you said. Yes, the MS society needs to do a better job - similar to what the Komen Society does. My entire family - including parents, brother, sister, wears the orange bracelets for me (I ordered a whole bunch of them and started handing them out). But no one knows what they mean. I've seen fundraisers at the high school for breast cancer, for seat belt use, for children's cancers, but never MS. And it aggravates me!

First instance is my sister. Oh, I saw so and so at the high school reunion, she's in a wheelchair but she's FINE. Now, sis, she's NOT, she's in a freaking wheelchair!!!! Or her I go to church with two women and they have it and they just put it all in god's hands and that's what you need to do. For one, I'm an atheist. For two, I put it all in science's hands. Oh, and your church friend who just had a 5 day inpatient stay in the hospital? No, she's not fine - she was bad enough that she had to be admitted for 5 days, plus a steroid run throughout those 5 days. She's blowing smoke up your butt so you'll leave her alone! I expect they tell her what they think she wants to hear, because she doesn't know that much about my case, and she "worries".

My mother in law at least tries to understand. But it's frustrating whenever she calls to hear, "how are you feeling?" and know that she doesn't understand. My mom (an RN) looked up everything she could when I was diagnosed. My mother in law still knows nothing except what we tell her. So, how are you feeling and "I wish I could do something for you" tends to get stale. I know she feels helpless, but not more than I do.

Science isn't doing much better

[Curious1]

Mindless comments

1) A nationally well known expert in the field of MS treatment, research & development of MS meds (who shall remain nameless - but he's the head of a well known MS Center - can't figure out how he got that far cause it wasn't due to his bedside manners) once told me that the symptoms I was having at that time "must be all in your head" because the lesions he expected to see on my lumbar spine were not visible on MRI. His partner, my doc, told me that sometimes lesions on some parts of the spinal column don't show up due to the small size of the spinal cord. I have since met two other people who that arrogant doc said the exact same comment to! Seriously?! Needless to say, I changed MS specialists and love the doc I have now.

2) A friend's husband also has MS, he has major mobility issues and uses a scooter (I am still mobile plus I work full time and I have various minor issues compared to him). His course was just like mine is currently, but a few years ago he began to nose-dive into SPMS. So now whenever I see him, he always 'warns' me that he was just like me regarding the disease and I'd better enjoy things now before I slide into SPMS like him. WHY would anyone say this to another 'MS-er'?! Now I try to avoid him, if I go out with my friend, I pick her up & wait in the car. Do I REALLY want to hear that from him?!

[jbell2435]

A new one for me is a co-worker who knows about my MS,
He asked 1st: "is the foot getting better" (I have foot drop).

Me: "no, unfortunately it's permanent".

Him a couple of weeks later: "how's that foot doing"?

Me: "fine"

Sometimes you just have to give up!

[BigA]

2) A friend's husband also has MS, he has major mobility issues and uses a scooter (I am still mobile plus I work full time and I have various minor issues compared to him). His course was just like mine is currently, but a few years ago he began to nose-dive into SPMS. So now whenever I see him, he always 'warns' me that he was just like me regarding the disease and I'd better enjoy things now before I slide into SPMS like him. WHY would anyone say this to another 'MS-er'?! Now I try to avoid him, if I go out with my friend, I pick her up & wait in the car. Do I REALLY want to hear that from him?!

There are really three possibilities:

1) He's genuinely telling you to appreciate your life, even with your current trouble because he realizes now he should have and is giving you well-intentioned advice.

2) He feels bad and wants to tell himself that he's not the only one (note: This happened to me, someone in a chair warning me that like him, I would be so in a few years)

3) A little bit of both. Who among us isn't like that sometimes? Do we really feel bad when someone we know had difficulties? Not always.

I suppose the important thing is in all cases not to say anything.

[AnnaMae7]

I haven't been dxed all that long with MS, but I have already heard some of these remarks.

I was on my scooter and got the remark, your too young to be using that thing, now get up. I couldn't even respond

I was at the store once and this child was looking at me, his mother said don't stare....the child said whats wrong with her. I smiled at the little boy and said I have MS. So my legs don't work right. The little boy told his mom what I had. She pulled him to the other side of her and said .....It may be catchy. I couldn't believe my ears and then started coughing. She couldn't get away from me fast enough.....lol.

So now when I get some people that are rude i use the "it's catchy" thing a lot....some just look at me and others laugh and say no it isn't.

[Seasha]

A new one for me is a co-worker who knows about my MS,
He asked 1st: "is the foot getting better" (I have foot drop).

Me: "no, unfortunately it's permanent".

Him a couple of weeks later: "how's that foot doing"?

Me: "fine"

Sometimes you just have to give up!

LOL - this one cracked me up!!

[Curious1]

There are really three possibilities:

1) He's genuinely telling you to appreciate your life, even with your current trouble because he realizes now he should have and is giving you well-intentioned advice.

2) He feels bad and wants to tell himself that he's not the only one (note: This happened to me, someone in a chair warning me that like him, I would be so in a few years)

3) A little bit of both. Who among us isn't like that sometimes? Do we really feel bad when someone we know had difficulties? Not always.

I suppose the important thing is in all cases not to say anything.

You may be right, I didn't consider your suggestions, maybe I should give him a break... Thanks for making me see the flip side!

[jennmarg76]

How about the response... oh just change your diet and that will cure you! I saw it on TV!

[Theo]

Salmon oil!

One of my co-worker’s claim's all I need to do is eat Salmon every day and your M.S. goes away, claims she has M.S. hate to tell him if she has it could just be in a long remission. Asked when she was diagnosed was the late 60’s so mmmmm is all I could say! Even family can drive you nuts too have been told (well their son was told he has M.S. so the now rub a home mixture of oils every day over his spin and he is curd! Yea sure he is that’s why he lives a retirement home when he’s in his 30’s.
31 years of M.S. I think I have heard them all people should think before they open their mouths!
If these miracle cures worked do they not think the entire world would know, so before you tell me to hang 9 chickens around my front door on a full moon on the 7th day of the 7th month while chanting BOOM CHUCALUCA consider this the cure for ignorance farther away than the cure for M.S.

[Holly Golightly]

co-workers seem to say the most asinine things

When expressing my concern over walking home from work during a downpour on slippery wet sidewalks, my boss said, "Oh, just suck it up! You only live a few blocks away."