Thursday, 6 July 2017

The zones of CFS / SEID

Here is a little diagram I drew to try to explain why managing this invisible, variable illness can be so damn difficult.



(I've been having an unexpected few days of reprieve: clear headedness, less symptoms and I seem to be getting away with a higher level of activity than I have for several months. I talked to my housemates and had a good laugh for the first time in a month, and I even played the piano for the first time since Christmas! In the past I would've thought "yay I'm finally getting better!". But now I totally don't trust it. It's like if a cruel jailor suddenly starts being nice to you. I know Im probably pushing the boundaries and falling for the 'do too much when you feel good, then suffer later" trick. That I'm probably in the green and purple zone, rather than an expanded blue zone. But still,  I can't stop the hope that this improvement is for real from bubbling up....)

11 comments:

  1. you nailed it! what did you play?

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  2. That's really well said. I love the "Zone of Doom." I think that will be a part of my own vocabulary from now on. "How are you doing Mom?" [mumbled answer]: "Zone of Doom."

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  3. You sure hit the nail on the head with this one

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  4. good one - zone of doom = veil of death in my speak. I used to feel the veil lift quite dramatically in the past. I got a true reprieve in between flares when I could act normally - not any more so there are less hopeful hopeless bubbles of joy and more gratitude for being comfortably numb instead.

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  5. You can only do what you can do when your body, the illness, allows you to do it- and you will pay for it no matter what.

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  7. Wow this is an amazing drawing!! May I have permission to use it as a graphic in my next vlog? [credit will be given]

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    1. No worries Marlies, go ahead :)

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