Living with my tinnitus & hyperacusis

Living with my tinnitus & hyperacusis

Welcome to my hearing … well it’s better to say my head. Yes I have tinnitus! And even more annoying hyperacusis. No I did not get it from festivals and party’s but thanks to a bike accident when I was 11 years old.

So the bike incident I got was just like a stupid accident with my race bike. Well I wasn’t racing but it was during a slow drive to the start of a triathlon competition (yes I did triathlon). My bag got in the wheel and smacked me on the face, lucky was wearing a helmet that one broke, just like my front teeth.

When I was almost 21 in 2008 I could finally get two teeth implants. But with that came an bone transplantation from the back of my jaw. This is not a big surgery but a nasty one because the unlock your jaw. Which now in 2024 I still have problems of and in 2008 jaw therapy wasn’t very know. But as reward my dad took me for a 26hours trip to Berlin to do my report of Veljanov’s Porta Macedonia cd presentation. Which I was invited to do a report for Noize Magazine, I still don’t know how I managed to makes the pictures with all the pain killers a few days after the surgery.

In 2022 I stopped my yarn store that I had for 5 years. With corona period survived as a company. And during corona period when we where all living online I started to get in touch and long back to the period of Noize Magazine. But a new job got a my path so I could stop the store and get free time. What me time with no pressure? Something that was not in my Dictionary. And an old friend who challenged me with music.
 The whole positive change gave a stress reaction on my hearing. In 2023 I did what I never dare but always wanted to do and joined the local opera. I takes the average ages of the choirs down with 30 years but I didn’t care I wanted to learn to sing opera. I always loved symphonic metal and want to learn to read sheet music. Somehow I past the test and was allowed to stay even with the comment that I have a delay to pick up tunes. After trying a few thing to reduces stress I finally get the hearing test I needed. The result: Tinnitus and hyperacusis with a to big hearing range for my age.

The sound I hear the whole day. Allright on a good moment it’s gone for a moment.

 Tinnitus

It’s annoying and exhausting form time to time. Looking back I know I have it thanks to the bike incident. It’s not always there and most of the sounds block it. I mostly hear it before I go to sleep or when I’m extreme stressed or tired. It’s mostly a background noise and on a bad day something similar like the noise of the video. The annoying thing when you get the label tinnitus it’s know to give a big reaction and you will focus on it. So for almost a year I slowly find my way to manage and understand it.  It’s just my personal jam.

Hyperacusis

This is the nasty one. Sounds are to loud for me and it causes a “processing” delay. With my big hearing range I still hear things like to beepers to scare cat’s of the yard.  

Directed sounds work fine to me. That’s why I’m able to go to a concert (yes with in ears but you need them anyway) and sing in the opera. But undirected sounds like a bar are exhausting for me because I lose focus.  So I love to go to small concerts but I do not stay long for the after party. At home I try to avoid the morning chaos and hope that my husband and the kids set up the table (but still this goes with a lot of chaos) because it can set the hearing stress level for me for the rest of the day.

Also the jaw can have a major effect on how loud you hear sounds. If it’s locked you can hear sounds louder. I went to  therapy for it and to keep it in shape and make it stronger I need sing.

At my work I work with people with people with special needs so most of the workspace is adjusted to them. And all right expect the hallway on the new location but it’s my secret personal signing boot for cool acoustics. But still it’s a job that require a lot of focus and concentration so I have to watch out in the evening and take enough rest. Because more tired I’m the louder the sounds feel. And it could almost look like I’m misophonic.

The delay

The delay is the most frustrating for me. I lose focus so with a meeting it takes more time to process. It can look like I forget a lot of things and walk back with a this or that questions. Or I have to check the assignment ten times or cut it in small staps so I won’t forget a things.

With music the delay is really a annoying thing but I learned once I know the piece it will be fine and slowly I learn to understand sheet music so I recognise more an more what to do and when. But one of the most important things is to trust on our director Hans Lamers.

