Misophonia & Its Challenges
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THE ULTIMATE

Misophonia guide

DAY IN THE OFFICE or HOW I PULLED MYSELF OUT OF FIGHT OR FLIGHT ATTACK TODAY AND WENT BACK TO WORK

6/25/2019

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​The rustle of plastic and paper bags...
 
Goodness, it is insane how difficult and painful the noise of the bags is. 
 
And of course, I’m most triggered today. On the day when I feel exhausted, stressed and overwhelmed. So close to meltdown right now at 8:47 am 
 
In the office full of co-workers who are embracing this Tuesday morning and each other by slamming the high fives so so so loud. 
 
Here is one more! Boom!!! Two times in a row because the first one was not loud enough! Right next to me. So close it can’t be ignored even if I look at them doing it.
 
Today I am wishing like never before about time when I would work in a quiet place. Or I‘ll get better with these particular triggers. 
 
The feeling that people don’t care about each other is so real right now. It is unbelievable how the mind is ruling the thoughts during the fight or flight attacks. 
 
And there is one more.... the pen clicker... no matter how many times I have asked him not to... I have reached zero results ... he still clicks his pen during the entire day, while collecting those that don’t click and proudly storing them at his desk.  
 
And I know he does it when he is nerves, and it is publicly acceptable. Yet, experiencing a Misophonia attack during pen clicking is not publicly acceptable.... and we gotta control our emotions and responses. Ohhh ... “though train just took off and there is no way to stop it now  ” 
 
And there is one more... the spoon hitter with glass containers ... She does it so obnoxiously on the glass container (at least twice every day: breakfast and lunch). She stands to save the environment and does not use plastic spoons! Great cause though :) 
 
And of course all 4 of those triggers had to happen all at once within 5 min. 
 
4 triggers at the same time - panic attack followed by another attack before the first one is over... and the cycle repeats 4 times. 
 
I had to get out. I could not tolerate it today. I could not stop my tears. I have been wiping them off on my way out and rushed outside before I had a complete meltdown right in my office in front of all my co-workers...
 
Walked outside. I had a few deep breaths. Whipped off my tears. More deep breaths. Calmed me down. Picking myself up and getting myself out of my panic attack has become a very well developed skill. 
 
10 minutes break and I am walking back to my office. I will complete my workday in the office today no matter what. And I for sure will double my efforts on job search today
 
Have a great Tuesday everyone! Not all Tuesday’s are like that and there is always a chance that day will get better. Gotta have faith and take walks outside if needed. 
 
#appreciatingquietmomentstodayforsure 
 
P.S. I am crystal clear that no one does it on purpose, and all of them have no clue what noises trigger me, even though most of them know I have Misophonia. Knowing it is not enough to understand.  
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CAN’T TAKE IT ANYMORE

6/18/2019

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There times in everyone’s life when we feel like we can’t take it anymore, when we feel like giving up. Life is not always a sunshine and rainbows. Often life is very stormy. Overwhelming. Knocks you down. Defeats you. At least it feels like this.
You feel so drained, tiered and empty. You feel no energy. You may feel like everything you do is pointless and helpless. Maybe you feel like you are stock and see no way out.
I am no different and had plenty of these moments too.  

Habitually I would stop and do nothing for a while. Then I would start blaming myself for wasted time and inability to stay focus. This would follow by blaming myself for failing, for breaking my own word to myself, for being inconsistent.

It has been a long journey before I realized that this is habitual pattern, developed over time, and subconsciously selected by me every single time it is time for me to expend.
 These are the moments when I need to push myself through, when I need to keep going no matter what. These are the moments of breakthrough.
The hardest part is to be finally aware of it, to realize it, to understand it, but keep watching myself choosing the old negative, helpless and victim pattern over and over again. 
I just could not pull it off and find strength to keep going. I would habitually stop, get distracted with other things or withdraw from all together.
At times I was so hard on myself I would blame myself for not overcoming it now and creating more of it in the future. I know that this situation would keep coming back over and over again, because I keep asking for breakthrough, growth and changes. I knew what I was doing, but felt helpless.  

I am working on breaking this pattern now. A month ago I would stay silent. I would not say anything to anyone. I would not reach out for help, I would not complain, I would not acknowledge even to myself that I need help, that I am trapped in my old patterns, can’t get out and it is getting worse.
 
This is not how I want to continue. I want to change, I want to break this pattern, I want to grow, and I want to keep going even when I don’t feel like taking next step. This is what I have read in all the books I have read, heard in all the podcasts and videos, seminars and workshops. It is not something new to me. I have heard it from every successful person I have ever came across.
 
I just could not figure out why knowing is not enough for me and why I am not able to stay focused on my goals.
One of my friends mentioned that getting an accountability partner, who would keep me accountable, could be the deal breaker and would help me break my old pattern and develop a new one. I agreed. I know it works because I was able to reach my fitness goals earlier this year and having a coach and supporting team helped a lot and made the difference.  
I have asked her to be my accountability partner.  I got an amazing one. Not the one how would feel for me and would comfort me with “It’s OK, I know it’s hard, I understand”. Or would only have yes or no way, focused on results no exceptions. I got the one who feels it when and what is appropriate to say. And even though 1 out of 100 times she would comfort me, other 99 times she would get me going without feeling like doing it. And this is the key ingredient for growth.
 This last Sunday I was telling her how so much was going on and I was not in a place of getting things done. I just wanted to take time off and go to bed. She said “I know you don’t feel like doing it. Just get it done!”

