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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

cure you.

As if!

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”.

Image credit: "Bright - Kurobuta Shoga-yaki - Shoya AUD25" by avlxyz is licensed under CC BY 2.0

Swallowing at 26 Years Old: List
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