Aa
Talking with MSers vs. Non MSers
I'm sure many of you can identify with this scenario...
I was at one of my support groups last week, and many of my cohorts have much worse disabilities than I. When I mention my bike rides, I feel self conscious. Many of these folks couldn't dream of riding a bike. One of the guys who alternates between using a cane and a wheelchair gets into the pool 3 days a week to walk and swim. He was very proud of his walking 2 miles in the water, and swimming two miles. He alternates these activities by laps (1 lap swimming, 1 lap walking). It's been many years since I could swim this kind of distance, though I'm sure I could work up to it. He kind of looks surprised when I mention riding my bike 10 - 15 miles or more. So I asked him, "What's easier for you, walking on dry land, or walking in the pool?" He replied "oh, definitely walking in the pool!" I told him, "well, it's the same for me on a bike. It's easier to ride than walk." I saw the light bulb go on over his head. I think he understood me!
We all complain that people who don't have MS will never understand how we feel, but I'm starting to see that even our own kind don't always understand, either. That's where communication comes in, and being able to describe what and how we feel.
From non-MSers, I've almost come to expect the "but you look so good!" or "oh, I get that kind of stuff all the time", so I tend not to go into detail with them. I stay mum, change the subject, and keep soldiering on. When describing my stuff to MSers, I'm getting more understanding and knowing nodding.
Any similar stories out there?
I was at one of my support groups last week, and many of my cohorts have much worse disabilities than I. When I mention my bike rides, I feel self conscious. Many of these folks couldn't dream of riding a bike. One of the guys who alternates between using a cane and a wheelchair gets into the pool 3 days a week to walk and swim. He was very proud of his walking 2 miles in the water, and swimming two miles. He alternates these activities by laps (1 lap swimming, 1 lap walking). It's been many years since I could swim this kind of distance, though I'm sure I could work up to it. He kind of looks surprised when I mention riding my bike 10 - 15 miles or more. So I asked him, "What's easier for you, walking on dry land, or walking in the pool?" He replied "oh, definitely walking in the pool!" I told him, "well, it's the same for me on a bike. It's easier to ride than walk." I saw the light bulb go on over his head. I think he understood me!
We all complain that people who don't have MS will never understand how we feel, but I'm starting to see that even our own kind don't always understand, either. That's where communication comes in, and being able to describe what and how we feel.
From non-MSers, I've almost come to expect the "but you look so good!" or "oh, I get that kind of stuff all the time", so I tend not to go into detail with them. I stay mum, change the subject, and keep soldiering on. When describing my stuff to MSers, I'm getting more understanding and knowing nodding.
Any similar stories out there?
Good to hear from you, Kathy. We've missed you. I know you have been going through a lot.
Thanks for all the stories. I hope more are still to come.
Quix
Thanks for all the stories. I hope more are still to come.
Quix
Ooh, just found this and love it! My support group contains people in motorized wheel chairs, a scooter, canes, vision issues, etc. At first I felt like I didn't have much to speak up or complain about, since I can walk, drive (most of the time), etc.
When I finally did, I found out that everyone understood, or tried to, my own issues and how they've impacted my life. They understand pain, blurred vision, fatigue, depression.
They all, for the most part, don't dwell on what they used to be able to do, but look forward to what they can do and may be able to do.
I find that my limitations vary, so that I'm never quite sure what I'll be up to doing. I'm learning to live fully on my good days with (hopefully) not overdoing it too much.
This former mountain climber hiked a mile down a trail and a mile back up, and felt as high as if I HAD climbed a mountain. I hiked a 1 mile fairly easy trail the next day, and felt a great sense of accomplishment. Heck, last night I felt really good about cooking a fairly easy dinner!
I try savor the good, and accept the bad days. When depression looked like it was going to overwhelm me, I reached out for help. Things are better, but I'm planning on seeing a therapist soon, knowing I need that extra support.
