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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.

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It's holiday time!

10/31/2013

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I knew the day would come when I couldn't put it off any longer... Today I had to tell my aunt that I wasn't going to be coming home for Thanksgiving. This was not a spontaneous decision, and I knew she wouldn't be happy about it, but as soon as she asked me what was I planning to do about Thanksgiving, I knew I couldn't avoid the subject any more...

I've dreaded going home for Thanksgiving every year for so many years, but always felt obligated to go out of "family duty." Since learning of my misophonia last year, I realized that a lot of my stress over the holidays had to do with all the triggers that bombarded me during the major family gatherings. From the discomfort of being smothered by the family dogs to the torture at the dinner table caused by a combination of all the eating noises and chairs constantly bumping into mine as well as other tactile triggers resulting from being smooshed in the middle of the table instead of at a corner seat where I could get some elbow room... My anxiety levels are always sky high during holiday gatherings and this year I knew I wouldn't be able to tolerate it anymore. (The last time I was home was in May for my birthday and I wound up wearing my earplugs 24/7 for an entire week!!!)

On top of the usual trigger stresses from family gatherings, last year's hell also included my aunt having to drive three hours to get from their apartment to JFK airport to pick me up and then an additional 2+ hours of me driving us in bumper-to-bumper traffic to get from the airport back to the apartment. On any non-holiday day, that trip would normally take about a half hour each way. I just didn't see the point in going through all the travel stresses flying through multiple airports and then dealing with insane NYC traffic just for a few hours to be with family in more stressful situations. It winds up taking me over a month to recover from a couple of days visit home for Thanksgiving. So, as much as I knew that I didn't want to put myself through that nuttiness again this year, it was still hard telling my aunt my decision when she asked. I knew she would be very disappointed, but I said I'd try to make it up to her by coming home another time.

To be honest, I'm actually looking forward to a quiet couple of days to myself to take a breather, regroup my thoughts, and hopefully make a big dent towards completing my memoir.
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Misophonia at office meetings

10/30/2013

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As much as I've always disliked having business meetings on Friday afternoons (especially during the summer when many design firms have half-day Fridays), today it really hit me how much I don't like meetings first thing in the morning on any day of the week... They may not be as bad as lunch meetings, but even so... Whenever I find myself sitting in meetings that start before 10 a.m. on any given day, inevitably the majority of people at those meetings always have a HUGE cup of HOT coffee, and the majority of those morning drinkers slurp their coffee. (ARGH!)

At my previous firm, we always started our week with an "all-hands" staff meeting Monday mornings at 9 a.m. and I'd say at least 30 of the 40 people would always bring coffee. We all stood in the room in a quasi "U" around two central tables and it was always impossible for me to find a good place to stand where there wouldn't be someone slurping their coffee/hot chocolate/tea right next to me or behind me. It got to be a point where I started standing at the very back of the U "corners" wearing earplugs just to make sure my presence was seen. If I didn't catch something during the meeting, I'd get the synopsis from someone else later in the day.

Today wasn't quite like that, but I did have a 9 a.m. project coordination meeting with about eight or so other teammates. Of course, one of my teammates sitting two people over from me kept slurping his coffee really loud, but there was no way I could discretely get away from the sound. (I was able to gently smoosh the hand of the person directly next to me when she started drumming her fingernails on the table though.) I'm always relieved when those morning meetings are finished.

On a side note... I took a side trip during lunch today to pick up yet another pair of my favorite earbuds. I've really got to stop my habit of wrapping the cord around the phone when putting things away. I know when I do that, it puts too much tension where the wire connects to the plug and wears it out way too fast. Oh well. Being a self-professed "geek," I should know better... Maybe this third pair will be the charm and will last longest of all. LOL! Live and learn I always say...    ;-)
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Sharing "Sound Rage" with others

10/28/2013

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Today I sent a copy of Judith Krauthamer's "Sound Rage" book to the doctor whom I saw at the Mayo Clinic last December. Since I went into the examination room knowing more about misophonia than he did at the time (he Googled it right in front of me during our initial conversation), I figured I'd give him a copy of the primer for him and his colleagues to read in case anyone else approaches Mayo for help with their misophonia. For all I know, the book won't even make it too him; but if it does, I'll be curious to hear if he has any thoughts about it.

