How many of you fibbed about your MS? - My MSAA Community

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How many of you fibbed about your MS?

Jesmcd2 profile image
β€’26 Replies

And said you were doing great this holiday? Or good? Or like me, changed the subject to aaannyythingggg but MS! 🀣😭🀣

Or, did you talk openly about it? Are you doing Great? Good? Not so good? On a scale of 1 to 10 ?

Ya know I always wonder about that pain scale.πŸ€” I mean I gave birth! That is a 10!!! So please explain that to me! Ok,

So? How are you?


26 Replies

Anymore I openly tell how I’m feeling and what’s going on. Honestly it not what people like to hear and most don’t have response? Ya, could be better, but it’s not. πŸ‘πŸ™πŸ€­ Ken 🐾🐾

My nephew-in-law, who is older than I and is a jokester said to me, "Here, take the recliner. You need it more than me" as a joke. As I took the chair, I said to him, " You have no idea how true that is!"

So I guess you could say I was truthful!

i did tell my daughter that i am so much better with this new med...the last time i told her it was chemo she freaked out on me this time when she brought it up i said not it's not ...but i am doing better than before actually all summer was great being outside working in the yard ...but now with the cold and munchies and watching tv this is the pits just getting fatter something i don't need ..more weight ...i have gained a lot of weight since being dx all to my change in eating habits...can't blame anyone ...i use to never eat junk food like i do now ...most of it i didn't even like before and other things i just love and had never ate before is terrible getting so fat but i can't quit eating the sweets ...that is my downfall...other wise i am great feeling good love to sew when i can ...not working is also a downfall ...but this is life so you asked ...have a wonderful day filled with love and happiness....

β€œDon’t you look well, you look great” what do people expect, do they want to see us looking grey, pale, as though we are dying? If they only knew. To which I just smile and say thank you because to tell them how you feel would bore the socks off them 🀣 πŸ˜‚

I’ve never wanted to be one of those bitter people who just can’t seem to be pleased. I do seem to feel sometimes as though some people are dismissive, and others are patronizing. I don’t want become merely a diagnosis, but I do hope for some understanding. I want to invited, but I hope people understand when I can’t show up. I am beginning to learn which people really want to know how tough it is, and which are just making polite conversation when they ask how I am.

Jes, I gave birth to 8 kids, and I would give birth to 80 more if it would take my pain away! When they ask me on a scale of 1 to 10 what is your pain, I always say 25. Then the nurse says, no really. And I once again say 25, no kidding! They do not make the scale high enough. Kellly xx

My standard answer is "I'm fine." Even though I'm not. When i said that I was really tired the other day, 2 people said they get tired to and were really dismissive and patronizing. So I printed off a copy of the MS fatigue description that someone here had posted awhile back. I being a technical person added some more detail to it and then translated it to Italian and gave them a copy of it. πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚ You should have seen their eyes bulge out of their heads!!!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Peruzzot

Smart move! I think we need a pocket size list with explainations in it!πŸ€£πŸ€—πŸ’•πŸŒ 

I don't have to talk about it,you can see it.then they don't want to ask or get into ms conversation.I think it makes people uncomfortable,they really don't want to talk about it,other than pat answers."you'll get better,there is a new treatment.etc"

Even before MS I just said I'm good .

I' keeping it simple and keeping it moving

Now that it's been 5 years I don't get asked much as they already know the answer. In the beginning I would often be asked if I was getting better and would have to explain I will never be better and could only hope to get worse as slow as possible.

I will sometimes let people know when the fatigue is really bad that day but I usually just deal with it. Most people have their own problems they are dealing with and none of us complain about our our problems unless it is a really bad day.

My husband and son know I will eventually need help getting around and we will talk about how cool my scooter or motorized wheelchair will be. I think it helps men to think about how to fix a problem and not just empathize.

My husband rarely complains about his aches and pains anymore and just takes Ibuprofen and sits down for a while. He used to complain a lot but now that he knows what I deal with everyday without a peep he has stopped.

I hope everyone has the best year in 2020 that is possible given what we got 😁πŸ₯‚

I just lie and say I'm fine!

FINE is defined as F_ _ ked up, Insecure, Neurotic, Emotional. πŸ€ͺ😜😝😁

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Kenu

Perfect! πŸ€£πŸ€—πŸ’•πŸŒ 

Peruzzot profile image
Peruzzot in reply to Kenu

YUP!! That's me! My standard answer πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜ŽπŸ™ƒπŸ™ƒπŸ™ƒ

2littletime profile image
2littletime in reply to Kenu

Perfect goes hand in hand with my definition of ms --more shit! Now I can smile when I say "I'm just fine"

I usually just say β€œI’m fine” when it’s casual acquaintances asking the question, because I know they don’t really care and aren’t really listening. One time, i thought I’d test that theory at a party and when someone I barely knew came up and asked me how I was and said that I looked so good, I answered with, β€œWell actually, I feel like sh$&” and sure enough, they just said, β€œThat’s good to hear” and kept on going. Proved my point.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Texandyroe


I always say I'm okay. I am So Tired of people saying, "oh I feel _____, too". So I just say I'm okay to avoid the frustration.

mm1527mm profile image
mm1527mm in reply to mrsmike9

I agree. My family says for everything that it is nothing to do with ms. im tired too, i get dizzy too etc. ok, that may be but you dont have brain lesions like i do. It is very frustrating

it is progressing but I am holding my own as best I can, and you will never see me not looking good rest assured of that

carolek572 profile image

I only get that question when someone is on the phone with me. I take it as them trying to have a polite conversation with me. When I see someone in person, they usually give me a hug and say that it's nice to see me. Keep Smiling :-D

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to carolek572

It's nice to see you! πŸ€€πŸ€—πŸ’•πŸŒ 

carolek572 profile image
carolek572CommunityAmbassador in reply to Jesmcd2

vHugs to you :-D

Looks like most of us are members of "The Liars Club". I just don't want to get into a discussion with anyone that doesn't quite get it. I usually hear " don't look like you have ms." And so it goes. ...

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to 2littletime

What does MS look like 2littletime ?πŸ€”πŸ€£ Next time ask them and see what happens 🀣yes I'm the horrible one! πŸ€—πŸ’•πŸŒ 

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