annaliesey Posted July 1, 2016 Share Posted July 1, 2016 My DD has been encouraged by her CAT to write a few words explaining tinnitus from her perspective with regards to teaching experiences, struggles etc so this is her post that I've helped her with. I thought I would share it here for the teachers, dancers and parents among us to get a little insight into her world of tinnitus Tinnitus post I have tinnitus. It's a constant sound in my head. For me it's a high pitched 'eeeeeeeeee' all the time. Yes I mean ALL the time. Always. Sometimes quiet and sometimes really loud. When it goes from quiet to loud we call it a "spike". My T spikes when I'm in silent situations like exams or silent reading lessons. Most of the time I am used to it and it doesn't bother me because there is background noise that my brain listens to. I have little hearing aids now that play a gentle quiet sound of ocean waves into my ears at a pitch set by my audiologist (I love that woman!) and this helps to keep my T quiet for most of the time when I'm in quiet situations. It's fantastic for me but sadly doesn't work for all tinnitus sufferers, especially those with a hearing loss which I luckily don't have. I only wear them when there is silence or things are pretty quiet or when I think they'll help me keep spikes under control. Anyway, if you come across a dancer like me, it might help you to know that I'm not ignoring you when you think I am. It's just that I might not have got all of verbal instruction straight away as T might have spiked just as you were talking. I might appear to be daydreaming or have "brain fog" or be "away with the fairies" (how many times have I heard that!) Imagine someone chatting to you but then someone drags their cutlery on a plate and makes a horrible sound. Of course you can hear them. Of course you understand them. You're not thick are you? Yes you are trying to concentrate, yes dance is important to you, yes you want to pass your exam and get the correction or choreo. You would just be distracted for a slight moment, that's all. If I don't "pick up" quickly enough for you it's not that I'm not trying. It's not very nice to have people roll their eyes, or tut, or make rude comments and gestures. I'm not thick or stupid! I know the "dance world is tough" but I wouldn't be in your class or audition if I didn't think I should be here. My regular teachers know about my quirky T stuff now and it's all good. They know I'm making an effort to listen. My dance friends also know that if I'm concentrating on the teacher and music I might not get what they say if they talk to me in classes. I had a friend comment that she liked my leotard but I had no idea that's what she said until we spoke out of the class! I was just too distracted with T. My regular teachers know that right now I'm there for training and not for every lesson to be a contest on who picks up the quickest. (Notice I said quickest and not best!) Thankfully where I train the teachers are more passionate about artistry, expression, technique, posture, lines, placement, choreo, musicality and timing than they are how quickly your memory works with remembering a sequence of steps. They would rather go over things at a normal-to-fast pace with great teaching methods than rush through super fast with not much effort where only the sharpest memories survive for adequate outcomes as a group. I certainly don't want to go through life wanting special treatment. I just need to focus on developing my weaknesses in the best way I can without letting people's ignorance or crappy personalities get to me. I'm my own harshest critique and I push myself harder than anyone else pushes me. If you're not a regular teacher you might notice me biting my lip, chewing my fingers (they are a bit of a mess but I'm working on that) or when it's really bad, digging nails or a bun pin into my scalp or sneakily pulling out strands of hair (you'll think I'm just scratching my bun probably). I'm not nervous just trying to distract myself from T. I know I should ask you to go over something sometimes just once more when you've already gone over it several times with the whole class and you think I should have got it when they did. I'm better at this now but I used to feel so embarrassed and stupid doing this and really fear doing this because of consequences. I used to fear teachers making snide remarks, talking about me behind my back, talking about me in front of others which was even worse by somehow trying to shame me into picking up quicker. Or maybe just by insinuating I shouldn't be in that class or grade or dance piece. I obviously have felt awkward when other dancers are made to 'run it one more time' and they would think it's because I'm not paying attention. I remember one time when I was about 8, I was hit over the head with a water bottle by a senior dancer because she was frustrated I was letting the side down and she wanted to go home. Sorry to her for not being honest at the time. That incident did actually teach me a few lessons Depending on the class or audition I'll be able to hide things very well and you would never know my brain is screaming at me. I might be the person that inches closer to you if I can't focus on your verbal instructions. Or maybe I like to be near a fan, window or door (I like the quiet background noise even with loud music!) I'm not being a diva or attention seeker (although I do have diva in me!) At the moment I'm trying hard dancing at the back through choice to make myself work harder. Or maybe I won't naturally keep still. My instinct is to fidget but I won't if it's important