Frustrating
 

How in the world can I possibly "explain" MS to anybody else when I don't even understand it myself??

I have a really good day, so good that I catch myself thinking, "Am I a big fat fraud? Is it all in my mind? Have I been healed?"

Then I have a really bad day, when I wonder how soon I'll be in a wheel chair, how I can possibly go to work, how long I'll be able to stay in my home.

I can overdo it, and maybe one time out of ten, the next day I'm...fine! Go figure!

I can do everything right, plan ahead, take it easy, save up my spoons, and the next day it's as if I've biked up Mt. Everest backwards.

So I'm trying to "explain" to people that not only is MS different for different people (No, I don't have ON; no, I can't work 60 hours a week like your friend; no, I'm not totally disabled like your mother) it's different for ME at any given time.

Well, it's not boring.

I know what you mean. Sometimes I'll tell my sister how bad I feel (over the phone) and then when I actually see her she tells me I "look fine". We don't see each other that often as she lives in VA so it stands to reason that the times I do see her I'm doing okay and not having any drastic sxs. Sometimes I wonder if people think I'm faking it!! I don't want to appear disabled when I see her....but I hate feeling like I'm always being "sized up". :mad:

I don't think anyone understands the fatigue we have, though. I can't even find words to explain it to others. They just say "yeah, I get tired, too".

You can't. :(

I rarely even try any more but at least we have our friends here that do 'get it'.

:hug:

Yep, this is our own personal rollar coaster ride. I just say good days and bad days, and that each of us have different experiences since the nervous system gets attacked differently.

My path has been different than my other family members. I've seen the worst case and best case scenarios with their MS. And I'm a little inbetween, LOL. So for my family, they already know that this disease is wacky. :Crazy 2: I'm not thankful for the way they understand, but am glad they do.

On a side note, It doesn't fully explain the fatigue, but to get people to stop the "I get tired too" - I usually tell them to imagine the feeling of tiredness they get with the flu and imagine having that 24/7.

BTY :hug: I know what you mean, its real hard to explain, and when they start with you dont look sick or disabled, you already know you are not going to be able to reach them with what MS is

you are not alone in second guessing yourself, I have wondered a few times what is and what isn't MS or is it me. You have us friend to chew our ears off, try not fretting too much about it. Take it easy and just keep on truckin

there's often no rhyme or reason to MS.

you are so right that things can change on a daily basis.
every person IS different. i found that slow, calm, steady explanations and education to interested family and friends helps.

those close to me can see the effects for themselves.
it's hard not to miss.

you've got a great attitude.
we're here for support and help.

I can let go of the need to explain it to the rest of the world (though it's pretty deeply imbedded in my personality).

The hardest part (given that previously mentioned personality) is trying to figure it out myself, because I HAVE TO figure things out, predict and plan around things, analyze things right to death.

If I have a bad day, I have to figure out what I did wrong (possibly nothing). If I have a good day, I wonder: What's the catch?

Where's that head-banging thingy, Frank??

I know......I'm the same way and I'm trying really hard to get out of this habit.

I'm trying hard to just accept that I'm not going to feel 100% everyday....and the days that I do feel good well, I need to learn to just plain enjoy them without waiting for the other shoe to drop!! :)

BTY :hug: I know exactly what you're saying. I've given up long ago trying to get others to understand. I end up getting compared to their friends who have MS and are running marathons, etc. :( Heck, on a given day I can't even understand and just when I think I'm doing OK, I get whacked with the fatigue bat.

My biggest issue right now is having to go on an out of town business trip tomorrow. One event lasts until 11 p.m. - that's nice, but with the different time zone that means 2 a.m. my time! LOL So yep, going to risk getting backstabbed by those who know I have MS and sit that one out because otherwise I'll miss the next day's meetings because I'll be in bed all day. ;)

You are so right, MS is never boring.