Terminology
 

I know there are technical terms for various MS symptoms and issues, but the average person doesn't relate to those terms very well.

Six years into my diagnosis, I'm STILL trying to come up with terms that:
1. Convey the gravity of the symptom
2. Don't go over the head of the average person
3. Don't require two paragraphs of explanation.

For example, the ever-popular MS fatigue.

"Fatigue" doesn't really convey to people that it's more than "I know what you mean, I'm tired all the time, too."

"Lassitude" is the more correct term, but I'm picturing 99% of my friends and family saying, "What does THAT mean??"

And now we're down to two paragraphs of explanation to describe MS fatigue. *sigh*

I'm still working on that one.

I've also been trying to narrow down a way to describe how I react to heat. I used to say "heat sensitive", but that way understates it. I've started to say instead "heat intolerant", because people understand "intolerance" today, relating to gluten, lactose, etc. and I get a little more understanding that it isn't just that I don't LIKE heat, it's that I can't DO heat.

I'm pondering one-word descriptions for the other symptoms, also. I keep slipping back to square one. *sigh again*

Fatigue is so debilitating......I've just gotten to where I say "fatigue is preventing me from explaining any further". ;)

"Debilitating Fatigue" is good...

When I want to stress it, I call my fatigue "exhaustion" I have been known to call my heat issues "heat exhaustion" as well.

I do like the "intolerant" word because folks understand what it means.

I find that most folks are so busy trying to tell me about their own troubles that they are not really listening when I speak about mine, unless they themselves have been truly ill and completely get it when you say "im wiped out!" Others will say "omg, me too! you can believe what happened today" those who have been truly sick will say "I agree, I can see you are struggling today."

I can't hide anything from my oldest son. If he asks me how I'm feeling and I tell him "fine" he'll say "I can hear it in your voice that you're not feeling good today". :o Wish my younger son was that observant. :rolleyes:

I say re: heat

I can't regulate my body temperature. Outside a 5 degree window I'm too hot or too cold.

Re: fatigue

I say for comparison "Sometimes they use medication they give for Narcolepsy (Provigil)

Yep Kitty I hear ya... The kids and significant others can read us like an easy book;)

I like "debilitating fatigue"....much more specific and a bit more negative, which I personally feel is needed to get across how awful it truly feels.
And "heat intolerant" is great too! Means In no uncertain terms that we can't handle heat.
As minor as my complaints about MS sxs are compared to cancer, ALS, etc., I wouldn't wish MS on my worst enemy. It's the unpredictability of it that interrupts my life and lessens the quality.:(

I like "debilitating fatigue" too. When someone so "oh, I know how you feel", I usually just ask "have you ever been too tired to chew gum? Because that's how I feel".

Most people I know can visibly see what the heat does to me because I tend to panic when overheated. I don't really know how to explain it to a non-MSer though. Besides just saying "I can't tolerate heat".

I agree with Debbie that a bit more negative is sometimes needed to convey that...well, that it IS worse that what the average person experiences.

For example, I offten call it Degenerative Joint Disease instead of Arthritis, because I don't just get a little achy when it's rainy, I have an ankle that's locked in position, swollen, and caving in.

But I don't want to be like my friend who always has severe deep contusions (not the bruises we normal people have) or severe acute bronchitis (like "acute" doesn't just mean "not chronic").

I sometimes like medical-ish words such as regulate, intolerant, debilitating, medicating, episode, flare-up...as opposed to words that people can relate to TOO much. Everybody gets exhausted, overtired, shaky, overwhelmed sometimes.

Of course, this all assumes that we're talking to people who are actually listening and wantint to understand. If they aren't, I guess it doesn't make any difference what we tell them, does it?

I'll never forget sitting with a couple of colleagues at a break between meetings, and one lady leaned forward and put her hand on my arm, looked me right in the eye and said, "Tell me what it's like to have MS...how do you feel most of the time? How does it affect your life?"

I kind of laughed and said, "Oh, you don't have time for my epic story!" and God bless her, she said "I've got all the time in the world. I really want to know." I told her, "I love you forever."

But since most people aren't like this lady, I'll still keep trying to fine tune some terminology that works. Keep the input coming, please. :)

I use 'crashing fatigue' I don't know if it works better - but it does sound like it feels.
Lyn