Re: I'm Scared and feeling frustrated now more than ever....
Hey Dan!
I hear your pain and I just want you to know that I too have TMAU and I share in your pain. I so highly respect those of you who had their TMAU onset early in life. How difficult it would be to grow up with this ugly beast.
I have had TMAU for 5 years. I am 37. I am so thankful in that my husband of 19 years does not have the protein enzyme in his nose to detect TMAU odors. This of course, made it difficult at my onset because as my life was falling apart my husband could not smell or appreciate what was radically happening to me. Time has passed though, and I know that I can be safe at home...free from the coughs, sneezes, looks, and comments.
Do you work outside of the home? How are you doing now? Does your family know and understand TMAU? Does your doctor?
I am a military wife. The Army did not understand or support my TMAU journey but I have educated them and continue to do so as we move from duty station to duty station. My family understands my TMAU and they fully support my journey. I used to be a teacher/interventionist and stopped working. I think that it is hard when your background is "service" related to the general public. Because my onset happened mid-life I feel like I missed out on a lot of the coping skills that unfortunately happen as a result of growing up with the rude comments. I have been to every specialist there is at this point and am still learning about TMAU first hand.
I admit the bad days are BAD DAYS but, they don't last forever. Eventually your body will become too exhausted and you'll naturally bounce back for a while. I think I feel best when I am feeling supported by a fellow sufferer. WE UNDERSTAND!
My best to you!!!