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...

September 30th 2016 Brain energy; a precious resource...

I commented to my Vision Therapist, Ann, recently about how there's so much to work on in VT, so many pieces.  She acknowledged this, but said that yes, I was correct, that a lot of the pieces are connected.  She also said "you understand now how complex vision is, and how it impacts everything."  Not the least of which is cognitive processing, comprehension of info.  I've had similar conversations with my Feldenkrais therapist, my OT Joyce.

My friend Margaret wrote recently that she had about six partly written blog posts, and wanted to finish one (I can relate to that).  My friend David has told me that writing is difficult for him (he does videos).  I know many writers get "writer's block," but what I'm talking about isn't "I have nothing to say."  It's about organizing the words.  Sometimes I feel like I want to write, but gathering my thoughts, pulling everything together into something coherent just isn't there.

This has to do with what I just mentioned, cognitive processing, which is a big deal.  I wrote a piece about cognitive processing back in June which really hit a nerve.  The other day, I decided to actually look up a couple of definitions.  

Here's one for cognitive:
adjective
1.of or relating to cognition; concerned with the act or process of knowing, perceiving, etc.: cognitive development; cognitive functioning.
2.of or relating to the mental processes of perception, memory, judgment, and reasoning, as contrasted with emotional and volitional processes.

And now here's one for "cognition" -
"Cognition is the process of acquiring knowledge through our thoughts, experiences, and senses."

Here's my take away having thought about these.  If you are able to think clearly, all your senses are available to you, and you're not using more mental energy than is, well, normal for various balance related tasks, this thing called cognitive processing is much easier.  Learning, reasoning, etc. isn't compromised.  Multi tasking doesn't use up your resources.  Depending on what I'm doing; i.e. how my day is going, how rested I am, If I'm going out (preferably in the a.m., no more than three days in a row) my resources get used up more, or less, quickly.  I don't have the stamina that I'd have if I wasn't existing in my "new normal," but that's not an appropriate yardstick by which to measure myself.

With everything else I need energy for, using it up to remember the same thing six times in a row isn't happening.  My memory in and of itself isn't really that bad, but SEEMS like it sometimes.  It takes extra energy to do certain kinds of multi tasking activities that many don't think about, so I have to be careful how I use my processing resources, my thinking power. 

I use visual reminders; putting a pot on the stove re cooking, putting my cordless phone on the table to remember a necessary phone call.  I write myself notes.  Not long - often only a word or two about something.  My paper doesn't have lines - too much visual clutter - and is small.  Think of something a bit smaller than a 3" x 5" index card.  I never put too many different items - six is plenty - and once two or three items have been crossed out, I re-do my note.  My notes need to be neat.  I can read my own handwriting, but I don't like reading other people's handwriting.  All of this saves my brain energy.   

Using my computer takes a lot of resources, mental effort.  When I'm writing, or on Facebook, there's a lot of eye gaze switching.  This could be from the keyboard to the screen, or from one spot on the screen to another spot.  There's comprehension, whether I'm listening to something, or thinking about a response to something.  And there's my spatial sense of where I am in relation to everything else, what's around me.  I have to scroll, which is visual work.  There's a lot of hand/eye coordination, which requires multi-tasking, which is work.  Sometimes I close my eyes for a bit, but even so, computer use requires a lot of effort, of multi-tasking; processing a lot pretty much at the same time.

Sometimes I listen to what someone else has written, and can't help thinking "wow, I wish I could put together something like that!".  I can't write a piece with any complexity to it in a day.  Granted, I'm a perfectionist.  But I also simply get tired because I'm working so hard.  Then I remind myself that that writer isn't dealing with my challenges.  I realize that everyone has their troubles, but not all troubles impact that thing called cognitive processing the same way.  Still, it's hard never to think about what I'd be able to do - write, whatever - if I wasn't using so many of my resources on visual/vestibular issues. 


I work hard to make progress in my rehab - both Vision Therapy and Feldenkrais - which is a big reason why it's tiring.  In the end, I remind myself - again - that I need to give myself "A" for effort, and credit for what I CAN do, and not compare myself to others.  Margaret DID finally finish and post a good piece.  David put out a great video. We all need to choose and use our resources wisely, but still try to DO.  We each need to do what we can with our lives, whether it's writing, creating a video, or whatever.  

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December 21st, 2016 How can I make my time meaningful?

I wrote in my last piece about acceptance.  What does it mean for me to keep working at my rehab, but also work on accepting my situation?  Where do I focus my time and energy?

My home therapy/rehab IS a part of my daily life, but the question is how much I do each day.  I don't want my life to revolve around my rehab.  I know some people who do rehab take this approach, but it doesn't work for me.  I don't want to be constantly in recovery mode from therapy, and personally, I don't see the point if you're only focused on that next step.  There has to also be what's happening now.  I have to be living, not just thinking about where I might be able to go.  Of course, I also don't want to feel stuck.  There's always adjustments, because that's how brain retraining works. Rehab is not a straight line; there's a natural zig zag, and that's OK. 

So, what can I do? I don't want to feel like I'm moving through my days meaninglessly - who would?  I have the use of my arms and legs.  I can think.  I can see and hear. I can speak.  I'm not going to think about how any of those abilities are limited in some way by my disorders.  That said, when you have limitations, feeling like you're doing something because you need SOMETHING to do, or that you have nothing better to do sucks.  Taking my time, because I have ALL the time I could possibly need doesn't feel good.  So, again, what are the main things I can do with my time on a daily basis that give me some kind of fulfillment?  What puts joy, enrichment into my life?

