July 4, 2019 Enjoyed my morning, ready to keep moving

I enjoyed walking around, looking at booths for our Annual Deerfield Family Days with Ron & both my daughters :-) I handled the ...

Archive for December 2015

December 30th 2015 One day at a time...

NOTE: Please copy and paste into Google Translate to listen if needed.

I'm don't make New Year's Resolutions.  I'm more into the idea of reflecting on what I'm actually doing, assessing and tweaking as necessary.  I've said recently that my rehab is clearly a very long term deal, meaning not months but years.   That means I have to take to heart the expression "one day, one step at a time," and focus on what I'm doing each day.  As long as I'm doing that - not getting too caught up in the "what ifs" of exactly how long this "long term deal" is gonna be - I'll be OK.

So, if it's really one day at a time, I asked myself "what do I actually DO each day?"

This is what I came up with:

Rehab exercises - a bit less on days I have either VT or FT, or I actually do something special, but I still do something

The only other self-care item I'll mention is that I rest every day in the early afternoon, and take breaks during the day as needed

Make sure I play my flute a little bit every day

I'm trying to make a point of writing something each day - it doesn't need to be a lot, and it doesn't have to be profound - I want to get my brain working in the writing department every day

Hopefully I have an audio book I'm listening to so I have something interesting/fun/entertaining/whatever to listen to each day

Listen to - and post on FB - music every day.... I typically actually listen to more than what I post

Hopefully find something interesting/fun/whatever to share/post on FB and connect with one of my FB friends - I need to limit my online time due to my disorders

Generally I have some housework to do, which might be laundry or cooking - it could be something else... I don't enjoy the housework (and there's some stuff I'm unable to do), but hey, it's gotta be done, and actually a good thing that I CAN do some of it

Talk with my husband, as well as my younger daughter... I get to talk to my older daughter when she's on break... otherwise, it's mostly a bit of FB chatting with my older one

Take a walk every day, typically with my husband, and occasionally with a daughter

There are some things I do that are not every day (i.e. attend monthly Youth Education Comm. meetings for our congregations' Sunday School), but I really needed to see the basic stuff I fill my life with every day.  Post my disorders, when I'm feeling down, I tend to feel like everyone else has a life, and I don't.  I can see from what I've come up with that though I could be doing better, I could definitely be doing worse.  And who knows, maybe I even forgot something.

Now to my readers with invisible disorders, I'd love to hear from you! If you're comfortable sharing publicly, go for it.  If you're not, you can pm me. How do you spend your time?  To those who post publicly, maybe someone will get some new ideas.  One basic rule - please keep this positive.  We all have our bad days, but as we move into the new year, I thought thinking about the good stuff I try to fill my life with NOW would help. 

Thanks!  And here's hoping everyone sees improvement in their health in whatever ways are needed... lastly, spread some kindness - it can go a long, long way.


December 24th 2015 Dealing with stress....

NOTE: Please copy and paste into Google Translate to listen if needed.

Everyone's got stress in their lives, but realistically, some have more stress than others.  I think it's safe to say that dealing with invisible disorders guarantees some days when the stress level - whether it's fear, anxiety, whatever - gets a bit high.  There are situations that are stressful - because of how I am challenged, how demanding something feels to me -  that simply are not typically stressful to others.  So I've been thinking about ways to manage. Not manage my disorders, but how to manage my stress.

As we continue to move through the holiday season, I think about holiday celebrations.  I want to participate when I can in celebrating, but celebrations are challenging, and somewhat stressful for me.  I think this is true for anyone with various invisible disorders - vestibular, functional vision, and mental illness just to name a few.  It's easy to get over-stimulated and overwhelmed.  I've learned that I can't be shy about making a request in order to make something easier for myself.   Please don't question me if I do - just believe me that I am trying to get what I need in order to take care of myself so that I am able to enjoy myself.

If I need to take a break, I do it and don't make an issue out of it.  This may mean telling someone that I need five minutes before doing something.  I've learned that bathrooms are my friend - they are often the only quiet space.  For those who need to make these requests, remember that there's nothing wrong with advocating for yourself - you are not being selfish - you are taking care of yourself!

