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 ...

Archive for March 2016

March 27th 2016 Meaningful activities, and a social life....

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I know I talk about my two therapies - VT and FT - a lot.  That my rehab is important; in addition to my actual therapy sessions, I've never clocked it, but I'm guessing I spend at least an hour a day on rehab exercises.   I remind myself that this is good, that there was a time when I couldn't do anything at home.  Even so, doing rehab is not my entire life, not what my daily living is all about.



So what is my daily living filled with?  I know in many ways, I still run our household, and I don't want to sound like I'm whining - I'm glad I can do mundane daily tasks.   But what else is there?  Music is definitely one piece.  I will soon be in possession of a John Denver songbook, and I've been letting go of the "working on it" feeling when I play.  Letting my music just be.  That's good, but as much as I love playing my flute, I don't spend a great deal of time playing. 


There's also my writing.  When I get really into it, when I'm trying to figure out how to say what I really mean, that can be energizing.  I know I sometimes push myself to try to get that one more thought articulated.  "Is this really what I mean?".  I felt like that writing this very piece - "Am I making sense, will I be understood?".  I'm hopeful that with my new songbook, I'll get into the music as well, and be able to gradually increase my playing time. 



Writing is a wonderful, but solitary activity. Once upon a time music was social for me, but for now, it's solitary as well.  Listening to articles, books etc. is a worthwhile activity, and I'm happy I can do it.  But again, it's something I do by myself.  So where does that leave me?  Sometimes it leaves me feeling very frustrated.  It occurred to me recently that because of my limitations, when I try something, or have an idea, I REALLY want it to work out.  Given all the things I can't do, the road blocks I run into, I don't want to be disappointed when I try something.  But what I also realized is that it's precisely that situation - when it's difficult to figure something out - that's when it's the most important to keep poking around.  Keep trying.


I don't want to do something just for the sake of doing something, because to me, in the end that doesn't feel good.  I want to care about what I do; it's all part of that need to feel energized I wrote about in my piece "Find energy, feel joy...".  Doing something JUST to do SOMETHING can be just as much of a downer as inactivity. 



I mentioned in an earlier post this year that I became the liaison between the Membership Committee for my congregation, and the Youth Education Committee for the Sunday School, which overall has been good.  I've had a bit more interaction - by phone and online - with people, and I've contributed ideas for programs, a couple of which actually came to fruition.  I'm frustrated that some of my ideas may not go anywhere, at least for now.  But having a couple programs go is a pretty good batting average, and I'll keep contributing, because making contributions is important.  Feeling useful is important.



Maybe I'll find a way to get more involved with the Vestibular Disorders Association (VEDA) - I don't know.  What I DO know is that as far as what doesn't work, I have to say "OK, keep thinking, keep looking around,"  and maybe most importantly, "stay open, don't over-think it."  Limitations, and opportunity sometimes seem like an oxymoron.   But I have to believe that if I keep searching, stay open, and try to be creative, an opportunity can still exist.


I'm also opening this up to my readers with invisible disorders - what do you fill your lives with that gives you meaning?  If social life is a challenge for you, how do you handle it?  What do you do?  I'm hoping some people will share ideas, so we all can benefit.


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March 7th 2016 A glimpse into my world...

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

Sharing info is important, but telling my story is important as well.  It's difficult having invisible disorders that very few people understand. I want people to have a sense of what living with my vestibular and vision  disorders is really like; sharing my story is the best way for people to gain understanding.  So I share what I like to think of as snapshots, glimpses into my world. 


Sometimes those snapshots really are like pictures, a moment in my life.  The other day I was feeling overwhelmed, thinking about the planning and scheduling I needed to deal with, and then I stopped myself.  I took a deep breath.  I said to myself "OK, slow down. You don't have to think about all of this at once. One day, one thing at a time." 


I've written about pacing (see my September 27th 2015 post). A big issue for me is the underlying planning that goes INTO the pacing.  At times I'm amazed at how much I have to think throughout my day about details, details that never used to enter my head.  I hate this planning that is now an integral part of my day, my life.


There's the household chores.  Do I have extra cooking to do, and if so, when will I do it?  Are there pots to wash? Is there laundry to do?  Sometimes it's pushing myself to deal with something because I know if I don't, I'll regret it later.


If I'm going someplace new, that requires a lot of thought and planning. Food is important; I need to avoid all my migraine food triggers.  Depending on when I go out, I may need to take a snack with me.  I have to arrange special meals if I actually have a meal in a restaurant.  Even if I've done the event before (like attending adult education at our Sunday School), I still need to make sure I'm not overloading myself.  Challenging myself is good, but only up to a point.  So I'm constantly looking at the calendar, both for a single day to see what I've got planned, and the overview of the week. 



Sometimes I feel like my schedule is too full of routines, but I know I need the routines.  They help me feel grounded, help me feel like I have a grip on what's happening.  Routines also - and this is really important - save me some brain drain.  If I don't have to think about some of the basics of my day, I have more energy for more complex thinking.  Cognitive processing takes energy, so I don't want to squander mine.  I want to guard it carefully - my energy is precious to me.


The fact that my routines are so important, that it throws me when they are disrupted, that it takes something out of me to deal with the inevitable curve balls of life, the way I have to THINK about all the pieces and parts.... sometimes fills me to overflowing with anger, frustration and sadness.  I want to scream at the world about the unfairness of it all.  Those are the times when I hate my disorders. 


I want to feel truly healthy, to have a day when I don't have any neural fatigue, to feel a kind of energy that I presume many in their 50's feel.  I want to have a day when pacing and planning, and planning and pacing, just doesn't matter.  A day when challenging myself doesn't make me feel what is hard to put into words.  Like my nervous system, my whole sensory system is just done.  My brain says "nope, not processing anything else right now," and I have to wait till the fog lifts. 


Thankfully, I now know enough about my invisible (sometimes even my own family forgets or doesn't get it) disorders to understand what's happening.  I know what to do.  I've been down this road long enough to realize that eventually the fog DOES lift.  So I pull myself together, and get on with it.  I do something that I know will help, so that my brain drain/brain fog lifts.  I'm still tired, but can continue to move through my day.  I remind myself that taking care of myself, all the pacing and planning allows me to function.   To be productive - perhaps not the way I wish I could be - but productive never-the-less.


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