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...

Archive for February 2017

February 25th 2017 Cats, and me...

By | Published Saturday, February 25, 2017

I've been thinking about cats and dogs lately.  Specifically watching my cat and dog.  I have no hope of being like a dog - so completely in the moment - but what about a cat?

Cats are in the moment as well.  Maisy - my cat - likes her night time snack of canned food; she waits for it, trots down the hall and happily eats.  At that moment, that's where her mind is.  Or she basks in a sunny spot, then licks a paw, spends some time chasing imaginary who-knows-what, and goes back to napping.  But she's also contemplative - she's a character, but also has her thoughtful, cat-like moments.  "Hmmm, should I jump on her lap for an ear/head rub?"  She needs to be in the mood for a good ear rub - which she LOVES - or has no interest whatsoever in attention.

So what about me? I am contemplative as well, but I'm definitely a "doer." 

Work - I haven't ruled out teaching (very part-time) flute lessons at some point.  But paid employment is not in my future, beyond that.

Social/political activist - To go just a bit political for a moment, I didn't vote for our current president - which was NOT simply due to partisan reasons - but I'm not going to go the social/political activist route.  No protests, marches, e-mailing, phone calling, attending Town Hall meetings - nope.  I need to leave that to my more able bodied friends.

Possible public speaking re health issues - perhaps someday, but there would be a lot of challenges for me, so definitely not now.

Music - I'd love to play with other musicians.  Hopefully someday, but realistically not any time soon.

Health activist - I write my blog - obviously - but wish I could do more.  I don't make videos (though hopefully will post another flute recording eventually), but rather rely on what's available on YT.  I post the WHO petition occasionally, which is something, but again wish I could do more.  I'm hoping to help VEDA with the Dizzy Dash project - we'll see how that goes.

So honestly, this leaves me frustrated.  And I think of two things -

Social - I'm a fairly social creature.  I like, and have always needed downtime, but I also need people time.  This is much trickier now than it used to be, due to my limitations.

Thinking time - yes, I need thinking time.  I like having time to think.  Even when I was healthy, I didn't like running around busy from one minute to the next.  It's important for me to have time to figure out what's difficult or challenging about participating on FB, or writing my blog posts, or  doing a household chore.  But thinking, and thinking some more stops being helpful. I have more than enough time now. 

I always try to problem solve, so...

Meditating - I said, I've been thinking about Maisy. That maybe I need to try to learn to, at least figuratively, bask in a sunny spot and NOT think.  Just exist, just be.  Since I'm NOT a cat, meditating might be the way to go.  I know there's a lot of research indicating the benefits of meditating.  I've been told that the key is to bring yourself back after your mind has wandered - that bringing back part, discipline of mindfulness - is what meditating is about.

Taking pleasure in small things, moments.  I'm not as good as I'd like to be at taking pleasure in really small stuff.  But maybe I need to get better at that.  And take my small moments of happiness, or at the very least feeling good, instead of how I wish things were. 

What I AM able to get done is good enough, for me.  I need to reconcile myself to not getting as much done.  Certainly not the way others - and I - USED to think about getting things done.  Adjust my expectations to recognize that what I've done during a day counts, for me.  I realized only recently that deep inside, I think I still measure myself by that "what did you get done today" yardstick.  This is really unfair to myself, given my vestibular and vision disorders. 

For me, being more like a cat - thoughtful, but also in the moment - isn't so easy, but I think I might be more at peace.



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February 8th 2017 Two things on my mind...

By | Published Wednesday, February 8, 2017

Thing Number One - in December I wrote about four activities that I can do that are meaningful - audio books, internet (FB and e-mail), writing, and music/flute.  These are not equal in time spent (music isn't a lot of time), and I can't over-do it on the computer.  So, I'm thinking, thinking, about what I can do that's not on the computer.  The "what I can do" is the tricky part.  It's ok to come up with something from which I need to take a break - that's a given.  So I'm looking around our house, and thinking.**

Thing Number Two - my last piece was about my Vision Therapy (VT), and how to progress.  One of the things I talked about was motivation; how to make home therapy meaningful, so that it doesn't feel so tedious.
I decided to come up with a list of activities that I could print out, and refer to - I'm thinking this will help me stay focused.

1) Using a young reader's book - I have, for example, some Henry and Mudge books that work well for this.

2) Letter squares - these are from VT.  There are different activities I can do with these, and this could actually be fun.

3) Using my iPad

4) Looking at sheet music

5) Using the piano keyboard - I've found that because of the "stripes" of the keys, and positioning, this functions as an exercise on multiple levels.

6) Playing my flute a bit more, various things I can try - spatial, visual - I have to remember this is good for me on multiple levels.