Holiday season, which means Winter Break for students like my daughters, means that routines are more difficult to maintain.  However, for various reasons, I need to maintain at least the basics of my routines.  I try to the extent that I can, to be flexible, but I can't disrupt all of my routines in any given day.  Following routines requires less cognitive processing, and if I don't have to THINK as much about something, I have more energy for other things.  The structure, routines of my day also help me feel grounded because I know what to expect, and this reduces anxiety.  Routines are also what keep me on task with my rehab.  This is important, because if my body/brain gets unfamiliar with my rehab, I don't think my response will be as good.

Another stress management skill I've been thinking about is the concept of compartmentalization (I'll call it comp for short).  Comp - to me - is about being really focused thinking about something that's a really big, ongoing stressor.  You make an appointment with yourself - let's say for 3 p.m. for 15 min. - to think about something you need to deal with that is causing you a lot of stress.  If making an actual appointment doesn't work, I think you can at least tell yourself when something comes into your head, "OK, I'm going to let myself think about this for 15 minutes, and then I'm stopping, no matter what." 

Getting too caught up in THINKING about what I need to do, instead of actually DOING what I need to do is something that for me can be a stressor.  Thinking about rehab is good up to a point; problem solving when something doesn't work can be productive.  But worrying a lot about my rate of progress, or stressing out about when or how to do something is not positive. 

If I do make an appointment with myself, I might have jotted down a word or phrase that came to mind at some point, and then during my allotted comp time, I use that note to help me think.  During my thinking time, I might do some writing, to help myself stay focused.  When my time's up, I'm done.  Whether I've completely solved the problem or not, I stop.  Staying focused, and stopping even if I haven't solved my problem completely will take some practice, but I'll pick it up again during whatever I decide is my next allotted time.  I may also decide that I need to talk to Ann (VT), Joyce (FT), or my husband. 

Thinking about setting a structured time to focus on a big stressor made me notice something; thoughts come into my head fairly frequently that are connected to something I'm stressed about.  So the first step for me in this whole comp thing was an awareness of my thought patterns.  I think when we have time on our hands, our mind looks for something to occupy itself, which can be good, but can also be bad if we use the time for worry.  So I need to say to myself "later," or "not now," and then find something else to think about - or do something.  Listening to music, or thinking about something good (like my pets) is often a good way for me to re-direct my thought process.

Finally, I recently listened to a video about meditation, which is really - to me - about mindfulness.  The basic idea in the video is that it's actually OK - even good - for your mind to jump around when you meditate, as long as you go back to the meditating part.  Every time you reign yourself back in, it's good for your brain.  I'm not sure, at this point, if when I do my breathing exercises I am meditating.  But I do know that when I sit and focus on my breathing, even when my thoughts wander, I eventually feel more calm - my sensory system does seem to settle down.  Which means I'm less tense, less stressed - and that's really what I'm aiming for.


December 16th 2015 So what's my flute/rehab plan now?

NOTE: Please copy and paste into Google Translate to listen if needed.

I've said before that I know playing a flute isn't something everyone is striving for, but I believe that a lot of what I'm working on and trying to figure out is applicable for whatever kind of rehab goals people have. 

I feel, in a way, as if I need to approach flute playing as if I were a beginner. OK, not a complete beginner, learning to blow into the mouthpiece, but still very basic given how long chronologically I've been playing.  My brain needs to learn new routes, new habits that work well for me, rather than going down well-worn routes that did not.  I also need to do some reintegration post trauma - the trauma of getting sick.

So what am I actually going to try to do?

It isn't all about actually playing my flute -  some of the activities I do impact the skills I need for flute playing, so even if I'm not playing my flute, I'm still doing something that counts.  Standing and washing a pot, or looking through my local paper is relevant.  There's a lot of activities that incorporate important balance/vision skills. 

Timing matters - it occurred to me that I need to play my flute - or do anything challenging for that matter - when I'm fresh.  So I don't play when I'm getting tired.  Doing anything difficult when I'm running out of gas doesn't make sense; my brain's not going to absorb learning well when I'm tired.

Making sure I DO my rehab exercises - this means figuring out at least a rough schedule of when I do things.  When new things are added, I have to see what works for me, so I'll actually do whatever I need to do.   And some of my exercises actually make sense to do before I rest; sleep is the best way for my brain to absorb and learn these kinds of new skills. 

