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Lanette

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Just in case you haven't read it [Jan. 23rd, 2008|01:17 pm]
Lanette
This is the spoon theory which explains to healthy people a bit about what it is like to deal with chronic illness or disability.

I would say that compared to lupus I'm very lucky. I'm dealing with chronic nerve pain and endometriosis, but otherwise things are pretty good. I absoultely have 3 days a month that are terrible, like 3/4ths of my spoons have been stolen, but most days, because I have extreme energy naturally, I'm at least at 30 spoons. That's quite a good count. On those 25-30 days per year that I deem to be "bad days" I have around 10 spoons, but for me I go "pain manic" which means I type alot, a talk alot, and it's hard for me to focus and make sense because the very sentence I knew I was saying was interrupted with a brain override of "OUCH THAT HURTS" and I can't finish what I was saying.
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Comments:
[User Picture]From: thought1
2008-01-23 10:06 pm (UTC)
Brilliant description! *swipe*
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[User Picture]From: starrynytes4me
2008-01-23 11:03 pm (UTC)
I thought it was a great article.
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[User Picture]From: ebullientjenn
2008-01-24 01:36 am (UTC)
Wow. That really does illustrate it quite well.

As someone who has never suffered from a chronic illness I do take my health for granted somewhat.

But at the same time, just loosing half my body weight really improved my quality of life. But I still remember what it felt like to climb a flight of stairs at 300 pounds. It's the only frame of reference I have though.
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[User Picture]From: starrynytes4me
2008-01-24 06:46 am (UTC)
Thanks! I have to admit that life is easier for me with half the body weight compared with having BOTH problems. That said, the chronic pain is twice as difficult for me physically, so if I could trade getting rid of the pain for gaining back the weight I'd lost, I would do it. Luckily I don't have to make that choice.
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[User Picture]From: the_tatyana
2008-01-24 04:08 am (UTC)
It's interesting that you comment on how your outward behavior changes when you're in pain... now that I think about it, even in your posts where you don't actually say you're in pain, I think I can tell when you are and when you aren't based on the tone and pace of what you say... hopefully that makes sense, it did in my brain :>)
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[User Picture]From: starrynytes4me
2008-01-24 06:48 am (UTC)
I know exactly what you mean. In person, you can tell because my eyes get red, I have a hard time finishing sentences, and I just go silent.
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[User Picture]From: starrynytes4me
2008-01-24 07:05 am (UTC)
Thank you! The spoon theory made me get teary the first time I read it because it is SO like that. This author is also very kind and doesn't go into detail about the fear of getting worse and not knowing if it will get better.

I also love this story because my sister has MS and so much of this applies to her. My sister inspires me to be positive about my life, my friends, and myself despite any physical issues I'm facing. When you have someone who has far fewer spoons than you do always be willing to offer you the one from their pocket any day, I realize I can make due with what I have ;)

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[User Picture]From: lilymd
2008-01-24 10:24 am (UTC)
*sigh* I understand this post so much that I can't even find the right words to describe how I feel.
It just...all applies I guess--ESPECIALLY THIS: "it's hard for me to focus and make sense because the very sentence I knew I was saying was interrupted with a brain override of "OUCH THAT HURTS" and I can't finish what I was saying."

xoxoxoxo
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[User Picture]From: starrynytes4me
2008-01-24 03:44 pm (UTC)
That part really sucks because people think you are high, crazy, or really stupid. They don't realize that it isn't medication causing that problem, it's the actual illness and pain causing that problem.
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[User Picture]From: dkstwin
2008-01-24 04:53 pm (UTC)
I refer to it as Swiss Cheese Brain. I suffer from Depression and on bad days I just cannot pull the words needed out to say them. And to actually have a coherent thought....that's a laugh. I think it may be universal to anyone who suffers from something chronically.
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[User Picture]From: lilymd
2008-01-24 04:58 pm (UTC)
Yeah, with my fiancee we have little code type things when we're out where I'm frustrated and can't find words or something. I say I'm having a "No Focus" day and he'll understand right away what I mean.
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[User Picture]From: lilymd
2008-01-24 04:55 pm (UTC)
Oh my God, YES!! Last night when I couldn't sleep I wrote a bit about that. I'd felt so yucky and dizzy that when Joel walked in I laughed and said "no, I haven't been drinking"! He knows that of course but some people don't know I'm sick still and I've thought of telling them just so they don't think I'm being weird or another thing: lazy, for having to take time off of work for awhile. That one really bothers me because I'm not lazy and in fact I'm restless because my body won't let me do the things that my mind wants!
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