6 May 2016:
What does ‘extreme fatigue’ really mean? So you’re just really tired all the time? (no…)
“She then asked me out of the blue what it felt like to have Lupus and be sick…. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.”
This is a little story I was first introduced to years ago by my aunt, long before I even knew I had Lupus. It has become a sort of anthem for many chronically ill people, not just those with Lupus.
It’s a simple read, but worth it. It doesn’t take long.
https://www.lupus.org.uk/patient-stories/patients-stories/111-the-spoons-theory
On a normal day, when my Lupus is well controlled, I have a lot more spoons– but I’m still counting them. A bop (dance) could still knock me flat for days after, because I have to spend so many spoons on it. But when I’m in flare, like I am right now, I have SO FEW spoons, it can be a choice between showering that day or cooking myself a meal.
That’s why I am so grateful that my parents have come to stay. They’re helping out so I can save my spoons for the important stuff like my PhD work. Happy Friday everyone and have a restful and restorative Shabbos if you observe!
Miranda Hart, the wonderful, funny actress who my American friends know as Chummy in Call the Midwife, recently made a video to raise awareness of chronic illness during lockdown. She also speaks about the fatigue that chronically ill people face:
This Isolation Life 