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 December 2016

June 4th 2016 About cognitive processing, and mental energy...

By | Published Thursday, December 22, 2016

Why is cognitive processing difficult when you have a vestibular or vision disorder, or a combo of the two?  The short answer is that I (or anyone with one or both of these disorders) am not doing certain things as automatically as I should be.   Neural fatigue is a factor in  large part because I'm using up more energy to do some things than I should be. 

There's a ton of info that your brain processes all the time.  Some of it you're aware of: thinking about a problem, trying to explain something to someone, listening to and understanding directions.   But there's processing that happens that many people are not aware of:  Where am I in space?  How far is it from here (where I'm standing) to there?  What image do I need to have in my mind when I think about this or that? 

The "where am I in space?" is a big question that actually involves a lot of pieces: Am I sitting or standing? Am I moving a part of my body? Is there hand/eye coordination involved? Am I moving my eyes independently of my head, or is my head moving as well?  If my head is moving, is it moving from side to side, or up and down?  Is my eye gaze switching from close up to far away and then back again?

I don't exactly think consciously about all of these things, all the time.  However, I do think about at least some of these things, and that takes energy.  Because I'm using more energy to process various more basic info, I have less energy sometimes for other more complex processing.  Or I get tired more quickly, because I'm using up my energy more quickly, in order to process it all.  When I have a conversation with someone, part of my brain is, for example, figuring out spatial stuff. 

In terms of my basement project this summer, I'm using mental energy to figure out a lot of new stuff; how to pack things away, where to put things, what I need to bring to the hotel to make it workable for me, to name a few.  I always have things to think about, but there's more right now than is typical, and all the pieces really add up.  I have to work harder with all of this new info.

A major goal with the brain retraining therapies I do is for the processing of all this info to become more automatic, more the way it used to be for me before I got sick.  There has been improvement since I began, but I've definitely still got work to do.  So that when I'm having, as I mentioned, a conversation with someone, all I have to do is concentrate on the conversation, and nothing else.  Or thinking about a big new project doesn't feel quite as overwhelming.

The other goal of therapy, as I see it, is for my brain to do various tasks automatically without so much effort.  This would mean that taking a walk, being in new surroundings (not just a hotel, but any social setting I'm not familiar with), or any number of multitasking activities could be done more easily.  My brain wouldn't have to put so much effort into all the pieces.  This would mean less neural fatigue.  I wouldn't feel like processing more info was more effort than I could muster.


Writing this down felt like a challenging mental exercise, but I felt it was a good opportunity to try to explain a little bit about the cognitive processing issue.  It's a big deal for anyone with the kinds of invisible disorders I have, and I'm pretty sure it's hard for people to understand.  And what's perhaps MOST important is to believe anyone who is dealing with these issues, that they are not being lazy, or stupid.  We all are working harder than we should have to, whether it's obvious to the casual observer, or not.  A little understanding and empathy can go a long way.

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August 3rd 2016 Priorities, goals; what REALLY is important to me now...

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When I get up in the morning, part of my routine is to go into Cara's bedroom, and open her curtains and blinds.  Often, in the summer, she's not awake yet, but I do it anyway.  She expects it.  These days I think about all the days ahead when that won't be necessary, because she won't be here, to have closed them the night before.  It's amazing to me how fleeting time can feel.
I looked at the calendar the other day, and thought "wow, it's August already!", and then yes, I thought again about Cara leaving for college in a few weeks, and her sister leaving only a few days later.  I'm caught between "Oh my goodness!", and thinking "yes, and the days will keep going, and eventually they'll be home for a holiday or a break...  It's transition time...  that's life".  Time passing can be strange - psychological time and REAL time can get funky.

All this leads me to think about exactly how I spend my time, which in turn leads me to think about my priorities.  How I use my energy, as opposed to purely using my time.  I remember the first time I saw Dr. Margolis (my Developmental Optometrist who supervises my vision therapy), I told him that I wanted to drive again.  Driving is a very complex activity when it comes to vestibular and vision disorders.  Driving is much lower on my list now.  Yes, it's a pain to make arrangements, but I've gotten used to it.  As time has passed, what has become MUCH more important to me is to be able to actually DO something once I get somewhere.  THAT is something worth working on.

