i understand every word of this… and though Fiona puts me to shame in the amount of “life” she seems to be “living”, and in our diseases -rare but different… yet i KNOW the story…i LIVE the story…and at times i am allowed to HATE the story… X
Life feels like pretending a lot of the time.
Pretending to be sociable.
Pretending to be capable.
Pretending to be healthy.
Everybody else is back at school and I’d hoped I’d be back in my volunteering routines, but it’s not happening for me. I have a long to do list again. I can’t get my head around making phone calls or talking to people I don’t know.
I went to a PSP support group this week only because Ditzy came to the door for me. I did the driving and it was a long enough day. There were giggles and gossip and hugs and sharing. Always exhausting. Always worthwhile.
The next day I left the house again, and I pretended. I had on a colourful top and red lipstick, and apparently that’s all it takes to seem switched on. I chatted about rare disease and advocacy and how people coming…
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