Oops, a little off track, there. I'm still getting used to being diagnosed. I found myself telling strangers that I had MS to explain myself, and have been making an effort not to do that anymore. Pulling my carryon off the airplane, I ran it into an empty stroller, turned around to pull it loose, and a guy was looking at me and said "Well now!" I just grinned and said that I was a little out of control. I was so tired and my arm hurt so bad I could have cried, but smiling felt much better than whining.
I'm learning. I had a good talk with my best friend and she's so much more understanding of what I'm going through. Effective communication is so important!
On that note, I'll stop this rambling communication,...
Kathy
When I finally did, I found out that everyone understood, or tried to, my own issues and how they've impacted my life. They understand pain, blurred vision, fatigue, depression.
They all, for the most part, don't dwell on what they used to be able to do, but look forward to what they can do and may be able to do.
I find that my limitations vary, so that I'm never quite sure what I'll be up to doing. I'm learning to live fully on my good days with (hopefully) not overdoing it too much.
This former mountain climber hiked a mile down a trail and a mile back up, and felt as high as if I HAD climbed a mountain. I hiked a 1 mile fairly easy trail the next day, and felt a great sense of accomplishment. Heck, last night I felt really good about cooking a fairly easy dinner!
I try savor the good, and accept the bad days. When depression looked like it was going to overwhelm me, I reached out for help. Things are better, but I'm planning on seeing a therapist soon, knowing I need that extra support.
Oops, a little off track, there. I'm still getting used to being diagnosed. I found myself telling strangers that I had MS to explain myself, and have been making an effort not to do that anymore. Pulling my carryon off the airplane, I ran it into an empty stroller, turned around to pull it loose, and a guy was looking at me and said "Well now!" I just grinned and said that I was a little out of control. I was so tired and my arm hurt so bad I could have cried, but smiling felt much better than whining.
I'm learning. I had a good talk with my best friend and she's so much more understanding of what I'm going through. Effective communication is so important!
On that note, I'll stop this rambling communication,...
Kathy
All of us will have limitations. There are are no cut and dry limitations. For me it is finding what those are. Sometimes I will be able the complete a tasks other times not.
I found a limitation gardening and am paying a big pric a covered in Poison Ivy in my throat, eyes, ears, mouth, I never have had it. I called the doctors and they ignored it until they saw me in person today.
It is a set back but minor. I am not avoiding the woods.
With MS no on knows how and when your body will be effected. I have been around those who love to tell horror stories I guess misery loves company.
We cannot compare ourselves and be happy. Figure what you can do and do it. You ride horses, I ride horses.
Alex
I found a limitation gardening and am paying a big pric a covered in Poison Ivy in my throat, eyes, ears, mouth, I never have had it. I called the doctors and they ignored it until they saw me in person today.
It is a set back but minor. I am not avoiding the woods.
With MS no on knows how and when your body will be effected. I have been around those who love to tell horror stories I guess misery loves company.
We cannot compare ourselves and be happy. Figure what you can do and do it. You ride horses, I ride horses.
Alex
Yes!!! You really do have a great post going, Tonya was right! It is always nice to have that group of people who do understand but there will always be confusion of some sort when you put more than one person in a room!
And since MS is so unique like tonya said, we will all have some sort of different symptom in the disease. However, it is nice when even though its different, MSers can always appreciate and understand the difference and know that it is still a symptom and still a problem.
And good for you for keeping your head up when talking to people who dont understand! It can be very hard for people to understand especially if your head isnt split wide open or your vomiting blood. What I mean is people (not all though!) seem to only really give credit to anything that is obvious and in their face.
But just because they dont understand does that mean your fine. There is one reason that you can hold on to when someone says those things. They think if they say that then your not really all that sick, that maybe if they keep trying to tell you that what you have is normal is really trying to convince themselves!
My mother..is a GREAT example. I know my mother loves me but she is not very "open". For three years Ive been telling her i am sick, and for three years she has been fighting me. Calling me a worry wort, she has even argued with doctors!
My doctor TOLD me I had a nuerological disease (im in limboland right now) and she said he doesnt know what he is talking about. Every doctor that says something to credit my illness she tells me to get a different opinion.
