Say what?!

As I'm sat where with Paul watching the F1 it suddenly dawned on me how little (pretty much none!) of the commentary I can actually hear. It got me thinking that the Grand Prix is a really good metaphor of the life of someone who is hard of hearing. The cars being the background noise and the commentary the everyday conversation. Iv been watching for about 15 minutes and can honestly say that I haven't heard a full sentence clearly so far! As anyone who is hard of hearing or suffers with single sided deafness will know, we cant differentiate between what is supposed to be background noise and the sound of someone who could be talking right at you!

Im also aware that my brain likes to fill in the blanks and create sentences for me without me even knowing it. This is true of so many peoples day to day lives, at work, home, gym, social lives, the list is endless. I cant even count the amount of times in an average week that I don't hear the end of someones sentence because they walk in to another room while talking, lower their voice or turn their head away while talking to me. It makes for some really odd (and also funny!) sentences where I have a little chuckle to myself and carry on with the task in hand.

Turns out that "filling in the blanks" is an actual thing.....its called oronyms, which are sequences of words and sounds that sound similar to each other. There is a region of our brains called the angular gyrus that cleverly uses all of a persons previous life knowledge to fill in gaps where necessary with predictable replacements. Some days I feel like I'm in a real life game of hangman trying to fill in the gaps and blanks to make someones sentence make sense!

Until next time...

A new season...

A new season marks the start of a new chapter in the year, new wardrobe additions and a few choice "autumn" Instagram pics right...? Wrong... a change in the weather can mean days of dizziness for vertigo sufferers and certainly explains why iv woken up twice in the past fortnight feeling like I need sea sickness tablets!

Dizziness is the third most common medical symptom reported and vertigo is to blame for at least 40% of those sufferers. Some people say they can predict the weather before a storm through how they feel, and problems with balance on a normal day are only worsened by a sudden change in barometric pressure.

Iv mentioned previously that a glass of wine on a "dizzy day" completely turns my day around and settles any feelings of drunkiness (oh the irony!) I'm not sure that a hip flask in my desk drawer at work is entirely appropriate so a latte will have to do!

Doctors advise to avoid bed rest and to get back to normal routine as soon as possible to kick start the brain in to compensating for the vertigo allowing it not to develop in to an "all day long" episode. Its sometimes easier said than done when I can barely walk in a straight line through the office!

19 months on from loosing my hearing my bad days are getting further and further apart. I'm not sure if its luck or whether its just a change in mind set. Either way, what doesn't kill you makes you stronger and however cliché it sounds, there is always something to smile about, even on a bad day.
Someone I barely know told me this week how much they liked my blog and that they had read every one, while my new work colleagues changed my phone around so it was on my good side.

Its the small things that really do make my day...

Out with the old..

A new month, a new job and a new start... I couldn't be happier.

If the last 18 months have taught me anything, it's to never take anything for granted and to appreciate the small things.

When I heard those 5 little words 18 months ago, "your hearing will never return" I had no idea how much my life would change, from small day to day things to huge, career changing possibilities.

I was determined at first to not let this effect my job, of which I loved. Being a dance teacher was in my blood, it was all I ever knew and I wasn't ready to take a leap of faith.... until now. When my doctor wanted to sign me off with exhaustion and stress I knew something had to change. After researching other peoples career changes due to SSD I was shocked to read that people took early retirement, became housewives and job hopped from place to place with very little support from employers. I read stories of bullying and being left out of office communications because of their disability. Some even deemed "unemployable" as a hard of hearing person comes with more baggage than a "normal" employee. Its disgusting that invisible illnesses such as these are seen as a negative when in actual fact, that individual could do a better job than most if given the chance. Other stories saw SSD used against people in interviews with employers making any excuse to not give the job away.

With this in mind I was careful with what I wrote on applications and emails when asked about myself. One particular telephone interview sticks in my mind. I was, in her words, perfect for the role. After a brief talk about the job, the conversation turned to me. When asked "is there anything about yourself you'd like to add?" I replied explaining that I was deaf on my left side, she replied "oh....ok" and quickly ended the call saying she would be in touch. Funnily enough I never heard anything! It must have been fate as the week after I struck gold! A great interview, 2 extremely understanding and lovely bosses and a job offer within 48 hours!

