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keith

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Posts: 45
Reply with quote  #1 

I just wanted to write about a trip to Disneyland Paris I had a few weeks ago.

My young daughter has a chronic health condition and was lucky enough to be offered a wish by the Starlight Wish Foundation. Her wish was to be a princess for a day at Disneyland and to meet Cinderella.

 

I was really excited for her but also nervous about how loud everything was going to be and how I would manage.

 

The journey wasn’t too bad; I managed the short flight OK. We made it into the park by midday and yes a lot of the rides and shows were very loud with high volume sound effects and screaming people. The noise did cause me some ear discomfort and triggered off the tightness and dull feelings I get in my ears, but I got through it all by saying to myself something I read on this forum recently. I remembered someone using the quote “Pain is inevitable but misery is optional” and that made me smile and be thankful for where I was having fun with my family.

 

I do find that I can tolerate more when it’s somewhere I want to be or something I want to do. Also at Disney things did seem to recover faster because I was on the go moving from one attraction to another and not dwelling on my problems.

 

At work I will sit there with my mind focusing on any ear discomfort, I find it much more difficult to be positive at work and that just prolongs the symptoms and makes things worse.

 

Anyone else been to Disneyland?

How did you get on?

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Marilyn

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Posts: 194
Reply with quote  #2 
Hi Keith,
You are an unsung hero, in my opinion.  No one will know your love and sacrifice you made giving your daughter a good time on her special day.  I'm glad to hear you made it through the Disneyland experience.  That really blessed me.

Do you mind if I ask what illness your daughter suffers from?  If you'd rather not say, that's okay.  I'll say a prayer for her.  I understand how hard it is to have a child who is ill. 

How are you doing with your LDL's?  The last I remember, you said yours tested in the 50's range?  It sounds as though you've improved a lot to tolerate Disneyland?  Paris, no less.  Makes the California Disneyland I went to as a child seem very ordinary, lol.

I've also had problems with my tensor tympani muscle tightening, and am doing much better relaxing.  How are you doing?

Best to you!


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Johnloudb

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Posts: 1,951
Reply with quote  #3 

Hi Keith,

Thank You for sharing that. God bless you and your daughter. 


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pattiluv

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Posts: 828
Reply with quote  #4 
keith,

i agree with everyone else, you are a true hero to have gone there. i send you the best wishes and empathy for your daughter's situation.

when my h was worse, i couldn't even be a block away from the santa cruz amusement park, all the screaming and thunder from roller coasters, etc.

as to whether h is easier to handle when we are enjoying ourselves, i actually think it is, to some extent.

h is the measure of our sound tolerance. misophonia measures what we like/don't like in terms of sound. people with h have both, usually.

when i am absorbed or having fun i can handle more sound. the misophonia is less. and i know there is a connection between the two in my brain.

however, if i go beyond my limits - or push myself for too long-  i get a setback.

fortunately for me, these days, that mostly shows up as just increased t for a few days or a week. (sounds like a gas leak).

so the trick is to push yourself (myself) slowly. don't overdo. learn to acclimate to higher sound levels.

i honestly feel that each case of h is different.

mine seems to be resolving slowwwllly.... (i've had it for 2.3 years.) so everyone needs to calibrate for themselves what they can and cannot handle.

sounds and funny noises don't spook me as much. but, i never take h for granted. it's too scary when i think of what i went through. i'm just glad it's resolving. my best guess is another year or two at this rate before i feel normal, though, i don't think i'll ever go to rock concerts!

i have heard of some people who recover and do play in  a band... well, at least one person. so there is always hope.

warmly,
pattiluv

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keith

Registered:
Posts: 45
Reply with quote  #5 

Thanks for your comments.

 

I have good and bad days with my sound tolerances as I imagine everyone on this forum does. I can go through a period of time when my ears feel pretty good and then something happens and I have a bit of a set back. I do feel that as progress happens so gradually that I don’t realise how good it was until it’s gone again.

 

I try to work on positive thoughts and relaxation exercises when I have trouble with the tensor tympani muscles tightening and sometimes this helps with recovery, usually things are a bit better the next day.

 

I think I agree with pattiluv that it is probably misophonia that I am talking about when I say I can tolerate a lot more when it is something I want to do or somewhere I want to go. It fits the definition a lot better.

 

I can handle a bit more in the way of general background noise than I used to. Its sudden noises that are my biggest problem, like door bangs and car horns etc. They will cause my ears to react every time and it can be anywhere from next day to a week for things to settle down. I guess I just need to keep working on tolerances and eventually these will become less of a problem.

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