It hurts that my mother is not there for me. But I know deep down she is scared and just doesnt want me to be sick. No mother wants her child to be sick. Heck, I wanna cry just when my child gets an ear infection! Can you imagine MS?
So just keep that in thought and next time when someone says something disregarding your illness this is something to possibly say. "I understand that you care about me and dont want me to be ill and that means alot to me. But if you have any questions about my illness ill be happy to talk to you about it."
That shows them you are greatful to their caring but you tell them indirectly that you are ill and it will not change just because they say something and are willing to talk about it without making an arguement. You just may peak their interest and if not, well move on.
If you need anything im just a holler away!
Inny
And since MS is so unique like tonya said, we will all have some sort of different symptom in the disease. However, it is nice when even though its different, MSers can always appreciate and understand the difference and know that it is still a symptom and still a problem.
And good for you for keeping your head up when talking to people who dont understand! It can be very hard for people to understand especially if your head isnt split wide open or your vomiting blood. What I mean is people (not all though!) seem to only really give credit to anything that is obvious and in their face.
But just because they dont understand does that mean your fine. There is one reason that you can hold on to when someone says those things. They think if they say that then your not really all that sick, that maybe if they keep trying to tell you that what you have is normal is really trying to convince themselves!
My mother..is a GREAT example. I know my mother loves me but she is not very "open". For three years Ive been telling her i am sick, and for three years she has been fighting me. Calling me a worry wort, she has even argued with doctors!
My doctor TOLD me I had a nuerological disease (im in limboland right now) and she said he doesnt know what he is talking about. Every doctor that says something to credit my illness she tells me to get a different opinion.
It hurts that my mother is not there for me. But I know deep down she is scared and just doesnt want me to be sick. No mother wants her child to be sick. Heck, I wanna cry just when my child gets an ear infection! Can you imagine MS?
So just keep that in thought and next time when someone says something disregarding your illness this is something to possibly say. "I understand that you care about me and dont want me to be ill and that means alot to me. But if you have any questions about my illness ill be happy to talk to you about it."
That shows them you are greatful to their caring but you tell them indirectly that you are ill and it will not change just because they say something and are willing to talk about it without making an arguement. You just may peak their interest and if not, well move on.
If you need anything im just a holler away!
Inny
We share our stories and sometimes we feel, thank goodness I'm not there yet, and other times we wistfully think I wish I was where you are. Bottom line like Tonya said, MS is a personal desease that manifests in each one of us differently...we each have to walk our own road and feel joy over our own accomplishments and not let anyone dimish these accomplishments. What a WOW that you can ride a bike!
For me? A Wow has been swimming. Not as long as your friend at the meeting, but an accomplishment just the same. A BIG WOW, for me (which probably helped the onset of exacerbation) was pulling an all nighter at the hospital with my daughter and then holding my brand new first grandchild. I did it, though. YEAH.
Congratulations to all of us on our accomplishments - big or small!
For me? A Wow has been swimming. Not as long as your friend at the meeting, but an accomplishment just the same. A BIG WOW, for me (which probably helped the onset of exacerbation) was pulling an all nighter at the hospital with my daughter and then holding my brand new first grandchild. I did it, though. YEAH.
Congratulations to all of us on our accomplishments - big or small!
What a GREAT Post! As it has been said many times...Everyones MS is unique to them. What you may not be able to do other MS'ers can w/ ease. That does not make one worse off than the other...Hope that makes sense :)
And when you say that many may be worse off than you....That may or may not be true! What you have /symptoms, is Real and affects you in different ways than others, does not mean that you are not as bad off....you have your days both good nd bad just like everyone....And that is unique to you!
So be PROUD when you tell someone that you can ride bike......As long as you can do it safely (no falling ;) Then you should...Good for you..But again, that does not in any way imply that you are not ill.
Yes, communication is key! Understand each other, sypathize w/ others, don't judge others, You know..The Golden Rules...Lol
Stay strong,
~Tonya
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