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...

November 18th 2015 Pacing - what's so hard about it, and what's the good part?

NOTE: Please copy and paste into Google Translate to listen if needed.

I struggle with how I feel about pacing.  Pacing reminds me of my disorders; it's GOOD for everyone to pace themselves, but for me it's a MUST.  I realize that everyone has to take breaks, and some people are better about it than others.  The difference is how frequently I need to take breaks, and what I actually DO when I take a break.  I don't, for example, sit down for a cup of tea at a Starbucks, or at home for that matter, and read a book or catch up on the news either online or in a newspaper.  And I don't think most people take breaks as frequently as I do.

For me taking a break during any given day might be getting up and literally pacing around a bit, getting myself moving.  It might be switching activities - doing something less challenging than whatever I was doing.  Taking a break may also mean sitting quietly, doing some Feldenkrais movements, or relaxing breathing and doing nothing.  On a good day, my breaks of sitting quietly are anywhere from five - 15 minutes.  If I'm in need of a longer break, whether because I'm having a tough time, or because I've done something more demanding, I chill out for longer.  I try very hard to only actually lay down for my daily nap.

Regardless of what I do, pacing is a necessity for me - this has become much more clear to me recently.  Based on what I just described, pacing isn't a complicated concept for me, but it's difficult to actually make myself DO.  So I asked myself WHY it's difficult - I mean in addition to the fact that it reminds me of my disorders.

Besides the overall reminder of my disorders, pacing involves a lot of self-discipline.  For me pacing is about what I do during any given day, and making sure I take breaks.  I have to stop, even if I don't feel like I'm in an ideal place to stop whatever I'm doing.  It's aggravating, but definitely necessary. 

Pacing is also about looking at what I've got planned for a coming week, and making sure I have days that do not include an outing.  Going out is good, and I need to make sure if I stay home that I vary my activities, but going out too much isn't good. 

I have to prioritize.  What needs to get done now, or today, and what can wait?  I want to feel productive, so I have to plan.  Prioritizing also means I have to think about my responsibilities to others, what I need to do to take care of myself, and what I want to do that I actually enjoy. I may watch a video of some kind, and then depending on what I watch, take a break or do something else. 

All of this means that I feel like I'm constantly making choices.  I'm constantly thinking about the cost vs. the benefit, always thinking about trade-offs.  I have to think about what demands something puts on me, if/how it challenges me, and what I can manage.  There are always things I can't do, things that if my situation were different, I WOULD do.  At those times, I try really hard to focus on what I WAS able to do.

I've said before, my combo of disorders is unusual, and there's no rehab blueprint to follow.  Fortunately, I feel I can trust Joyce and Ann, and Dr. Margolis - who all have the experience, skills and creativity needed to help me figure things out.  Joyce pointed out that I'm doing much more at home than I could have a few months ago, and I know what she's giving me to do is specifically geared to what's going on with ME right now.  I'm very fortunate to have all of them working with me. 

I think all of these elements - self-discipline, prioritization, making choices - of my life are part of being an adult, but for me they are magnified or intensified.  I don't have much wiggle room, and that doesn't feel normal.  It's not the lifestyle of a healthy adult.  I don't like that - it's a drag.  So why bother doing it?  I mean, beyond not wanting to feel lousy, what's the positive side?

I think the "why" of it all - beyond not feeling lousy and still being able to do SOME things - is that doing what's involved in pacing is part of the key to any forward movement I want to achieve.  Pacing doesn't feel like a positive to me, but acknowledging that I need to pace myself is what allows me to do things.  And I've noticed that pacing in some ways is about being mindful, self-aware, and trying to live in the moment.  None of that is bad.         



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7 Responses to November 18th 2015 Pacing - what's so hard about it, and what's the good part?

  1. Wonderfully said and understood by many

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  3. I saw your story on the Veda site and just last week was diagnosed with MAV after earlier vestibular neuritis. Gonna try to figure out which Dr, to go back to next as this is difficult to deal with trying to help out with care of a great grandchild some. Your post have some very helpful ideas. Thanks !

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  4. Thank you for sharing your struggle, Tamar. It is so much like mine and I always learn from your shared experience. I go through days...many days...where I just hate this "thing!" Knowing others are dealing with something similar and how they are doing it is extremely helpful both physically and emotionally.

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    1. I hear you about knowing what others are going thru! You're welcome and thank YOU for your comment - it means a lot! Hang in there, right?

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