I may come up with some other stuff, but this is a decent start.  Not everything - obviously - is a new activity.  But it's about how I think about it. When I use my iPad, I can listen to audio books, so once I get past the log-in, etc. this is an activity that takes more time.  The other activities, for now, do not take more than a few minutes.  However, they all feel better than "doing exercises," which is, I realized, important with long-term rehab.  Everything is connected, builds on everything.  So I'm going to see how it works if I put in a little bit here, and a little bit there.  See how I can structure my rehab; the self discipline can be difficult at times. 

I'll still do regular, titrated exercises.  And I may have days when I can't do much that's on this list, but hopefully there will be at least ONE thing I can think of that I'll be up to doing.  I don't want to feel fragmented, which is a potential problem with too many little bits, so I'll have to see how to put this all together.  Hopefully at the end of each week, I can look back and say "yes, I did this," or "yup, I did that."  Each little bit counts.  The most important thing is for me to remember that all of this helps me move - slowly to be sure - forward.  Forward towards what is currently missing for me.  Can't get more important than that. Especially since moving forward ties in, I think, to Thing Number One.
**After posting this, I realized I could spend more time listening to music.  I don't have to actually WATCH every YT video, because I don't have to be facing the screen.  I also have a lot of John Denver podcasts (my FB friend Willie does a great job with these), and I'm not even missing any visuals if I don't look at my computer.  And of course, I also have my trusty iPod.  
Listening to music is a start; not overdoing it on my computer is a challenge, but it's important.



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February 1st 2017 Vision Therapy; how to progress...

By | Published Friday, February 3, 2017

I saw my Developmental Optometrist, Dr. Margolis, recently for what he calls Progress Reports.  He asked a lot of questions, and got a good sense of what was going on with me.  He is, I should add, a terrific doctor.  I wanted to share a few things that I got out of my consult.  Sometimes I think of my progress like a toddler learning to walk.  Stumbling sometimes, holding on when needed, but every little step matters.

Basic positive gains - Dr. M. said he thought I handled the actual exam better than in the past, which he thought was a positive, as do I.  I still needed breaks, but that's OK.  He also said my midline and body mapping were better. 

Motivation - I told him that home therapy can feel tedious, even though I completely understand how important it is to actually do.  We talked about ideas to help me feel motivated about my home therapy - make it feel more meaningful.  How to integrate it into my day, and said he'd talk with Ann (my VT) about this. 

Positions - Dr. M. and I talked about doing home therapy lying down - something Joyce (My OT who does Feldenkrais) has also talked about.  Lying down takes away the compensatory habits of sitting and standing.  I don't just mean conscious habits, but rather ingrained, neural muscular habits.   Lying down also means I'm not dealing with the element of balance/multi-tasking required for sitting or standing.  I'm thinking more about this, will talk with Ann and Joyce, and see where I go with it. 

Less is more - Dr. M. briefly used a yellow filter lens, and noted that it made a difference for a spatial activity, commenting that because I'm sensitive, even a small amount of something can make a difference.  I also realized that since a small amount can make a difference, AND allows me to pay more attention to what's happening, I actually sometimes get more out of doing less.  Obviously building up to doing more of something is a goal, but I think that part comes naturally.

Goals - he asked me what my goals were, and I said it was hard to choose, but that I'd go with being more social, and doing more with my flute.  My initial thought was "how on earth can I choose?".  But music and social life continue to be really, really important to me.  There are other things that I want - i.e. reading - but technology doesn't help with socializing or music as it does with reading.  So thinking back on what I said, those goals definitely top the list. 

Pacing - Dr. Margolis reminded me of the basic rule, which is that if I need to recover for a few minutes, that's acceptable.  In fact, I can expect that any home therapy will require SOME recovery time.  He didn't specifically say this, but I think if I need no recovery time, I'm not challenging myself. However, needing an extensive - say half an hour or more - recovery time is not good.  That means I've pushed too much, and probably feel lousy.  The strange thing is that for me at least, there isn't sort of in between - it's either "wow, I really over did it, and now I have to chill for way longer than I want and this sucks," or after a few minutes, I can move on. 


He commented that "if you change nothing, nothing changes." Simple but true.  Once I learn something through VT (or Feldenkrais - FT - for that matter), I want to stick with it.  It's hard to on purpose make myself feel uncomfortable, given that I still feel disequilibrium every day.  Making myself feel that way, or feel dizzy in order to make progress sucks.  But I understand that I have to tolerate some symptoms.  That is, unfortunately, the nature of my rehab.  So I have to make changes, because having nothing change isn't acceptable.

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