September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

November 24th 2014 Noticing what's positive

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

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