I've been thinking about
what the lived experience of having a chronic illness is like. The truth is
there's no one answer - there's probably as many answers as there are people
with chronic conditions. What I can share is my own experience.
I often feel like I'm in
this in-between space. I'm not nearly as sick as I once was - for which I'm
very grateful - but I'm also quite different. Different from the me
pre-illness. I've said that I'm much more functional at home, & that's true
- and I'm glad of that. But when I think of putting myself into some sort of
"out there" experience, my limitations rear their obnoxious little
heads.
No driving, limited
reading, limited screen time, very restricted diet are some the come readily to
mind. My ability to process info is definitely better, but I can still reach
overload.
In an ideal world, I'd
be able to take a writing class - I really do better in interactive
environments - but these days, writing classes mean a lot of computer usage. I
simply don't have the ability to do that.
Taking a class, or doing
any schooling, is simply not an option for me now. Getting anywhere for even as
early as 10 a.m. is very difficult for me. Getting up before 8 a.m. is
difficult for me, & it takes me about 2 hours to do my whole getting ready
routine, & feel like I'm into my day. This isn't a super practical time
frame, but it's mine.
I still need to take a
break in the early afternoon. Doing things in the evening is possible, but
challenging, & not something I do a great deal of. I don't handle socializing in crowds well,
particularly after an event such as a Shabbat service. The result is that my
social circle has shrunk quite a bit.
I no longer beat up on
myself when I can't do something - I remind myself I didn't choose my
circumstances. But it's still incredibly frustrating. I told Ron that I'd worry
about how it would be when our daughters were once again gone, each for their
final year of schooling, when it happened.
Now it's right around
the corner, & I'll miss them. And it makes me think "So what's my own life
like, living with my invisible disorders?"
Frustrating, somewhat
isolated, full of effort. I chip away in therapies, but it's hard to see
possibilities in the big picture sometimes. Very hard.
My therapist Christina would
probably say that my emotions seem to yo yo, or ping pong or whatever image you
want to use, a great deal. That's true. I guess that's part of my lived
experience. Dealing with a lot of difficult feelings, & also doing my best
to keep going, notice anything good.
I've realized that,
because managing our household became such an incredible struggle for me after
I got sick, regaining this ability took center stage. My life has become about
managing the household, managing my invisible disorders, and doing my therapies. This feels, to pardon the pun, out of balance.
I need to spend more
time each week on my various creative outlets, even if they are now solitary. More
piano, & more drawing comes to mind. I also need to push myself to make phone
calls more frequently to friends & family. I don't know what my future
holds. What I DO know is that I need to feed my emotional health more right
now.
Thanks, and thanks for reading!
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