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How many times do I have to hear this?

Discussion in 'Lifestyle Management' started by Nielk, Dec 12, 2011.

  1. Ocean

    Ocean Senior Member

    Totally agree. It's exertion of any kind that can cause PEM for me, not just exercise. I haven't exercised in over a year, but I've had lots of PEM crashes. And my "energy envelope" also seems much smaller than it used to be. With each big PEM crash I have not recovered to where I was pre-crash no matter how many months of rest and avoiding PEM I managed to pull off afterwards. And none of the crashes were from any major exertion either, just too much for my system.
  2. CJB

    CJB Senior Member

    Someone posted a link on the forum today (sorry I don't know where it is) to a summit on happiness with leading figures of several different religions, among them the Dalai Lama and I'm sorry I wasn't familiar with the other panelists and don't recall their names. But the subject of the lesson/blessing in any adversity, of course, came up.

    And it occurs to me reading this thread that I am learning what true compassion is. I've seen it demonstrated here numerous times.

    I am ashamed to say I would never have believed someone who said they couldn't walk for 3 minutes every day and improve their health and conditioning by adding a minute a week to that regimen. Hell, even 6 days a week - take a day off - and it would still work. I would have never believed it if it hadn't happened to me. Over and over and over and over again. It took me over 18 years to get serious about pacing and wrapping my head around the idea that strict pacing might actually allow my body to heal.

    So, I guess I'm finally learning compassion for those who have doubted me, rolled their eyes and offered the stupidest suggestions for a "cure". I finally have a doctor who came right out and said he believes CFS/ME is a physical illness and a nurse practitioner who started to suggest exercise for a blood sugar problem and then backed off, saying, "oh, that's right, you can't exercise". I was so shocked tears came to my eyes. She gets it!

    I still don't know how to handle these situations gracefully. The last time it happened, a "friend" sent an article she'd stumbled across about some kind of intestinal parasite being the cause for CFS/ME and forwarded it to me. I hadn't heard from her in years and I shot back a nasty e-mail about doing some research about the current state of the science before she presumed to offer me "help", attached references to some of the articles on this site and told her to take a hike. And I still don't feel bad about it. Like I said, I could've been more gracious, but all I had the energy to deal with at the time was eliminating an annoyance from my life. I didn't have the energy to try and make her feel good about it too.

    No sage advice. Just adding my voice to those who have been in this boat and have an intimate familiarity with the layout. It sucks, but to quote one of the speakers from the discussion about happiness, "I won't let go until I've found the blessing." Compassion has to be one of the lessons, I'm thinking. But I think another lesson is honoring your own boundaries and letting go of that which not serving you, even when it means relationships. We can't fix other people. And honestly, it's exhausting and somehow self-defeating to keep trying to convince anyone else you're sick.

    Dreambirdie - I loved what you said about nature. My husband brought me home some geckos to take care of when I was at my sickest and bedbound due to vertigo among other things. I would never want to have one confined like that again, but at the time they brought me such peace and enjoyment. I was so sick that their silence was soothing and their wildness and lack of need for my emotional support was freedom. I had forgotten about that until just now. It was a very loving thing for him to do.

    Crikey - I forgot what this thread was all about. Sorry to ramble.

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