Living with my invisible
disorders is difficult. My psychologist,
Dr. Glad, tells me that effort counts, and I often think about that. My daughter Cara remarked recently, watching
me get set up for something, that "it must be so much work for you (me)"
(not an exact quote). There's definitely
an element of work, of effort, that I deal with. I use
hi tech software and hardware, to help me use my computer, and to listen to
audio books. I've talked about my
therapies, how I'm always working to make progress. But in
the meantime, I'm living my life right now, which means coping with my challenges. All of which is why noticing, and finding, the
good in my life is so important. To me noticing good things doesn't mean only special
things. Life is full of ordinary regular
stuff, and I don't think that's bad. I
remember when unloading the dishwasher, or hanging up clothing from the dryer
was a challenge. Actually doing regular
chores, projects, or whatever, can be a reminder that you can DO regular
activities.
I wish I didn't have to
think as much as I do about the structure of my days, and weeks, and sometimes
I get very frustrated that I need to.
But when I think about how I spend my time, I also try to remember to ask
myself "is there enough good stuff?".
Of course, good things can vary quite a bit from person to person. I don't just mean positive things that are
big, obvious, and easy to notice. I
also mean the little day-to-day small pieces that add up. I have a progress log that I started a little
over two years ago. I put down the big successes,
like that I was able to attend the high school performance of The Importance of
Being Earnest, or visit a college with my daughter. But I also try to put down small things, like
not needing as much of a break after dinner, or that looking from my personal
calendar to the one on the kitchen wall is easier. Does that mean that I can do these things
symptom free? No, it doesn't. But that's OK. If there is ANY improvement, it's still
positive, and I get to put it on my progress log.
A Facebook friend asked me
not long ago what I used for an anti-depressant, and I said "music!". Music is huge for me, a major positive in my
life. My favorite quote about music is
"music is the sound that feelings make." Playing my flute allows me to express myself,
and I make sure to play every day. It's always been meaningful, but is especially
so now because I remember when I couldn't play.
Sometimes I play a little bit a second or third time, and just listen to
the notes that float out of my flute.
Ann asked me if I need a lot of breath to play. I do, but it's different than when I do
mindful breathing to relax. When I play,
I think about how to breathe so that I support the tone so that the note speaks
the way I want. I want to be aware of my
breathing, but I'm focusing on making music, whether it's something from
memory, or just playing whatever notes or rhythm patterns fit my mood.
I also listen to
music. I listen during the day, but I
make a particular point of listening at night.
If I forget, and am too tired to listen when I remember, I feel like
something is missing. Music really is
food for the soul. I created a YouTube
channel when I was giving private flute lessons, which was fun - making the
videos as well as teaching. I don't know
if I'll ever go back to teaching, but I'm pretty sure I'll record myself again
and put it out there for whomever to hear, just for fun. Music is wonderful for private times, but
also wonderful to share. So, although
I'm not gearing up for something big like a performance or to attend a concert,
clearly music counts in the positive vibes column.
Writing is definitely another
positive element in my life. I first put
bits of my writing online a few years ago when I wrote about beginning to play
my flute again. I love the nuances of
language, how words can have slightly different meanings, add texture and depth,
carry weight, and power. When my writing
stirs up difficult emotions, it's still ultimately a good thing for me, sometimes
even cathartic. Writing is an amazing
process that helps me put the puzzle together, think things through, figure
things out. I really need to write, to
let the words tumble out. As I said in a
previous blog, I can't write a huge amount at a time, but I piece it all
together, bit by bit, layer by layer.
People and relationships
have always been important to me, so anything - in person or on the computer -
that connects me to people I care about is good. Of course spending time with my family is a
positive. Ron is generally quieter than
me, so I especially enjoy having conversations with him and seeing him
laugh. I'm grateful that I truly enjoy
being with my daughters. They've both
got a great sense of humor and make me laugh.
Due to visual problems, there was a time when I couldn't use Facebook at
all. I still have limitations, but being
able to connect with friends on Facebook, both to communicate, and to share
news and other info is definitely a positive.
I have days when Facebook is my only social life beyond my family. Many of the people I'm connected to are
people who I met at some point in my life, and I really am grateful for
them. It's also wonderful to be
connected to people I never would have come across without Facebook.
Dr. Glad always says, and
it's so true, that we all have limitations and challenges. And I need to remind myself of, and focus on
what I CAN do, and when I succeed. It's
impossible to feel good about myself if I focus on my limitations, what I can't
currently do. I'll admit that I felt
blindsided at first by my invisible disorders, and felt like "aren't I too
young for something like this?".
Fifty - how old I was when I got sick - seemed too young. But I got what I got, it happened when it
happened and I try very hard not to compare myself to others. I try instead, to pay attention, to really
notice anything I can count as positive.
NOTE: For anyone who wants to take a look/listen, here's
a link to my YouTube Channel - all recordings done three - four years ago.
https://www.youtube.com/user/cool09VIDeos1
