This is the #45 edition of our My Misophonia Story series. This week features Sandra (44) from Ireland. Each week we’ll feature a new reader story, so if you’d like to share yours, please drop us a line. Sandra, take it away…
Where are you from?
West of Ireland
What do you do for a living?
What are you passionate about / what are your hobbies?
I really love up-styling old clothes and dress making. It often feels like my brain is in a spa when I get lost in the creativity of designing and redesigning things. I wear the finished pieces unaware that I look very odd until I revisit the item of clothing and cringe. I still get lost in the process despite the result… and still wear them despite previous experience… I leave the house feeling like a model and arrive to work looking well, let’s just say my mirrors at home deceive me.
How old were you when you first realised you had an issue with certain sounds?
I am unsure if it is a memory or a memory of a memory… I was very young, sharing a room and I had no idea ear plugs existed… so i slept with my fingers in my ears, sisters snored, breathed heavy and noise from downstairs tv. I evolved to using cotton wool and fingers in ears. When I think back on it. It is torture for a child with misophonia.
When did you first find out it was called misophonia?
3 years ago. I had noticed my list of triggers is getting longer and I thought I was going insane… I really did. So I looked up intolerance for specific sounds and it was a very moving moment for me.
I began to learn that ‘IT’ had a name and that there are many people out there just like me. I became more verbal about it, having a name for this state of being enabled me to reference with other people why I had to suddenly leave a certain place or sit in a specific place.
Many of my friends understand and the best part for me is being able to print out an article and give it to those in my life who felt and almost convinced me I was losing the plot.
What are your 3 biggest triggers?
Do you have any other sensory quirks?
I grew up in a large household, I remember building a fort behind couch so I could block out seeing people allowing me to watch tv without being distracted.
My sister had a habit of biting her index finger and the visual of this drove me crazy… my brother had long hair and he used to curl it around his finger… drove me crazy.
My partner lays on couch with his legs hanging down the end… he swings them and it drives me crazy. I’m so hard to live with, I feel awful about the eggshell carpet I expect people to walk on when I am near.
My partner is so good and I am constantly saying ‘Please stop moving your leg, please blow your nose, please stop slurping your drink… please stop being you so that I can survive being with you!!!!!
Have you told other people about your misophonia and if so what was their reaction?
Yes, I have told close friends… many are supportive. Some feel that I should get cured like buy it in a chemist or from a snake charmer and move on or it will destroy my life.
I have had to tell my boss… this was difficult but as my classroom was right beside a door that wasn’t closing properly it banged constantly. I felt my nerves were being snipped with every bang so I had to take a moment and tell her. My boss was very supportive but I know she thinks I’m odd. I’m slightly weary of complaining about the stupid caretaker who is whistling constantly. Mother of God. I can hold back for the moment.
What’s your funniest/most ridiculous misophonia-related moment?
At a family function, long table with people either side, in front and behind all eating and chatting and just a war zone related feeling. My niece pointed to my high vis earplugs and asked why I was wearing them… entire table stopped to hear why. Ear infection just wasn’t going to work.
What helps you to cope with your misophonia?
Prevention… seating arrangements
What are your misophonic superpowers?
I definitely have a heightened sense of sound memory in so far as I recognise where some artists get their influences from. I can hear certain things in music that identify a time or an album the song didn’t quite make it on to. I would like to add that I have no musical skills, I don’t play or sing.
What’s the single most useful piece of misophonia related advice you’ve learnt?
I haven’t heard anything of yet that intolerance and time hasn’t allowed me to figure out for myself… hope that doesn’t sound arrogant as it is not my intention to.
What’s your very best life hack?
So what? Now what?
Really triggers you into finding solutions to a problem… love it.
Is there anything else you’d like to share with your fellow misophones?
I’m more open to finding out things… like does it ever go away or get better?
What about people in prison with misophonia?… what a deterrent eh!
I’m feeling stressed and anxious about moving and I worry about and dream about moving into a noisy environment. Does this worry others to the point of obsession?
Also I wonder are those with misophonia introverts or extroverts or a mixture?
I have to get my ears syringed a few times due to using ear plugs…. its the best and the worst of feelings. I love the sensation of the water, feel like a cat getting her head rubbed, I almost purr. Then the aftermath… oh my god did you hear that ant chew a leaf?
And finally! The quick fire round…
Favourite place you’ve visited:
Always Changing. Today it’s ‘To Ramona’ by Bob Dylan
Last Exit to Brooklyn: wow what a take on humanity!
Favourite work of art:
Not sure… nothing jumping out but ‘Face of Paul’ Cezanne, just remember it’s beauty when I studied Art History way way WAY back.
5 things you couldn’t live without:
1. My fantastic protector and friend Liam who can read a situation and prevent a misaphonactic outburst. Still needs to stop swinging those legs though!
2. Sewing machine
3. My car