Joyce has commented that sometimes she recommends something and then her client doesn't do it.  Dr. Margolis has talked about this as well, and I've seen comments about this on FB groups.  When you get to the point that you can do your homework, you've really got to do it.  The good part about doing my exercises is that I feel like I'm doing something positive for myself, which is good since doing rehab is at least a part-time job.  In my opinion, it's more demanding than many paying jobs!

Don't go that route again - Back when I first started playing sheet music again, I tried to move forward too quickly.  Neurologically speaking, I have a combo of functional and not-so-functional skills, and my brain needs to get the message that new functional stuff is the way to go.  I need to build my reading skills back up, reworking what wasn't working well before.  I also need to rebuild my posture and VOR skills (this is partly about where my body is in space).  This requires some awareness so I can adjust when I notice something that doesn't work well.

Routines - I have, and still am, developing some routines which help me remember what I've done re rehab.   I'm also more likely to do my exercises with this kind of structure.  Even with breaks or pauses in between, it works better for me not to do all my challenging exercises at once. 

Teaching myself - a flute student often has weekly lessons, so I said to myself "OK, so you're your own student."  My goal is to put in one small bit of challenge once a week.  I may do the same challenging bit for a month - four times over four weeks - before I move on.  I don't know yet.  The way I see it, I think I can figure on at least one good enough day each week.  I don't need fabulous days, just good enough days. 

I'm not going to treat myself like a complete beginner, but I will do something that's basic.  This is frustrating, but I think it's the only way for me to be successful.  I'll need to be flexible re figuring out when to add in a new challenge, or when it's a good day to do that something. 

Curiosity - This is a tough one, but I'm trying to notice, be aware of how something feels, in more of a curious way rather than getting scared and anxious.  Getting anxious is easy, but usually just makes the situation worse.  If I can be mindful and notice something, then hopefully I can try to adjust.  And I might even notice something positive.

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December 9th 2015 I always come back to music....

NOTE: Please copy and paste into Google Translate to listen if needed.

Music, as anyone who's been reading my blog knows, really matters to me.  You also know that my rehab plays a large role in my life.  Rehab, for me, needs to be about more than moving more easily through my day.  That's why, I realized, I'm glad that I have a big goal to work towards - doing what I choose to with my flute.  I thought recently about possible goals I'd want to try to achieve, and all of them involve something that's a major challenge; doing more with my writing, possibly speaking publicly someday about some of what I write about, teaching flute again, or maybe something I haven't even thought of yet. 

I'm comfortable for now with what I'm doing with my writing, and the other possibilities are a bit fuzzy.  But playing my flute more, and teaching flute are crystal clear; I want these.  I want to pick up my flute, take out whatever sheet music I want, and play.  I still have a music stand out, with some music books on it - I've never been able to bring myself to put any of it away.  Rather than taunting me, I've decided now that that's a good thing.  I don't want to avoid sheet music out of fear or anxiety about what will happen, so my music stand will be my motivation.  And I want to welcome a student into my home, and see their eyes light up with excitement when they produce music. 

I have a decent singing voice - I can carry a tune - but I used to wish I had a better voice.  I think that's one reason I love the flute.  And when James Galway came on the scene, that helped.  He's an incredible flutist, but also makes his music accessible because he's fun, and has always performed a mixture of music, which I really like.  I also discovered that I'm able to make my flute sing; I can play the vocal line of a song, while I hear the song in my head.  I love the bell-like sound of the flute in the higher register, and the warm, resonant sound in the low tones.  So my love of the flute was born.

I developed hand problems before I got sick in September 2011 - I wrote about this in my piece "When my challenges really began...".  I ended up not being able to play my flute for about a year - that was a long year without music.  Of course I listened to music, but not being able to make music was awful.  I don't know how many of my readers have something in their lives that is like music is for me.  I think of the quote I've seen "music is the sound that feelings make," but it's more even than that.  I love that music is a universal language; it speaks to everyone, touches everyone, connects people and can break down barriers.  And yet it can also be very personal, something just for me - or whoever is filling a room somewhere with music.

I'm been rethinking how I approach this goal; what pieces, what skills I need.  Acquiring the skills is the issue - there's not much difference between reading one page of sheet music vs. three.  That's a question of stamina.  A lot of what I need are skills I'm already working on - spatial (VOR), eye gaze switching, multi-tasking - but I need to break them down a bit more.  I am now working on exercises that help me to do that, and then help me to build those skills.  That's the job of Joyce and Ann and Dr. Margolis, with input from me.

