Please be mindful of what you say ....

[jjs]

Just a friendly reminder I guess. I'm in a facebook group that's diet-related. Today I read someone say this:
"Every time I have an MS attack (which is twice now) I always ..."
It struck me so funny I laughed. Not out of disrespect for the person - I believe they just weren't being mindful of how that might sound to some of us - but I laughed because of ME. Never since this MS journey began have I ever had a break. I cannot even comprehend or understand that statement. It nearly made me a little angry - again, not at the one saying it, but angry at my situation.
Here I sit, wondering how much actual life I have left in me (40 yrs old) and understanding how my 53 year old friend at the nursing home with MS could die so young. I can see it now. But I CANNOT give up. I think once I quit fighting that's it. No hope. But I'm not sure how much longer my strength (what I do have) will last.

Anyway - I know we are each going through our own personal experiences ... but for the sake of others, please be mindful of what you say. And of course I say all of this knowing my situation could be a lot worse. I can still walk some with help and some are totally bed bound. I'm sorry. I used to not understand how someone can get to that state AND even wondered if they had anything to do with it or if they could help it some how ... but now I see it and frankly it scares me a little.

One day at a time is all each of us can do - from the best to the worst.

[pennstater]

I am sorry that you have had a consistently rough course with your MS progression, as well as your friend's. I get angry at the disease for you.

I won't presume to know how that feels, as I am still relapsing remitting, with primary problems being fatigue, cognition, and upper arm issues. I have been fortunate with my disease course to date and I know it.

I can understand to a point your feelings. But in a support group, all experiences are relevant. To the person going thru the two relapses, it is their journey. Everyone's journey is different, and to each, difficult.

What would you prefer people with a "milder" disease course say in their posts? I don't want to offend or cause frustration in the future.

[sarabeach123]

I think about this every time I post something. My physical symptoms are very mild compared to what others are going through, yet my emotional turmoil with coming to grips with the acceptance of my diagnosis is overwhelming. I feel guilty every time I ask for help, or when I talk to the MS nurse because I often feel like my experiences aren't worthy of being shared and I simultaneous dread yet crave the opportunity to talk about what I am feeling. I really do think that my empathy level has decreased since the diagnosis. I find it hard to stop and try to put myself in other people's shoes because I am too focused on what I am feeling. I hope that when I come to grips with the diagnosis that I will be more empathetic!

[Tawanda]

I can relate. I never had anything relapse or anything remit...that I knowof, anyway . I am both mobile physically and on the road. My mother and SIL died with with M.S. They were immobile. They were young. No matter where you are on the MS spectrum, there could always be a worse. that feeling of waiting for the other shoe to drop accompanies me constantly!

[SNOOPY]

Hi jjs,

I would like to respond to your post but more in a general sense and not the issue of MS specifically, I hope you don't mind.

Your post reminded me of a conversation I had many, many years ago with someone I didn't know very well. She was such a fun and funny lady. She was French and having dinner at her home was an experience. She did a seven course dinner --- just an amazing experience!

We were talking about mindfulness. It was a general conversation about saying the wrong thing without meaning to. This happened, on my part, in the course of this light hearted conversation. I felt bad and she told me this just fits into our conversation and that I would have no way of knowing. No matter how mindful you are you still do not have complete knowledge of another's life.

There can be so many different scenarios this could play out in.

When we react or feel negatively about something someone says it's not about them, it's about us. When that happens we have something we need to explore and learn about ourselves (why did what they say bother me, why did I react like that, what does that say about me, ect). There is usually something we need to work out within ourselves.

Many things we react negatively to is simply a reflection of how we see ourselves. All this means is you have work to do on yourself --- self worth, personal/spiritual growth --- growing and learning.

[Waydwnsouth1]

It takes a lot for someone to ruffle my feathers. Things roll off my back like water rolls off a ducks back.

Usually when people say something that gets on someone's nerves they are totally unaware. One can't possibly know what is going on in someone's life at any given moment. So, we, as MS'ers have to be aware of that. I don't believe anyone would say anything to hurt another persons feelings on purpose. With that in mind, one needs to learn to take what people say with a grain salt.

[palmtree]

No matter how "mindful" others are, they can still say the "wrong" thing. Sometimes someone will even get upset with someone because they are choosing their words so carefully in order not to insult.

