TMAU Book - Help?

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TMAU Book - Help?

Postby amber » Mon Apr 23, 2012 10:59 am

Putting pen to paper has been a lifeline for me over the past decade. I have completed two novels in the past three years and just before Christmas I began to write about my experience with my own extreme body odour condition. I am currently being tested for TMAU having found the first doctor in twenty-five years who has even heard of TMAU but although it is early days as yet, I still feel left out in the cold. I have been hiding behind my minor fortress called home for as long as I can remember without family understanding or support, without friends to laugh and cry with and without medical support of any kind. I am desperate to become a valued and purposeful member of society and began to think that maybe the only way I can do that is to write about the very condition that I have been running from my whole life. I am probably not selling myself that well...but then I have severe fecal body odour so it is probably not that surprising! Yet the book is not a tale of misery and woe as I could not write like that. It is a frank, humourous and recognisable account that I hope will be of comfort to anyone with our condition or dare I say a revelation to any GP who doubts the severity of how such a disorder can destroy and hinder lives from the very moment it begins. These forums have started to save me, dare I say I have found a friend and so if there is anyone who can offer help or advice with my goal I would appreciate the input. Just wanting to be a career girl, Amber X
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Re: TMAU Book - Help?

Postby PoetFire » Tue Apr 24, 2012 10:20 am

Sounds a great idea Amber. A suggestion would be to make it an ebook ? You could then put it on Amazon and maybe other places so that people can download it and hopefully you would make some money too. We all benefit from anyone raising awareness.
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Re: TMAU Book - Help?

Postby malory » Thu May 17, 2012 11:53 am

Amber,
A psychologist is interested in writing a book which includes some of our experiences of ostracism and social difficulties. If you would like to send him any accounts of your experiences/difficulties, it would be helpful. I found it cathartic to write about my darkest moments and I think it is a good opportunity to educate psychologists/counsellors about how damaging these conditions are.

He is also interested in learning about how our forums and meet-ups help us.

He may be contacted direct on:

kip@psych.purdue.edu
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Re: TMAU Book - Help?

Postby amber » Fri May 18, 2012 10:00 am

Really appreciate your replys. i have been running from this crazy condition for such a long time and i still feel pretty lost. i am scared that nothing will ever change for me. i havent moved very far forward since this started in my teens. i have always tried to hide as much as possible but ten years ago when i had the worst ever episode and the whole neighbourhood found out, i just havent been able to relax since. People actually came right up and sniffed me to see of it was true! i now suffer with stress related headaches, muscle pain and excess stomach acidity and i am just so tired...not that i would ever give up. i began writing to keep myself sane more than anything and last year it kind of came to a head when i realised that athough i have expended all my energy into trying to hide from the offended world, it really wasnt working. i never thought that i would write about tmau / my body odour (my test is back next week) but it was almost nice to stop running for a minute and think about it which i didnt expect. i mean i smell of poo, it's really not that funny! Not to mention garbage and burning bonfires / plastic - there are a number of contrasts but poo is the best! Thankfully this post does not sound as depressing as i feel right now - i hope! but i just want a career. i want to say this is my name and this is what i do. i wish i could say to anyone at all that this untameable odour that can be just as offensive from several unspecified feet away is not actually because i dont wash. i had thought to get a t-shirt printed saying that i have TMAU but i am not even brave enough to do that. i was run out of school, out of jobs; i have no idea how to develop friendships or how to be with a man who doesnt treat me as if i am that mess on the bottom of his shoe. i have not been able to evolve as people naturally do and i have spent so many years alone, so maybe the only thing i can do to contribute to society is talk about this monstrous nightmare. i am a fair artist and a fair writer but maybe that is about it. i hope this post is ok, i think i am havin a bit of a breakdown before my results are due on monday. i am not sure whichever way it goes what difference it will make to the basics of how i am not at all coping.
thank you for the link - i take it that is email address, my laptop wont let me automatically use it. my best wishes to everyone amber x
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Re: TMAU Book - Help?

Postby malory » Sun May 20, 2012 7:21 am

What a wonderful post, Amber, although it makes me so sad and angry that the medical profession are still so ignorant about all this. A couple of USA members wrote about their experiences in books I think (MEBO Research website) but I haven't read them yet. It would be really great if you could write a book about this and it would be so helpful to the community. Who knows, it may even feed into a film such as the forthcoming 'Boy Who Smelled Of Fish' film

Congratulations on having written two novels. You say this as if it is nothing but this is a brilliant feat!! You say you are a fair artist and a fair writer but I think you may be being modest here. The best artists and writers are often born out of miserable or traumatic experiences and if your work can affect how people feel then you have a great talent.