I hope that everyone can find something to be passionate about.  Again,  having something of my own, that I care deeply about, to work towards is a good thing - I can use it to motivate and energize myself.  If I didn't have something, I think it would make rehab harder, more arduous.  Not that working towards more ordinary tasks is bad - it's not.  Playing my flute more, and hopefully teaching again someday are NOT the only things worth working towards in my life.  But since my rehab is clearly a very long term deal, having a goal that pushes me beyond the regular tasks feels like a good thing.  And it really is true that journeys start with a single step; for me every effort I make, all the FT and VT exercises that build on each other, every time I notice something different, all of this that helps me work on something is a step, even if it's a very small one.  It's like every single thing I work on, every note I produce is getting woven into an ongoing song. 

NOTE: Looking back five years - how long ago I made my last recording -  I like some of my YouTube videos better than others, but I thought I'd share a link here.  Have a listen if you'd like - let know what you like :-)


December 2nd 2015 Reflecting on my rehab, my future, and my flute....

NOTE: Please copy and paste into Google Translate to listen if needed.

I'm 54, which I don't consider old.  I have one daughter in college, and one who is a senior in high school. So my mind drifts to what I'm doing with my life.  I don't want to let my disorders define myself and my future, though I want to be realistic.  I recognize that I'm fortunate to work with an excellent OT who is trained in Feldenkrais Therapy (FT).  My FT has, and continues, to help me tremendously.  Of course, my vision disorders  - for which I do Vision Therapy (VT) - are part of my picture, intertwined with my MAV, and significantly impact my life.  VT works, and I'm committed to working with it, though my middle aged system doesn't change as quickly as a young child's does.  I'm encouraged whenever I see posts about someone my age or even older who is doing VT and seeing improvement - that's pretty cool!  

I wrote a piece back in July about my goal of getting back to teaching flute.  I've been thinking a lot during the last few weeks about that.  It's been about a month since I had a significant setback - a setback that required me to pay more attention to my pacing.  I've been remembering when my goal was to take walks again.  I started out walking down our driveway - it's kind of long - and then back to our house.  After a few days I walked the driveway plus past one house, and then back again.  After a few more days I added another house.  Eventually I could walk an entire block and back again, but it took a long time. 

I think reaching any of my goals, but in particular flute teaching, is like walking.  Each piece, each skill I need to re-learn is like walking past the houses.  The big difference is that each step is going to take me more than a few days.  That's one of the realities I'm realizing; how long my VT and FT rehab will take, and how much effort, and commitment is involved.  My rehab is one of, if not the, hardest things I've ever done.  My VT and FT move me forward, but sometimes I don't understand or realize how doing something will challenge me until I start moving towards it. 

I know that my future is - as is anyone's - somewhat unpredictable. I've said before, and I'll say again - I wish I had more answers.  Part of me thinks "well, make your own answers."  To an extent I can do that, by putting out effort and building - or rebuilding - my tool box of skills.  I don't know if this journey I'm on will have a distinct end or plateau, a point at which I'll say "OK, I'm good with where I am."  Where will I be in a year, or even six months?  All I really know is that I'm committed to working to improve.  Ann is good at being my cheerleader and pointing out when I do something I couldn't a few months ago, as is Joyce.  I actually realized on my own the other day that I did something I wouldn't have been able to do a few months ago.  Recognizing that was, to me, as valuable as the exercise itself. 

Given what I now know about vision, it seems appropriate to me that that word has (at least) two meanings - how we process info, and a picture of where we want to go. I haven't decided if I want to perform on my flute again, or if how I reach the public will now be through the written word.  I love to write, and I'm grateful that people are reading my words - and that VEDA helps me to reach people.  But I still wonder about the performance part;  I have very mixed feelings about performing.  I love playing with other people, but I DON'T love how most rehearsals are done.  But playing with other musicians in an unstructured setting - that's a different story.

Sometimes I think I need to simply stop thinking, and just live.  Stop thinking, get out of bed, and start moving through my day.  Find out from the internet - and Ron - what happened in the world around me.  Stop all of these questions floating around in my head, do what I need to do.  Do some writing, do some of the ordinary tasks that make up a person's day.  And for a few precious minutes, quiet my mind, and play my flute.  

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