SWALLOWING AT 26 YEARS OLD
The past 5 or so years I have suddenly become aware and been
tortured by GERD and acid reflux issues.
It started tame with feeling like I could breathe fire if I
ate certain things. Next thing I knew I was raising my bed up so I could sleep
with my head high so my food would stay in my stomach. I would wake up vomiting
and because of my heavy sleeping meds required to put me to sleep with all my
pain, I would not wake up until my vomiting got heavy and severe and aspirating
my vomit was a normal thing after that. Colds and sickness came from aspirating
my vomit nightly.
It was pure heck with my severe pain and other troubles on
top of it all.
I went to doctors specializing in GERD where I met one of
the worst doctors ever who made me wait 2 hours for a 5 min. visit where he
told me surgery was the only option despite EDS making surgery an impossibility
and we told him that many times. Next came a doctor who was from another
country originally so his accent was so bad we really struggled to understand
each other and it was a confusing long visit where he ended by saying the
doctors catch-all phrase that meant they have no clue what to do with you: You
need to eat better, sleep better, and exercise to lose weight and that will
I have started rolling my eyes when doctors say this because
the joke is on them, I started out super skinny and fit and yet excruciating
pain and swallowing issues started even with my body being technically healthy.
It is because of my 14 year long misery with pain and health issues that I have
gained lots of water weight and have almost doubled in weight from when I was a
Exercise is impossible because of the severity of my pain
laying in a bed let alone trying to work out and I love exercise, my body
Eating well is great and I would do it and did until my hand
pain etc. became so bad it no longer was a possibility. Easy and quick meals
that give me calories to fight pain with are a necessity. And sleep-ha! Even as
a kid I barely slept and though I sleep 20hrs a day I wake up every hour or two
hours with 4 being the impossible amount of hours I can rarely hit with all my
sleeping meds and sleep tea and post-warm bath.
I had a video swallow done next where we learned that
despite gravity, my food wouldn’t go down at all. The muscles that are suppose
to help you swallow and make it easy, mine just don’t work at all. Like they
are paralyzed. I have had to swallow for 4 hours after eating or drinking for
the past 4 years. It is just how I live now. There is nothing that can help
either except meds that barely do enough to keep the acid reflux at bay.
Ehlers-Danlos does not make it easy for me being at the very severe end of the
With pain in my teeth and mouth as well as how exhausting it
is to eat I have started to finally lose weight because I simply don’t eat
anymore. It isn’t worth the calories. I miss food. I have always been a foodie
but lately I find my joy from any yummy food disappearing fast.
Food and eating is a chore. A very very painful one.
“Which is it?!” My mom asked me in confusion as we discussed
a graduation party with food for my younger brother. “You claim to hate food
and hate eating but yet you want to enjoy appetizers at your brother's party!”
This is the part of life that people who don’t have chronic
pain or issues struggle to understand. Some people get that I have pain and in
a general sense they understand that but they can’t comprehend a life where
just existing is EXCRUCIATING PAIN that never relents and millisecond by
millisecond it is not a general thing. And on top of all that we are expected
to LIVE. With all that pain and all those little things we have to adjust for
that normal people don’t have to.
For example I have had to learn a special and gentle way of
moving so that my joints dislocate as little as possible though it is still
over 50 times a day and over 20 times just while I sleep. I have to eat with
special utensils. I can’t shower at all and barely can take half showers where
I clean myself from the neck down and then have to recover for a week. I can’t
even wash my own hair it is too exhausting and painful.
I responded to her “It is both! I love good tasting food and
it makes me want to eat it but also eating is excruciating and so painful and
miserable for me with my teeth hurting SO bad and swallowing taking hours just
for a sip of liquid or a small morsel of food. This is my life, complicated
with a severe mix of pain and horribleness but at the same time I am fighting
to like and enjoy life, working hard to ignore any pain, muscle spasm, ache,
and sobbing often from how much life hurts. It is all I can do to try and love
food when experience and the last few months makes eating the worst thing I
have had to deal with lately.
I have to work to get use to a pain or miserable thing that
I have to do like eating, changing clothes daily, even walking across the floor
when it feels like my feet are walking on nails and needles.
People are complicated anyways, but pain makes life even
more of a competing opposite of feelings. So yes, I love the idea of food and
how yummy and good it use to be but I also hate it for making me hurt even more
than my level 10 pain and I avoid it too. I am just doing the best I can to
keep myself eating at all and trying to remember how good it can be. Life is no
longer a simple thing”.