I also sent a copy to my former therapist, back in DC who, up until around 2007, I had seen to help me through a rough period of my life. (Layoff, relationship and other issues hitting me all at once.) I reconnected with her a couple of weeks ago not only to touch bases (I never told her I left DC for the Midwest a couple of years ago), but also because I wanted to tell her about my having been diagnosed with misophonia last year. I figured misophonia might have had a direct impact on my life at that time - and possibly increased my anxiety - something neither of us would have known.

It will be interesting to see if either of them read the book and respond to me.
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Cookies and misophonia sleep aids

10/27/2013

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I have to share something I just saw today. Gotta hand it to web cookies. Sometimes they do lead to useful information...

I had gotten a LivingSocial email and one of the discounted items caught my attention. (I think it was a house cleaning/window washing deal.) I clicked on the link to find out more, and when it took me to the page with more information about the deal, I saw a pop-up in the sidebar that said SleepPhones was offering a discount right now. I *never* click on sidebar ads like that, but something seemed familiar with that name. I clicked on the link and sure enough, it was the fleece headband device with the speakers that I mentioned in my 10/17/13 post. They currently have an autumn deal of 10% off any purchase of $50 or more. For a second I thought to myself, how would LivingSocial know that I was interested in that product and then it hit me... "Duh! I went to that website when researching for that blog post and probably still have the cookie on my computer."

Although I laughed to myself at how it took so long for my geekiness to pick up on the cookie connection, considering the fleece speaker headband is a product I wanted to try out sometime, not to mention it's starting to get cold out here now, the timing of that discount is pretty good. (I forgot to mention in my previous post that we did have some snow during the marketing retreat. Not enough to stick though.)

I then had a funny thought about that headband... Over the past couple of weeks, I've noticed that people in my office are starting to wear harder soled shoes (particularly boots with clunky heels). Since the floors in my office are exposed particle boards, and my desk location has a very low ceiling under one of those hard floor areas, it's been very noticeable when people are walking directly above my head. I actually had to ask our HR person if we could put carpet samples in that area to lessen the "clopping" noise. Although they did (thank goodness for being a design firm where the Interiors department has LOTS of carpet samples), I can still hear shoes clopping in the adjacent areas that don't have the carpet buffer. (The masking speakers I currently use aren't loud enough to cover up that sharp clopping noise right above my head.) I thought to myself, "I wonder if I could get away with wearing one of those fleece speaker headbands while at work..." Although the thought gave me a chuckle, I think I'm going to first try to get another pair of my favorite earbuds. (My current pair is wearing down from overuse, again!)
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Misophonia during a market leadership retreat

10/25/2013

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The past two days have been spent playing catch-up from a marketing retreat that our local offices had to discuss marketing concepts for our firm as a whole.  Leaders from three of our offices as well as project coordinators gathered at a central location to the offices about marketing issues pertaining to our firm. I'll admit that it took my misophonia trigger experiences to a whole other level, compared to "typical" office and conference situations. In this case, about fifty of us were sequestered in a single room for an entire day, save for an occassional break for lunch or snack. No one moving around... No changing rooms... Just fifty of us spending eight hours together in one space... Where even if I were try to discretely remove myself to get away from triggers, it would be very noticeable and I would also miss out on the information presented.

I car pooled with two of our principals and someone from our interior design department. Three of us had Starbucks for the hour long ride to our destination (the driver didn't want anything). Lucky for me, the other coffee drinkers in the car weren't slurpers. Perhaps the travel lids help with minimizing that trigger.

When we arrived at the community center where the event was being held, I saw the room was set-up with about ten large round tables. At the front was a screen where one of the architects set up a projector, camera on a tripod, and his computer to record everything. Of course, I wanted to make a bee-line for the front table so that I wouldn't be distracted by potential visual triggers, but as I moved to the front, I noticed everyone else was filling up the back tables. I struggled trying to figure out where to sit. I wanted to be comfortable and able to focus on the presentation, but no one was coming anywhere near the table where I wanted to sit. I stood at the front table looking around, not sure what I was going to do, when one of my coworkers from another office said that she'd sit up front with me. She too wanted to be able to focus on the presentations. I was so grateful and relieved that I didn't need to sit at one of the other tables. Needless to say that I sort of felt like I was the unpopular kid again back in high school sitting at the front of the classroom while all the other cool kids sat in the back.