I know what you mean about wanting to contribute your skills to society but, if it is any comfort, work can make our condition so much worse. I go to work knowing that everyone would rather I wasn't there - this is very stressful and makes the odour even worse. It isn't good to be isolated (and working may be good for this reason) but you are now part of our (ever-growing) community and will never be alone or isolated. If you are ever in London, please contact me to meet up.

Your skills would be much appreciated by our community and much needed.
Please e-mail Kip these posts of yours; he started off by studying 'odour and ostracism' and I think he is quite shocked by his findings and the depth of psychological damage odour conditions cause. He would find your words very interesting.

http://www.bbc.co.uk/programmes/b010y000

http://williams.socialpsychology.org/
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Re: TMAU Book - Help?

Postby PoetFire » Sun May 20, 2012 10:46 am

A while ago I downloaded the ebook version of Alice Mata 'when bathing is not enough'. Works out at around £3 (?) I hope she is getting a cut. She deserves it. Book was written over 10 years ago I think. It's a quick read (if I recall correct) but we all can identify with the shame and stress she goes through etc
http://bookstore.authorhouse.com/Produc ... nough.aspx

I think the other book was print only and has gone out of print. Since Alice's book is still available on Amazon USA and UK I guess it is selling reasonably, which does not surprise me as I reckon maybe 1% population could be 'at risk' of FMO3 deficiency or overload moments.
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Re: TMAU Book - Help?

Postby amber » Sun May 20, 2012 12:06 pm

thank you so much for messages. i am so used to being cut off from all of my emotions that to open the floodgates makes me feel a bit cuckoo sometimes. i hope that i can be of use to this cause because i surely dont want to let anyone down. it feels like i have done that my whole life but i also recently realised that just because someone might smell good in relation to me, that that does not automatically place that person up on a pedestal where i have always put them. i wish family did not react as badly as a stranger and that doctors would find it in their heart to treat the person. Are there any counsellors out there who are in any way aware of this syndrome / its effects. The last one i contacted did not even return a polite reply but just no response at all! I was s-ooo shocked! Amber x
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Re: TMAU Book - Help?

Postby amber » Mon May 21, 2012 10:14 am

I just wanted to say Malory, that your strength and determination is an inspiration to us all, and that i was a bit shocked by what you said about your colleagues not wanting you there, because even though i know the effects so well, it goes to show that no good character is a rival for this syndrome.
I could not sleep for thinking last night. When i began writing about my condition i had idolised wanting to collate every piece of information from diets to skin creams and any viable help etc. but i quickly realised when just trying to get my head around the basic medical info that i was not the right person to do that. But then i thought that i am just one person and that maybe everyone should be telling ther story - maybe the majority speaking as one would be harder for the doctors to ignore? Can you imagine everyone from these forums filling up the front cover of a book, covering their faces with their hands as in that beautiful Rare Diseases Day ad, wearing TMAU t-shirts - maybe uncovering their faces on the back or just filling up the whole back and front cover with everyone! i am going mad - does that make sense or sound feasible? If it was a collative effort by so many then any income could all go to Mebo. Everybodys story could be under their forum names for example and its not hard, if i can write then anyone can do it! You just have to write down whats happened to you - it doesnt have to be shakespeare. i could not sleep for this rattling around in my head. i know that obv a publisher would have to back this but does this make sense? am i being at all useful at last? i know that reading others posts and stories that that has been the only positive help that i have ever recieved. When this began for me i thought i was the only crazy one with this horrible stench on the whole planet. Then out of the blue i heard about fish odour syndrome on This Morning twenty or so years ago but there was no cure which was again the first thing i read on the internet when i finally summoned up the courage to look this madness up on the internet just two years ago. i cannot bear to imagine so many people plagued by this condition from before our time and after out time not to mention now. It was bad enough that it was just me...but now maybe i am the only one in my county perhaps? What are your thoughts - is there anything in this? Amber x
can i just say that Poetfire is the coolest name ever!!
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Re: TMAU Book - Help?

Postby malory » Thu May 24, 2012 12:04 pm

I agree totally, Amber, that a collection of our experiences would be brilliant and I did imagine the same thing one day when I was reading some of the stories on the Bad Breath forum - one of the stories was so moving and interesting that I could just imagine how great a book would be containing some of the posts from the forums. People sent me true accounts of their experiences of living with odour for the UK raising awareness campaign and it was very moving to read those also. I only got 7 or 8 but, if you were to write a book and people could use their pseudonyms, then I think you would get loads of interesting stories. It's a great idea and I hope you go forwards with it.
In the meantime, everyone, it would be really useful for us to be represented in Kip William's psychology book kip@psych.purdue.edu
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