How many spoons?

[Suzie]

amberjolie1 - I'm in the same camp as you, with a husband not working due to disability. It's awful trying to keep going, but these days we work as a tag team, instead of playing, "Who's sicker today?". But sometimes the resentment creeps in...until we re-unite to fight our common enemy. The children! (Joke. Kinda. Okay, sub "lovingly nurture" for "fight").

He shouldn't do the grocery shopping as it aggravates the chronic pain in his smashed ankle - I shouldn't do it because the soles of my feet SCREAM by the end. I only tackle it when I'm feeling just as good as I ever feel. If most people feel like a 7 out of 10 on a regular day, I'm a 3, tops.

Just wondering - does anyone else have nightmares if they go to sleep while in pain? I dream about my worst fears (burning to death, my kids getting a fatal disease) when my feet are burning when I've pushed myself too far.

[Liz D.]

Thank you all for your replies!!  You all had such great suggestions.  It seems we all suffer the same and although hard, I just have to accept my limitations.  I hate it.  I used to have limitless spoons.  Now with Sjogrens, I never know what the day can bring.

I have to stop worrying about what other people think of me.  I feel like if I do good one day, then they expect everyday should be good for me.  Then  I run out of spoons early in the day, I feel like a failure and feel people must just think I am lazy.

Liz D.

[Scottietottie]

Hi Liz 

Yes you MUST stop worrying about what other people may or may not think. You KNOW you are not lazy. You know you are ill and you know what you have.

It is about one day at a time. You take care of yoiurself and stuff what anyone else thinks! It's none of their business. Good friends will understand. If someone doesn't then they are not a good friend.

Take care - Scottie 

[Liz D.]

Thanks, Scottie.  Good advice!!

Liz D.

[Sooki]

Some days the spoon theory works and I'm done after the last spoon is used.  But sometimes I can't tell how many spoons I had until the next day.  Some days I feel really good and do too much because I don't feel tired.  I even go to bed feeling okay, but wake up exhausted and achy with new symptoms trying to come out. I'm trying to be sensitive to how tired I feel but that nervous energy takes over, especially I'm engrossed in what I'm doing.  I think the rule has to be a nap every afternoon even when I don't feel like I need it.  A nap would probably quiet the nervous energy so I'd feel my level of fatigue better.

[JenniBuginPink]

What is a "spoon"? I read all the posts and can't make it out.

None of the links to the pages on the Spoon Theory seemed to work for me, but I did find this video. Hope it helps anyone else who didn't know anything about it...http://www.youtube.com/watch?v=jn5IBsm49Rk&feature=player_embedded

[Joe S.]

Welcome JenniBuginPink.

You may also try this link. http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

[theosof]

Jenni and Joe thanks for the links. It is a wonderful visual for family and friends. I sent it to friends. I will need to think about it more.

[Meld256]

theosof,

Yes, it's just a way to explain to others how we "run out of steam" so quickly or only have so much energy, when before our illness it seemed limitedless.