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

[nrtackett]

This really isn't a 'stupid' thing, but a rather funny thing that was said to me.

This was said by my Neurologist right after my recent dx. He's a great doc, by the way, we share a sense of humor.

"Well, at least the few lesions you have aren't located in the 'prime real estate' areas of your brain."

I thought: "Dude, that's like over half my brain!"

Blessings to all!

[Nicolemarie1313]

I'm sick of hearing well you prob don't have ms because you look fine. A lot of signs and symptoms mimic other things. If you have ms you prob wouldn't want to even get up and wash and dry your hair and all you'd be to tired. My response really should I curl up and die on the couch because I feel like crap I should look the part too!

[golfwidow]

Someone said to me today....oh I heard you had some sort of illness......i said yes, and in the silence that followed ....I caved and said.. I have MS............oh, they said, well thats nothing, it could be worse. I was speechless and just said, oh, need to go, nice to see you...
But I am thinking.....
Well, yes, it could be worse, and I physically do not look like anything is wrong with me, but they have no clue about the constant tingling on my back, or the unrelenting fatigue that hits me, or the leg that is numb, or the foot that can trip me on the flattest surface, or the shots I give myself everyother day that make me feel like I have the flu ( whether I self-medicate or not) or the bladder issues, or the times when I feel like my whole body is tilting to one side, or the nerve pain down my right arm, etc..........
Yes, it could be worse, so I need to just get over it............sorry, just had to vent on that !!!
I know others have it a lot worse, it just struck me as a cold statement.....a little low on the compassion scale.....and she was the one probing for info.....dumb me for telling her !!!!
Lesson learned !!!
Hello to all and

[smartypants]

The week I was dx, I told people I knew. I can't tell you how many people said "Montel Williams has MS, and he smokes weed." I started beating them to the punch and saying yeah, I know and he smokes weed. The other one was a guy called to tell me he was sorry to hear it and asked how long I had to live.

[kristinamc03]

I liked how when I had my onset with Optic Neuritis, I would tell people that my vision might not fully return after the steroids. I received multiple replies of "Well, you could just get lasik surgery." Even after I said, that wouldn't work, it's the optic nerve that affected. They would reply, "You should still look into it."

[mrsl0819]

Originally Posted by Spydre

My sister, lovely woman that she is, struck again. She means well, really, but doesn't realize how she sounds to someone who actually has MS.

She evidently has two church friends who have MS. One was recently hospitalized for what I can only guess was a flare for 5 days - sis said she was in the hospital for treatment, and it was rough on her. As I couldn't find any info on a treatment in this country that requires a five day hospitalization, again, I'm assuming this was a bad flare. Sis said after her hospitalization she's feeling much better....this is a woman that has two toddlers and is a school teacher and she's "just fine", now. She has energy (I'm guessing from steroids?) and keep up with her kids....I didn't say anything to that because at the time I was trying to find what this miracle treatment could be.

I love my sister, she's just in the dark and chooses to remain so.

I was dx this past June and was actually hospitalized for 5 days. I received a steroid treatment to help relieve the symptoms I was having. My neuro wanted to have me do this since it was my first episode and it came on pretty strong (definitely not recommended for every episode). The steroids are supposed to help reduce inflammation in the brain and help speed up the recovery from the episode. With this treatment you can choose to do it at home and have a nurse come to your house, or you can just stay in the hospital. I chose the hospital because one, we were actually moving the day after I went into the hospital and two, it would take a few days to schedule the home nurse and my doctor wanted to get me in asap. anyways... just wanted to let ya know that the 5 day treatment does exist

i've had a few unusual things said to me. when i was having my first episode i had a lot of symptoms including drop foot, numbness and tingling, and speech problems. Another symptom I had was double vision and dizziness. when i told a friend how hard it has been, driving and even just walking. then he says, "WELCOME TO MY WORLD!!!! my eyesight is so bad!!" and he went on and on about how he knows exactly what i'm going through. ummm... don't think so! haha

[theofficemommie]

I was recently dx'd and someone in my BF's family shook their head and said honey thats one of the diseases that doctors tell you that you have when they really don't any idea what is wrong with you. Then they said that they think that I just over react to little things that aren't really wrong with me and maybe I should talk to someone about that. um... I guess I didn't realize that I could just make up lesions. Silly me!