Little helpers

So at the moment I use some little helpers. And I’m not sponsored but I will call the names of the brands I use  but you just have to find what helps for you. I love my Loop earplugs and have two sets (now you can also choose for a switch version). I have one set for concerts to block the noise. The other set is for a restaurant of meeting or block some of the sounds so I can focus more. Yes they help me but the downside for me I can not use it to calm down because then I will focus on my tinnitus jam.

So when I’m on the streets or need to relax my ears at home I use mu Sennheiser IEpro100 in ears monitors. Yes there originally designed for stage monitoring and I love them. I always loved the Sennheiser sounds and uses It from I was like 14 years old if it are headphones of a mic yes I’m a Sennheiser just like I’m an Apple girl (but no earpods for me).  The nice thing of in ear monitors there are designed to lock in you ears and block the “speaking” range of sounds. So it helps me to get in my own bubble and block most sounds. So for me this is the best help.

Mabe I will get more or a different helper because I’m waiting list for a special treatment to learn to deal with my tinnitus and hyperacusis.

Do I still bike? I’m Dutch so I bike everywhere, I don’t even have a driver’s license.

And with the singing? It became my therapy I train my jaw with it and I calm my brain (except when the soprano’s are on the loose). And I just decided to do what makes me happy. So we will see where my path will take me.

Do what makes you happy

-X-
Helene

My workshop closed

My workshop closed

How my workshop is going from almost ready to work in again to a nightmare. So I just finished my workshop a few months ago. Started to sort out my old photography and re-edit them. Well that just got on a hold. Also my just stet up recording set is there. Why?

We have a major leak in the roof!! And it’s raining for half a year now in the Netherlands. So a few months ago we discovered damage on the ceiling. So they did a roof inspection and there is a leak, and we are waiting till it will be fixed. Last week when we tried to pick up some project an reorganise my company we found out it got on the point that it’s unhealthy to work.

We brought my old handmade art downstairs so my winter sorting out project become my summer project. And when I can photoshop again I have to see, I guess I have to do a edit marathon in the summer holiday in my living room.  

And now?
Well it’s a good time for me to focus on some writing. And test my new IPhone by making little video’s where I sing some covers. I guess I really never sit still!!

With L♡ve

Deine Lakaien crochet pattern (fanart)

This is a fanart doll set of the band Deine Lakaien. In 2022 I made the first set and gave it to Ernst and Alexander. After more requests I wrote down the pattern. This pattern is free to download.

If you want to translate it please send me a copy so it can be shared.

Klick on image for pattern or go to Ravelry


So my love for Deine Lakaien started in 2007 when I was in Berlin. We saw there would be a concert so last minute we got tickets and it seemed to be 20 Years of electronic Avandgarde! Yes with orchestra so that’s where I felt in love with the music and the warm voice of Alexander. Later in 2007 they came to the Netherlands and I got my first photo pass and mange to sneak backstage and meet an greet. I have had several Interviews with Alexander (because of his solo work) and visit several concerts (pictures can by found at my photography page and publications at Noize Magazine page). Between 2014 and 2020 I didn’t follow them anymore.  In 2021 I went to the acoustic concert and got sold like the old days. During corona I had my yarn store and work as a crochet designer. So 1+1=2 so why not made a small doll set for fun. In 2022 I had the first sample and give it to them at the concert in Köln. When I shared the set on social media I got request to share the pattern. But in 2022 I got a new you and had to give up my yarn store so I needed some time off crochet. But still now you can make you own set and hug them.

For me making some fanart it’s just a fun way to say thank you and to get in my own design rhythm again. I still have one crochet Deine Lakaien fanart in the making a large corner to corner blanket (which I blame my husband for that I’m making it).

Have fun in making this set and share pictures on socials.