10 days in and loving every minute, so far iv only answered the phone to my bad ear twice! I giggled to myself and shrugged it off, luckily no one saw! You can do anything you put your mind to and right now, I feel like a whole new person. As a good friend told me this week... "never let anyone dull your sparkle"

until next time...

until next time

Step back and listen...

My tap shoes have been attached to me for as long as I can remember, from that first lesson at the age of 5 to passing my teaching exams and entering my first set of exam students aged 23. I'm now 31 and believed that I would still be choreographing in the studio for another 20 years, that is, until about a month ago when I decided on a change. To be perfectly honest I had thought about it a while ago but refused to give in to the niggle.

Only hearing one side is difficult enough day to day but add in some 3 year olds in tap shoes, loud music, fatigue, a 40+ hour week and a confined space and you end up with sensory overload! I had read that having SSD can result in tiredness but shrugged it off with the excuse of having such a busy job. Over the last 6 months I've felt things slowly creeping up on top of me and was finding it harder and harder to get out of bed. I was exhausted every day and sleeping every spare minute, including lunch breaks and all through my only day off a week and so decided to seek some advice from the doctor. When he wanted to sign me off there and then I cried.....I felt weak... isolated and that this thing had finally beaten me. I'm not the sort of person who gives in easily, everyone gets tired right? But this was different, the stress, the anxiety of familiar day to day chores was too much. There comes a point when warning signs start to show and a lifestyle change is needed.

I started to research the links between SSD and fatigue and my findings were shocking, how did I not know that this was an actual thing? And more importantly I definitely wasn't alone. Maybe if I hadn't have been so stubborn...

Hearing-loss exhaustion occurs because of the extra mental work that hard-of-hearing people must exercise to get through their day. From keeping up with conversations at work to processing the sounds on the street, the body expends much of its energy to struggle to hear. If you are hard of hearing, chances are you have likely experienced exhaustion because of the physical and emotional side effects of the sound deficit.

I have 17 days left before starting my new job at a letting agents. A quiet office and regular hours along with evenings and weekends off to spend more time with loved ones. I've been extremely lucky to work my dream job for 10+ years and I'm truly grateful to each and every student/teacher/parent/friend who has made that happen. Will I still tap dance my way around the supermarket? probably... Will I still want to choreograph to every song I hear on the radio? of course!

Until next time...

A Balancing Act

They say life is like riding a bicycle, to keep your balance you must keep moving..... or not!

If anyone has ever experienced vertigo you will know what I mean. Your balance system is made up of 3 things, what your eyes see, what your joints feel and what is picked up by the balance part of your inner ear. Your inner ear can detect the direction you are travelling and what speed your head is moving at, as well as being able to determine if you are moving in a straight line.

Vertigo and balance problems can be common in deaf people, affecting up to 30%, especially if the deafness is sudden. The feeling of dizziness is unnerving and can catch you off guard at the strangest times. To look up at a tall building, to roll over in bed, and to move your head in certain directions can be just a few every day things that can throw you off balance. The sicky, room spinny, anxious and unsteady feeling was all to familiar in the year after I went deaf on the left side. To begin with I was offered tablets as a quick fix, after researching possible side effects I noticed that 'dizziness' and 'nausea' were common.......ummm hello?!

 I decided to do some of my own research and have a read of what might help. As a dance teacher the odds were good that this wasn't going to last forever and I was advised to 'carry on as normal' whenever I could. I was told that my body would quickly adjust the best it could and that years of tapping and turning could be a big advantage. Research shows that dancers use more muscle groups, even just walking across a flat floor, than people who had no dance training. This showed that dance training can strengthen the nervous systems' ability to coordinate muscle groups, therefore helping to keep balance. My pirouettes looked like a 5 year olds but all the more reason to keep trying right?
I tried yoga, meditation (yes I actually stayed quiet for more than 10 minutes!), fizzy drinks (I have no idea why this worked for me but it did) and standing on 1 leg. As silly as it sounds it actually all helped. Apparently if you are below the age of 60 you should be able to stand on 1 leg, close your eyes, rise up on to your tip toe and hold for 21 seconds..... I managed 2! Over 60's should be able to manage 10 seconds....don't pretend that your not trying it out right now! 

