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 ...

July 17, 2019 - Come Autumn, what if??

I can handle managing our household now, which is a major achievement.  Based on what I've learned about my invisible disorders -  both experientially and in Feldenkrais, vision, and cognitive behavioral therapy - I need to think about how I use, focus my effort.

I wrote a piece "test-driving" - doing (Sept. 25, 2018) in which I said that therapy is a means to an end, not an end in itself. 

So the question for me is this -

My stamina is much better than it used to be, but what if I wasn't using energy every week on all 3 therapies? What if I transition to maintenance - as opposed to weekly - treatment?

I know I want to continue my various creative outlets - they're important to me. I'll continue to do other activities, such as listening to audio books, movies, etc.

What about working on a more ambitious writing project, maybe working with someone on this? I don't know. What bite-size "out there" thing might I try?  I don't know.

I chose many things in my life, but getting sick wasn't one of them.  When I put on my self-compassion hat, I say to myself "no one is living in your body but you, & ultimately you have to make choices that feel right for you."

I'd say "talk with Ann & Dr. Margolis. Same goes for Joyce. Talk with Christina about what you want to try, depending on what the game plan with Feldenkrais and vision therapy looks like".

Lastly, I say to me "do the best you can - what your life is, isn't what you'd imagined, so let yourself feel frustrated, angry & sad when you need to... & do the best you can".

My life could be much worse - I'm keenly aware of that, & I want to get as much out of my life as I can. About that question of what I'd do instead, well, after I've talked it through with my medical team, maybe it's time  - this Fall - to find out.

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January 23rd 2016 Feel the loss, figure things out... keep moving...

Ron asked me not long ago if I missed grocery shopping and I said that there were definitely things I miss, but that that activity wasn't one of them.  Ron started doing the grocery shopping (and other errands) when I developed hand problems, so he's been doing it for a few years now.  I have a list on my computer, which I tweak each week, and he's gotten to know the two stores where we buy our groceries.  Going to stores isn't something I do much; between the various noises, the lights, and a combo of visual factors, it takes a lot out of me. 

Fast forward to me - very recently - sitting in our car in the parking lot (in the passenger seat - I don't drive) while he ran in to buy something I'd forgotten to put on the list.  I was with him because we were returning from an appointment of mine.  I hadn't been in the parking lot of the grocery store for a long time.  As I sat there watching people, I remembered his comment, and it suddenly struck me that what I missed wasn't the activity itself, but rather the ability to do it. 

I had told Ron, when he asked me about shopping, that I try really hard not to think about what I can't do anymore.  But there are moments when the emotions hit me, like this moment of realization.  I reminded myself that everybody I saw probably had their own story, but I couldn't help thinking how they appeared to move so easily, going about their business.  And I miss that. 

Later that same day, I had a brief e-mail exchange with Joyce (FT) about my latest flute frustrations, and she had some helpful ideas.  Sometimes when I'm problem solving with my daughters, I tell them to break things down, and keep things simple, and I need to take my own counsel.   The message behind the ideas Joyce had was to break things down - not in a bad "having a break-down" way, but rather going back to my "figure it out" concept.  Joyce pointed out to me that back when I taught flute, I would try to simplify everything to make it as easy as possible for my student to learn.  That's what I need to do for myself. 

Fast forward again to my session with Ann (VT) during which I discussed my frustrations with getting back to reading sheet music.  Issues I put together after my recent reading of sheet music, because I can't figure things out without trying things out.  Ann added on to Joyce's ideas; we talked more about breaking things down, and how to work some things through. 

In many ways, I'm learning to read again.  There is reintegration (and in some cases, integration for the first time) that needs to happen re the info I take in with my eyes, and the processing/perception in my brain.  The same is true for me for other tasks, such as flute playing.  I have to take in info on the printed page (sheet music), and relay it first to my brain, and then to my fingers, while I maintain my sense of where I am in space.  Integration is key:  if you don't integrate sensory input, or spend too much energy on one part of the sensory input, you have problems.

So I put these moments together - thinking about Joyce's reply to break things down and simplify everything, as well as Ann's input, and then my emotions sitting in our car in the parking lot.  I realized yet again how important it is to do both; as I continue my journey, to let myself feel, and then break things down as much as is necessary, in order to be able to integrate or reintegrate.


July 13, 2019 coming up with 11!

1 - checking the date by looking at the date on my computer screen - bottom right, very small

2 - unplanned visit with landscaper this a.m., which ended up including calling Ron on his cell during this visit

3 - scrolling thru my iPad Audible library to decide what to listen to next

4 - scrolling thru YouTube offerings, before picking a vid to watch

5 - watching more visually demanding videos

6 - figuring out what about something makes me REALLY anxious, so I can do things gradually, so I'm successful

7 - calling to renew a prescription, while laying out my meds for the week

8 - laying out my meds is easier, smoother

9 - I now have my calendar on the wall, & so I stand to cross off each day, rather than doing it sitting down

10 - I did a phone order to LandsEnd with NO help - start to finish - looking thru the catalog, placing the call, reading the item numbers, giving my credit card number - 1st time with no help since I got sick!!

11 - going to library with Ron to pick up a DVD on hold, ending up looking at a computer screen, AND talking to 3 different librarians!

Coming up with this list of what started as 10 & ended up 11 items!

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