That’s all. That’s all she said and that was enough for me. Something happened and I have developed strength out of nowhere to keep going. Strength that I did not have just a min ago.
Our minds are so powerful. We are powerful. And same way we can develop the control of our emotions. The only way to get better and take control over your emotions is to do it even when you don’t feel like doing it anymore. Even when you think you can’t. Even when you feel like you are failing. 

You have to learn to control how you express your emotions every single day. This is the only way to get better and improve your life with Misophonia. But it is so much harder to do it alone. Find an accountability partner. It can be friend or a family member. Someone who wants to help you. 
 
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You do not need an accommodation

6/11/2019

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🔥🔥🔥1 month without headphones 🔥🔥🔥
​

At work 🏫
At home 🏡
At my favorite coffee shop ☕️
Anywhere !!!

I m freaking amazed with the results! I m very happy and proud of myself, and the work I have done! I did not get rid of my Misophonia triggers, but I m capable of living life without headphones where I absolutely had to have them on.

I am extremely thankful for Dr. Allen Rohe

We have talked for hours and I was so pleased to be able to share my thoughts, my pains, my triggers, my concerns and fears, as well as all of my accomplishments of living a life with Misophonia with Dr. Allen Rohe.

I came into his office after my supervisor told me “there is nothing I can do unless you can bring me a doctor note. Until then, you have to attend our weekly meetings. And I can’t tell people they are not allowed to eat during our meetings. I am sorry. Until then nothing I can do.”

The reality was I did not even asked her to do anything. From the day one when I discovered misophonia I took full responsibility for my reactions. I set high expectations for myself to get better no matter what. But during the meeting that day I found myself in a position of walking out of the room full of people eating and crunching and talking at the same time. I could not take it anymore and walked out.

This caused me to have a meeting after meeting when I made several attempts to explain misophonia to a person who clearly did not want to understand it. Or maybe she could not understand it, which can be a possibility too.

I have worked there for few years now and never asked for anything to smooth my misophonia triggers. But that day I was asked to bring a doctor note or stay in a room until the end of the meeting.

I cried on my way home. I did not want to ask for doctor accommodations. I was afraid it will break my belief and spirit, and I will stop working on healing and improving myself. I have read so many stories of successful people who’s parents refuse to put them in a special school/class and encouraged them, and supported them through tough times at a regular school. It helped them to build up the belief that they do no need accommodations. That they are capable of handling tasks just like everybody else.

I did not want to ask for accommodations. I wanted to get better. I knew the reactions and responses can be improved, if I just practice it long enough. The only problem I did not know how much longer it will take. What if it takes a very long time? What am I suppose to do until then?
What if next week I will have same experience at work? God knows it is painful to tolerate.

It was a very difficult moment when for a while I have lost my faith in myself. I was afraid I was not capable of overcoming this Misophonia challenge. I was desperately needing the support. Needing someone who can support. Who can give me that encouragement to keep going in the direction I was going.

Dr. Allen Rohe gave me all I needed that day. All I needed and even more. He said “ This is not a disability. You do not need an accommodation. You know it! Don’t let them do that to you! You got this. You are on right path and you will see you will overcome it!”

That’s all I needed to hear. We all need reassurance from time to time. This was my time. And it worked! Dr. Allen Rohe was absolutely right - I do not need accommodations. I got this 💪

Now I know it is possible
Now I know I m capable
Now I know I m in control on my thoughts
My habits. My reactions. My responses. My attitude.

I m capable to overcome it ! Period . So does everybody else! We got this 💪
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FAMILY DINNER TIME

6/4/2019

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When you imagine a family dinner, you probably picture a beautifully served table with fine china and proper silverware. Or maybe you picture paper plates and pizza boxes. Or maybe you picture something in between, or both depends on the day of the week.
 
Maybe in your home everyone eats together in the living room in front of the TV.
 
Maybe in your home TV is not allowed during dinner time and family conversations are taking place. 
 
 Whatever your preference/ tradition is if you or a family member has Misophonia this could be the worst time of the day for them. 
 
Misophonia is a disorder where people have abnormally strong and negative reactions to the ordinary sounds humans make at the dinner table, such as chewing or talking with food still in their mouth. The amount of pain one experiencing is often unbearable.
 
Now imaging for a moment a child who has Misophonia, whose parents do not know/understand/or ignore the fact of what this child is experiencing, is told he or she has to sit through the dinner time while experiencing pain, “fight or flight” response, anxiety, rage and panic attack and get their act together and sit still, and behave and be police, grateful and appreciative for the food, parents, siblings and everything those loving parents do for them.
 
Even as adults we often can’t explain what we feel and why, children or teens are struggling with it as well. Only few reaching out for help. Most continue to suffer in silence.
 
Please make a decision to value safe environment at home more then you value your house rules. Be open and open minded. Even though it is not easy. Let your heart lead and not your ego or fears. Be honest with yourself and ask yourself “Why is it so important for you to have everyone eat together?” List the reasons. Review them. You will be surprised (and most of the time this is not a pleasant surprise). But if you are brave to face the trough you will the opportunities to make peaceful decisions and create loving, respectful and safe place in your home for yourself and all family members.
 
If dinner time associates with the quality time for you maybe it is time to review how much quality time your family actually have and how come dinners end up being the only time when family is together? Do you have to have quality time with everyone at the same time or maybe you can create quality time with each family member individually? Do you feel immediate resistance or do you start wonder about new possibilities?  Is it time to create new experiences for your family?
 
Mindset and your perspective play the most vital role in it and what’s great about it – it can be change! The question is how bad do you want it? Are you willing to make those changes?
 
P.S. It is also applies to your adult friends J If you have Misophonia – lunches and dinners with friends are not the only ways to have quality and fun time. Create the enjoyable experiences. It is in your power! 
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