"but You Don't Look Sick"

[erickamcc0523]

I don't know if anyone has read this, but this woman wrote this about her struggles with Lupus, and gives a really good explaination about the limited amount of energy Lupus gives, and how one has to plan their day..... I'm having severe brain fog right now, so I'll let this short story speak for me.

But you don't look sick!! Just fyi, it's in PDF format.

[extern14]

I love the Spoon Theory! It really helped me. Sorry you are having brain fog. I know how that one goes!

[paint-the-moon]

I love the spoon theory too. When I first read it to my husband though, he said, "Great, now all I'm going to hear is stuff about how you don't have any spoons left ..."

[potsgirl]

Ericka,

Thanks for sharing this with the forum. I think it's a great way for us and others with chronic illnesses to express in a tangible way just how little energy we really have. Another friend of mine with POTS told me about this when I was first diagnosed, and I found it very useful.

Cheers,

Jana

[Nikki]

The Spoon Theory makes perfect sense. I'm sure a lot of us can relate! Thanks for posting this.

[erickamcc0523]

You're welcome! I almost wanted to cry when I first read it... out of relief. Now, especially when I am having really bad cranial flatulence days, I can just hand someone the printout of this I have made and tell them to replace Lupus with POTS and they have an idea of what I'm going through on a day to day basis.

[tilly]

I have read the spoon theory, it is a poignant little story, about chronic debilitating illness and how you have to cope every single day and try to think about tomorrow, not to waste any of your spoons .... it helped my through, I relate to it all of the time,

tilly

[Guest tearose]

Before and after the spoon theory, out of desperation, I came up with my energy point system. It is just another survival tool. I usually sit at the kitchen table in the morning and calculate out just how much energy I have. Then I look at my today wish list and try to figure out what the priorities are, how much they will "cost" and figure out if I have enough energy points to do what I hope to do. The best part is seeing that cause and effect in action! If I "overspend" my energy points I clearly have less points the next day and have learned to pull back and rest or I will be headed for a potshole relapse! If I am careful and stay within my total, I manage well. Far less that the normal person but good for a POTS person!