it’s THRILLING HEROICS:30, y’all

April 10, 2008

progress!

Filed under: health — jayangel @ 11:56 am
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Even though it was a sucky phone call cancelling my appointment at the CFS clinic (ugh, I hate letting people down, and I should have phoned weeks ago but I just couldn’t get myself organised for it) I really did like getting to answer the question “Are you moving to Newcastle permanently?” with “Yes, soon.”

I’m going home.

In related awesomeness, and helping me not to feel so bad about being a no-show; this year I’ve been planning everything really, really carefully, making and sticking to a strict pacing plan, sticking to the 70% rule as much as I can, saying no to things I really don’t have the energy for (even if I maybe should do them, like the CFS clinic; it’s just that right now, it would do more harm than good) — and it’s seriously paying off. I may not have much more energy readily available, but I’m storing up spoons and it’s taking me less time to recover from things. I’ve managed to catch the downward momentum and start hauling it into the opposite direction; it takes a hell of a lot of time and effort, but time is what I have and effort is what I’m willing to put in. The trick now is to keep up the round-the-clock resting, even if I could do something. Your brain is hardwired into “I feel okay! Yay, I can do things!” but this leads to relapses. I’m not going to use up all my spoons as soon as I have them, tempting though it is. I don’t feel okay yet, but I feel a little better, and a lot more positive, and I immediately start thinking things like “Hey, I could go get the DVD player from downstairs and set it up here! I could watch Hard Core Logo!” — shiny things, instant gratification, but bad idea. It’s taken me a long time to develop the patience and foresight to take myself aside and say, “No; you could go and get the DVD player, but if you don’t you’ll have more energy later. And Dad did offer to bring it up for you, so remind him to do that.”

This is working. It doesn’t seem like much from the outside, but I can feel the difference. As long as I keep sticking to my plan, deal only with the things I have to, and cut myself some slack over the ~~abandonment complex~~ I seem to be developing (I have lost touch with so many people I care about, and they’re dropping like flies out of my life, and it makes me want to gather everyone who’s left and holding them tightly), I will continue to improve — very, very slowly but steadily — for the forseeable future. That’s the goal. It’s in sight.

4 Comments »

  1. The abandonment thing is understandable… I think that many people experience the fact that a lot of friendships will not necessarily turn out to be for the long haul, or will not turn out to be the kind where there is frequent contact and stable support. For us it’s emphasised because of the kind of lives we’re living, and this is particularly true for you because you’re not getting out right now.

    But I’m so impressed with the improvements that you are making, with the sheer level of control that I know you need in order to resist moving to fast. It’s the definition of patience to be able to hold back and say “not yet, but I will be doing those things in time.”

    ::hug::

    Comment by Angeline — April 10, 2008 @ 3:43 pm | Reply

  2. Hello, darling. This is Jenn, using my as yet inactive music blog. I’m so pleased you’re doing better- my friends Penny and Kitten have CFS, and since talking to you and to them about this I have started threatening people who call people with CFS “lazy” or “faking” with swift and terrible pwning. I adore you, and I sympathise about worrying about people leaving. I make friends like I’ll still adore them in 50 years, and that holds true. It takes a lot of work to get rid of me.

    Comment by Doctor J. Sparkles — April 11, 2008 @ 3:28 am | Reply

  3. Excellent! *hugs, so tightly*

    Comment by annon-of-rhi — April 11, 2008 @ 10:59 am | Reply

  4. How do you know what 70% is though?

    r

    Comment by rickybuchanan — April 13, 2008 @ 12:32 pm | Reply


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