not too (on stage). You wouldn't notice my effort as I'll cover this up very well. I can do it fine I just prefer to keep moving somehow. I like to chew gum if it's allowed instead of my lips or nails. I don't mean to be rude. It just helps to hear chewing sounds in my head and focus on my mouth moving., I might take a toilet break, if I can, just simply to get out of situations that are uncomfortable, maybe do a couple of minutes breathing exercise, or run the tap in the sink (crazy but it helps). If the music is super-loud I will now be wearing ear protectors (so should everyone btw or turn the music down or you'll get T too). If I'm feeling brave I might ask you to go over something again. Sorry. If I'm not feeling brave I will blag it, or watch other dancers and be ever so slightly behind them for the first couple of times. If my confidence is suffering I might try to blend in at the back and seem a bit withdrawn from the class but I am getting better at knowing when I'm doing this now and find the courage to not do this no matter how much I might want to. Dance is my release. It's the one thing that I have to do. I literally count the hours until I can dance again or at least listen to music and tap my feet. I have to keep my body moving or listen to sounds to shush my T up. It makes me happy and keeps me sane. I won't stand still for long if I don't have to. On trains I will 'chair dance', in corridors I will jete, down stairs I will do rhythm steps and turns, I will tap time steps brushing my teeth, supermarket aisles are places to chene... Etc. I know other tinnitus sufferers who are just as absorbed in other hobbies such as swimming as its where they get their comfort. Sorry if I'm a pest in our regular classes. Sorry if sometimes I'm a bit quiet, withdrawn, or hesitant for fear of embarrassing myself and looking stupid. And sorry if I'm a bit loud or talkative or active. Distraction is my kryptonite and I can guarantee that if someone talks to me in class when they shouldn't do, I will find it nearly impossible to ignore them and not talk back. It's a strong reaction I find enormously difficult! Haha Occasionally I might be a bit tired as T sufferers usually struggle to get enough sleep but I'm strict with myself and OK with sleep but when there's shows etc and it's late nights and early mornings, I might have got a bit less sleep than others because of how long it takes me to actually drift off to sleep. I'm learning ways of ignoring my T and should be sorted very soon as I try to "habituate" which is basically get used to it. But bear with me as I'm trying my best right now and it's early days for me since I was diagnosed properly. Hopefully this will help if you come across anyone else like me that isn't quite as sorted as I am now. If I hadn't told you about my T you would never know. If you are a dancer with tinnitus and younger than me I just want to say "hang in there". Don't worry about this pressure to pick up quickly when you are young and just worry about being the best you can be and don't compare to everyone else. Teachers and choreographers always want the best dancers to represent their schools or pieces or get high exam marks and their 'best' dancers might not always be the people quickest at picking up. The 'best' dancers I know are just ones who are simply awesome to watch! Think about it, nobody asks them how quickly they leant it. Things that help are paid private lessons to catch up if you miss a class or rehearsal rather than put yourself under pressure to catch up in a big, fast group. Toilet breaks help, as does chewing gum if allowed, but above all have the courage to ask a teacher or choreographer to go over things again. Other than that, think yourself lucky every day that you have the chance to dance and don't let T or anyone else dim your sparkle xxxx 10 Link to comment Share on other sites More sharing options...
Pixiewoo Posted July 1, 2016 Share Posted July 1, 2016 That's brilliant, thank you. Well done to your DD, she comes across as a very mature and lovely girl. My DD suffered a variable hearing loss that none of us knew about for about 2 years, then it took another 2 years before anything was done about it. She still has a little hearing loss, but it is at a frequency that isn't used for long lengths of time. She has had to work out how to deal with this in both dance and school classes. x 1 Link to comment Share on other sites More sharing options...
MAK Posted July 1, 2016 Share Posted July 1, 2016 Wow, what an amazing post. You must be so proud Annaliesey. I hope this reaches lots of people. 1 Link to comment Share on other sites More sharing options...
Vonrothbart Posted July 1, 2016 Share Posted July 1, 2016 (edited) That's a marvellous post annaliesey, and I reckon you have the right attitude to help you along, as you definately CAN train yourself to help deal with the problem. Tinnitus can be a horrible problem, and when I am having an extra bad day with it, it sometimes annoys me when someone asks you if you're feeling ok, as it obviously shows, is when they reply, oh I get that all the time. The sounds in the head I mean, which most people I'm sure do get, but although I've had a super few months with the Pulsatatile Tinnitus, it's come back with a vengence. (Pollen doesn't help) It helps when I tell myself it's not going to kill me, like some poor peoples illnesses do, so just get on with it. I agree regarding sleep, as it's not nice having to get through the day whilst still tired. Good luck. Edited July 1, 2016 by Vonrothbart 2 Link to comment Share on other sites More sharing options...
