How do you explain to others... - My MSAA Community

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How do you explain to others...

hairbrain4 profile image
14 Replies

I watched this 30-minute documentary that was on To me, it said everything that I would like to tell others about how MS affects me but have been unable to communicate it effectively.

14 Replies
Jesmcd2 profile image

Good film! Love how it says to connect with others! It is so easy to feel alone with this! Especially when others don't understand. My fam just asks, doing ok? Me, Always. ☺️

How do I explain MS? Depends on who it is🤔

Mostly, I just say it makes me forget things, walk funny and tired. So your name is George!😂🤗💕🌠

CrazyCatWom profile image
CrazyCatWom in reply to Jesmcd2

I just say, I have a Mess. And if anyone says, "You do NOT have a mess . . . " I just say: "I have a Capital M little E, capital S and add a little S. That makes a MeSs! And in the summer, that's a HOT MeSs!"

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to CrazyCatWom


carolek572 profile image

I love this short documentary and I have shared it with my loved ones, hairbrain4 Thank you for sharing it with the forum. Keep Smiling, my friend :-D

greaterexp profile image

That's a very good video. Thanks for sharing it.

rjoneslaw profile image

Thanks for sharing

I wouldn’t share this with my family because it would cause more issues for me. My family is always comparing to other people and saying this person is doing this or that why aren’t you doing something?

I have told them nothing about what’s going on with me it’s best for me. The last time I let them in on what was going on I was forced to go to the Mayo Clinic where everything become about them and the dr never listened to me and said I had something I didn’t have but told me to keep on the meds I was on which would not have worked with his diagnosis.

While at the Mayo Clinic my family clowned so badly and left me in the middle of the hallway in a wheelchair yelling at me the people asked me if I had a safe place to go and if I felt safe. The dr who saw me sought me out so he could talk to them.

So no I don’t share anything

I injured myself is my response to what happened to you

hairbrain4 profile image
hairbrain4 in reply to rjoneslaw

I'm sorry you had to go through that. I'm glad you found this site. We love you, care about you & understand. You are in my prayers.

Sandydemop profile image
Sandydemop in reply to hairbrain4

I am so sorry what an awful experience. Your family is not supportive but probably think they are helping. I had thought maybe i should go to the Mayo clinic to see the real experts. Now not so much.

CV97 profile image
CV97 in reply to rjoneslaw

Last night, as we were getting ready for bed, I was yawning and said I was really tired. My husband asked, "Why? Because you went to Sam's Club today?"

I'm sure he meant that going to the store was the only productive thing I'd done all day, which is pretty true for end-of-summer-break days, but he often acts like I shouldn't (can't possibly) be tired if I haven't put in a full day of hard labor at work like him. It's like a daily competition.

If he lives here, and sees me every single day, and still makes comments like that, how in the world can I expect anyone else to understand?

So, I'm with you on this one, the less people outside my little bubble who know, the better off I am right now.

I'm sorry your family treated you that way.

rjoneslaw profile image
rjoneslaw in reply to CV97

After my appt with my neuro and having a good report, I slipped up and told my family my walking had improved. You would thing they would say that's great but no they started saying to me you're not doing anything you need to go to pt you're not getting better what are you doing? what aren't you telling us?

Sandydemop profile image
Sandydemop in reply to rjoneslaw

They don't get it. My husband keeps asking me to go out with him to have fun. First of all there is a pandemic and everything is closed. Secondly, I can't walk too far even with a walker. I should feel guilty I'm not taking him anywhere? Thanks for letting me vent.

rjoneslaw profile image
rjoneslaw in reply to CV97

I get that too.

I would do my workout in the morning and my sister would see me and find a way to interrupt. If I ask her can you bring me something or can you do something? No you need to move use your legs.

Sandydemop profile image
Sandydemop in reply to rjoneslaw

I know what that's like. My husband expects me to do all the same things (and more) that I was doing when I could walk easily. Today has been so tough. I definitely feel like I'm getting worse even though I'm doing the MS gym every day. The days i have trouble walking i'm in a really pissed off mood.

Amore55 profile image

I use my electric wheelchair about a third of the time day now. I just hate that I have reached this point, but life is life! More than anything, I am grateful I do not need it all day long. My kids do not know that I use one at all. I prefer it that way. They try to understand, but I think they do not realize how difficult it has gotten. We know that it can happen, but I think, at least for me, I always thought that maybe it would overlook me! Pretty silly!

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