Just do what makes you happy
Helene

Follow me Facebook or Insta @Radiant Teddy for international
Follow Deine Lakaien fans Facebook group of Deine Lakaien. And there Facebook page Facebook Deine Lakaien

Pattern links:

Url English:
http://helenesmits.com/wp-content/uploads/2024/05/Deine-Lakaien-crochet-doll-set-2024.pdf
Url German
http://helenesmits.com/wp-content/uploads/2024/05/Deine-Lakaien-hakeln-set-2024.pdf
On Ravelry
Ravelry: Deine Lakaien set pattern by Helene Smits

Shadowbox

To finish this set I made a shadowbox.  Most 3d frames are only 5cm deep so I bought a 28x28cm frame (and found some fun lights at Action). Went to the hardware store to get 127mm wide wood and made it on the size. I used the back of the frame as back of the box and made a door out of the front. I used nails on the spots to keep the dolls in place (yes you can take them out). The backdrop is a nice paper and made the logo with my Cricut just like the silhouette on the side. Pity I didn’t have mini grand piano to make it really look like there on stage.

Now lets find a nice spot to hang or display it.

Nostalgia

Nostalgia

It was all better in the past!?

Longing to our past is a natural things in 2012 when society was changing. We longed to a time in the past with a period of technical change with social media and streaming like Netflix. And upcoming trend was Steampunk people were looking back at the industrialisation. Now in the 20ties we had our time with corona that shaken society and now I see a reaction to longing to the 80ties. The (dark) wave it the “new goth” and cover bands have more gigs then there existing originals.

For me? During corona I started to long to talking about my old work while my yarn shop had to close for safety. Hanging around on socials finding old contacts and inspirations. Some I left behind years ago. After corona I had to stop de shop and found a new creative job. That give me even more time and rest to drown in the river of nostalgia.

And there we have the fear of nostalgia. The desire to swim against the stream of life is an illusion to swim to safety. In the end it will only exhaust us and we will drown. But still sometimes we need a small swim against the stream to see what direction we need to go.

What I do to prevent drowning? Well now I still sorting all my old archives and finished projects that I should have finished a long time ago. For me I helps to close the tabs in my head but I won’t forget where I come from.

The quotes are:

It was all better in the past!

Wij do we have a desire to another time?

Nostalgia is the denial of the painfull present (- quote from Midnight in Paris)

Nostalgia is a new folk disease.

We desire to the Gulden (- a quote that Wilders uses it a lot to win souls)

The first blog, the worst to write

Last year a lot has changed for me. New job, say goodbye to my own yarn shop. But then what to do? During corona I got in  touch with some old contacts. So I 2023 ended up in longing to a balance of my old photography work. But after 10 years you are not the same anymore and time hasn’t stand still. And still I don’t know where to start. Well I made a start of sorting out my old portfolio, but still then what???

Here is a short introduction about me. I have studied multimedia Design and Documentary Photography art the Art Academy. I’m Dutch and I always get confused when people talk German. My English is fine, not perfect. During my study I found a love for music but to shy to sing so I did concert photography. That ended up in working 5 years on Noize Magazine, and still for me the best experience of my life. In 2005 I started my own yarn and haberdashery shop from 2007 till 2023 I have had a local store. But with corona and everything in the world I couldn’t find my happiness. In 2023 I have joined the local opera choir, and on the Bühne I felt the magic again that I fled during my time with Noize Magazine.

In 2023 I also found out I’m hyperacoustic which was a painful eyeopener. As I also work as a crochet pattern designer I need to go to events to promote my work and I love festivals. But my hearing thinks quickly it’s to much. But I found out that I can enjoy singing and listing to music. But a 50 ore more talking in a room  is a problem for my hearing, just like soprano’s. High tunes and uncontrolled sound are a fight in my head.

So I slowly find my way again.

I just told myself only do what makes me happy.

What do I do now?
– My daily job doing creative Activities with disabled
– Design crochet patterns (mostly in Dutch)
– Sing in the local opera choir.
– Enjoy my children

Can I add blog to the list? Because I just made my first blog.
Well we will see where it will go. I’m open for projects as long as it think it’s fun.


Do what makes you happy,

Helene