I'm lucky enough to work at a gymnastics academy meaning I have endless use of equipment, my goal was to be able to walk across the beam without falling off by the end of last year, after a lot of failed attempts I did it! Practice makes perfect. My balance will never be great but I have to stay positive and keep moving forward. This time last year I could barely walk in a straight line, this year I'm back to taking dance classes, and spinning around like fairy with my baby ballerinas. Until next time...

To keep up with all blog posts past and present please like my facebook page: https://m.facebook.com/heartodaygonetomorrow/

A shoulder to....hear on

With so much sadness in the news this week I thought it would be a good time to spread some happy thoughts and so I am dedicating this particular post to my boyfriend and best friend, Paul.

When I was told the devastating news that my hearing in my left ear would not return I felt lost, isolated and trapped in a world where everything was either too loud or not loud enough. I was embarrassed to ask people to speak slower or repeat things that I just couldn't quite make out and felt like I couldn't open up about SSD in public in fear of looking silly. I was all of a sudden conscious of people being on my good side and found that taking myself out of social situations was easier than trying to deal with them. I couldn't quite accept that part of me was lost forever and just tried to cover it up with a smile or a joke! I was stubborn and determined that this 'thing' wasn't going to change life as I know it but I was quickly defeated.

We would sit together on the sofa and Google treatments, solutions, and tips from others in the same situation and Paul would spend hours reading articles, university studies and pretty much anything the internet had to offer that would help him understand what I was feeling. Whether it was him going to shop to buy me silly amounts of chocolate and goodies or a cuddle on a bad day I honestly couldn't have got through it without him. When I came home one evening to find him cooking with an ear plug in his left ear I smiled, his reply, "I just want to hear what you hear".

Once I realised that it was ok to not be ok, I turned a corner. Yes I might cry, shout, get angry and have days where I don't want to get out of bed but now I understand why. The tiredness, the fatigue, loss of balance and tinnitus are things that my brain quickly got used to and I feel a much stronger person as a result. Paul told me to look after myself and stand up for myself when explaining my situation. I now find myself sitting in the best place at a work meeting, teaching with my students mainly on the right and explaining to people the reasons why I might not have heard their question. While shopping the other day I found myself saying "sorry that's my deaf side" when I didn't hear her say excuse me. A year ago I would have just looked down and felt awful for it for the rest of the evening. My friends and family have been great, making sure they save me a space at the left end of the restaurant table, making sure I hear announcements at the airport, turning up the TV, making sure I feel ok in a loud bar and always walking on my right. It becomes a habit and one that me and Paul quickly adjusted too.

As I sit here in the garden on this lovely summers evening I'm thankful to everyone who has made me smile, my close group of friends, boyfriend, family, and work colleagues. Because of you all I am brave enough to speak out, write my blog and record radio interviews! who'd have thought it!

Every day may not be good, but there is definitely something good in every day.

Sorry to hear that...

...this is something I hear all the time, I never know if people are trying to make a joke!

As time goes on I feel more and more obliged to inform people of my SSD in the hope that it excuses me occasionally ignoring them! Among the bad days (and there are quite a few) I do find myself using it to my advantage, may as well make the best of a bad situation.
I often forget that SSD is considered a disability and that every day situations that everyone takes for granted are suddenly taken away. This got me thinking about the pros and cons of hearing loss, we'll start with the cons...

Locating sound direction - I often spend my work day spinning around in a circle trying to figure out where a noise is coming from, I know someone is calling me but where they are in the room is a mystery!

Headphones - These are no longer useful. People with SSD hear in mono-aural not in stereo meaning that we cannot pick out one sound amongst others or cannot hear one persons voice in a group. Songs play different parts in the left/right ear and so before you know it you've missed your favourite verse altogether!

