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Marathon Runner
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So, today I could have cried a river - and as it usually is with these things, it's a mix of pain, loss of hope, and inadequacy.

Then I remembered marathon runners. So much about their art seems to be about mindset. And there were two things that came to mind.

1) "Shut up, legs" - there are some sources of pain I can safely ignore, because they really aren't telling me anything new about anything dangerous - the marathon runner knows they can safely run all day if they wanted to - it's just the glycogen depletion talking...

2) Mindset. It is just so important. With the right mindset, athletes can "break through the wall", and find hidden reserves they didn't know they had. I think this is essential to know in combination with point 1 - if you know something isn't going to cause you damage. The pain doesn't go away with this, but the loss of hope and sense of inadequacy can. Mindset is a tough game for me; but I suppose that is why marathon runners are rare!
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  1. 1 year ago
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I can understand this analogy and sometimes I do have to just push through the pain knowing exactly why it is popping up. This applies to my use of pain medication as well. When I recognize a pain as common and manageable, I'll often forego the pain meds so that I don't over use them and render them ineffective. Some pain is just something I've learned to tolerate.

Then again, I've also been bitten by assuming pain was one thing and learning later that it was something else causing it entirely. I can generally nail down why I am hurting in a certain place at a certain time, but with cancer, any new pain can mean a wide variety of possibilities. What my doctor thought was hemorrhoids turned out to be a tumor. What I thought was sciatica caused by chemotherapy also turned out to be a tumor. And what I thought was a tumor in my lung turned out to be a benign cyst that had been there forever.

Basically, sometimes pain is nagging and you can learn to accept it and then ignore it, but other times your body is telling you something and you need to listen.
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DeboraJ
  1. 1 year ago
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I'm currently having to learn to stop pushing. I've been pushing most of my life against this disease without realizing it because I've never known better than frequent illness and easy injury since my too-early entry into this world. LOL! Does pushing to arrive too early count too?

Seriously, my body's at the point now that repairing itself is taking more energy than it has to provide due to multiple recent injuries and ongoing deterioration in such a vast proportion of my skeletal system along with the polyarthritis setting in at every previous hypermobile and/or injury site...now it is harmful for me to push through the pain.

I'm having the most difficult time with this and have been for a bit over 2 years now. And the difficulty comes from what Twigga said about losing hope and feeling completely inadequate...not to mention I just plain miss the activity. I was always an endorphin junkie type. Heck, my first response to what the docs had to say back in 2004 was to increase my activity and add a 2.5 mile run with an hour on the weight bench every morning BEFORE I headed off on foot for a full 10 hours of academic work, art classes and dance classes as I took on a minor degree halfway through a double major in art.

Now, now I'm trying to cope with the longest days in the world stuck inside, often "resting" in bed to give my bod a little extra energy to work with in the healing department. My fresh new career in teaching gone by the wayside, all my professional "friendships" also gone, zero social life offline, no physical ability to vacation or visit family or money to do so with since we're now trying to survive on one income and disability...don't even get me started on the humiliation of being on disability now.

So I'm trying to learn to "listen" to my body as Senan advises, but I'm so unsure where to draw that line between which is more important, my mental/emotional well-being and feeding the need to get out and move, or my physical well-being, which in turn kind of dictates part of the mental/emotional side of things in the long run. Lots of Spoonies through the years have said I'll reach my balance and learn how to meter my energy, but I seem to be failing at that quite horribly.

Totally open for further advice from anyone and everyone in the group on this issue!
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  1. 1 year ago
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I think it's a really difficult dynamic Debora. A marathon runner is only really good for one thing - running marathons. When you pick them out of that environment and ask them to do something else, something different, well... they will get pretty grouchy. When I think of myself only the context of health, I honestly can't think of a dream more pleasant than the same thing happening everyday forever until I end. With that, I feel I could manage my pain super easily, be able to discern the odd signals, and have spoons as leftovers - but what are the chances?

Instead I wake up early; before the rest of the house, so I can have some time to myself to be entirely autonomous and do the majority of my "listening to self" stuff. When others curiously come in to join me, that really wakes my dragon. But that morning time involves a certain amount of movement and also just sitting. Something to know is that the meter changes, ALL THE time. The "balance" is actually very dynamic with some conditions; bouncy even. I try and aim for at least 5 check-in points during the day where I can work out how I am doing (sometimes it's more, sometimes it's fewer - it's not about the rule, it's about the idea) and I try to change the tasks I have on my plate to match the condition. It has also helped me pick up on what/when/where I need to communicate with my partner for help, and when I can reassure them they don't need to be on standby.

I think there's a certain amount of selfishness that's just plain necessary. We need to know we're okay; and it can be really hard to supply our own needs for "feeling okay ness" as suffering beings. But 'aint that true for everyone? You've written really eloquently on the "IT" Debs - being the universe... There's a need to be fulfilled before we're ready to open up to the rest of the world possibly - the time-off from being pushed. And it's for the rest of the world I put on my marathon runner skills. Sometimes it's a pleasure; and sometimes it creates a fair bit of emotional stress - and it's on the "stress" days I get burnt up fast - I have nothing left - and just like you write; I need to go back and give my body a break - stop pushing.
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DeboraJ
  1. 1 year ago
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The entire game just changed over here in my court...

Seems I have no cartilage left in my ankles, knees, hips, and wrists...source of pain found.
Solution: Definitely DO NOT PUSH THROUGH the pain...it will now just start giving me more fracture issues.

Wow. While I'm good with having the new doc, I'm still trying to get this to really sink in. They literally sent me home with a list of "no-no's" that starts with: PAIN IS NO GAIN...just like that, in big black letters of warning.

yikes...

But at least they think there's a chance to stop the process from worsening or at least slow it down some and buy me a few more years on my feet.
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  1. 1 year ago
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Wow! That's a huge change Debora! That will take some time to process... I am so pleased you have a cause!
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DeboraJ
  1. 1 year ago
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Right Twigga? I really don't think it's all settled into my mind completely yet...
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  1. 1 year ago
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Many, many hugs.
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DeboraJ
  1. 1 year ago
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Thank you Twigga, I need them.
Test results came back and now something is gone wrong in my gut and my thyroid...will update as I myself find out.
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