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Posted: Sat Jan 24, 2004 9:19 am Post subject: What is the most helpful thing friends/ family do for you?
Those of us who love you want to know: (Hmmm.... "inquiring minds...") - anyway, we want to know what we can do that is helpful. We may live far from you, you are a relative or friend in another city. We've been told, "there's nothing you can do" or "just go on with your life, no sense both of us being miserable", but hey, you'd do what ever you could for us. So - give us some hints. What has someone done for you that seemed "just right"? You might also add what the wrong thing to do!
The best thing my friends do for me is just treat me like a human.
They dont make me feel that I am any different than them. They say are you? You still are the same person your body is just doing weird things
The one thing friends and family can do for me is to quit saying " but you don't look sick" I believe they really don't think I am because they can't " see" the illness.
Posted: Sun Feb 29, 2004 9:11 pm Post subject: stop nagging and being my doctor
I know all the suggestions that come from family and friends are coming from love, care, and concern...but what you all really need to know is that every day is a struggle - sometimes just minor, sometimes huge...but by nagging and trying to force things on us you undermine the work we do to get through this. Sometimes the fact that we got out of bed should be applauded, and you should just ignore that I ate fast food (because I was too tired to pack my lunch). I KNOW it is because you love us...but please, try to understand that we need to hear positive things...and to hell with all the rest.. and thank you for caring enough to ask!
Joined: Jun 21, 2004 Posts: 16 Location: leipzig, germany
Posted: Wed Jun 30, 2004 11:36 am Post subject:
the best thing my boyfriend did for me was to assure me his love by just telling "you can rely on me!".
and I really can, he is really helpful, especially in situations where I feel bad. He knows when its really too much for me, and when he thinks I'm exaggerating (and I really do sometime, though I don't recognize until he tells me), he tries to stop me . I feel better with that, because it showes me that he doesn't see me as "disabled", but as person who can be faced with the truth...
Best wishes, Antje. _________________ "Anything essential is invisible to the eye.” Antoine de Saint Exupery, The Little Prince
Well lets look at the other side. Hubby of 20 years was diagnosed in Jan 2005 and put me through hell. I was never quite sure if he was angry that is was him and not me that actually had it or whether he was being Gallant. Well IMO it was all a Crock of Crap as I'm not going anywhere he is the person I married he just has a few issues. Took till April when I basically had an emotional breakdown(screaming fit) for him to realize he was just being MEAN. Let your loved ones tell you to eat better but then again suggest they get your lunch ready as diet is important and fast food is not good for any of us. Give them a job and they will likely do it as they want to help. Your not alone MS takes us all with you and we are more than prepared to help in any way that is possible.
Suzie said:
Those of us who love you want to know: (Hmmm.... "inquiring minds...") -
She is so right we just want to help and if we smother while we are doing it that just means we need a hug and we are scared too. You are not in this alone we are all on the same path we are together.
Suzie, I am glad that you asked this question. However, all I can think of are the things not to do.
For those interested parties, my don'ts:
1.Don't get a pained look on your face as you survey my, now crippled, body. [No matter that in the good old days we used to play 4 sets of tennis with ease]. The troubled, pained look is my biggest pet peeve.
2. Don't stop calling just because I "don't get around much anymore"[hey that's a song!] I am still a human being trapped under all these spasms and contortions, and that means I still need human contact.
3. Do not engage in senseless and cruel gossip about my condition.
Case in point: Occasionally, one of my old friends will call to "get the dirt" on my current state of ms, then will go out to coffee with the rest of my old friends, and even people who don't know me, and share all the gory details.
**I can just hear the "oh, no's" and the "no....really??" at Starbucks where we used to get together each morning[b/4 ms]
And I make sure now to only share info that I would feel free to broadcast over a loudspeaker at the next Timberwolves game.
[In other words...very little]
Don't intend to sound so cynical--just been burned badly in the past.
[weird stares at the grocery stores]
-KK2 _________________ Giving ms the "Ax" every day!
KitKat2 does this really happen? I can't even fathom that. Are you sure you live in the states? Canada is a tad different we don't have all that going on. You just have MS right or are you hooking on a street corner.?Now they do point that out up here but not wheel chairs that I've seen. _________________ John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX:r. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
Hahaha!... Melody,
It's just that there are some people that I don't want knowing about my occasional incontinence, etc. Things like that, which are really nobody's business. Imagine how you would feel-it gets personal.
I guess with losing control of my bodily function, I have attempted to maintain control in other areas. _________________ Giving ms the "Ax" every day!
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The best thing my friends do for me is just treat me like a human.
The one thing friends and family can do for me is to quit saying " but you don't look sick" I believe they really don't think I am because they can't " see" the illness.
. I feel better with that, because it showes me that he doesn't see me as "disabled", but as person who can be faced with the truth...