Loud environments - All noises, voices, music and conversation noises blur in to one meaning that the person sat opposite at a party may as well be speaking Chinese. I end up nodding and agreeing just hoping that I wasn't being asked a question!

Crossing the road - I laughed when someone advised me to be careful of this but in actual fact Iv nearly been ran over more times than I can actually count, I never knew how much I took my left ear for granted before now.

Tinnitus - compared to some I'm quite lucky with this but lm forever hearing noises that aren't actually there. I jump at 'bangs' and 'knocks on doors' and have no idea if they are real or not. The buzzing, rings and beeps just add to my everyday craziness.

Driving - not only is road noise SOOOO loud to me now but I can't hear my passenger, especially if the radio is on. My hearing aids come in handy here.

TV and films - since having SSD iv noticed that certain films are impossible to watch. The background noises/sound effects and action noises are often louder than the dialect making it hard to concentrate. A few loud huffs are normally enough to get my boyfriend to change the film!

Answering the phone - I have always, for as long as I can remember, used my left ear for the phone. This took me a long time to get used to and even now I answer calls and say hello 10 times before realising I have it to the wrong ear.

Pro's... While there arent many, they can be quite useful...

Me time - Some days when I get home from my very noisy work environment I like to sit quietly and chill in the peace and quiet. This helps me relax and reset before moving on to whatever I'm doing next. In doing so i find i sleep better and feel more relaxed. I'm naturally a busy, always on the go kind of person so this is a positive for me.

Sleeping - I have always slept on my 'good side' meaning that once I have turned over I don't hear a thing until l the morning. I used to (still do a bit) sleepwalk a lot and so being able to sleep deeply means less 3am conversations with ironing board!

Priority seats - On a recent trip to New York i found out just how helpful this could be. After mentioning my SSD to the box office we were upgraded to 4th row seats :)

The last year has taught me to learn to laugh at myself, without humour I'm not sure how i would have coped. Of course I'm sad sometimes but as long as they say, 'A good laugh and a long sleep are the best cures for anything'

BAHAhaha!

Hola!

Writing this from the aeroplane to sunny Spain while nursing my ear ache, partly from the pressure and partly from the annoying child sat behind! Flying was never an issue before SSD, now it's just noisy and unpleasant with a constant struggle of tannoy announcements! Sitting in the right place is essential if you want any conversation at all, hence why I sat my boyfriend on my bad side!

It's situations like these where I wonder if I made the right choice about the bone anchored hearing aid (BAHA). The BAHA transfers sound by bone vibration, sending sounds directly to the cochlea, bypassing the outer and middle ear. The surgery is a routine 40 minute operation under local anaesthetic whereby a U-shaped or straight incision is made to expose the bone behind the ear. The hole is usually 3-4mm deep depending on the person and is widened (drilled) to fit the titanium implant. 3-6 weeks later (assuming there are no complications) an audiologist will fit the hearing processor which clips on to the implant.

Patients may be offered the BAHA if they are unable to wear a conventional hearing aid or find them ineffective. I was offered mine on the NHS, however costs can reach up to $4000 in the U.S.

I was given one on a headband that pressed against the bone behind my ear. I was to try this for 2 weeks in all working/living situations before deciding on whether to go ahead. I was advised to wear it for 20 minutes at a time at the beginning to help me adjust and then for longer if I could. Like everything, there are good and bad reviews so I was happy to try it for myself.

I tried it at home first but to be honest I didn't notice a great deal of difference from my other hearing aids. The same issues arose in the dance studio and the noisy gym I work in, unless I was in a quiet situation (car, conversation with few people) I found it useless. It didn't help with tinnitus (although mine is only minor), dizziness, balance or nausea and was worse than my cros aids while laying in bed or out in the wind. Positives were that it picked up sounds that I wouldn't normally hear like a clicking pen or the shuffling of some paper. Its also good to know if someone is on your bad side, I spend a lot of time, at work especially, jumping when someone appears on my left side unexpectedly. I dare say that if you work in a quiet office or with few people it would be invaluable but for me personally, I wasn't willing to go through with surgery for very minor improvements that my cros aids already offer.