annaliesey Posted July 1, 2016 Author Share Posted July 1, 2016 That's brilliant, thank you. Well done to your DD, she comes across as a very mature and lovely girl. My DD suffered a variable hearing loss that none of us knew about for about 2 years, then it took another 2 years before anything was done about it. She still has a little hearing loss, but it is at a frequency that isn't used for long lengths of time. She has had to work out how to deal with this in both dance and school classes. x Its horrible when you as a parent know they've had something that you haven't realised about. But it's so easy for things to go unnoticed My DD had build up of solid ear wax aged about 6 and had her ears syringed. In hindsight this may have increased the tinnitus but we don't really know. Hopefully your DD will find good coping strategies and I think children are pretty good at this as they will try things that older people might not think about or would assume they shouldn't do. For example the chewing thing for her has been very interesting! 1 Link to comment Share on other sites More sharing options...
annaliesey Posted July 1, 2016 Author Share Posted July 1, 2016 That's a marvellous post annaliesey, and I reckon you have the right attitude to help you along, as you definately CAN train yourself to help deal with the problem. Tinnitus can be a horrible problem, and when I am having an extra bad day with it, it sometimes annoys me when someone asks you if you're feeling ok, as it obviously shows, is when they reply, oh I get that all the time. The sounds in the head I mean, which most people I'm sure do get, but although I've had a super few months with the Pulsatatile Tinnitus, it's come back with a vengence. (Pollen doesn't help) It helps when I tell myself it's not going to kill me, like some poor peoples illnesses do, so just get on with it. I agree regarding sleep, as it's not nice having to get through the day whilst still tired. Good luck. Thank you we are trying so hard to have the right attitude. She's probably better than me actually. A month ago we were at Covent Garden and this man behind us just whistled a stupid tune right in her ear as we were squashed together in the crowded walkway to the lifts. i could see her flinching and I had to say something, but there's no way she can deal with stuff like that and inconsiderate people. I mean tinnitus or not, who wants to listen to random whistling right down your lug hole!! Sorry to hear about pulsating T .. Her masking aids have made a huge difference so maybe that's an option for you via your audiologist? She also listens to a variation on relief sounds from an iPhone or iPad app called 'Oticon' to help her sleep and she goes through a little sleeping ritual with breathing exercises! It doesn't matter if it's midnight and school in the morning, she hates to be hurried! You can also get tinnitus pillows so you can listen to music or sounds via your pillow. We didn't get through specialist suppliers but impulse-purchased on in the Menkind store. Hope you can get some relief Link to comment Share on other sites More sharing options...
Vonrothbart Posted July 1, 2016 Share Posted July 1, 2016 Yeah annaliesey, I've been through everything possible to try and combat the problem. I do have a couple of hearing aids, that actually do help, but then I get another problem if I have them in all the time. Doh!!! One of the worst things for me, is the ridiculous sound of most of the hand dryers in public toilets. I do get some strange looks when I press the button, then try and cover my ears as quick as possible. ( one at a time of course, or they wouldn't dry ) I do have a spray that I sometimes use from around March time to October, it does help but I will only take it when I'm desperate, as I don't like the idea of depending on these things. I had a serious head injury when I was younger, and that almost certainly caused my problem, but thankfully I survived whereas a lot of people don't, so really I shouldn't complain. 1 Link to comment Share on other sites More sharing options...
annaliesey Posted July 1, 2016 Author Share Posted July 1, 2016 I know what you mean about counting your lucky stars but hope you can find things to help. DD says the super powerful hand dryers; ie McDonald's .. She won't use them and wipes her hands on her jeans or leggings Link to comment Share on other sites More sharing options...
charlie4dancin Posted July 1, 2016 Share Posted July 1, 2016 I know what you mean about counting your lucky stars but hope you can find things to help. DD says the super powerful hand dryers; ie McDonald's .. She won't use them and wipes her hands on her jeans or leggings Hello annaliesey it was super reading your dd's words thank you for sharing... my dd is also CAT and has a chronic ear condition which started when she was 11 she is now 15 and has only managed 2 wks dance this year and hasn't been to school since May... She is waiting surgery and continues to try and stay positive which at the moment is very difficult as she struggles to even get out of bed and cannot walk unaided thankfully her teachers on the CAT program have been very understanding and she refuses to give up hope that she can one day get back to dancing 4 Link to comment Share on other sites More sharing options...
Karen Posted July 1, 2016 Share Posted July 1, 2016 A really interesting post and food for thought for all of us to consider. I expect there are quite a lot of non visible conditions that people are living and coping with who might say the same thing. I hope your daughter finds it easier to live with her condition as time goes on and that people she comes into contact with treat her with care and kindness. 1 Link to comment Share on other sites More sharing options...
joyofdance Posted July 1, 2016 Share Posted July 1, 2016 That was really interesting to read Annaliesy. You must be so proud of your DD, her insight and tenacity is extremely admirable. X 1 Link to comment Share on other sites More sharing options...
