The "cost" of being sick...sometimes it's just too expensive to ________(fill in the blank!).

By LauraB Sunday, August 08, 2010

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I have a chronic disease (MS) and also severe scoliosis which causes me intense daily pain. Sometimes friends and family have a difficult time understanding why I can't join in. My sister and I came up with this way of explaining it: Imagine that everyone in the world gets $1.00 to "spend" on everything that has to be accomplished in their day. Maybe for one person, it costs 10c to take a shower, 50c to cook dinner, $4.00 to go to work and go home etc.....and when your $1.00 is spent, you're tired and you don't have any more $ to spend so you go to bed. You get the idea. And when you have the "sniffles", maybe it costs more like $1.00 to take a shower etc...so your $1.00 gets used up pretty fast. And other days are great and you can make your $1.00 go REALLY far! Well, for me every day my dollar doesn't go like a normal person's. Sometimes it costs me $5.00 just to get out of bed. And sometimes it's even more expensive than that. Alot of days I have to make the decision on whether I want to spend my $ on taking a shower and all that entails, and doing a little housework because I spent all my $ yesterday when I had a Doctor appointmentand couldn't "afford" to get my dishes done or vacuum or something. So in this way I can explain to others who don't necessarily understand all about my illness why I can't join them for lunch because I don't have any $ left! For me this is a really easy tool to use and most people seem to "get it" right away. And now, all my money is spent so I must go! Thanks for the opportunity to share my story...

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Stacey

8/11/10 6:11am

Hey there!! I read your analogy of Money Spent for Effort Expended!! Good one!! I know with myself, there's ALWAYS a price to be paid for everything I do!! Even just going to the bathroom "costs"!! LOL!! IT'S YOUR MONEY!! You spend it how YOU want to!! Not how others want you to!!! Have a GREAT DAY!! Stace

LauraB

8/11/10 8:30am

Thanx Stacey for the comment...I didn't really even think of how much it "costs" sometimes just to go to the bathroom! Not to mention the price of getting there and back to wherever you were! Ahhhh....the old days. When we didn't have to think about all this stufff. But I guess we humans never really appreciate what we've got until it's gone. So I try to laugh as much as possible (especially at myself!). If you think about it, there's really alot of humor in this whole "chronic illness" situation, don't you think? What we need is our own hang-outs with stand-up comedians, etc. Why, there's a huge untapped population out here of wonderful, caring , thinking people. Well, for now, I'm tapped out... Laura!

helene

8/12/10 10:20pm

Great idea to use money to explain the 24/7, every second of every hour of every day of every week of every month of of every year, costs of chronic pain and illness. Money, and the need to budget it and/or shortage of it, are probably the things that are most relatable to even the healthiest of people.

The woman with lupus who started the website butyoudontlooksick.com, uses something she calls, "The Spoon Theory". To get other people to understand why she couldn't do the same things they could do, even if she, "didn't look sick", she took out a bunch of soons from her kitchen table and said things like, "Look, doing X cost you 2 spoons. It costs me 5 spoons. There are only 10 spoons here. No do you get why I have only 5 spoons left, but you still have 8?"

Having been chronically ill for decades myself, my own practice is, after clearly explaining my situation to someone, family members included, if they still refuse to accept me for who I am, I cut off contact with them. I have found that this makes my life, and health, much better. I also wind up being around and loved by the best people.

LauraB

8/13/10 6:45am

I have read the "Spoon Theory" and it's great! I've found that everybody can relate to money pretty well in this day & age. And I know what you mean about people who just don't seem to want to understand. It's really not worth wasting too much of our precious " $ " on them...I've had people who were supposed to be my best friends tell me that "if I just excersized more" or "if I wasn't such a baby about it". And I've had excruciating 24/7 pain for 10+ years which I've tried very hard to deal with and not go out of my mind. But we have to keep our thoughts where they belong, and as you said - stay around the ones we love and who love us. I'll tell you this...in my life, I've never learned anything from the easy stuff. It's the really hard things that I've learned the most from. And this is the hardest of all. Laura

Lucky

8/14/10 11:23am

I also have been dealing with MS and Spinal Stenosis for a very long time. When someone, say an acquantance asks me how I'm doing I always say "Great" How are you? I really don't want to suffer conversations with someone who wants me to be what I'm not. I find being in pain all the time a very lonely existance. But I am soo much more grateful for the small things in my life that make me feel good. My husband has become so much more supportive when labels were put on sickness. There is some good advice here. Screw the creeps that expect too much and hold on dearly to those who love you and understand when you say "I'm not going to be able to make it to the party tonight.

I like the idea about the spoons, which reminds me, I was thinking about making some chimes with old silverware! Gotta go.

Ginny

The "cost" of being sick...sometimes it's just too expensive to ________(fill in the blank!).

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