DIFFERENT
11-26-2007, 08:39 AM
i am a 22 year old australian female with tourette syndrome. i diagnosed myself just over a year ago after watching a documentary on it and had it confirmed by my local doctor of which i am her first ever TS patient. after suppressing and attempting (not very successfully) to hide tics for 10 years (onset age 11).
my parents did attempt in the beggining to find out what was wrong with me and i was placed on several different nasal sprays (snorting is my main tic which i cant hide) obviously unsuccessfully. my father was more accepting on me than my mother whom tried to embarrass, hit and scream it out of me. clearly this didnt work. only caused alot of resentment and probably a major contribution to why our relationship over the years has completely broken down and i have no contact with her these days.
i would just like to say to all those parents out there please do not do this to ur child it does not help. i was constantly told to "shut up" and "stop it" and the problem with that is that I JUST CANT. this is what most people find the most difficult thing to comprehend about the disorder. we cant stop no matter how hard we try. i am fortunate enough to be able to surpess the tics for hours on end but at then end of the night it take sometimes hours to settle down. and when i am confortable around someone the tics seem to come out more and i cant supress them as much. before i was on medication (catapres 100) i had insomnia so badly because i spent all day at school supressing the tics and had major 'fits' when it came time to sleep. was even on hard sleeping pills (stilnox) to get some rest. i have found that despite the meds i am on as i get older the tics seem to be getting worse i am assuming due to my increased stress levels, which i think just comes with age i guess. i think i have also developed mild obsessive combulsive and impulsivity. i have rage attacks and get so frustrated sometimes that i pinch myself, pull my hair out etc. i spent 6 months seeing a psychologist to help deal with my anger and frustration better. i am about to start university (psychology degree - go figure) and i am worried about how i am going to go living in a 5 bed share house with complete strangers as well as keeping quiet through 2 hour lectures. i dont feel comfortable going to the board of disabilities because then i will be labled disabled. i dont have learning abilities but if i did approach them i think it would ease my stress because there is things they can do to ease my work load etc. i think this is something i will have to do but will need to pluck the courage up to do so.
the most difficult thing about having tourettes is telling people. very few people know about my disorder and those that do dont understand and i find it difficult to talk to them about it. when i am at work if i cant surpress the tics anymore i go to the bathroom to do it or in a corner where no one will hear me. it is very draining and very frustrating and almost impossible to ever relax. i was a marijunana abuser for 4 years because this was the only way i could relax but unfortunatley that has had deteramental effects on my brain (especially the fanstastic spelling and english skills i once possessed has disipated quite dramatically) so i try to stay away from that these days. neway im rambling now. i think i just needed to vent this because it is hard to keep such a thing inside all the time. i know how frustrating it is to be around a person with tourettes especially annoying vocal tics like soem of the ones i have but i just want people to know that when they are getting frustrated to stop and think, 'wow if it is this frustrating listening/watching the other person ticcing just imagine how frustrating it is actually phsycially living with it on a constant day to day basis.' and give us some slack please
my parents did attempt in the beggining to find out what was wrong with me and i was placed on several different nasal sprays (snorting is my main tic which i cant hide) obviously unsuccessfully. my father was more accepting on me than my mother whom tried to embarrass, hit and scream it out of me. clearly this didnt work. only caused alot of resentment and probably a major contribution to why our relationship over the years has completely broken down and i have no contact with her these days.
i would just like to say to all those parents out there please do not do this to ur child it does not help. i was constantly told to "shut up" and "stop it" and the problem with that is that I JUST CANT. this is what most people find the most difficult thing to comprehend about the disorder. we cant stop no matter how hard we try. i am fortunate enough to be able to surpess the tics for hours on end but at then end of the night it take sometimes hours to settle down. and when i am confortable around someone the tics seem to come out more and i cant supress them as much. before i was on medication (catapres 100) i had insomnia so badly because i spent all day at school supressing the tics and had major 'fits' when it came time to sleep. was even on hard sleeping pills (stilnox) to get some rest. i have found that despite the meds i am on as i get older the tics seem to be getting worse i am assuming due to my increased stress levels, which i think just comes with age i guess. i think i have also developed mild obsessive combulsive and impulsivity. i have rage attacks and get so frustrated sometimes that i pinch myself, pull my hair out etc. i spent 6 months seeing a psychologist to help deal with my anger and frustration better. i am about to start university (psychology degree - go figure) and i am worried about how i am going to go living in a 5 bed share house with complete strangers as well as keeping quiet through 2 hour lectures. i dont feel comfortable going to the board of disabilities because then i will be labled disabled. i dont have learning abilities but if i did approach them i think it would ease my stress because there is things they can do to ease my work load etc. i think this is something i will have to do but will need to pluck the courage up to do so.
the most difficult thing about having tourettes is telling people. very few people know about my disorder and those that do dont understand and i find it difficult to talk to them about it. when i am at work if i cant surpress the tics anymore i go to the bathroom to do it or in a corner where no one will hear me. it is very draining and very frustrating and almost impossible to ever relax. i was a marijunana abuser for 4 years because this was the only way i could relax but unfortunatley that has had deteramental effects on my brain (especially the fanstastic spelling and english skills i once possessed has disipated quite dramatically) so i try to stay away from that these days. neway im rambling now. i think i just needed to vent this because it is hard to keep such a thing inside all the time. i know how frustrating it is to be around a person with tourettes especially annoying vocal tics like soem of the ones i have but i just want people to know that when they are getting frustrated to stop and think, 'wow if it is this frustrating listening/watching the other person ticcing just imagine how frustrating it is actually phsycially living with it on a constant day to day basis.' and give us some slack please