Thursday, 7 June 2018

Why "well done" is often not the right thing to say

I've been feeling a little bit better lately (I think partly due to a new experimental drug called ldn, and partly to a years worth of extreme pacing), so one morning last week I decided to try going to the local grocery shop on my own. 

It turned out that the music and all the people, the choices, the driving and walking, carrying the basket and being upright for so long was all a bit much, and I ended up sitting on the floor at the checkout, fending off people trying to help ("I'm okay, I just need to not be standing up"), and in bed feeling yucky and shaky for the rest of the day, with my groceries still sitting in the car because I'd run out of juice to bring them in. (Luckily it's winter so the car wasn't an oven). 

But hey, it was a bit exciting while it lasted. I got to choose a very nice, big cauliflower, a jar of my favourite lime pickle and some delicious smoked fish on a marked down special - an option you don't get with online grocery shopping. 

It really is great that I could even think about going out, as I've been mostly housebound for over 18 months. However there is one thing that I would like people to know about CFS. And that is, although I appreciate and recognize the good intentions behind it, "well done for going out Jen" is not the appropriate thing to say. "Well done" is the approriate response when I don't do silly things like that, where I overestimate my capabilities and push past my safe zone of activity. A more CFS -appropriate response is  "I'm so glad you were well enough go out. I hope you don't suffer too much payback". 

Unfortunately with chronic illness, a temporary improvement doesn't necessarily indicate the beginning of a linear recovery trajectory, even though everyone, including myself would love it to be so. People want to hear good news about my health. It's hard letting them down, when a temporary increase in capability is usually followed by a rotten flare up of symptoms again. 

I do think think it's good to test my boundaries in a small way, infrequently, but the willpower and challenge in this illness is in holding myself back from doing things I want to do, not in pushing myself to do any thing. CFS is distinguished from other illnesses by the fact that over-exertion makes things far worse, and can take months to recover from. 

I've really had to learn to curb my natural inclination to optimism. 


Ah well. In better news, I 
did recover from my exertion and was able to make a very excellent tandoori cauliflower curry later that week. 
And I've signed up to a local veggie box delivery scheme, who brought me a very excellent celeriac among other things. And I'm lucky enough to have parents and friends who still buy me groceries too. Things are okay. 

Here is a picture of the celeriac I drew. 

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