November 5th, 2018 - updated 10/19 - trying to describe my MAV experience

I wrote this to help my parents & Ron (husband) understand my MAV - Hopefully this info will help someone out there, so I'm shar...

Archive for August 2016

August 26th 2016 Move through the anger, to figure things out, and DO....

To listen: copy and paste into Google Translate, click the "speaker" icon.

Kids are "supposed to" move on.  Kids moving on is an experience that resonates with so many parents.  But when people say it's supposed to happen, I often think "*I* wasn't 'supposed to' get sick, but I did."  I don't walk around all the time feeling angry about getting sick; I think that spending a lot of time thinking about what my life was "supposed to" be like as my daughters grow up is pointless.  Focusing all the time on anger isn't healthy, and would be a waste of my precious energy.  But ignoring my anger completely wouldn't be healthy either.

I DO get angry sometimes.  Angry that I got sick - a kind of sick that can be managed, but is chronic.  Angry that for various reasons, I didn't get diagnosed and treated for my vision disorder until 1 1/2 years after I'd gotten sick.  Angry that because of my invisible (yup, I often look totally fine) disorders, I have significant limitations.  Some would use the word "disabled."  People often prefer to use words like "challenged," but sometimes the word "challenged" isn't how I feel.

There are times when people jump in with well meaning advice, which either doesn't work for me, or I'm simply not ready to hear.  I want to have a sense of humor about my situation; I know laughter can go a long, long way.  I want to have this transition figured out.  I want to have all the answers, and if *I* don't, then my therapists should.  I'd love it if there was a book out there titled "Coping with normal life changes while living with vestibular and vision disorders," but it doesn't exist.  

Info about dealing with kids moving on never takes into account special circumstances - that would be too complicated.  Each person's life, certainly with these kinds of invisible disorders, is too individual; there's no blueprint or manual for my experience.  So I have to write my own manual, as I live it.  I knew this transition was coming, and yes, I've given it thought.  I've talked about it with my psychologist.  My problem is that coming up with answers is very - well - challenging. I know I have to experiment. 

Once I've given my anger its' due, then I think "OK, I DO need to figure this out, so what can I do?".  In a previous piece I wrote about what is important to me now, in more general terms.  Now thinking more specifically, I end up thinking about social stuff, reading, and music. 

Reading - I realized once I had trouble reading - which involves a variety of skills - how many words swirl around us every day, in this incredibly visual world.  I've made improvement, but I want more.  There are many pieces to reading.  Besides home therapy, I can take out and work with children's books from when my daughters were young. 

Social stuff - I need to stay connected to friends, not just online (primarily through FB), but also in person via our congregation. I didn't have that this summer, and I missed it. 

Music - of course, there's music.  Always music.  Ron needs to get our electronic piano plugged in so I can experiment with that.  I know I've gotten better at musical "doodling" on my flute, but I want to play for longer, and I want to play a page of sheet music.  I don't think that's beyond my grasp, if I'm prepared to put in the effort, and keep trying, keep exploring.  

I admire so many of the Olympians.  I believe that I - and anyone living with invisible disorders, whether you're doing rehab or not - can learn from them.   Olympic athletes have tremendous talent, but they ALSO work incredibly hard, and don't allow setbacks to completely derail them. 

If I can feel like I'm making progress 75% of the time, I'm good.  I'm going to have bad stretches.  I'm going to have to revisit stuff, have to try again to come at something from a slightly different angle to see what works.  Sometimes in a VT or FT session, Ann or Joyce has to dial something back a bit, come at something a bit differently.  I'll have days when I'm super frustrated, or sad or angry, and that's OK.  I can't let the bad days keep me down, keep me from exploring and trying.  Just as I always tell my daughters, I've got to take it one day, one step at a time.  Worrying about what's "supposed to" happen for me a month from now, or whatever future date I pick, won't do me any good.  I need to figure things out, bit by bit, and then DO.


August 13th 2016 Rehab isn't static....