[LisaDG]

Most funny..well, not really funny but kinda! My mother...shortly after diagnosis.. "well, maybe if you didn't worry so much about taking care of others your nervous system would have lost it's coating"! LOL! God bless her...she tries.

[pumpkin32]

My husband seems to be the worst at putting his two cents in! last night he told me to quit reading this sight/ posts and start telling myself i do not have ms! I'm all for having a great mindset but he must be clueless. i guess i shouldn't expect much better seeing his mother says i don't look too ill.

[LisaDG]

Grrr... I know what you mean! Well meaning (I like to think) people have told me to stay away from these sites as well because it can cause me to become depressed and dwell on my "condition". I just have to laugh. I often say nothing about how I am feeling to anyone, despite them asking. It saves them from saying something hurtful to me and saves me from having to explain 1001 times what it all means. If I have to say "I know you are tired to but this type of exhaustion is a bit different" one more time I am gonna explode! :-)

[Caterina_P]

Yes, most people tend to view the unpleasantries of life from a distance, as if almost they're watching TV or a movie they can leave and forget once they turn off the switch. We need to learn empathy more and not simpering sympathy.

[chucklebug]

I went to the supermarket on the way home from work a couple weeks ago. When I was paying, the checker, whom I'd seen before, said "Haven't seen you in a while. What's up with the cane?" (I didn't realize we were buddies.) I told him I needed a little help walking. He asks me why. So I told him I have MS. He said, "Oh, MS! What you need to do is eat beans! Science proves they are full of RNA and DNA." I was kind of stunned, because that doesn't even make sense. As a science teacher, my natural instinct was to politely explain to him that that was nonsense, but come on, there were people in line. Instead, I think I found the perfect response: I said, "I like beans."

He smiled and shut up, so mission accomplished!

It amazes me that people hear you are living with a chronic disease, yet assume you were completely unaware that all you needed was something like more sleep or beans!

My first rule of good living is this: When I don't know what I'm talking about, I SHUT MY MOUTH.

[Sylvielynn]

Originally Posted by Seasha

THEM: MS - Oh really? Well, I have a cousin...or sister-in-law...or friend of a friend....or neighbor's ex-wife....or past co-worker's mother in law...or aunt's brother-in-law's cousin....or dentist's ex-secretary's sister...or...or............. who have MS too!

ME: (blank look, saying nothing, but thinking - here we go again)

That drives me crazy. Even my brother did it " well my brother in law has it and he lost weight eats healthy and exercises everyday and he's doing fine that's what you should do" thanks my brother for the support.... Everyone knows someone. I also hate the comparison people make when I say " xyz " is happening whatever it may be their response is " iknow how you feel" or " that happens to me too". Really guys???? Huh Thanks

[seeuinct]

Yep....I was told 'You should drink carrot juice because I have a cousin who's dr. told her that if she drinks enough carrot juice the MS will disappear.'
Apparently this 'cousin's' skin is literally orange.
Would I rather be orange or have MS? hmmmm....

[Arthur Spooner]

I have only just been diagnosed and have had minimal symptoms, so I definitely have not experienced the terrible symptoms that most people on here have.

What upsets me, is how easily I can see myself in the insensitive people that are dismissive of your illness. I have never said anything like that, but it might be just because the situation and opportunity never arose.

I am not sure why people behave like that. Perhaps it is a
way of keeping a distance, not allowing an intimacy to occur. There are so many possible reasons for this uncompassionate and insensitive behavior.

I do know that I don't want to see myself in them again.