But You Don't LOOK Sick! The Spoon Theory

[Why Syzygy]

Please check out the link and read the story at the original web site. Four paragraphs cannot convey this message.
This story has received amazing out pouring from people who live every day with chronic pain and a finite number of 'Spoons' (energy allotment).

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

(...)
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
(...)

Please read the entire article at
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

[FLAprogressive]

1. Thanks for posting. I was diagnosed with fibromyalgia last year.

It's tough getting healthy people to understand that I have good days and bad days, and just because I'm feeling well (or appear to be feeling well) one day, does not mean that I'm "better" or whatever.

[pipi_k]

3. I hear ya...

Haven't been diagnosed with FM, but have done the online symptom surveys and I have a LOT of them. Also, I have a sister who has been diagnosed, so I figure it's not a stretch that it could be in the family.

anyway, whatever my symptoms are can change many times during the course of a day, even.

I usually know what times of the day are better, but sometimes get a nice (or not so nice) surprise when what I expect isn't what happens.


In addition, I have various anxiety disorders along with panic disorder. That really makes things interesting... sigh...

[FLAprogressive]

4. Yeah....and the way some doctors treat you....they minimize your symptoms and act like you're making

it all up.

[TexasProgresive]

8. It is the same for those who suffer from persistant migranes

Just because the pain is invisable does not mean it is not there.

I would like to congratulate you for being able to spell progressive unlike yours truly. Actually there is a DU member TexasProgressive who never posts. I've tried twice during the times we get to change our DU name but no go. Any way education in Texas has gone around the trap in the toilet- I think the republican strategy is to create more and more ignorant people because the ignorant either don't vote or vote republican.

[gkhouston]

2. This could not have come at a better time. Thanks. n/t

[Why Syzygy]

13. That means a lot.

Glad I could pass it along.

[MedicalAdmin]

5. Great article.

The problem with all of this, as I see it, is that chronic pain and illness leaves one with a choice. Live screaming in pain. Or die.

It's a hell of a choice.


And in my case it is completely curable. But no one will cover it despite the fact that the insurance companies in question have contracts with me saying that they have to. I have lost everything and may lose my house now. I am just too tired to continue with the fight. I will tell you this - if I decide to go then I'm taking an honor guard.

[FLAprogressive]

6. kick

[TexasProgresive]

7. A question for fibromyalgia patients

Did or do you use aspartame (nutrasweet)? I have nothing to base it on but my own experience. I have diabetes and a coke (coca cola) habit. I was drinking a lot of Diet Coke when I started getting some strange symptoms, painful to touch skin on the top of both thighs, and if I was watching a baseball game or TV show where someone was sliding I would get a sensation in both legs from the feet upward as though I was doing the sliding.

Aspartame has some analgesic action and someone posted here at DU about kids consuming massive amounts and getting some sort of high. I removed all aspartame from my diet (really hard to do-its in everything - in fact the purgative I took for a colonoscopy had some) and the sensitive skin cleared up. The rushing thing is still there but it doesn't usually rise past my feet.

Since this stuff is so ubiquitous I wonder if it might be causing FB symptoms in some people.

[I Have A Dream]

12. I have fibromyalgia, and I used to use a *lot* of aspertame.

I no longer use any artificial sweeteners except a very small amount of saccharin in my iced tea. I never had any physical sensations when I used it, but I had read enough about it to strongly suspect that it was very dangerous to use either long-term or in large amounts, both of which were the case for me.

My pain has not gone away since I stopped using it several years ago, but I wonder whether it had something to do with the development of my fibromyalgia. Either way, I feel that it was a wise decision to no longer use these products. I don't have diabetes, so I can use regular sweeteners. I'm sorry that this is not an option for you. :(

[pipi_k]

14. I was having symptoms way before I used Aspartame...

No longer use it, but still have symptoms.

It did, however, make the anxiety/panic disorder symptoms worse.

[REP]

15. That sounds like diabetic neuropathy

I don't use any artificial sweeteners but I do have DN. Ask your doctor.

[TexasProgresive]

16. If it is dn why did the symptoms abate immediately after removing

aspartame from my diet?

[REP]

17. Sorry; thought you said you had problems with your feet still

At any rate, I can't answer; you'd need to see a doctor familiar with your medical history. Best wishes!

[OneGrassRoot]

9. K&R, and thanks :) n/t

[Why Syzygy]

10. kick

[I Have A Dream]

11. K&R.

I completely understand this. It's a very good article. Thanks for posting it.