My first run – Starting to feel normal again

Six months after experiencing sudden sensorineural hearing loss in my left ear I decided I was ready to go for a run. My body had been through a lot during the past few months. The hearing loss had been a shock. I had felt frightened and helpless. My body had felt like a vessel used for experimentation; exploring the effects of different types of drugs on my condition: anti-inflammatories, nasal sprays, intravenous steroids, intravenous anti-viral medication, injections of steroids through my ear drum and different types of vasodilators. My body had felt delicate and vulnerable; I had experienced side effects of weakness, loss of weight, low blood pressure, tiredness and dizziness. But enough was enough; I wanted to start to feel more normal again. I love running. Running always makes me feel happy. It makes me feel strong. It is also a time where I can completely forget about any worries or unwanted thoughts. I wanted to switch off from the recent past.

I had asked my chiropractor, the week before, as to whether he would recommend that I start running again. I remembered that, when I first met him, nearly 4 months ago, he had asked about what kind of exercise I did. Due to the problems I was having with my neck, he had encouraged me to take a rest from running until my neck was feeling better. At this time, I was also dizzy and taking medicine that my body was struggling with, and so didn’t feel strong enough to able to go running anyway. Yet now I wasn’t too dizzy and I wanted to feel stronger. I missed running and thought it might help cheer me up, and help me on my road to recovery. It was also another thing that I would be able to do for the first time with unilateral hearing – another experience to say I have tried, since living with single-sided deafness.

I waited for a few days after visiting my chiropractor, to go for my run. I wanted my first run to be on a sunny day. I wanted my first run to be a good run. I wanted to wake up, see the sunshine, and be spurred on by the beautiful Madrid weather, to go outside and have a go! I did exactly that. I had checked the weather forecast beforehand and it was going to be a nice day. I got out of bed when my boyfriend had left for work, and I rushed to the window. The sun was shining optimistically in the sky, and I decided today was the day.

Putting on my running clothes, I noticed how my body had changed since I had last worn them in the summer before I lost my hearing. My legs were thinner and my bottom was flatter and my stomach looked small and weak.

I walked briskly for 15 minutes to the nearby running track. It is difficult to run on the streets of Madrid as there are always lots of people around, even during the daytime. I didn’t want to feel vulnerable whilst stuck in the traffic of people. I enjoyed the sun, and breathed the air; taking strong breaths to fill my lungs. I find that when I go running, I realize what a small part of my lungs I actually use during everyday activity. Shallow breathing is a habit of mine, as I am sure it is for many people. It’s almost like we forget to breathe, and it’s actually quite an effort to fill your lungs with every breath, when you’re not used to doing it.

When I got to the track, I was surprised at how many people were there enjoying their morning exercise. I immediately started to run; making sure I was moving slowly and focusing on keeping my shoulders slightly back and good posture. I was listening to a storytelling podcast though my running earphones. I didn’t pay attention to the noise of the tinnitus in my ear that resounds with increased stubbornness when the sounds of the outside world are blocked by ear phones. I didn’t pay attention to the fact that I could only hear the story in my right ear. I was purely happy. I was running in the sunshine, enjoying listening to stories. I was feeling normal again.

The only time I thought about my hearing loss and the pressure and tinnitus in my ear, was when I actually realized that I hadn’t thought of these problems.  So the only time I thought about these issues was actually thinking about the absence of thinking of them! Exercise is well known to be a distraction from life’s worries. This was my proof. My first time running with unilateral hearing was a success.

I sent my sister a message later that day, telling her about my achievement. She replied and wrote that she was so glad that I had been for a run and that I was ‘getting my Carlyness back’ 🙂

Advertisements

A second opinion (and lots of medical terminology)

It was early in the new year, and my boyfriend and I had traveled to London for a second opinion about my condition. We arrived at the Ears Nose and Throat clinic, and were asked to complete a basic information form and to wait in the waiting room. The waiting room was enormous. There were plush sofas around the perimeter, and an elaborately decorated Christmas tree that dominated one side of the room. At the end of the room on the left, was a drinks machine that served all types of teas and coffees; all free of charge. We had done our research to find a specialist with lots of experience and with expertise in some of the issues I had been having. We were hoping to gain some more information and some understanding regarding my hearing loss.