Listening to audio books - I know I can listen to audio books, and that's a good thing.  Getting out of my own head, and life - call it escapism if you will - is a positive.  Books also keep my mind active, keep me thinking.  I'm a bit picky about what I listen to  - Ron would probably say too picky.  But I'm OK with my selectivity.  I want to think, but I don't want to be depressed.  I want sometimes to be entertained, but not mindlessly.  I like good writing.  Call me a snob, but I simply can't enjoy a book that's badly written.  I don't have to relate to the story, but I do want to feel personally drawn in.  I want to feel like I WANT to listen to the book, rather than that I'm just passing time. 

Internet - for me, this is using Facebook, listening to music, and some e-mail.  Though I'm trying to be selective about my FB usage, I definitely still see FB as an important resource for me.  I connect with friends, and get info.   I have to make sure there's a balance to my info in terms of keeping up with the news, but also looking at positive stuff, and connecting with people. Music is self-explanatory - gotta listen to music every day.  E-mail is mainly communicating with a handful of people with whom I don't communicate on FB.

Writing - OK, this is another computer activity, so I have to think about my pacing.  That said, I enjoy writing, and may mix in writing about other things - say an audio book, or a song - in addition to the snapshots of my life.  Talking about invisible disorders will always be important to me, but I also want to make sure I think about, and therefore possibly write about, subjects that aren't directly about me. 

My flute - I've written about the private flute lessons I used to give, and I still think about that as a long term goal.  But there are a lot of issues to deal with, and I want to enjoy what I do NOW, rather than solely focusing on something that may come eventually.  I USED to think that I wanted to wait until I was "camera ready" before making any more videos.  Flute teacher ready.  But I don't know when that's going to be, and I need to do something in the meantime.  I've always said that music is something to be shared, so, I want to see if I can manage our video camera.  I realized that until I try, I won't know for sure what challenges it presents to record myself.  How much help I'll need.  I have no idea how to download from our camera to my computer.  But I think that giving it a try, putting something out there, seeing what response I get, is worth a shot. 


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December 2nd 2016 Acceptance isn't giving up, or giving in...

To listen: copy & paste into Google Translate- this also translates to other languages - and click the "speaker" icon.

Replies to blog comments - pls check back for replies - I do try to respond!

I've been thinking about this piece for a while, and decided it was time to put it out there.  These thoughts, like a lot of things, are a work in progress.  This past Fall has brought changes, and frustration, and finally, contemplation. I've been adjusting to my daughters being in college.  I'm proud of them, but it's also meant thinking about my limitations, which is frustrating.  Anyone who knows me knows that I'm concerned about the general election we just had in the U.S.  However, there's a limit to what I can do, how involved I can be politically.  I'm also part of a group that worked on a WHO petition for vestibular patients, but again, there's a limit to how much I can participate in this project. 

I've talked about the importance of using Facebook, but my disorders impact my activity.  I'm very limited re my reading.   Really reading - meaning not copying and pasting text into Google Translate so I can also listen - is a big challenge.  It's one thing to see words - almost like an image, but quite another to actually process the meaning.  If I try to read too many headlines, or comments on FB, without copying and pasting into Google Translate, I get overloaded.  Combining the two systems - auditory and visual - makes comprehension easier, but copying and pasting headlines into GT is very impractical.  Re comments, or articles for that matter, if I copy and paste too much into GT, there's too much eye gaze switching, too much convergence on small targets, and I get overloaded. 

Sensory overload doesn't feel good, and if I don't pay attention, can lead to migraine-like symptoms.  On the plus side, I usually can tell when I'm heading towards overload.  So, I have to back off.  I have to pace myself.  Taking a few minutes here and there throughout my day is, I remind myself, better than feeling lousy and needing to chill out and do basically nothing for maybe an hour, while my system gets reorganized.  Yes, backing off means I feel better in terms of symptoms, but also somewhat less connected.  Then it's time to do writing that doesn't necessarily get published, or post on the Vestibular Support Group simply to get something off my chest.  I remind myself that I'm grateful for what I AM able to do online, and then find a good audio book that gets me out of my own head, and life.


All of this also means I've been thinking about what it means to accept my situation, without feeling like I'm giving up.  I need to continue to communicate with my therapists - my OT and VT - so they understand exactly what my struggles are, and can work with me.  But I also think I need to sit back and say "OK, this is my life, these disorders are part of me.".  I have a migraine condition that I mainly experience as light and sound sensitivity.  I have a vision disorder that impacts my life, realistically, in myriad ways.  I don't think they define who I am, but I DO think accepting that I have these disorders, rather than fighting that concept, is actually healthier for me. 

Acceptance won't come all of a sudden, and it doesn't mean I'll never feel angry, or sad, or whatever.  This process is far from linear.  But acceptance can, I believe, allow me to find a sense of peace about my situation.  Acceptance doesn't mean I'm going to stop putting effort into my rehab.  But it DOES mean it's time for me to say "that's right, you can't do (fill-in-the-blank)... this happened....".  The whys and wherefores don't really matter anymore.  Thinking about whether or not I'm "too young" for something like this is irrelevant, and I know I'm not the youngest person to be dealing with these kinds of disorders.  Thinking that someone else with a different disorder somehow is better off, has it easier than me - feeling jealous of others, what they can do - is normal and understandable, I know, but not helpful for me in the long run.  What matters is to pace myself, take care of myself, and recognize the value of what I CAN do, the person I am, even WITH my disorders. 



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