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The "Butterfly's Whisper" Blog

Welcome to my blog. I hope by sharing my own misophonia experiences, others who are frustrated with misophonia sensitivities will discover that they're not alone. I also hope that people who may not have misophonia will gain some insight about what it's like to have this condition.

Please feel free to post any comments or use the "Contact Us" page if you have any questions/comments you don't want to post online.

Contact ME

Misophonia beyond the sound triggers

3/19/2016

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Over the past year I've noticed that misophonia has been getting a LOT more mention in the public realm - especially when compared to the limited amount of information that was available back in 2012 when I first learned about it. So many more blogs, interviews, research studies, websites and this coming mid-June there will be a special screening for a new film documentary about misophonia. It's so exciting to know that misophonia may eventually become as well-known a condition in the main-stream realm as dyslexia or autism is now (as compared to when people were first learning about those conditions).

The one thing that I'm hoping will eventually improve is people's understanding that misophonia is not just about sound sensitivity, but that it affects other senses as well. Granted, misophonia literally translates to "hatred of sound" but my misophonia experiences this week were perfect examples that this condition extends beyond aural sensitivities, even if the aural ones still play a huge factor with my discomfort...

Probably the most notable scenario  from this week was when I had an initial meeting with a mentor to help me improve my business/managerial skills. We agreed to meet at a coffee shop, which has been a venue type that I've been frequenting over the past few years whenever I want to get out of the house and do some writing. Unfortunately, there was an unusual customer in the place where we were scheduled to meet. What I mean by that is sitting at a table adjacent to the only one left for us to sit was a man plucking away at a guitar while wearing headphones. I love listening to live music but he wasn't one of those coffee house 

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Sometimes it helps to talk about misophonia...

3/12/2016

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Ever since I learned I had misophonia, I've been more vocal about expressing when triggers bother me, instead of keeping the stress of the annoyances bottled up. I don't mention my discomfort every single time, I'm pretty selective based my gauging the situation - whether I feel the person may be understanding or hostile by the request... Even determining how much I can mitigate the trigger stresses by my own actions without having to confront someone (such as by putting in earplugs, pulling my hair over my peripheral vision range to serve as blinders, or even being able to re-position myself in my environment).

Today for instance, I came early to the donut shop where my meeting group regularly meets to try and snag a table for the group. (Saturday mornings are very popular for families to come enjoy a sweet ringed treat with the kiddies.) The first thing I did when I walked in the door was try to scope out a table that would be large enough for the group. It was so packed with families when I arrived, but I was lucky to find the one four-seater table right next to the door. Without missing a beat, I specifically chose a chair that faced the door, and which would keep my view  away from the numerous visual triggers that I would have experienced by fidgeting/restless kids had I been seated facing the main seating area.

It still wasn't a perfect situation though... I hadn't put my earplugs in yet so it felt like my ears were being stabbed when a mother expressed love to the toddler in her arms by loudly kissing the toddler on the cheek. Then I got hit with another trigger by a little five-year old boy whistling with a high-pitched tune. For some reason, I find that kids whistle a lot - perhaps because they are intrigued by the sound they're able to make. In those situations, I know better than to approach the child. I only approach a parent if the sound is so piercing that it goes through my earplugs/earbuds but even then, it's rare that I do it... Some times when I have expressed my comfort by a child's whistling, the parent gives me a dagger stare like how dare I complain about their perfect child. It's just not worth it to me...

There are times when I do feel comfortable expressing my discomfort in public situations though and the results are more positive. I mentioned about taking the little box of gum from a reception desk's candy bowl as a trigger preventative action and when I explained why I did it to one of my sales rep friends, he was not only intrigued about misophonia and wanted to learn more, since then we've had very interesting discussions about my experiences.

I also once told the travel agent who handles my company's flight/hotel reservations about my misophonia - mainly because she wanted to help me select my seats for upcoming flights. I explained to her about my misophonia and even my thought process when looking at a seat map. E.g. Will the seat be too close to the galley area where the constant sounds of the flight attendants opening soda cans will trigger me? Are both seats taken behind a potential seat for me or only one seat, with the seat next to it being empty? If both the seats are taken (or even all three seats in a three seat row), then to me that means that a couple/family/or even two people who know each other well want to sit together - which means they'll likely be talking during the entire flight. If only one of the seats are taken, then most likely the people sitting in that row will not know each other and will be less likely to want to hold a long conversation during the flight. (Mind you, that logic doesn't always work because some times people who may not know each other could still spark a long conversation, but that scenario is much less likely to happen).

Ever since I told the travel agent my misophonia trigger mitigation logic, she tries to keep that reasoning in mind but unless I don't have access to the seat map before my flight, more often than not I'll still check to see if there may be potential better seat options. Sometimes it's just looking at the situation and gauging the feeling in your gut... Trying to avoid triggers in public places is never going to be a perfect situation. All I can do is be proactive with managing my comfort levels as best as I can.
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Misophonia documentary & other resource updates

3/6/2016

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I've been trying hard to get back into the swing of adding new misophonia resource links and this week had many updates...

First is a film documentary called:  "Quiet Please: An emotional documentary exploring Misophonia, a disorder related to the processing of specific sounds in the brain - resulting in a life of anxiety, rage, and isolation." I've had the pleasure of communicating with the director, Jeffrey Scott Gould and hope to have a chance to see the upcoming screening.  The director is even trying to raise funds to make it a full-length feature film. For more information, go to the IndieGoGo site for the "Quiet Please" documentary. Please support this effort to promote more public awareness about misophonia!
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 Some other new podcasts and articles include: "Episode 30: Misophonia, Prioritizing What's Important, And Being a Messy Bessy with Ashlae Warner of Oh, Ladycakes" and "Episode 49: Living with Misophonia in a Noisy World with Jeffrey S. Gould of Quiet Please" (two misophonia podcasts on the Jessica Murnane website), and "Kelly goes queasy at sounds of eating: Star, 31, reveals she gets ansious and uptight if she hears chewing, chomping, or slurping" - An article in the online UK periodical the DailyMail.com. (Article Published October 31, 2015).

I've also connected with The International Misophonia Research Network,  whose organizers, Dr. Jennifer Jo Brout  and Shaylynn Hayes I've had the pleasure to have some wonderful correspondences about misophonia. When I mentioned to Dr. Brout my thoughts about misophonia being a neurologic/sensory issue and not just a sound issue, she suggested I check out the Sensory Processing Disorder Foundation's website. Shaylynn Hayes also mentioned a new misophonia awareness movement. For more information, check out the Misophonia Awareness Movement website or #MisophoniaAwareness.  Another misophonia  website I found is The Misophonia Institute, directed by Tom Dozier.

All of the above website links, and other resources, can be found under the "Resources" tab on this website. If you know of additional articles, podcasts, research, support groups, or other information about misophonia, please let me know through the "Contact" page. I want the SenseHaven.com website to be an ongoing  resource of misophonia help for sufferers and non-sufferers alike!
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    About the Author

    Emlyn Altman has been suffering with misophonia for over 35 years, even though she only found out about the actual medical condition much more recently. As frustrating as the condition has been over the years, her heightened sensitivities across all the senses considerably influenced her talents within the visual fine arts (particularly sculpture), music (singing, piano, and many other instruments), writing, and culinary backgrounds, as well as professional achievements as an architectural lighting designer. Her goal in developing this website is to promote more awareness about misophonia and help other sufferers as well.


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