I was lucky that they used microphones throughout the day, because it allowed me to wear my earplugs without having to worry about missing anything. At one point at the beginning of the retreat, I noticed that

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Misophonia and our environment

10/22/2013

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Today my office held our monthly staff meeting at lunch. I think my coworkers have gotten to the point where they know me and my misophonia sensitivities well.

Normally I try to get to the meeting early so I can get an ideal seat right in front next to the projection screen so that I don't have to deal with visual triggers in my peripheral vision. Before the meeting, I heard our receptionist clanking her silverware on a glass plate, so I knew I had to be prepared. (Instead of sandwiches, the office got roasted sliced pork with steamed vegetables. Pretty yummy but I can't stand the noise of everyone's silverware clanking on their plates.) Since the meeting is also covered by WebEx for our other locations to participate, speakers use a microphone when presenting. It's great for me because I know I can wear my earplugs to block out the background noises but still hear the microphoned speakers.

Today I wound up getting to the meeting on time (which for me is late), and I was really worried that someone would've taken my spot. Luckily, whether because people know I always sit in the front corner or because people don't like sitting that close to the screen, I was able to get my favorite seat. I still had to hold up my notebook at times to block the view of some of the other people in the front who would bounce their feet during the meeting; but other than that, it was a typical staff meeting.

One of my coworkers presented an interesting tibit of information that really hit home for me. As I've mentioned in previous posts, I'm a lighting designer at an architecture/engineering firm. During these staff meetings, we share "lessons learned" issues that can help us on other projects. Today, one of my coworkers shared a situation where they designed a K-12 school that had classrooms for special-need students (like when a student has autism). Evidently, an issue came up where the hand driers in the adjacent restrooms were upsetting some of the special-ed students. They wound up having to remove them.

I spoke to my coworker after the meeting to say that her example piqued my interest. I explained that it might not have been just the sound of the hand drying machines, but perhaps also the vibrations caused by the machines, that the students could sense. I explained how sometime I can feel vibrations caused by people moving near me (since our office has hard floors with very little padding), and I can always feel when someone rests their feet or another object on the chair on which I'm sitting. She replied that what I said made sense, since the school building's construction had hollow cavity walls that would allow sound and vibrations to easily travel between the adjacent spaces.

It's really interesting how sometimes people take our environments for granted - not just the ones that we're physically in, but also those that are adjacent to our own. It's people who have heightened senses that really pick up on the environmental factors that other people just don't perceive.
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Triggers at the car dealer

10/19/2013

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When it comes to dealing with my misophonia, some days are harder than others. Today is no exception.

Weekends are typically the time when I catch up on errands and other things that I can't do during the workweek. A couple of weeks ago, I had a voicemail from a local Toyota dealer to let me know that the sales person with whom I dealt earlier in the year was no longer there and was I still interested in getting a car from them. I was actually very grateful when he said the guy was no longer there because that particular salesperson was very pushy, and had unprofessional sales methods that I didn't like at all. In fact, I avoided going anywhere near the sales area whenever I had to go to do anything in the service department.  In the end, his pushiness drove me to get my new car in a completely different state altogether.  So, when I got the voicemail saying that the salesperson was no longer there, I decided to stop by to meet with the new person as a side-trip to my other errands today.

When I walked into the dealer and approached the receptionist, I began to ask for the person who left the voicemail, but as soon as I began to speak, another salesperson walked in the door behind me whistling. Instinctively, I put my hand to my ear, because the sound was so piercingly loud and painful. When I turned back to the receptionist, who had a very perplexed look on her face, I explained that whistling hurts my ears. I then proceeded to again ask to speak to the salesperson who left the voicemail when the salesperson standing to her right started crunching on a hard candy. When that happened, I started sidling over to her left side, and even stood in such a way that when a third salesperson on my side of the counter started drumming his hands on the counter, I was able to partially block the view of his fidgiting hands with the potted plant on her desk. Unfortunately, the plant couldn't block the view of him also chomping on a wad of gum like a cow chewing on a piece of cud.  I just couldn't escape the triggers and even when I thought I had a little reprieve when the sales person stopped crunching on the hard candy, he put another one in his mouth and started crunching again.

