It happened again. Just as I was starting to
recover—ready to grasp a bright spot—I make more mistakes and go back to
where I started.
Stuck in this cycle of slight
improvement, push just a little too hard, then end up back at the beginning. Trying to reclaim that moment of improvement. Over and
over.
I push you body to exercise when you can’t. I make you
walk when paralysis has overtaken your limbs. I have treated you as the enemy
for years when we were always a team. Always.
Sometimes I just get so tired, so frustrated, so
angry at the ever-increasing limitations. So tired of being
shackled under the weight of illness. Then I over-step, ask for too much, push too hard.
I ask for forgiveness.
I tried to have fun with my nephew a few days ago. I tried to play for just a few minutes.
But you can’t do that
anymore. That's no longer within the parameters of your abilities.
I was bedridden for hours and couldn’t walk the
next day. I have struggled to leave my bed and couch since. I don’t want my nephews, my family, my friends to remember me as a
lump on the couch—someone who asks others what they’re doing, who listens to
other people’s dreams and aspirations, who rarely leaves the circumference of a
room. I don’t want this.
So I push myself too hard every day. I ask too much every day.
When I rail against my fate and make questionable
decisions in protest of illness, you remind me that my limitations are serious.
The consequences are real. My breath leaves, my limbs no longer move, any hope
of verticality is dashed. Crash so hard and so deep that swimming to surface is impossible.
Only rest. I rest in penance.
I ask that we try again. One more time. I’ll listen
to what you tell me. I’ll ask no more than you can give. I’ll treat my
limitations as sacred.
Because when we’re a team, we can do great things.
You give me energy to play music—to get lost
in a melody for a short time, to improvise and roam in the geometry of sound.
It is in those moments that I am truly free.
You give me enough energy to go outside sometimes
and walk a few feet or look at the flowers growing in my yard. In those
moments, I feel like I’m a member of the world again.
So we start over, start the cycle again, and maybe
this time I learn from my past mistakes and press forward enlightened and wiser.
Since I didn’t manage to post any weekly updates in
February, I’m going to do a monthly review—even though we’re in March now.
Hello March! It’s great to see you.
- February was a rough ride. I’m still
trying to recover from the intestinal infection that started months ago, and I had
to spend much of the last few weeks unable to leave my bed or couch. But I feel
like I’m finally turning the corner. I had to cancel my brain MRI at Stanford (this is the third time I’ve had to cancel
it), which doesn’t help my terrible record so far of showing up to appointments
in 2016.
Struggling to show up has made the emotional frustration of illness unmanageable. I put off
writing this post until I could get my frustration under control. I can manage being bedridden and very ill for weeks on end but when
I can’t show up to appointments, manage my care, or accomplish any of the
basic things I need to do every day, then the frustration becomes unwieldy. The
last few days have been better though. We’re having an unseasonably warm patch
here in California. It’s hard to feel down when the sun is shining like it is.
- I’ve been very active my whole life and
even though my body continues to become more limited, I’m still militant about
exercising—to the point that I’m constantly overdoing it. I’m still learning
that I can’t do the exercise I want to do. I have to do what works for my body and adapt to its abilities.
The last few weeks, as soon as I start to feel a little better I try to get
back on my stationary bike and then end up bedridden again. Exercise is
essential for managing Dysautonomia and fending off de-conditioning, but since
Myasthenia has taken over my body as well, I’m very limited in what I can do.
If I push my body even slightly past its limits, the weakness turns into
paralysis and my breathing completely shuts down. It’s really not cute.
So I’ve been starting to scale back
and adapt my exercise routine. I’ve been doing a mix of simple yoga, pilates,
and some of my physical therapy exercises in the morning, and I am seeing
results! Usually, on the days I exercise I’m tapped out for the rest of the day
but doing these simpler exercises doesn’t completely wipe me out for the day. I’m
able to accomplish more.
