Do you ever ask someone with chronic illness how a month or a season has been, they respond by saying it was super busy or they were swamped, but have nothing new or exciting to share?
This happens to me a lot.
You know when we were all young and we looked at our grandparents and watched as their 'busy' days usually included just one appointment or one errand they had to run - maybe to the bank or to pick up a few groceries? That's me.
I'm your friendly neighbourhood grandmother.
What we didn't understand is that kind of life IS busy, just not in a young person's mind. Doing daily chores like laundry and dishes are often the only things I am able to do in a day. If I manage to do some stretching, run an errand, go to an appointment, or work on a personal project or hobby, that day is swamped and completely takes it out of me. When I say I've been swamped, it means all of my time has been doing something - including the recovery from doing other things.
For example: my November this year I was swamped. I had two major appointments, 4 additional appointments, a couple date nights, and I baked several recipes of cookies.
The whole month?
Yes.
If you combine appointments (then recovery days), baking (then recovery days), date nights (then recovery days), watched a friend's daughter play volleyball that was livestreaming, saw family, then days of managing to just complete daily household chores, that's a whole month gone. I didn't even manage to participate in many hobbies other than listening to audiobooks while I got chores done.
But the 'what's new' question always stumps me. Not much is actually new. I baked some cookies... ? Went to a Christmas market...? And most of my days are filled with medical information.. and I doubt those are the kinds of things people want to hear about constantly.
So my life is a paradox. I don't do much, relatively speaking, but I'm busy all the time (mostly in recovery mode).
I suspect that many people who have chronic illness are in a similar position. Some who are still able to work put most of their energy into being able to work, so not much happens outside of it except recovery. Some who have children put all of their energy into their families and keeping everyone organized and going to their own things. If they have hobbies or activities they can participate in and are passionate about, their energy is spent holding on to that very slim sense of self and normalcy.
The rest of life is so enveloped in appointments, 24-hour symptom monitoring, medications, flare-ups (expected and unexpected alike) and balancing what we want to do with what our bodies will allow us to do that life always feels overwhelmingly full.
With nothing to share.
Here are some of the cookies I baked! That's my news from a super busy month.