When we first met the specialist, my immediate thought was that he looked older than the photo on the clinic’s web-page. He was smartly dressed; wearing a dark suit jacket, white shirt and a tie. His hair was dark with a generous scattering of flicks of silvery grey; additions to his jet black hair that had not been captured in his professional photo. As we entered the consultation room, he greeted us by shaking our hands. He dropped his pen as he walked towards his desk, and stooped down to pick it up. He had the slightly awkward air of a genius. He immediately starting asking questions and scribbling down information on his notepad. He was eager to see some previous medical notes, and grabbed at what I had brought. He continued to scribble down information. Whilst writing, he kept looking up at my face, and commented more than once telling me that he thought I was very pale. He had the nature of an accomplished professional, who seemed to be trying to find an answer to my problem, at an accelerating pace.

He started with some unusual tests. He asked me to stand up and I accompanied him to the corner of the room. He commented on my size saying, ‘there wasn’t much of me’. I was asked to walk in a straight line; stand still and balance; and to close my eye, put my hands together in front of me and march on the spot. When he asked me to stop marching, I opened my eyes and found that I was no longer looking at the same part of the wall as when I had started marching; I had rotated about 45 degrees. My boyfriend found this amusing. This test showed that I was somewhat off-balance. He also asked me to sit down and look him in the eyes, as he flung me from side to side. He asked me to lie down on a chair in a small room that was attached to the main consultation room, and again I had to look at the bridge of his nose as he flung me from side to side. This left me quite dizzy, and when he let go of me I swayed slightly to the left. Next I went to have some hearing tests. These were the usual tests that I had done so many times, and also tests of the middle ear, including a tympanometry and Eustachian tube function test.

After a short wait, we went back into the consultation room. The doctor told me directly, that I had lost 90 percent of the hearing in my left ear. He told me that there was also a small hearing loss in my right ear. There was also evidence of significant inefficient Eustachian tubal function in both ears; marked on the right side.  I had never been told so clearly the extent of my hearing loss, although I was very aware that it was severe. Nobody had told me that I also had a hearing loss in my right ear, and this came as a shock to me. He said that as the hearing loss in my left ear was so severe, it would be unlikely that a hearing aid would help me. This was disheartening. The specialists in Spain had given me some hope regarding some kind of aid. I appreciated this specialist’s candidness, even if it was difficult to receive this information. He then commented again about the paleness of my skin. He recommended that I get my Vitamin D levels checked, along with some other blood tests. I said ‘yes’ to all of his suggestions. He also suggested that I carry out a speech discrimination test of my (good) right ear, to see how well I understand speech.

I had my blood taken. Soon after, I was sitting back in the hearing test room, listening to an audio of someone saying words at different volumes. All I had to do what say what I could hear. It reminded me of a test teachers might give to young children or to children who are learning English as a second language. I found this test OK, until the quiet level, where I ended up saying word endings or just a single letter-sound that I could distinguish in the words. Everything happened at such a fast pace.

Then the specialist told me that he recommended me to have an Electrocochleography (ECoG) test of my (good) right ear. This test measures the electrical potentials generated in the cochlea—a part of the inner ear—in response to sound stimulation. He wanted to see if the test would show any evidence for the reason of the small loss of hearing I had in this ear. He stressed the importance of taking care of my right ear – my only hearing ear. So he squeezed anesthetic cream into my ear and we went downstairs to the waiting room for about half an hour while my ear became numb. Yet again, I had electrode pads stuck to my head. He rubbed my forehead harshly with the sandpaper, and was surprised at the sensitivity of my skin. I then lay back on the chair and I was attached by the electrode pads to the computer. An electrode was also fed deep into my good ear. Yet again I had the same feeling as when I had the steroid injections: the scratchy discomfort, deep in my ear and in the back of my throat. Yet again, a series of clicks were played into my ear.

The specialist explained the results of this test. He told me I had a form of a condition called endolymphatic hydrops in my (good) right ear. Endolymphatic hydrops (also known as Cochlear hydrops) is thought to be an early form of Ménière’s disease. Basically, it is a problem with the fluid in the inner ear. This diagnosis explained the pressure and feeling of fullness in my ears; the tinnitus; the hearing loss; and dizziness I had been experiencing. The specialist thought it was likely that the hydrops was also the underlying pathology affecting my left ear six years ago, when I had begun to experience tinnitus that had lasted three years. He felt I had probably had Cochlear hydrops in my left ear all these years, and it had subsequently resulted in my sudden sensorineural hearing loss.

After five hours of tests and consultations, we had a lot more information and a bit of a plan. I was to wait for the blood test results. I was going to take some more strong antiviral medication for 5 days, in case of the hearing loss being a result of a virus. After completing the anti-viral medication I was then to start inner ear vasodilator treatment by taking a medicine called Serc 16mg, for 4 weeks, to see if this had any effect on reducing the pressure in my ears.

