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.

I was in a really bad mood when a "friend" asked how I was doing so I started to try to explain only to be interrputed with oh yeah I know just how you feel. :mad:

I offered to hit her in the foot with a hammer that way not only would it burn with pain but eventually it would go numb.....then stick a bunch of pins in her legs and let the neighbors dog chase her around the block few times.....then I would believe that she really did know just how I felt!

She didn't much like that idea lol :rolleyes:

When friends ask, I tell them to go to MS Sucks, to learn and laugh. ;)

I use a scenario that actually happened to me to describe the fatigue. I was driving home from work one day and I was chewing a piece of gum. I got a wave of fatigue that was so crushing I couldn't even chew my gum :). I had to spit it out because it was just too exhausting to chew and drive at the same time. When I tell that story, nobody has ever said 'oh, I know exactly how you felt'...yet :D.

to my children when they were little, I explained it thusly:

"Mommy has HOLES in her head, where stuff gets lost, or flies away."

:D

and: "Mommy's brain is like an Etch-a-Sketch right now, so tell me that all over again, please?"

:o

to compadres, explaining vertigo, I'd say: "It's like being commode-huggin' DRUNK, but without the FUN singing-dancing-happy part first! Just go straight to the sickening SPIN-DIZZY part, where you holler 'STOP the WORLD, I wanna get OFF!'"

about exhaustion, I'd tell my brother it's like how HE feels after finishing a marathon, but I only have to walk for two blocks to get that tired...

to my sister, I'd say: it's like a week-long 50-mile backpacking trip through the Emigrant Wilderness, carrying 60 lbs... but the pack doesn't get any LIGHTER as you use up stuff in your pack, it gets heavier and heavier, and your knees start to buckle, and your ankles start to collapse, and the pack belt burns and pinches (the MS hug-squeeze).

:grouphug:

B2U - I have been struggling with this for a couple of weeks. I was talking with Girlie Girl just the other day - I have been getting "you don't look sick" when I feel like I would rather crawl under a rock and stay there. When people ask I just say I am fine instead of trying to describe it. Everyone else always seems to have the same thing as me but worse! Maybe everyone in the world have what I have?

wow - is that coming from the IV roids? :D

I gave up explaining it to my family. Number one they dont care. Number two they dont want to understand, and number three, I would be happier if they just left me alone.

For those that dont know, my family is looney tunes! I have a drug addicted sister, a mother who sells her prescriptions to my sister. A bible thumper bro who refuses to talk to or help with mom, and another brother who is such a germ o phobe if you have a cold he wants you to eat off paper plates around him so he wont accidentally get that plate next time he eats. My dad died from alcohol abuse years ago but he was the ring leader of this bunch of liars, theives, misfits, and freaks. I left home when I was 15 because I was tired of being molested, beaten, and abused. I went on to get my master degree, and make a great life for myself. This of course to them meant that I was sitting on a mountain of money and was refusing to share it with them. The only time they ever call is to tell me what kind of trouble they are in, or to beg me to help with my crazy abusive mother. So, when they call and pretend to care I always say "I am great! how bout you?" They then want to argue about me being great. Want all the gorey details. I am not gonna cough it up just to get into a who is sicker fight.

Whew! I guess I needed to get that off my chest!

That normally is my standard response. "I am great! and you?" people dont tend to want to understand, and those who do will take the time to get past the first pat response that is always given to complete strangers and friends alike. Real friends will always poke a bit further.

I really haven't had that question asked lately and I think that is due to the fact that for the ones that I don't get it, I will have signed them up to get Neurology Now magazine. I love it, I read it and explains things very well. Not just with MS, but any neuro problems...

Maybe they are reading and understanding or maybe they just go the hint to stop asking me all the time.

Missy

Dejibo
 

WOW! Dejibo, you have been through so much and through that, it has made you such a strong person :)
Good for you to not get caught up in the "who's sicker than who" game. Such a waste of energy. :eek:

Tonya