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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.
Wonderfully said and understood by many
ReplyDeleteThank you Kelly!
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ReplyDeleteI 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 !
ReplyDeleteYou're welcome - I'm glad I could help!
DeleteThank 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.
ReplyDeleteI 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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