I would love to hear your thoughts and comment if you have/refused the BAHA. Please feel free to comment below or contact me via my facebook page - https://www.facebook.com/heartodaygonetomorrow/


Until next time...

Help or hindrance?

For my third blog post I'd like to talk about hearing aids, or lack of! 

Your sense of hearing is dependant on tiny hairs deep inside your ear, if you lose your hairs, you loose your hearing. 

Hearing aids use a microphone to pick up sounds and an amplifier to increase the volume in to your ears, this is all well and good if you have something to amplify in the first place! 

After being referred to a hearing aid specialist (NHS) last June I was sceptical but thought it was worth a try. The nurse answered all my questions and fitted me with a new set of Cros hearing aids, balanced them on the computer and showed me all I needed to know. It was explained that the aid will pick up sounds from my bad ear and play them in to my good, allowing me to know what is going on on my left side even though I would hear the sounds in my right. I couldn't notice any difference in the hospital room so I tried them on the way home in the car instead. My Dad was sat next to me (on my bad side) and we talked, listened to the radio and tried to put them to good use. The difference they made was so slight it was hardly worth having. I was disappointed but told myself I had to give them a try. 

After 6 weeks I was convinced they didn't work, despite being told numerous times that I just had to 'get used to them'. In the end I went with my gut feeling and made an appointment to have them checked. I was referred to the Queen Elizabeth hospital in Birmingham where I was seen within a week. The nurse very quickly confirmed what I already knew, they were faulty!

 

Up until this point I felt that all the information I knew about my condition was found on google! No one had sat me down and explained the reasons for my hearing loss and discussed the challenges I may be experiencing. This particular consultant was brilliant and very informative of what may have happened. Once she had replaced my cros aids and they were working correctly, we then went on to talk about the limitations of this particular hearing aid. I was then advised of the BAHA (bone anchored hearing aid) which I will talk more about next time.

The new set were much better and I find them helpful in quiet situations, for example, if me and my boyfriend go for a meal, I can hear the waiter on my bad side, along with the next tables conversation! To be clear, it's nothing like having 2 fully functioning ears, but I can pick up sounds that I wouldn't normally hear. Anything louder than a 2 person conversation they are pointless, for example, in bars and clubs the noise levels can become unbearable and i find myself feeling isolated and sometimes detached from any conversation. If my hair is down I find that it rubs on the speaker and causes a constant swishing sound though my good ear. Hoods and hats are also a no no as I found out on a recent trip to New York with a friend. The weather was wet and cold and the rubbing of them on the speaker made everything sound like I was under water, even with my friend on my good side, the wind also doesn't help. My working environment is incredibly loud with children, a cafe, tap shoes and constant music and background noise. In my opinion, In these situations the cros hearing aid does not provide any benefit. I find myself most days wishing for some quiet! Sshhhhhhhhh!

Until next time...

Facebook page - Hear today, gone tomorrow - https://m.facebook.com/heartodaygonetomorrow/

Am I drunk?!

Before we go any further I would like to take the time to thank each and every one of you for your support, kind comments and feedback on my first blog. It's something I started just for me, to voice my daily moans and in the hope that it may be able to help other people and dance teachers in a similar situation. The response I have received has been absolutely overwhelming with messages, emails, retweets, and blog views coming in by the load! I am more than happy to reply to each and every one of you and answer all of your questions. 

In the UK it's estimated that more than 9,000 new cases of single sided deafness (SSD) are diagnosed every year. That's 24 different people a day that will wake up facing life changing circumstances. After lots of questions from you all about timescales and how this came about, I have decided to share my timeline of events

October - Christmas 2015 - I had an on/off earache and a cold that I couldn't quite shake off, the earache cleared itself up so I continued as normal, as everyone does with busy working lives. At the time I was running my own dance school, working in a coffee shop as well as commuting to Bristol weekly to teach in various locations. Time off wasn't really an option although hindsight is a wonderful thing.

January 2016 - I started to notice reduced hearing in my left ear, doctors advised this was just a build up of wax and that de-congestion tablets would do the trick, I took these everyday, twice a day for 2 weeks with no changes.

