"I want to know
what's wrong with me."
"I want to feel
better."
"I want to have a
life again."
Many people can relate to
all three of these statements. I see
these, or variations of them, posted a lot on online vestibular support
groups. There are serious medical
problems for which people end up fighting for their lives. Clearly, that's a
big deal. There are also lots of things
that can be wrong with you but are manageable and don't really interfere with
daily life. I've had reactive
hypoglycemia for over 30 years. But
properly managed, my RH doesn't make me feel bad most of the time. Being dizzy, a symptom that most vestibular
disorders cause, is different. When I
first got sick, it wasn't just
unpleasant, it was really scary. I also
felt really physically sick. Thankfully the scary times, the times when
I'm dizzy, (which is worse I think than disequilibrium; feeling off balance),
are brief and far less frequent now. Feeling
better to me means improving, which I am now doing. But I know that dizziness keeps people from
doing stuff, even very basic stuff. It
can seriously mess up your life.
When I first got sick, I
sometimes heard friends say "don't give up!" I would now also say "don't give up on
yourself." When you are miserable
and scared, it's very hard to keep going, keep trying to get answers. It can get horribly frustrating, depressing,
and just plain exhausting. I now truly
understand the meaning of the word persistence. Until I got sick three years ago, never in my
life had I gone to so many doctors! And
yet I wasn't getting answers. I had to
tell myself "OK, I'll go to this doctor," "I'll do this test,"
"I'll have this exam," "I'll go through this if it means I'll
get some answers." To say that going through all this was difficult is an
understatement, but I did it. Finding
the right doctor, to get an accurate diagnosis is so incredibly important. And
I think it's what you have to do until you get answers. Sometimes you have to
figure out what ISN'T the answer, in order to find out what IS the answer. Finding out what's wrong doesn't instantly
solve problems, but it's SO much better than asking over and over and over again
"what's WRONG with me?". I
talk at more length about my journey to my diagnoses in other posts (see for
example "Medically Significant").
Finding the right
treatment, what works for you, is also really important. In the early months of my illness, I was
doing Vestibular Rehab Therapy - VRT - with a Physical Therapist (PT). I presume that some people improve doing VRT
with PTs, but I did not. I went to my PT
regularly. I wanted the VRT to
work. PTs can do some basic testing, for
example for BPPV, but are not, in my opinion, qualified to make more
complicated diagnoses. I did not have
all my diagnoses yet, and I think a lot of PTs are very used to doing VRT as a
standard therapy for vertigo. She also kept
telling me my BPPV was gone, even though I had a hunch later confirmed by a
neurologist, that it wasn't. Most
importantly, I was not seeing any improvement in my life from doing the
VRT. VRT is not the only option
available. I stopped working with the PT
when I got connected up with Joyce, an Occupational Therapist whose specialty is
Feldenkrais therapy, which is brain re-training.
My vision therapy is
supervised by a developmental optometrist.
A developmental optometrist does eye exams to check for physical eye health,
which means they do standard eye exams like dilation, and checking your eye
pressure. They also check that your eyes
are functioning properly in a variety of ways.
Both of my daughters have been
checked by our developmental optometrist, Dr. Margolis. If there is a problem, some form of vision
therapy is often recommended. For
grownups, like Feldenkrais, this is also a brain re-training issue. I don't completely understand the complex
system of vision, or how the therapy works, and I don't try. I leave that job to my doctor and
therapist. I do try to answer my
daughters' questions when they arise, and sometimes I tell them "I don't
know."
Finding the right people
to work with is important, but then the work to improve begins. I wrote about being understood, and this is
important not just for family members who live with me, but also those who work
with me. Improving, for me at least, is
a work in progress. I speak regularly
with my psychologist, which is very helpful.
I'm always communicating with my therapists, Ann and Joyce. I need to communicate well, describe things to each of them. I think having invisible disorders that affect
my life means that people I work with need to have some info about my daily
existence, because they are working with me as a whole person, not just my disorders.
Looking back, given how
sick I was, I know I did the best I could to get what I needed. I didn't give up on my search for answers,
both for my diagnoses and for treatment with the right skilled, caring
professionals. I hope that no one gives
up on their journey to find answers, to get what they need because it's so
important. I remember during a visit
with my ENT, Dr. Ziffra, he told me in answer to one of my many questions
(note: not verbatim):
"That's beyond my
area of expertise. The whole balance
system is very complicated. It involves
the ears, eyes and a part of the brain.
It's not uncommon for an elderly person to have a problem with balance,
so I strongly recommend that you get to the bottom of this now."
I think it's wonderful when
a doctor says "that's beyond my area of expertise," because they are
admitting they don't know. When a doctor
says this, I think you can trust them when they tell you what they DO
know. As frustrated as I was, I took his
words to heart, and his words were one more little piece that helped me keep
going until I got answers. So now I'm
passing these words on... keep searching until you really have the answers you
need, and feel like you will be able, little bit by little bit, to improve.
