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...

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

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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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6 Responses to March 7th 2016 A glimpse into my world...

  1. well spoken..I love the routine part as I too have that in my life now. Its like a check off list that I have...I get one thing done...check...breath !!

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  2. Thank you... I'm glad it spoke to you! and thanks for reading...

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  3. Thanks for sharing. It was helpful insight in understanding the every day struggles. I related to a lot of what you shared! 💕

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  4. You're welcome! Thank you for commenting, and I'm glad it had some meaning for you....

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  5. Thank you for your words. Unfortunately, I can relate to almost all that you have shared. I teach high school math and after just half the day my brain power and energy levels are shot. People don't understand since they can't see the problem (like one could see a broken arm). There are many low moments for me when I need to focus on the good...my children. I remind myself how thankful I am to have them and how much they need me.

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  6. Thank you for sharing... that must be hard to teach while living with your disorder... good for you that you keep going!

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