Klaris Posted July 2, 2016 Share Posted July 2, 2016 Wow! This is a wonderfully honest and moving testimony by your daughter. I can only imagine how proud you are of her She has been able to explain her condition, the effects it has on her physically, mentally and emotionally, in an exceptional way. I'm sure this will also help so many other young people out there who are going through their own personal challenges - whatever they may be and in whatever field. Thank you to your dd for allowing you to share this with us all Link to comment Share on other sites More sharing options...
annaliesey Posted July 2, 2016 Author Share Posted July 2, 2016 Hello annaliesey it was super reading your dd's words thank you for sharing... my dd is also CAT and has a chronic ear condition which started when she was 11 she is now 15 and has only managed 2 wks dance this year and hasn't been to school since May... She is waiting surgery and continues to try and stay positive which at the moment is very difficult as she struggles to even get out of bed and cannot walk unaided thankfully her teachers on the CAT program have been very understanding and she refuses to give up hope that she can one day get back to dancing Oh bless your DD and I hope she gets her surgery soon and everything goes OK for her. So awful to hear she has been this poorly. It's things like this that make my DD challenges so trivial. I had a friend years ago who had a terrible time with vertigo and labyrinthitus that completely disabled her for a year but she did make a full recovery. We just never know what's round the next corner Good luck and best wishes to your DD ???? 1 Link to comment Share on other sites More sharing options...
annaliesey Posted July 2, 2016 Author Share Posted July 2, 2016 A really interesting post and food for thought for all of us to consider. I expect there are quite a lot of non visible conditions that people are living and coping with who might say the same thing. I hope your daughter finds it easier to live with her condition as time goes on and that people she comes into contact with treat her with care and kindness. Thank you Karen ???? She mostly wanted to try and say to people not to treat someone like they are stupid and call them names or embarrass them when there could be lots of reasons why people are a bit quirky I'll show her these comments tomorrow xx Link to comment Share on other sites More sharing options...
annaliesey Posted July 2, 2016 Author Share Posted July 2, 2016 Thank you joyofdance and klaris its been a good exercise for us both to do together. I'm proud of the way she wants to share her behaviours as I think there are many dancers and possibly dance parents who are fearful of letting people know their or their children's weaknesses or conditions. It seems to be frowned upon sometimes to come out with medical conditions. 2 Link to comment Share on other sites More sharing options...
Fiz Posted July 3, 2016 Share Posted July 3, 2016 I do feel for your poor dds, Anna and Charlie. Our youngest also had a severe attack of labrinthytis when she was 14 and she wasn't right for several months. At one stage our GP thought she might have cancer. It was a terrifying time. 1 Link to comment Share on other sites More sharing options...
annaliesey Posted July 3, 2016 Author Share Posted July 3, 2016 I do feel for your poor dds, Anna and Charlie. Our youngest also had a severe attack of labrinthytis when she was 14 and she wasn't right for several months. At one stage our GP thought she might have cancer. It was a terrifying time. Gosh Fiz, that's horrendous Link to comment Share on other sites More sharing options...
Huddsballetmum Posted July 5, 2016 Share Posted July 5, 2016 What an insightful and well written post by your DD Annaliesey. You must be so proud of your DD and her positive attitude. It was extremely useful to be invited to an insight of the difficulties a young person with tinnitus has to overcome, not only for dancers but for other young people with the same condition. Thank you for sharing. 1 Link to comment Share on other sites More sharing options...
charlie4dancin Posted July 5, 2016 Share Posted July 5, 2016 Thank you Annaliesey & fiz Link to comment Share on other sites More sharing options...
Lisa O`Brien Posted July 5, 2016 Share Posted July 5, 2016 Thank you annaliesey, for reproducing your DD's writing about her condition on here. I suffered with Tinnitus and Vertigo for months and it was horrible. For some reason, thankfully, it went away as quickly as it appeared, and I haven't had either for over a year now. So I cannot imagine how challenging it must be for someone who suffers from Tinnitus continually. How debilitating. But your daughter comes across as being mature and sensible and well able and prepared to cope.You must be very proud of her. 2 Link to comment Share on other sites More sharing options...
Lisa O`Brien Posted July 5, 2016 Share Posted July 5, 2016 C4D, i'm so sorry to hear your DD continues to have health problems. Hoping she doesn't have too long to wait for her surgery.x 1 Link to comment Share on other sites More sharing options...
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