One way to protect yourself is NEVER EVER COMPARE yourself to others. She said she had an MS attack. That was HER experience. It sounds kind of silly to me. RRMS people have relapses or exacerbations not attacks anyway. It sounds like she was just having a day when her symptoms were worse.

I don't know how my journey compares to others and it doesn't matter. I have to live my life every day. That's all.

[jjs]

I am sorry that you have had a consistently rough course with your MS progression, as well as your friend's. I get angry at the disease for you.

I won't presume to know how that feels, as I am still relapsing remitting, with primary problems being fatigue, cognition, and upper arm issues. I have been fortunate with my disease course to date and I know it.

I can understand to a point your feelings. But in a support group, all experiences are relevant. To the person going thru the two relapses, it is their journey. Everyone's journey is different, and to each, difficult.

What would you prefer people with a "milder" disease course say in their posts? I don't want to offend or cause frustration in the future.

You are right - to each his own. Maybe the one who has a more severe case handles just as well as the one with a milder case? I mean, we each have various levels of tolerance mentally, physically, emotionally, etc. So someone with 'two episodes' might take it just as hard as someone with consistent progression?
I'm not sure what would be the best thing to say!!!! I was just bringing up a few thoughts I guess. If we just each do our best to be mindful of what we say, then that's all we can do, right?!

[jjs]

I think about this every time I post something. My physical symptoms are very mild compared to what others are going through, yet my emotional turmoil with coming to grips with the acceptance of my diagnosis is overwhelming. I feel guilty every time I ask for help, or when I talk to the MS nurse because I often feel like my experiences aren't worthy of being shared and I simultaneous dread yet crave the opportunity to talk about what I am feeling. I really do think that my empathy level has decreased since the diagnosis. I find it hard to stop and try to put myself in other people's shoes because I am too focused on what I am feeling. I hope that when I come to grips with the diagnosis that I will be more empathetic!

I'm sorry! Life can really be difficult!!!!! I hope and pray you come to grips soon ... I think once we just 'accept' what is going on with our bodies then the biggest hurdle is over. Sometimes I *think* I have fully accepted all of the changes, but then once in a while I struggle with a little bit of anger or maybe sadness would be a better word. Anger sounds too harsh!
I tell myself "it could always be worse" ... and it can ... but at the same time I try not to define what "worse" is!!!!!! because once you reach that point, then you have more hurdles to get over

[jjs]

No matter how mindful you are you still do not have complete knowledge of another's life.

There can be so many different scenarios this could play out in.

When we react or feel negatively about something someone says it's not about them, it's about us. When that happens we have something we need to explore and learn about ourselves (why did what they say bother me, why did I react like that, what does that say about me, ect). There is usually something we need to work out within ourselves.

Many things we react negatively to is simply a reflection of how we see ourselves. All this means is you have work to do on yourself --- self worth, personal/spiritual growth --- growing and learning.

I agree - thank you for sharing! I don't think I properly conveyed that in my original post. I realized it was not about what "they" said, it was about "my" reaction to it. I just don't understand, that's all. I cannot relate. What does it mean to have "two attacks"? Sometimes I wonder if maybe I have something else. But they cannot find anything else!!!
Anyway, thank you again far sharing!!!

[jjs]

I can relate. I never had anything relapse or anything remit...that I knowof, anyway . I am both mobile physically and on the road. My mother and SIL died with with M.S. They were immobile. They were young. No matter where you are on the MS spectrum, there could always be a worse. that feeling of waiting for the other shoe to drop accompanies me constantly!

I'm sorry to hear of your loses.

[jjs]

It takes a lot for someone to ruffle my feathers. Things roll off my back like water rolls off a ducks back.

Usually when people say something that gets on someone's nerves they are totally unaware. One can't possibly know what is going on in someone's life at any given moment. So, we, as MS'ers have to be aware of that. I don't believe anyone would say anything to hurt another persons feelings on purpose. With that in mind, one needs to learn to take what people say with a grain salt.

Agree 100%, thank you!

[jjs]

NoOne way to protect yourself is NEVER EVER COMPARE yourself to others.
I don't know how my journey compares to others and it doesn't matter. I have to live my life every day. That's all.

Very true ... but it's so hard not to compare!!! MS is a very strange thing ... and all the more reason not to compare. Thank you for the reminder.