50 words or less

[Jozee]

I was trying to describe what life is like for me having Sjogrens and small fiber neuropathy but I felt I was too wordy and went on and on. I wish there was a "script" to explain it to others what life is like. The spoon theory is great however it doesn't tell what it is truly like pain wise or thought wise. Maybe it has to be scripted for each person you talk to. For instance my husband has "cluster headaches". He always has a mild headache but about 5 times a day he will have a very painful headache where his eyes just pour out water, he grabs his head and quietly screams. It goes away in about 60 seconds. It's awful to watch because I'm helpless to do anything for it. Anyway, I said to him the other day....Imagine if your cluster headache came and after 60 seconds it didn't stop. It never stopped.But you still had to go to work, clean house, run errands, wrap presents.  Imagine that you can never get away from that pain. I think he really gets it now. Bad side to that is now he's even more worried about me.

How do you describe to others living your life with the pain and issues??? It's hard to do it and not make them feel like they have to pity you.

[navydad]

I cant explain it,, the people around me can see my face is drained of color,, they see me cringing in pain,, hobbling,, trying to use my arms,, and hands,, but really they cant understand it,, not unless they experience it first hand,, and thank goodness they dont

[Shani]

There's  video and an article of 'The Spoon theory' you could look into this and see if it will help you to explain it to DH.

[navydad]

Tried the spoon therory  ended up with a knife in hte back

[Sha]

Navydad~

You always crack me up! That's what would happen to me too...it'd take too much time to use the spoon theory. Id end up using 2 just on the explanation alone;)

Still trying to figure out how to explain to pixies and trolls!:p

Sha

[sewandsew]

Another classic for Navydad.   

[eyeamdry]

I forgot the spoon theory and am too tired to read it again.  ever again. Lucy

[Carolina]

Hmmmm, well:

Sero negative:   five products for eye and mouth dryness, alone.  = 10

Bladder pain.  Sinus pain, draining. Clumsiness.  =  6

Dizziness, tripping, staggering. =  3

Numb feet.   Cold feet.  Cold nose.  =  6

Sweating, dripping off my hair.  = 5

Pain.  Pain, Pain.   MANY kinds.  =  5

Exhaustion beyond exhaustion.  = 3

Never knowing when I'll hit THE wall.  = 7

Effort, enormous effort.  = 3

Loneliness, deafness.  =  2

MMMMM,  guess I'm doing pretty well, all things considered!

Kisses

Elaine

[gphx]

I wonder if typical people can imagine what it's like to think of the things you really like to do or have to do and to realize you can't do most of them anymore. Or the feeling of going to bed not knowing what you will or will not be capable of in the morning. Individual symptoms aside this is the true impact for some of us.

[navydad]

I forgot the spoon theory and am too tired to read it again.  ever again. Lucy

Me too Lucy, I am to tired of reading it,, and like you,, I;ll never read it again,, it made sense in the beginning,, but not anymore,, its way past any spoon therory,,

[DragonflyC]

I go with one or all of the following:

It's like lupus.

It's like having the flu all the time.  I'm very tired and achy.  If you've ever walked through a wind storm, you understand what my eyes feel like every day.

My body is attacking itself. 



Whether or not the other person understands really depends on whether or not he/she is actually interested.  Some people will hear what you say, but won't take it in no matter which words you use.  Some people will understand before you say anything.  In my experience, most people are somewhere in the middle (leaning a bit towards the former).