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...

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

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...

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...

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." 


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!



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