Are the reactions you get this bad?

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Are the reactions you get this bad?

Postby SmellyKelly2 » Sun Nov 28, 2010 4:28 pm

Hi All
Went to Dorset for a nice break this week.
Unfortunately, I ate some beans and cheese plus drank some alcohol this week too.
Had some pretty bad reactions in the pubs like:-
Someone talking about a smell, another group talking about wheeling shit though a lounge (wondered if my smell started that discussion as I think that they were talking about a farmer who did this!), not sure if someone else was talking about moving tables, another mentioned digusting and the back door was left open.
Another day someone in the pub kitchen where I was sitting next too (thought the smell of food might hide my smell!) said 'tried to ignore it I am not sure how they all just sat there' and same person in pub kitchen walked past saying 'I will just spray and go'. Then the pub kitchen outside door was left open it was freezing!
Does anyone else get reactions this bad or is it just me?
SK
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Re: Are the reactions you get this bad?

Postby smelly » Sun Nov 28, 2010 5:39 pm

Yes! Not just hinting, but people confronting me. At work, shouting in aloud voice in crowded room that I stink, half the people sniggering the other half going red and looking at the ground, and Ive had complete strangers coming up to me sniffing at me and saying theres a horrible smell coming from me. It happens now and then, usually when I think Im doing really well with the diet and presuming everythings okay. I can never smell a thing when this happens. I cant help but smile when people say that they THINK they smell because someone has coughed or scratched there nose or something. If you REALLY smell, people will let you know in no unertain terms! Unless you never leave the house I suppose, you do actually have to come across people for them to get the opportunity. Which is why Im dreaming of being able to afford to become a hermit! :lol:
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Re: Are the reactions you get this bad?

Postby BLUEY » Sun Nov 28, 2010 10:08 pm

Hi Sk,

So sorry to hear what happend on your break, its such ashame as this is a ideal time for us to get away from our area's and people who know us. I hope it didnt ruin your trip, i have been challenged mentally and physically. Not really had alot said to my face but people will let me know by over doing coughing and sniffing or just hand jestures to the nose, i have so many knightmare situations i could tell you but i would end up posting all night, its died down alot for me dont know wether its cause i watch what i eat now which may of helped reduce my smell. I work alone alot of the time im also careful were i go and what i do, dont get me wrong i still have the odd die hard fan who has a pop now and again but nothing i cant get my head around now days. As word got around that i smell word also got around not to push it too far with me as im not the sort that will just look at the floor in shame or go round the corner and cry ive had to front alot of people over this which by choice i really could of done without but when it comes to my pride, dignity and integrity i cant let no person insult or attack these when ive done absolutley nothing wrong, its the principle of the whole thing with me. I know we are all different and deal with things in are own way but this is why i say dig deep and stand up for yourselfs which ever way you feel fit, you dont have to suffer in silence, you have just as much right to get happyness, enjoyment and full fillment out of life just as much as any other.

Best wishes

Bluey
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Re: Are the reactions you get this bad?

Postby crazyinCA » Sun Dec 05, 2010 5:30 am

My husband, children, parents, good friends, etc. all say they cannot and have not ever noticed a foul odor on me. BUT, I'm a teacher and the kids sure notice. Also, I'm one of the lucky/unlucky ( I haven't figured that one out quite yet lol ) few that can actually smell myself. I smell myself before anyone else because it always begin pretty mild and increases throughout the day. I have had children ask me "What's that smell in here?" I have had many of them covering their noses. Some of them spray perfume or wear lotions on their arms/wrists and put it to their nose often. I have had some say, "I think someone had an accident in their pants!" I have parent helpers, I have an aide in my room for 30 minutes daily, I have asked a few coworkers I felt I could trust... none of them have ever noticed it, so they say. When we have staff meetings it gets really crowded because I'm at a really large school site... and I get anxious because I don't want to be real close to people. I see a few of them covering their noses too.

Since my TMAU is a hundred times worse when I'm on period... my ob/gyn put me on the pill so I would only have a period every 12 weeks. Well it fell at work once last year. It was terrible! An aide that came in asked me what that terrible smell in the room was. I thought she was sweet so I tried to own up to it. I pulled her aside and calmly told her I was sorry and that it was coming from me. She laughed at me! She laughed at me and told me it wasn't me. I argued with her and she just said I was crazy. Later that same day, another teacher came into my room to ask me something and immediately when she walked in she held her nose and said, "Oh my God! Did one of your students poop their pants today?" I just shrugged and said, "I dunno!" She got out of there really fast!

Just because some people you ask say they don't smell it.. it doesn't mean they don't. The one aide REALLY smelled it! But she swore and swears to this day it was not coming from me. I should have taken her into a clean, fresh smelling room to prove it.

BTW, I have been tested for TMAU and the result was POSITIVE via a urine test. I am awaiting blood work test results to determine the level of the problem now. The doctors think I have a mild case which is why none of them (I saw more than 10 doctors regarding this) and why none of my family or coworkers I've asked can smell it.

Nice forum.
Talk to you later!
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Re: Are the reactions you get this bad?

Postby gazela » Sun Dec 05, 2010 12:38 pm

:) Hi All

:oops: I can say that the reactions you have had are the sort of thing I have had every day for as long as I can remember.

:( I have had lots of people make remarks, move away from me in pubs, clubs and restraunts, on public transport, planes, people getting out of lift holding nose etc etc....

:evil: I do not get people actually say much to my face but I think that is because I dont look like the type of person who would just stand there and take it.

:shock: I get people stop and stare and point, kids are the worse - 'out of the mouth of kids and babes' - as they say. You know what I mean children dont think they just say it as it is.