A few years ago, I started to
suddenly have balance issues and the problem, like many of my other symptoms,
has only worsened since then. I do the exercises my physical therapist gave me
to treat the balance problems but they’ve never helped much. They would only
make a dent and wouldn’t have much lasting effect. It’s hard to tell but it
seems like doing yoga poses every day actually has. I do the poses
between a table and a wall so that I can catch myself when I inevitably fall. I
used to do yoga regularly but this is a simpler version of what I used to
be able to do. The poses I do that target balance are warrior pose, tree pose, balancing
stick, and triangle. I often meditate after I do my exercise. Exercising is working best for me in the mornings right now so I'm rolling with it.
Yoga is definitely not for everyone
so if you are considering it I’d recommend talking to your doctors or other
medical professionals first to see if it could help you.
Doing Tree Pose like a boss. Like a wobbly boss
- My improved balance has helped my
mobility too. I have had to use mobility aids for a few years because of weakness from Myasthenia, balance problems, and orthostatic intolerance from POTS.
Basically, whenever I am upright and moving my body is screaming “WHY WOULD YOU
EVER DO THIS TO ME”. Yet, I still push myself to move. I try to get out and walk
every day with my trekking poles, which my physical therapist suggested. They let
me use mostly my upper body when I walk since my weakness is mostly concentrated
in my legs and they give me added stability.
Last week I actually made it
farther than I have in many months. I made it all the way to the corner of our
street (about half a block). I was starting think I’d never make it that far
again but I did! Husband took a picture for me to commemorate the moment. I’ve
been walking to this point almost every day since! I'm thrilled.
-Monday was Rare Disease Day, which
started initially in Europe but now has become a global event. The definition
of a “rare disease” sometimes varies between countries. In
the US, it is defined as a disease that affects fewer than 200,000 people.
Myasthenia Gravis is considered a rare disease but POTS is considered a “rarely
diagnosed” disease. Statistically, 1 in 100 teens are affected by Dysautonomia,
but it is much less common to have initial symptoms later in life (which is
what happened for me). Since Dysautonomia is an umbrella term, there are rare
forms of it that qualify as a “rare disease” such as Pure Autonomic Failure or
Familial Dysautonomia. Ehlers-Dalos Syndrome, a rare connective tissue disorder
often associated with Dysautonomia, is a rare disease.
Rare Disease Day is a great
opportunity to raise awareness about rare diseases since research and treatment
options are so limited for these diseases and patients typically must endure
many years of testing and even misdiagnosis to finally get a true diagnosis.
I had hoped to bring you
information about the event sooner but I’ll have to aim for next year. We still
have Myasthenia Gravis Awareness month in June, Invisible Illness Week likely
in September, and Dysautonomia Awareness Month in October, but every day is an
opportunity to raise awareness!
MyAware Ireland shared this video on Monday with a brief explanation of Myasthenia:
- A few posts ago, I outlined some of my
goals for the year and I mentioned that I wanted to work on a few projects with
husband, including my mom’s antique armoire she gave me many years ago that’s
been sitting unfinished in our garage. A few weeks ago, I went out into the garage
and husband had moved it into the middle and he said “let’s make it happen.” I can’t
remember when my mom bought the armoire but I know I was a teenager or younger.
She decided to refinish it and sanded it, but never finished it and decided to get
rid of it. Before we moved to Nevada, I told her to keep it for me so I could
have it someday. It’s sadly been sitting in a garage
unfinished for over a decade but we finally finished it! Husband did about
85-90% of the work, but now it’s sitting in our room and I’m over the moon that
it’s finally back to its full glory. I wish my mom could see how beautiful it
turned out.
- I was supposed to spend Monday this week
lying in the VERY LOUD TUBE for an hour and a half doing my brain MRI, but
instead I was home working on recovering from February's douche-baggery. Instead, we played games with our friends. Game time is serious business for
me, husband, and our friends. We try to play once a week and have been for
years. Now, they move the table to the couch so I can play from there. It’s
hard to feel down about life with good friends like this