Of course it was quite obvious that I was uncomfortable by the salespeople at the desk because where I ended at the far end of the long counter, was probably not the most ideal place for a customer to stand. In the end, I found out that the salesperson I came to meet was not only seeing a customer, but had another customer waiting for him; so I said I'd call him at another point. As long as I was there though, I decided to go to the service department to have something checked out with my car.

There weren't many people in the service department, so I was able to go in and be helped without any wait. The service people were friendly as always. (As much as I hated going in the sales area because of that one obnoxious salesperson, I've never had an issue with the service area.) As I was waiting for them to finish checking the fluids in my car (not why I went to see them, but I guess they figured since it's starting to get cold, it'd be good to check them out while I was there), I heard a high pitched wolf-call whistle. It happened a couple more times before I realized what it was... Someone had their cell phone alert signal set to that whistle. It reminded me of a time I was speaking to a representative in my apartment leasing office and the office manager had that same alert whistle. It's very life-like, but annoying as hell when the person gets email/text message alerts every couple of minutes. Oh well... The guys in the service department finished up shortly after that, so I was able to leave without any further trigger exposure there.

Of course, now that I'm sitting in a coffee shop trying to relax and write this post, I hear the loud "clank" over and over as someone eats his food with silverware on a ceramic plate. Over and over I hear the clanking... [Sigh] I think I'm just going to pick up my stuff and head over to one of the public libraries. They may be the only public places left where I can work in a quiet setting. (At least, they're somewhat quieter than any other public place where I've been of late...)
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Masking triggers during sleep

10/17/2013

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I admit it... I love when people ask me questions where I might not fully know the answer. It gives me an opportunity to do a little research on my own and learn something in the process. Yesterday was no exception!

One of SenseHaven.com's readers sent in a question asking if I knew of any noise isolation/reduction products that a person can wear when sleeping - like earmuffs. Now let me preface my discoveries with: I am very familiar with earmuff products that have speakers in them. I got my first pair back in the early '80s, not for any sound masking purpose, but just because it was a techie novelty item that caught my interest. They had purple fake fur on them and I used to wear them all the time while listening to my walkman at the bus stop. The problem with those were that the headband connecting piece was so flimsy, that it wound up breaking after several months of heavy use, the sound quality was "eh," but most importantly, they were corded, which is not something you want to wear when sleeping. When I started my search yesterday, I found a lot of bulky earmuff devices that were wireless, but they were akin to the type of headphones that airline workers wear (even the kinds that were covered by soft materials). I couldn't imagine trying to wear them while sleeping. But I did find two other solutions that seemed to be more plausible sleep aid products for misophonia sufferers: speaker pillows, and something called "SleepPhones."

As far as speaker pillows...I remembered that a couple of months ago I wrote something in a blog comment reply about finding a sound masking noise generator with an earphone jack that works with speaker pillows, something I never heard of before but realized that I hadn't looked into what kind of speaker pillows are out there; so, I took this as an opportunity to investigate a little further... I'm very excited about what I found!
PictureBrookstone's "SoftSound Pillow Speaker"
There are many different pillows with wireless speakers on the market, including at: Bed Bath andBeyond's "Softsound Memory Foam Pillow, "Brookstone's "SoftSound Pillow Speaker" (see inset photo), and even GeekAlerts "Sound Asleep Pillow." Of course, I haven't tried any of them (yet!), so I'm not sure about the quality of any of the products, but it is an interesting solution that claims to allow a person to listen to sounds/music generated from a bluetooth device without disturbing your partner. The one drawback that I see to this solution is that unless a person is sleeping on his/her back, only one ear, which still leaves one ear exposed to trigger sounds. Even on a person's back, I don't think they could completely

PictureSleepPhones Night Headphones
block triggers. They may lessen them quite a bit but if sufferers are like me, I'm super-sensitive to sounds and even any kind of light in the room when I sleep. That's what made my other discovery so exciting...

I came across a fleece headband product with speakers in it that completely covers both ears snugly called "SleepPhones." (I love how they call the devices "pajamas for your ears.") They also have a lightweight fabric version, for people who think the fleece might get too warm. It comes in wired and wireless, although it looks like their "systems" collection - that comes with CD's of various sleep aid sounds - is only with the corded product. They even have a stuffed lamb that can hold an MP3 player to help kiddies sleep.