:cry: I dont go out anywhere anymore. I dont even go into petrol station kiosks, my wife or friends go in and pay for me. All because I cant take all the c++p I have mentioned above, I am just sick of it really.

:x The worst part is that no one says oh! I can smell fish. It is allways far more disgusting smells, mostly to do with waste products, if you get my meaning.

:D We are stuck with this forever so the best we can do is accept it and make the best of what we have. Lots of others have their cross to bear, this is ours. We have to keep our chins up, say this is me, take it or leave it, but it 'aint gonner change'.

8-) Keep smiling...Gazela
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Re: Are the reactions you get this bad?

Postby SmellyKelly2 » Sun Dec 05, 2010 3:41 pm

Thanks for all you posts.
Being a 5ft nothing and 7 1/2 stone women people say alot of stuff to my face when I am on my own too.
On this holiday I was with my boyfriend so no one actually said anything to my face.
Bluey you are right I must really stand up for myself more and remember no matter how offensive people find me I have the same right to be some where as they do.
CrazyinCA like you my odour did not used to be so bad, so not so many people used to smell me.
But unfortunately my odour went through the roof over the past couple of years (by eating healthy foods before diagnosis). I like the pill idea.
Gazza you sound just like me, as until very recently I send my boyfriend or mum in the shops for me (if not ordered on line) for everything, as got so feed up with the comments. But I am slowly forcing myself to go into shops again even very small ones. I also left a middle management office job because people where so cruel and I could not take it anymore (and have not worked since). But hope to change this in time too.
SK
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Re: Are the reactions you get this bad?

Postby crazyinCA » Sun Dec 05, 2010 8:20 pm

SmellyK -

My symptoms seemed to begin as associated with my periods. I would get this horrible smell, I can only say that it smelled like DEATH because it was that foul, I would get that like 2-3 days before I even began my period. It would last until 2-3 days after my 7-day cycle was over. So it was a good week and a half to two weeks out of each month that I would have the odor. It didn't start being a daily problem until after I had my now 4-year old daughter. I think I overwhelmed my liver with choline during my pregnancy because I ate super healthy since I was diagnosed with gestational diabetes and I wanted my daughter to be fine and healthy you know? I ate lots of broccoli and cauliflower (both high in choline) EVERY DAY. I ate lots of whole wheat bread and pasta. I ate a lot of meat because my body NEEDED protein.

As far as the DEATH odor associated with my cycle goes. I can't really say that the pill helped in many ways. I've now been off of the pill since August and I've noticed more odor-free days. If you read up on the pill it can actually increase odor problems with people with TMAU which again leads me to believe that this problem is associated with hormone levels, but that's another story. The pill was a GODSEND in that I no longer had to live with the TERRIBLE DEATH odor. But... now I had odor on a daily basis! Ugh!

So, if you are a women that has TMAU and really terrible smelling periods.... I would recommend what my ob/gyn is doing now. I am getting shots of LUPRON which basically throws you into a chemically induced menopause. I know, that part sucks. But... I no longer have to remember to take a pill and have a daily odor from that. I no longer have periods AT ALL not even every 12 weeks! I had a LOT of hot flashes in the beginning but now my system seems to be getting used to this new way of living and they are less frequent.

Don't get me wrong... I still battle odor! Oh do I! But... it doesn't ever get to the level it did when I was on my period. And... I am now able, if I follow the low choline diet strictly, to have about 3 days a week being odor-free or so mild that I am the only one to notice it.
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Re: Are the reactions you get this bad?

Postby flower » Mon Dec 06, 2010 9:15 pm

Very interesting,

I like to read all the things you all are going through....
...because I recognise a lot of things...

I have an IUD (intra uterine device) for the same reason.
So I am not so much in my periods anymore.
but it gives hormones in the uterus. But when you take the pill the dosis of hormones is much higher.

So I am not sure things are going better at the moment or worse.
It s very difficult for me to know this.

Thanks for all the experiences

I must say I still have a few friends who are very kind.

Flower
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Re: Are the reactions you get this bad?

Postby lyndsey » Wed Dec 15, 2010 5:56 am

Hi Sk

Sorry to hear of your break Im just home from Egypt and have decided thats the last flight Im taking. The Egyptians were lovely friendly people however their diet didnt agree with my stomach and I ended up living on their sweet stuff and bread for the rest of the week. Not good for my odour I had people sit at the next table and move away. One Russian girl was laughing and said Im going up to her to tell her she is stinkin and then give me a huge dirty look. I was carrying two teas one day outside and the man in front let the door bang on my face and he was from Belfast. At the airport I brushed my teeth three times, people moved to different queues and one man stated to his daughter there is the dirty bitch now. On the flight people sitting around me and my daughter were asked if they wanted to move, needless to say the whole row beside me moved and the two teenagers behind me made fart noises and laughed during the flight about smelling pooh. I know the diet didnt help on hols but I think mentally it has set me back months. I just feel so down and my daughter still states she cant smell me even though she was present when all this happened and she feels I am letting this take over my life. Any advice guys how I get back on track here.

p.s havent been on for a while and have missed you all.

Take care

Lyndsey x
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Re: Are the reactions you get this bad?

Postby Lisa » Wed Dec 15, 2010 10:15 am

Hey Lyndsey, so sorry to hear you've had a bad time of it. Makes my blood boil when I read things like this. I would of said something, ignorant R's holes they are. Please dont let their callous remarks get you down. You wont ever see these people again, (hopefully), so put it to the back of your mind. I know exactly how you feel, back to square 1, n kicked in the teeth? Forget them, your family and you are all that matters. Pick yourself up, n dust yourself down, smile, and hold your head high. You're worth a million more than those morons. Remember, we're all here for you. Chin up darlink, thinking of you.x (((((((((((((hug)))))))))))))
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