February 24th 2016 - I woke up lying on my right side, as I opened my eyes and rolled over I was aware that something definitely wasn't right. I was completely deaf in my left ear and I felt terribly sick and dizzy, struggling out of bed i made my way to the bathroom. I remember falling against the walls down the stairs and I couldn't see straight, my whole world was spinning. I remember thinking "am i drunk?" Little did I know that this was about to become my "normal". I dragged myself to the doctors, although I honestly have no recollection of driving there, I looked terrible and i remember sat in the waiting room trying not to throw up! 

Eventually seen by emergency appointment I was told that there was a 'large hole' in my ear drum but they couldn't see for definite and that my deafness would return when the wax had cleared. I had full faith in my doctor, why wouldn't I? If a mechanic tells you your car needs a new engine, why would you question it?! I went home and continued on to work, i felt awful and was soon sent home. I didn't feel right for weeks after. The dizziness eased but was still underlying and would raise its ugly head every time I got up or span around too fast. As a dance teacher, this became difficult.

I was referred to the local hospital and was sent though an appointment for 9 months time.... horrified, I got straight on the phone for an earlier slot to be told I was not, yes you did read that right I WAS NOT a priority! Unless I was under 5 or over 65 my hearing loss was not important. I'm probably not allowed to publish the words that came out of my mouth that day but as you can imagine the air was blue! I was seen the following week. 

February - March 2016 - 2 more appointments, 3 hearing tests, 1 cancellation, 6 weeks, lots of bad days and a lot of tears later I felt I wasn't being taken seriously, and so took matters in to my own hands and went private. 

Long story short, I was told that my hearing organ had been damaged (probably due to a virus but we will never know for definite) and that my hearing would never return. 

I was devastated. I was told that if I had been given the correct steroids that first February morning, my hearing could have been saved. This information was as useful to me as a chocolate teapot! Not helpful at all! 

The last 12 months have been about getting to know my body again and realising my limits. Some days are bad but there are definitely more good ones now iv got my head around It all. Until next time, onwards and upwards....

Thanks for reading, feel free to contact me.

Facebook - Tracey Ann Marsh

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Email - traceymarsh22@yahoo.com

Huh??

So apparently 24% of people in the UK have had to give up work because of single sided deafness (SSD)....

I am not, nor do I ever plan on being part of that statistic. I lost my hearing in my left ear in February of 2016 as a result of a nasty virus, that's what they told me anyway although to be perfectly honest no one had a clue or could provide any answers of the whys and the how's! Thank god for Google! A year on and im ready to share my story with fellow deaf people who, like me, spend their lives saying what? pardon? and my personal favourite, huh?! 

Im a dance teacher from Kineton,Warwickshire who, beyond the everyday struggles, loves her job. I was only there a month when my hearing disappeared and I felt lost beyond belief. From that very morning of vertigo, throwing up and not being able to walk or see straight, i knew my life would never quite be the same. I convinced myself that it would come back but if im totally honest i already felt like a part of me was gone forver. Going to work that morning i stepped in to a new world of noises, tinnitus, ringing, dizziness and generally having no idea what anyone around me was saying. I felt like a small fish in a huge (shallow!) pond with no way out apart from to keep doing what i do best, teaching. It was another couple of months of hospital appointments, doctors, cancellations, and arguments with the NHS until a friend of my boyfriends put me in touch with a private specialist. She delivered the news that i was dreading (although kind of expecting) that my hearing was never coming back. I ate some chocolate, cried, screamed and got angry but then gave myself a firm talking to....iv still got the other ear right?!

 

Single sided deafness is a very personal and unique journey. Some days the frustration is too much, especially in crowded and noisy situations and even more so if you have no control over your environment. I have no idea where sounds are coming from which is comical at work in a busy gym and studio when someone calls my name. It makes crossing the road interesting and other everyday things that are taken for granted seem difficult, getting up too fast, watching TV, listening to music, answering your mobile to your deaf ear and having a conversation on your 'bad side'.

I figured that even if only 1 other person can relate to any of this then it would be worth writing! 

Until next time....