How does it feel? (poem)

Trimethylaminuria
#1

This is actually a poem i wrote 8 years ago when tmau became a part of my life.

How does it feel?

What is it like to think you have a great gift
To think there is one thing you can do better than anyone else
Only to find
Your just a needle in a hay stack
What is like to push yourself to win something
and when you finally convinced yourself you’ve got it
You find it your only second best
What is it like
to try and please someone
to move heaven and earth for them
Only to always come up short
Because it’s never enough
How does it feel
to want to be with someone
to think one person is so amazing
but having to face the awful truth of knowing they can never be yours
How does it feel
When life takes an unlawful turn
the worst occurs
something you wouldnt wish on anyone else
and have to live with it for the rest of your life
What is like
to make a choice that can never be taken back
To do something that practically ruins your life
And not knowing what to do, where to turn, and who to tell
How does it feel
To hurt someone so bad
That not even saying sorry helps
Because what you did can never be forgotten
What’s it like to work so hard
To make something work
to put all of your effort into it for so long
And to find out its it never going to work anymore
What’s it like to have someone against you
Without knowing why
or what you did to them
To have someone treat you horribly without any just reason or cause
How does it feel never having the right look, clothes, or personality
to feel like why am i the way i am
How does it feel to not be smart enough
In this world that everyday its seems like there’s always something new to know
But you cant even grasp yesterdays knowledge

There are so many “What’s it like, and how does it feel” in this world
That i cant even writem them all down.
Yet, i know
no matter how many there are
And how many happen to you
that they are all apart of life
They’re apart of being human
For with the good comes the bad

We live in an imperfect world
So it’s expected to be imperfect, to make imperfect decisions, to have things not perfectly the way we want them
It’s expected
and its okay
Because there are other things we can have, want, be
Were’re not beautiful on the outside
but were beautiful on the inside
Were not rocket scientist smart
but we’re street smart
we have common sense
And beyond that we have life
No matter how it is
Not to mention the dream that things can get better
and will

So when ever you think about
how you feel
or why this has happened to you
or why your always doing this
remember
you can, you will, it will happen
But you can, you will , and it will change for the better
So now “How do you feel?”

#2

That was great! You are very talented and sensitive…

#3

i could relate so much to that poem. i think society makes it difficult to acknowledge how we feel. there is so much we know or dont know about life. we can only guess and hope that we are right. if not, then another lesson learned. you made alot of good points and i think they are well taken. id like to read more of your poetry. your quite talented in getting people to open up their eyes.

#4

May I ask what is tmau?

#5

thats the condition that i suffer from look up trimethylaminuria on this site i dont know how much information is detailed. but its there.

#6

JUST KNOW GOD ONLY GIVES US AS MUCH AS WE CAN HANDLE. YOU ARE A WONDERFUL PERSON. I GIVE YOU ALOT OF CREDIT FOR WHAT YOU ARE GOING THRU.I THINK YOU DO HANDLE IT VERY WELL. DON’T SELL YOURSELF SHORT. EVERYTHING HAPPENS FOR A REASON. YOU ARE A VERY TALENTED WONDERFUL PERSON. I HAVE READ ALL OF YOUR POSTS AND YOUR POEMS ARE WONDERFUL, HEARTFELT AND SOMETHING THAT PEOPLE CAN RELATE TO. THINGS THAT I KNOW MYSELF I COULD NEVER SAY BUT ARE SO TRUE ABOUT ME. LIKE I SAID IN THE BEGINNING I WAS A LITTLE LEARY ONLY CAUSE OF THE PAST OF WHAT WAS GOING ON IN CP BUT I THINK YOU ARE WONDERFUL AND HONEST. CP IS VERY LUCKY TO HAVE YOU ABOARD. IF I EVER SAID ANYTHING NEGATIVE ABOUT YOU I DO APOLOGIZE DEAPLY. I KNOW AND I ADMIT IN THE BEGINNING I DID BUT I HAVE LEARNED FROM THE MISTAKES I HAVE MADE AND LEARNED NOT TO JUDGE PEOPLE BECAUSE OF WHAT HAPPENED IN THE PAST WITH OTHER CP MEMBERS. GOD BLESS YOU.
DREEN

#7

TREATMENT …

"Currently, there is no cure and treatment options are limited. Although there is no perfect cure for trimethylaminuria, it is possible for some people with this condition to live relatively normal, healthy lives without the fear of being shunned because of their unpleasant odor. Getting tested is an important first step. Ways of reducing the odor include:

Avoiding foods such as eggs, legumes, certain meats, fish, and foods that contain choline, nitrogen, and sulfur
Taking low doses of antibiotics to reduce the amount of bacteria in the gut
Using slightly acidic detergents with a pH between 5.5 and 6.5
At least one study[6] has suggested that the daily intake of charcoal and/or copper chlorophyllin may be of significant use in improving the quality of life of individuals suffering mild forms of TMAU, the success rates vary:
85% of people tested completely lost their “fishy” odor
10% partially lost their odor
5% kept the scent
However, whilst they may be beneficial in some cases, many people in trimethylaminuria support groups who have tried charcoal and copper chlorophyllin have reported disappointing results.

Also helpful are:

Behavioral counseling to help with depression and other psychological symptoms
Genetic counseling to better understand their condition "

#8

I need money to get tested. I’m been getting fired from my jobs. I’m trying to take it one day at a time and save up. I tried the diet and it doesnt make that much of a difference but i havent tried it with the antibiotics and the chlorophy or any other odor controlling pills. I have one of the worst cases I once filled an auditorium with my smell. And some people do all these things and get nothing from it. The treatments doesn’t work for everyone. If you read alot of the forums you’ll see alot of people have tried them. I havent tried everything at once, but i can’t wait, and would like to try. But what i cant wait for and what life allows me to wait for is different. But the diet does help a bit. And people with tmau dont just suffer from a fishy odor, theres also garbage smells, fecal smells, urine smell, some people have a combination, a rotten smell. Some people take on smells of there enviroment. I for one have a combination of smells i guess that depends on my diet. And depending on what area i go around. If i go somewhere that smell like garbage ill smell like garbage all day. When i first developed tmau the people closest to me couldnt smell me. I was getting phsychological help at 15 because the people in my family thought i was crazy. Which is funny because there were people that could smell me that didnt say anything. I’d been to numerous doctors and up until i did research online i didnt find out that this is what is wrong with me till about 2 months ago and i’ve been like this 8 years. Doctors tell me im fine im perfectly healthy. Thats because the condition is rare and you cant just get tested by going to the hospital or your local doctor. It’s hard never knowing what is wrong with you when something is obviously wrong. And right now since the places to get tested are so few you have to get on a waiting list and it take 4-6 weeks from there to get results and have them explain to you what it means. And its costly. It’s gonna take time. So i have to take it one step at a time.