Describing symptoms
 

Every once in a while there's a thread about how to describe fatigue, or cog fog, or lhermittes, etc. We do a pretty good job of describing it to EACH OTHER, and that's great. It's helplful to know we're "not crazy" and that other people experience the same things.

But how do we describe our various quirky symptoms so that "outsiders" understand them? I'd be interested in what things have worked for you to get somebody to say, "Oh, NOW I get it!"

For example, the other day I was talking with a friend, and I knew he was underestimating MS fatigue. So I said to him, "Remember right after you had surgery, and you decided to go make yourself a sandwich, and halfway through you were so exhausted you didn't know how you were going to drag yourself back to the sofa? And you were so exhausted from that little effort that you weren't even hungry anymore?"

He nodded his head, and I said, "Well, that's what MS fatigue feels like. Sometimes after I make the sandwich, and sometimes it's already there and I don't WANT to make the sandwich."

He said, "Oh, NOW I get it." And he probably does, at least somewhat.

I described vertigo to someone once as being trapped on a carnival ride that spins around and around and around...except that it never stops.

I also described vertigo that hits you with no warning as being on the ride, but you dont know when the ride will start up. You could be just standing up to get off the ride when it starts up again...and then you have to hang on for a long time because you dont know when the ride will stop again.

I described bone deep numbness as when your foot falls asleep...except that it stays that way, and you cant tell where your foot is...and you never get it to wake up or even get as far as the pins and needles sensation.

I went to the ER for muscle spasms and he told me to use Passive Resistance.. I just looked at him like he was friggin crazy! A couple weeks later my ex husband had charlie horses.. I asked him..did you do passive resistance to them? *lol* All he could do was try and not cry. .. I said see, thats what my muscle spasms feel like. I feel a tingle in my thigh and I know it's coming and there is nothing I can do as it spreads up my leg and locks my leg/arm in a painful spasm like a charlie horse..

IT FARGIN HURTS!

Boy..does my ex husband have empathy for me now!

Personally, I'm tired of explaining the same thing over and over to people who have access to the Internet and could do a little research on MS.

The last time my sister asked how I was I said "fine". She said "well good, the medicine must be working!". "Yeah, sure, it's working" I said. I'm so tired of explaining that the "medicine" isn't going to cure me. It may not even be helping....but I take it on the chance that it will.

I say "fine" whenever anyone asks me how I am because I just don't feel like explaining the same thing for the ten thousandth time. :(

Kelly -- ditto!

Agreed.....
 

This sounds like a job for Empathy Man.:D

Fatigue
 

I tell people that the fatigue is when you do nothing but look for a good place to lie down. You are so overwhelmed with being tired that it almost hurts. Even the Lawrence Welk show is exausting to watch. My cog issues I describe as: imagine staying up for 48 hrs and then try to take an algerbra test the following day......thats how that feels. Or listen to Mr Rogers explain how to tie your shoes and still not "get it".:hug:

All I know is if Jim's urologist, who we really liked, doesn't call soon I am going to go up to his office and grab him by the %$#@ and ask him "Now, do you get why Jim needs a doctor who will call back?"

Sorry, was letting a little steam out. Carry on.