To listen: copy and paste into Google Translate, click "speaker" icon.

According to the calendar, summer's not over, but with my daughters off to college soon, it feels like summer is rapidly coming to a close.  So I thought about what I did this summer.  Though I'll admit I don't want to do it again anytime soon, and I needed extra help from my Feldenkrais Practitioner Joyce, I managed a stay of over a week at a hotel.   Once home again, I went to a total of three stores - that's a LOT for me - with my daughters.  I spent some time at the Chicago Botanic Gardens with Ron and the girls, and last but not least, I've dealt with house construction projects (unfortunately not quite done).  I took care of myself, and managed to do all of this without having a setback. 

My stay at the hotel, and the really intense home project this summer were too challenging.  I felt overloaded, but my take away is that if I really need to do something REALLY hard, I'll find a way to do it.  I don't like feeling overwhelmed and overloaded, but taking on new challenges can be good.  It's a question of cost vs. benefit.  I did not go to the Ravinia Festival (a large, outdoor concert venue) this summer.  After several attempts over the last few years, I decided it's really hard, and the benefit isn't worth the cost.  The Gardens work well for me.  Challenging but worth it.  That's how I want to approach getting back into my Vision Therapy at home, and tweaking my Feldenkrais home therapy.  Challenge that's worth the pay off.

I didn't do nearly as much VT this summer as I had been doing.  VT, though very helpful, is a strain on my system.  It also takes cognitive processing resources I just didn't always have.  I was encouraged though, that when I DID do a VT session, I hadn't lost ground - I was able to do difficult stuff.  Which makes me think about the fact that if you want to make progress in any kind of rehab, you have to challenge yourself.  If you get completely comfortable with where you are, you won't make progress. On the other hand, if you push too hard, or too fast (or both), you can overload - your brain can't absorb the new so that doesn't work.

The trick is to find what some refer to as the "sweet spot" - like Goldilocks finding the chair, cereal, whatever, that's "just right."  Easier said than done.  It's not really a "spot," and I think it shifts and changes.  It's a gradual - sometimes more, sometimes less - incline. It's about finding the correct titration of, and mix of exercises.  It's nice when doing an exercise isn't too difficult, but a certain level of difficulty is necessary.  I need to always be open to changes in my therapies.

Joyce always says "if you're bored, if you're not noticing anything, you're not learning...".  Dr. Margolis, who supervises Ann (VT), always says that rather than doing one big chunk, it's better to do a few minutes at different times during the day.   So for me, I need to listen to my body so I know when to stop vs. when to push just a little bit further.  And how many bits I feel up to that day.  I need to communicate with Joyce and Ann about all of this. 

For me, doing rehab means making myself temporarily feel bad - maybe feeling off-balance, maybe dizzy, a headache. I don't want to feel bad for an hour, but needing a few minutes to recover is OK.  I don't like it, but that's an acceptable time limit.  Of course, it's also a matter of how intense the reaction is.  Falling down would not be OK.  Feeling so ill that I can't continue, and need to lie down right away is also not OK.  But needing to sit with no light or noise for a little while IS OK. 

I typically need a few minutes at the end of my VT sessions - even if I've paced myself during the session - to sit quietly before I leave.  The same is true for my Feldenkrais.  One big difference between my FT and VT is that VT always pushes me.  My FT sometimes pushes me, and sometimes is more to ground me, get me back to where I need and want to be after having been VERY challenged.  It depends on what's been going on, and what I've been doing.

Bottom line: rehab is not static.  Rehab is as individual as the person doing it, and needs to be reviewed and changed whenever you - or in this case *I* - get too comfortable for too long.  That makes me uncomfortable; I am not by nature an adventurous person, and this means exploring a bit, trying something new.  Something that may feel a bit scary to do because of my invisible disorders. So I have to trust my therapists.  I'm very fortunate to work with really good people, and I know I need to do this, to let things not be static, in order to make progress. 

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