Going someplace - say, to a social event - is a big deal for me.  I struggle with my social life.  I don't say that asking for pity, but rather because it's a reality.  I know I'm not the only one who has this struggle, but it's still mine, and has no easy answers.  In addition to social life, what other large goals do I have?  I remember a year ago, when Leena went off the college, I really wanted to make things happen, and tried too hard, too fast to get on the path to teaching private flute lessons again.  I ended up setting myself back, needing to regroup, recover, figure things out.  I don't want that to happen again.  So I'm thinking about what I've learned, and where I go from here. 

I've confirmed that having a predictable home environment - or at least relatively predictable - is really important in order for me to be able to function.  I've written about the importance of routines, and of having a stable physical space at home.  This summer I learned how much energy it takes away from being able to do other things, to be able to THINK clearly, if I have to work hard in my own home.  Challenges are good, but only doable when there is, to pardon the pun, balance.  When everything turns into a challenge, I become overwhelmed and overloaded.  So what does all this mean for me? 

I'm approaching the concept of goals a bit differently this year.  I want my larger goals to flow a bit more naturally, to kind of see where things go.  I think it's fair to say that my disorders have made me winnow down to what is really important to me.  I said earlier in this post that I think carefully about how I use my energy.  This isn't just for big things, like being able to do an outing.  It's about how I spend my time on the computer, since that's a demanding visual activity.  When I ask myself "what do I want?  what do I need?", here's what I've come up with: 

1) Being productive - it's really important for me to feel like I'm contributing.  I have to be creative about this, but two things that come to mind are writing my blog, and being an Ambassador for the Vestibular Disorders Assn. 

2) Keeping my mind busy.  It's REALLY important to have things to think about, particularly about things in the world around me.  Rumination about my own circumstances can go negative, and that does me no good.

3) Making progress. I have to keep up my motivation to do my home therapy not just to feel functional, but to try to move forward, regardless of how slowly.  I want, and need, to take my life one day at a time, but  making progress means that big, long term goals like teaching flute are still a possibility.  So yup, I need to find balance between here and now, and progress.

4) Staying connected to others.  This is HUGE.  Doing what I can to interact with others on FB on a daily basis makes a difference, makes me feel less isolated. Going to an occasional social event if/when possible, and talking on the phone with someone when possible are also valuable.  None of this is easy for me, but it's incredibly important. 


All of this makes me feel like I have a life, that I am not just my invisible disorders.  None of us are only our invisible disorders.  

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September 16th 2016 Being part of working for positive change...

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I took a look at what I've posted over the last week or so, and thought about discussions within the petition threads, some of which I've listened to (listening to everything is too much - 300 comments!).  I also find myself thinking about what it takes to motivate people to take action, to feel that their voices are heard. 

Figuring out how to reach people, to motivate others is not easy.  Sometimes self motivation can be pretty tough.  I like to take some kind of action, to feel like there's something I can DO about a problem.  I know that some people just get discouraged, which I do as well at times.  For me, the answer to discouragement and apathy is twofold. 

I think about all the stories people have shared with me over the last two years that I've been an Ambassador for VEDA.  Becoming an Ambassador meant that my blog pieces were posted on the VEDA Facebook page, so I was able to reach a wider audience. Everyone's story is different, but there are so many who need help; a diagnosis, and treatment, or at least info so they know how to manage, and have a life.  Being one more voice trying to help is a positive.

I've also been able to connect with some like minded people - particularly those with whom I'm trying to spread the word about the WHO petition - and these people are DETERMINED.  Determined not to let depression, life changes, loss, etc. keep them down.  Determined to get the message out that we need change in the medical community. 

Being a part of all of this helps me, which is obviously good.  Taking action feels much better than just knowing that problems exist.

On that note, I ask again - if you haven't signed the petition, please do it!  We're up to 1180 signatures :-)  AND please share it - on social media, via e-mail, whatever.  If you've already shared it, consider sharing it again - perhaps someone who didn't see it the first time will see it this time.

"Goal 
We aim to give vestibular / neurovestibular patients a better chance for swift and accurate diagnosis, a cure or appropriate treatment. We ask for a worldwide agreement on education of medical students, further training for existing specialists and the establishment of medical guidelines regarding vestibular conditions / disorders." 

https://www.change.org/p/world-health-organization-who-vestibular-patients-for-smarter-doctors-and-better-patient-care

And I ask you again to support the Vestibular Disorders Association.  If you can support VEDA, by chipping in, that's great.  Follow them on Facebook and share their posts to help inform people.  Become a part of a community that supports those of us living with these invisible disorders... Thank You!

http://vestibular.org/civicrm/pcp/info?reset=1&id=252&component=contribute


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

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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?

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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...

By | Published Friday, December 2, 2016

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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