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Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
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Truth or Dare

Discussion in 'Lifestyle Management' started by Nielk, Oct 25, 2011.

  1. urbantravels

    urbantravels disjecta membra

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    You know what's funny about a disease like ME/CFS?

    Sometimes it's better for us not to "get up." Sometimes it's better for us to "lie down."

    I think we are sold a lot of very loaded cultural messages about health, including the message that disease is something we must "battle" or "struggle against," hence the extremely worn-out cliche about "battles with cancer." This attitude can carry with it the message that if we are NOT "battling" the disease we must be doing something wrong... because every disease must eventually succumb to an indominatable attitude...mustn't it?

    So that, potentially, a person with ME/CFS could absorb the message that there MUST be something we can do to actively "battle" it, and then go on to try every supplement, every regime, every treatment, every this and that available, that takes our precious energy and time and probably money as well, and that if we aren't actively engaging in this 'battle' then we haven't done everything possible we could do for ourselves.

    I think it often takes much greater strength to say "no" to this attitude, even when everyone around you is insisting you need to keep "standing up again." We need to take care of ourselves, survive, and save *some* of our limited energies for things that aren't battles.

    Battles don't inevitably make us stronger. Some of them are stupid and pointless and cause needless casualties. Hence the very wise expression, "Pick your battles."
    Nielk, Valentijn, Ocean and 2 others like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Good points.
    I think we have to work smarter not harder. I think thats what pacing and premptive rest are about, being smarter is the key. And sometimes just lying there in a dark room is the smart thing to do, we are listening to our bodies then, not the worlds expectations of having to work harder.

    cheers!!
    L'engle, ggingues and Mary Poppins like this.
  3. Nielk

    Nielk

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    I like your interpretation, urbantravels.
    Especially, in the beginning of this illness, I kept pushing myself to keep on working and doing. It was so detrimental to my heath! The more I pushed (got up), the sicker I got. What my body was saying is "I need you to just rest". My GP said "you don't realize it but, you are depressed. Get out and do things." My family was pushing me to get up and go. It was all wrong advice. By the time I crawled in to my specialist, he said I was probably too sick for any treatment to work.

    In addition, on a different level, when bad things happen to us. When we have to mourn or surmount great difficulties, our culture pushes us to pull up our chin and recover quickly. They admire people who are "strong" and bounce back. I don't think that it's a sign of weakness to take your time and go through the stages at your own pace. I think if you rush things "just so people should see that you are strong and can take it", it's a dangerous position to be in because one day it might all backfire on you.
    L'engle likes this.
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    This makes me think of a baby learning to walk. I would say yes to the 1st question. The latter makes me think of an injured or sickly person, and I think that would depend upon the circumstances. My brother was a paraplegic, so he had many "falls" upon his rehab, and I would think he was better off pushing himself some.

    So like I suggest, depends upon the situation.

    GG
  5. Valentijn

    Valentijn Activity Level: 3

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    Part of the annoyance for me is the "one size fits all" approach of these sayings. It presumes everyone has the ability to "get up again", just like eating right and exercising is the universal cure for being overweight. It might be 95% true, but it's still wrong.
    Ocean and ahimsa like this.
  6. Wonko

    Wonko Senior Member

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    Amputation works 100 percent of the time for weight loss. Solutions that work 100 percent of the time are rarely desirable to people.
    ahimsa and Nielk like this.
  7. Ocean

    Ocean Senior Member

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    Yeah I've always taken issue with the "what doesn't kill you makes you stronger" mentality. In my opinion, a lot of times the stuff that hurts you but doesn't kill you can make you much weaker than if you hadn't had to take those hits to begin with. Not falling at all is underrated, at least in that quote. I'd be happy to be "weak" if it weak means being spared of the many "falls" I've had to take. Bring on the weakness I say.
  8. Ocean

    Ocean Senior Member

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    Wow urbantravels. Amazing post. I need to print this one out and keep it at hand. I've had these thoughts to some degree or another before but you articulated it alll so well and made me realize some of my conflicted feelings on this issue. For a variety of reasons I tend to be on the minimalist side of the treatment spectrum for my CFS and it just feels so good to hear these ideas articulated and to hear someone refute some of the mentality that can be out there about "battling illness." There is nothing wrong with those who take the battle approach, the problem is those who don't are often treated as if they are at fault for being sick by not trying every single thing under the sun, no matter if it is remotely reasonable or realistic for them or not.

    This really brought to light some of my feelings in interacting with friends and family about my illness. Many definitely seem to have the battle mentality about my being sick and while I can never be bothered to explain why it is not appropriate for me in this case, their pushiness about it has always bothered me. So good to see it all written out here in such a relatable way and to hear someone else saying the same thing I try to tell myself when I get bombarded with the battle mindset by others. Thank you so much for writing this!
  9. u&iraok

    u&iraok Senior Member

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    I think it's true to a point. I've had a lot of problems in my life and if I compare myself with someone who hasn't had many problems (not too many of those anymore) I am stronger and when something happens to them they have a hard time handling it. And 'getting up' implies you were able to overcome which makes the statement a good one.

    But then, falling and especially getting knocked down hurts and does damage and can make you less strong in other areas. Depends on how many times you fall and how hard.

    Overall, I wouldn't go back and change things because I like how I've been able to mostly overcome and how I've learned and can help others with my experiences.
  10. Nielk

    Nielk

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    315749_10150365406229001_110285389000_8391056_1581251745_n.jpg

    Now, this I can relate to much better.
    ahimsa likes this.
  11. ahimsa

    ahimsa Senior Member

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    Very true - thanks for posting! I agree that this new message will resonate with more folks than the previous saying (about being stronger after falling down).

    For sandralee, and anyone else who wants a transcript, here's the text from the most recent image posted by Nielk:

    Not all scars show
    Not all wounds heal
    Often we don't see
    The pain someone feels.
  12. Nielk

    Nielk

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    The reason it resonates so well for me is that mainly that's the way I feel. I think there is a lot of pressure from society for people who have fallen in whatever means, to have to get up with chin up as if nothing happened. I think as humans when we get really hurt and especially if it's a chronic thing going for years or if it's a repeated beating, I don't think it's possible to get up and not be affected by what happened to ua and I think that's okay. That's what makes us unique. We do have scars and sometimes they don't heal completely but we can still remain caring, giving, insightful individuals. Sometimes, even more so because we know and understand and can relate to human suffering. It can make us more sensitive to other people's suffering but, we can do that while still carrying our own scars and not feeling stronger for having fallen and gotten up.
  13. SOC

    SOC Moderator and Senior Member

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    A school counselor at a college that I worked at had a picture of a lovely vase in her office. The vase had clearly been shattered and carefully repaired. It was still beautiful, but it was obvious it had been badly damaged. Underneath she had written, "Yes, but I am whole."

    I thought it a perfect image. We don't have to remain forever destroyed, but we are not the same. The damage may show, but we are full human beings, not wrecks. It's not a matter of getting up and going on our merry way like nothing happened -- the history (or the reality, in the case of chronic illness) remains. But we don't have to see ourselves as forever broken or worthless, either.
  14. sandralee

    sandralee

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    Thanks so much Ahimsa. We live in a predominantly sighted world, and I negotiate it pretty well, but sometimes I need a helping hand, so thanks for offering yours :D.
  15. sandralee

    sandralee

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    I love this analogy. It wrings so true for me.

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