Thursday 22 November 2018


I've been for a few walks now - on Friday and Tuesday I went to visit two different neighbours who both live across the street from the end of our driveway.  It was the first each of them had known that I was better, and their delight and excitement was fun but also quite overwhelming.  Each time the next day I struggled to get moving all day and didn't do heaps.  I wondered if that was because of being overwhelmed by those reactions, rather than the exercise itself.  So today I went for a walk where I basically went down the driveway, did a loop of most of the flat part of our street, came home and then did a loop around the house.  I deliberately avoided going as far down the street as the house of another friend who is home during the day, so she wouldn't spot me and get excited - I'll save that for another time (although she knows I'm better).  My walk was just under 10 minutes.  I also did some weeding and sweeping outside this afternoon but no overwhelming people stuff.  We'll see how I'm doing tomorrow!

In other news, I'm delighting in this gorgeous orchid Martin's parents gave me for my birthday.

And I was extra-delighted a few days ago to notice it's growing a second flower-spike!

It's one of two moth orchids I have: the other was a 40th birthday present from friends from church.  Unfortunately, whilst trying to train the new flower-shoot it was growing earlier this year, I managed to snap its growing tip off :-(  So I was extra-delighted a week or so ago to notice a new flower-spike growing from that stump :-)

These two orchids stand on either side of my bleeding-heart vine, which has sadly become infested by mealy bugs :-(  The internet advised me to wipe the bugs off with isopropanol then spray them with a dilute solution of sesame oil, lemon oil and dish detergent.  I've been diligently doing that every four days and yesterday only found around four new bugs, so that was good.  The spraying solution makes the room smell really nice, too :-)

This new life is good, but quite unfamiliar, too.  And I'm conscious, with all of gained, that I've lost something, too.  Over the years I've become comfortable identifying as someone with disabilities and, whilst I've never joined an in-person support group or anything, I've thought of people with CFS as 'my people'.

It felt weird and alienating the other day to come across this on Facebook:

I think the original source may be this.
I read it and felt sad for them, rather than affirmed that someone understood me.  That felt odd and even quite sad.  I've gained a lot, but I also no longer belong amongst 'my people'.

(I also think the person who wrote that statement badly understated 'fatigue', for all they were trying to do the opposite.  I'm struggling to name the feeling I now get when my eyes won't stay open as 'tired': it seems ridiculous to give the same name to that feeling and the feeling I've had so much of the time these many years.  How can it be 'tired' if I still feel so good?!  (Although what else can it be if my eyes won't stay open!).   The meme makes it sound like fatigue is tiredness-that-won't-go-away, but I now think my 'fatigue' was something only loosely related to the 'tiredness' I'm feeling now, and ever-so-much-more all-encompassing.)

So that's me :-)  Ka kite anō au i a koutou!

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