I may go ahead and get the "SleepPhones" system to try out. (For me, I see it more for when I'm traveling than at home.) If anyone has used either of the above solutions, please post a comment to this blog with your opinion of the product. I'm sure other people would be very eager to know how effective they are.

On a side note, I did also come across a NY Times article called, "Noise-Canceling Devices for a Good Night's Sleep."  Although it was written in 2011, there is a lot of information about various apps, in-ear and stand-alone devices. I found one device a potential solution for daily use by misophonia sufferers. It combines an earplug with a white noise generator called "SnoreMasker Pro Deluxe." Although it is expensive compared to generic earplugs or earbud headphones ($399), it's certainly less expensive than some of the noise generating ear devices, one of which was quoted to me at $1,800 ($900 per ear).

Pleasant dreams everyone! May your days and nights be trigger-free!   :-)
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More whistlers in the workplace

10/15/2013

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It takes a lot for my misophonia triggers to push me over the edge to the point of rage. (Usually, my cockatiel has been the only instigator to push me to that point, and if I'm trying to do something where I don't want to take him out of the cage, like working on the computer, I just gather up my laptop and papers and walk out the door to get away from him.) Today I swear I wanted to explode...

I went to one of my project managers to give him an update on a project that's having some issues and while we're having the conversation, one of my other coworkers started whistling at the other end of the floor. Being that the space is all hard surfaces (brick walls, wood floors, glass windows, exposed metal ductwork),  the sound traveled quite well down to where we were standing. I tried very hard (really, REALLY hard) to focus on our conversation, but every whistle just "jabbed" at my ears. I kept turning to see who was whistling as well as put my hand up to one of my ears. I must've looked ridiculous and although I'm pretty sure my project manager knew of my misophonia, I still felt like I needed to explain why I was acting so strangely. He just continued on with our conversation as if I hadn't made a comment at all, so I guess my actions didn't bother him (or at least not that he admitted).


After we finished our discussion, I went over to the other end because I had a feeling I knew who had been whistling. Since she and I joke around a lot in general, I went up to her and (with a laugh)  said, "Was that you whistling?" She said that yes, she had a song that was stuck in her head. I don't remember what specific comment I made after that (it wasn't angry... probably more self-effacing), but it was clear from her reaction that she didn't know about my misophonia.

I described my sensitivities to certain sounds and visuals, and explained that it was the reason why I am located where I am in the office. She was very apologetic about the whole thing and luckily, I had to talk to her about another project anyway, so we were able to change the subject quickly and move onto something else.

As much as I was able to talk lightheartedly to the culprit after the fact, not to mention write about it here in a thoughtful way... When it was happening, I swear my head was all over the place trying to focus on the conversation I wanted to have and trying to deal with the whistling attack from afar. I think those far away triggers during times when I'm stuck in one place are the hardest to deal with  because I know what the problem is but they're too far away to address. I wanted to explode, even though I knew I couldn't.

I think I'm going to go home, make a warm cup of tea, and cuddle up by my "butane lighter" of a fireplace  while my cockatiel nestles into my cheek. (He actually is very cute when he fluffs up and relaxes that way.) Hopefully, that will help me unwind a bit.
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Dealing with Misophonia at Work and school

10/13/2013

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I've written many a post about my struggles - and successes - when trying to deal with misophonia triggers at work - not only in the office but also while traveling for conferences and going to business meetings with clients at the job site. Recently, Wendy Aron (a professional writer who posted many misophonia-related articles on the Psychology Today website) wrote an article where she interviewed Jan Johnston-Tyler, the founder of EvoLibri - a company that helps  "neurodiverse" people cope with their conditions in situations such as in workplace environments but also in general life environments as well.

Although I don't know anything about EvoLibri, their website looked interesting and Aron's article  provided many suggestions for how to address misophonia concerns at work. I recommend reading it if you struggle with misophonia in the workplace. The article can be found at:

http://www.psychologytoday.com/blog/sounds-awful/201309/making-your-job-work

Aron also wrote an interesting article that focuses on misophonia in school environments, where she offers suggestions for support options in public schools. That article can be found here:

http://www.psychologytoday.com/blog/sounds-awful/201309/going-school-misophonia
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    About the Author

    Emlyn Altman has been suffering with misophonia for over 40 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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