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Sharing info is
important, but telling my story is important as well. It's difficult having invisible disorders
that very few people understand. I want people to have a sense of what living
with my vestibular and vision disorders
is really like; sharing my story is the best way for people to gain
understanding. So I share what I like to
think of as snapshots, glimpses into my world.
Sometimes those
snapshots really are like pictures, a moment in my life. The other day I was feeling overwhelmed,
thinking about the planning and scheduling I needed to deal with, and then I
stopped myself. I took a deep
breath. I said to myself "OK, slow
down. You don't have to think about all of this at once. One day, one thing at
a time."
I've written about
pacing (see my September 27th 2015 post). A big issue for me is the underlying
planning that goes INTO the pacing. At
times I'm amazed at how much I have to think throughout my day about details,
details that never used to enter my head.
I hate this planning that is now an integral part of my day, my life.
There's the household
chores. Do I have extra cooking to do,
and if so, when will I do it? Are there
pots to wash? Is there laundry to do? Sometimes
it's pushing myself to deal with something because I know if I don't, I'll
regret it later.
If I'm going someplace
new, that requires a lot of thought and planning. Food is important; I need to
avoid all my migraine food triggers. Depending on when I go out, I may need to take
a snack with me. I have to arrange
special meals if I actually have a meal in a restaurant. Even if I've done the event before (like
attending adult education at our Sunday School), I still need to make sure I'm
not overloading myself. Challenging
myself is good, but only up to a point.
So I'm constantly looking at the calendar, both for a single day to see
what I've got planned, and the overview of the week.
Sometimes I feel like my
schedule is too full of routines, but I know I need the routines. They help me feel grounded, help me feel like
I have a grip on what's happening.
Routines also - and this is really important - save me some brain
drain. If I don't have to think about
some of the basics of my day, I have more energy for more complex thinking. Cognitive processing takes energy, so I don't
want to squander mine. I want to guard
it carefully - my energy is precious to me.
The fact that my routines
are so important, that it throws me when they are disrupted, that it takes
something out of me to deal with the inevitable curve balls of life, the way I
have to THINK about all the pieces and parts.... sometimes fills me to
overflowing with anger, frustration and sadness. I want to scream at the world about the
unfairness of it all. Those are the
times when I hate my disorders.
I want to feel truly
healthy, to have a day when I don't have any neural fatigue, to feel a kind of
energy that I presume many in their 50's feel.
I want to have a day when pacing and planning, and planning and pacing,
just doesn't matter. A day when
challenging myself doesn't make me feel what is hard to put into words. Like my nervous system, my whole sensory
system is just done. My brain says
"nope, not processing anything else right now," and I have to wait
till the fog lifts.
Thankfully, I now know
enough about my invisible (sometimes even my own family forgets or doesn't get
it) disorders to understand what's happening.
I know what to do. I've been down
this road long enough to realize that eventually the fog DOES lift. So I pull myself together, and get on with
it. I do something that I know will
help, so that my brain drain/brain fog lifts.
I'm still tired, but can continue to move through my day. I remind myself that taking care of myself, all
the pacing and planning allows me to function.
To be productive - perhaps not the way I wish I could be - but
productive never-the-less.
well spoken..I love the routine part as I too have that in my life now. Its like a check off list that I have...I get one thing done...check...breath !!
ReplyDeleteThank you... I'm glad it spoke to you! and thanks for reading...
ReplyDeleteThanks for sharing. It was helpful insight in understanding the every day struggles. I related to a lot of what you shared! 💕
ReplyDeleteYou're welcome! Thank you for commenting, and I'm glad it had some meaning for you....
ReplyDeleteThank you for your words. Unfortunately, I can relate to almost all that you have shared. I teach high school math and after just half the day my brain power and energy levels are shot. People don't understand since they can't see the problem (like one could see a broken arm). There are many low moments for me when I need to focus on the good...my children. I remind myself how thankful I am to have them and how much they need me.
ReplyDeleteThank you for sharing... that must be hard to teach while living with your disorder... good for you that you keep going!
ReplyDelete