To listen: copy and paste into Google Translate, click on
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What an outpouring of response there was from VEDA
(www.vestibular.org) readers when my cognitive processing, mental energy piece
was posted! I try to respond to
comments, both on my blog site and VEDA.
However, with everything going on in my life, and the number of
responses, I thought I'd say "thank you" here, and follow up with
this.
So yes, thank you! To everyone who read and commented,
thank you. Also a big thank you to
everyone who shared my piece - sharing helps to raise awareness, so that's
really important. At first I was
astounded at the numbers - not thinking "wow, my writing's amazing!"
- but rather that this issue is SUCH a big deal for people with these kinds of
invisible disorders. It was also very
validating; clearly this is a HUGE issue for everyone - I am definitely NOT
alone. Then I realized it makes
sense. I think the whole cognitive/mental
energy thing is one of the hardest, if not the hardest part for me to
explain.
I'm aware of this right now, trying to explain to my
daughters why dealing with this basement project takes a lot of my energy. Going anywhere new is challenging, and being
in my own home is like being someplace new right now! Let me give some examples of this. I had to take a phone call from the Village
of Deerfield about the permit we need. I
don't talk on the phone a great deal, for a variety of reasons, and this was
after Ron and I had made a trip to the Village.
But my first thought when the phone rang was "where's the phone?". My computer station is still set up, but the
rest of the basement is strange - there's a huge mound covered in white plastic
just a few feet away. I found the phone,
but it literally made me feel off balance.
I also stood in the space behind our basement
stairs. It's been years since I did
that, and intellectually it made sense that I could walk back there, but it
threw me. Our basement stairs are
covered in clear plastic now, and it's very shiny. It also sounds different walking on
them. I know no one likes disruption,
and it can be stressful, etc., but this is different. I feel less grounded, and it's tiring. There's so much problem solving, figuring
out, and spatial stuff - it's a huge challenge.
I had a chance to go to the hotel with my daughters. Very helpful to see the space, look in the
kitchen, etc. - think about what I'll need to bring from home, what will be
different. Cooking with electric rather
than gas, computer set up on a kitchen table, the girls looking around figuring
out where our pets' stuff will go, and I mentioned where we'd walk Cosmo while
we're at the hotel. We also saw where
the laundry room is located. All of this
may sound inconsequential, but all the planning, and wondering what routines
we'll be able to figure out takes a great deal of mental energy. I was TIRED when I got home - so much new
info!
So yes, it's really hard, and yes, we have to support
each other because no matter how much friends and family care and want to help,
this is a unique problem. Not one ANY of
us asked for. It's not our fault - I
remind myself of that when I make a demand on a family member that I don't want
to have to make. We can get through
it. As lousy as it can be, we can still
live. I'm being put way out of my
comfort zone with everything that's going on - even down to the fact that I'll
need to practice using my ipad - VERY visually challenging - (with help from
one of my daughters) to be online because my computer will be packed, then set
up, then packed, and set up again!
So how am I talking myself through all of this? Reminding myself that though my first
reaction often is to feel off balance and/or anxious, my brain/vestibular
system can adjust. It takes effort, but
I can do it. Step back, breathe and
figure it out. Talk to people who
understand. Listen to music - this is
really important for my sanity. Do some
normal things while at the hotel - like cooking. Mix in some normal things even before I'm at
the hotel. And when it's all done, I'll
say, wow, I actually made it through!
For anyone who doesn't know, and wants to know more about
my story (and my rehab), please take a look at my About Me on my site - http://visiblepersoninvisibleproblem.blogspot.com/p/about.html
- there are also specific links to articles re vision, my Feldenkrais Therapy,
and if anyone wants to check out my YT channel (all recordings done prior to my
illness - haven't done any new ones yet :-) ).
