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The last week and weekend were unusually busy and intense
for me because I was involved in taking my older daughter to college, and
helping her to get settled. This is a
big transition time for me, as well as my family, and I feel like my brain is -
as of today - starting to process info better.
I have to be very focused about how I use my time, energy and resources,
and I'm still very much in the process of figuring that out. I made a point of playing my flute - all free
form - which felt good, but did no writing.
Making music is a very different experience than formulating coherent
thoughts, and I really felt no pull to write.
I knew the writing would come back.
All of this made me think about life with my invisible
disorders. Living with invisible
disorders - certainly the ones I have - is a unique experience, and why I feel
so strongly about raising awareness.
People need to know these disorders exist, but also to recognize that
understanding them may be difficult, and the key is really to believe people
have disorders even when they look "just like everyone else." I've written about Balance Awareness Week coming
up in September, and I've also written before about how vision is an integral
part of balance.
August is Vision and Learning Awareness Month. There are lots of good articles online, as
well as videos explaining why vision is much more than 20/20 acuity. Vision, to quote Dr. Hellerstein again - as seen
on FB - "... is seeing, processing
and responding to visual information." If you have a child, getting
your child - all the way through college age - tested for functional vision is
really important. The earlier a problem
is detected and treated, the better. Vision
problems - like Convergence Insufficiency (basically eye teaming), and
Strabismus (double vision) are often misdiagnosed as behavioral problems like
ADHD.
Functional vision tests can be done by a developmental
optometrist. Regular optometrists - and
ophthalmologists - do NOT test for
functional problems. When these vision problems
are caught early, the chances of developing a problem later in life - as I did
- is greatly reduced. Again, vision is a key element of balance. The entire system of balance - vestibular
(inner ear), peripheral nervous system and vision - can impact one another, and
the vestibulo ocular reflex (VOR) may become impaired if ones balance becomes
impaired. No one should presume it's all
in their ears - the vestibular system - if functional vision problems have not been
ruled out.
Once you have a diagnosis
- whatever it is, along the road to improving as much as possible, take
advantage of whatever tools you can that will be helpful. Ron had a conversation with me recently about
a friend from his college days who has trouble with reading since having a stroke,
and is resistant to audio books. While I
understand the resistance - I had the same reaction at first - here's my take
on using what is available - DO it! It's
hard to acknowledge that you need to use something because of a disability, but
consider the consequences if you don't.
You are not taking advantage of having access - whether it's about
mobility, or information or whatever - because of your new reality.
In my mind there are
levels of limitations; the situations that I just can't do anything about (like
going to an Ed Sheeran concert with my daughters), the situations I can work
with (figuring out what I can do for my daughter's college orientation), and
what I can do without a great deal of planning (walking the dog with a family
member). Limitations can change over
time, depending on what you are doing to make progress, so reviewing your
situation, as I did in my post about making improvements (see July 29th
"Another I can do it"....), is important.
Regarding working towards improving, there are options
beyond medication. Balance - meaning all
the parts that go into a person's system of balance - can often be improved by
a therapy that involves brain retraining. Vestibular Rehab Therapy (VRT) is
fairly widely known and has helped people, and Feldenkrais Therapy (FT) is less
widely known, but very effective. I've also heard of people feeling better from
doing yoga and/or tai chi. When a
functional vision problem is involved, Vision Therapy (VT) is very effective. Diet is also often a key element,
particularly if you have a migraine disorder, or Meniere's. The point is that exploring what can work for
you, to help you improve and be more functional, is really important.
Lastly, I've said this before, but it's worth repeating -
always give yourself credit for what you are able to do - even if it means
simply getting through something difficult.
That's not really a simple thing at all - it's a big deal. I reminded myself of this this past
weekend. And if you did really well, or
better than you were anticipating, hold onto that success. Something difficult is whatever is hard for
YOU - whether that's doing a social event, taking a walk, or doing a household
chore. I feel like it's really easy for
those of us with invisible disorders to get down on ourselves, and focus on the
frustrations. It's important to talk to
people - therapists, friends who also have invisible disorders - who really get
it, get some feedback, and be fair to yourself when you take stock of how you
are doing. None of us is to blame for
our limitations due to our disorders, and we need to give ourselves credit for
every effort!