Testing testing

Eight weeks after experiencing sudden hearing loss in my left ear, I was back at the hospital to have a test called a Brainstem Auditory Evoked Potential (BAEP). I had read that this test involves monitoring responses to a series of ‘clicks’ using electrodes positioned on the scalp. In my case the BAEP could be used to assess conduction through the brainstem and auditory nerve pathways that are not as accessible to other testing procedures. In other words; the results could give the specialists more of an idea as to why I couldn’t hear anything in my left ear.

I arrived at the hospital early in the morning, slightly before the time of my appointment. I was on my own, and feeling somewhat nervous about what was going to happen. I watched as people went into the room where they do the hearing tests. I watched people who arrived after me, go in before me. I guess that due to the amount of time the test was going to take, they saw the people first who were going to have the, less time consuming, routine hearing tests.

My name was called, and a man explained to me what was going to happen. He cleaned my forehead and behind my ears with what I assumed was alcohol, and then used what felt like a small piece of sandpaper to rub the same areas in order to help the electrode pads stick to my skin. Then he stuck two pads in the middle of my forehead, one above the other, and also one behind each ear. My face stung slightly as the alcohol permeated my newly exfoliated skin. The electrode pads were white circles of thin plastic with a silver metal circle and raised bit in the middle; where wires would be attached. They looked like small targets on my head. I asked one of the staff members who, after my many hospital visits, I was now well acquainted with, and who always greeted everyone with a smile and a joke, for something to tie my hair up with. He shortly emerged from one of the rooms and handed me an elastic band. So there I was, on my own; hair roughly tied up with an elastic band and white targets on my head. I waited for the next step of the process. I was sitting in a doorway. Nurses and hospital staff kept passing by, taking a look at me and making little comments such as, “Pobre!” or “Pobrecita!” –  Literally translated as “Poor person!” or “Poor dear!” Every time someone came in or out of the room of the doorway in which I was sitting, the people in the waiting room opposite were presented with me, the ‘pobrecita’, with the electrodes stuck to her head. When the doors slid open, there I was for all to see! I waited for over an hour. They were carrying out the test that I would be having, on a young child, and it must have been taking longer than they had planned for.

When it was my turn, I was shown to a small room with white walls, two chairs, a desk and a computer. I was asked to sit on a chair that was covered with a white sheet. Wires were then connected to pads on my head and behind my ears. I put on a pair of headphones and I was told to relax and listen to the ‘clicks’. My brain was going to do the work for me; I just had to sit there. I was also told that sometimes people fall asleep during the test. Throughout the process I could hear lots of ‘clicks’. Some that were played into my good ear were almost painfully loud. I have no idea how anyone could possibly fall asleep; sitting in a small room with a stranger, with electrodes attached to their head with clicks being randomly played at loud volumes! I had the thought that, what if my brain was picking up the signals from me hearing my tinnitus noises and confusing them with the real sounds that were being played into my ears. Would this show on the results? I’m sure this isn’t the case, as most people with hearing loss also have tinnitus. But it was a thought that intrigued me. The test took about an hour. The electrode pads were removed and I was free to go home.

Three weeks later I was back at the hospital, with my boyfriend, for a consultation with an Ears Nose and Throat specialist. We were there to talk about the results of the BAEP test; whether the steroid tablets and steroid injections had helped me; whether my hearing had improved; and how I was feeling in general. My boyfriend and I had unintentionally placed a lot of hope in this appointment. We hoped the specialist would be able to tell us some more information, or give us a plan of what to try next. We walked into the specialist’s office with all of our questions written down, so I wouldn’t forget to ask them. Things always feel a bit rushed in the hospital, and they are always so busy. My heart sank when I realized it was a specialist whom I hadn’t previously met. I had hoped to see one of the many specialists who were familiar with my story. I had done a hearing test before I went into the consultation room, and the specialist explained that the test results were the same as when I first lost my hearing. He told us that the MRI results were normal: I already knew this as I had received these results weeks ago from my GP. He also told us that the BAEP test had shown the same as the hearing test – that I couldn’t hear. The test results weren’t explained in any more detail.  He said that sometimes there are cases of sudden hearing loss where, within a 6 month period, a patient’s hearing comes back naturally. He told me to wait for three more months and then come back for another consultation. Maybe a hearing aid could help me if there was no change in my condition.

Deflated, we went outside of the hospital and sat down on a bench in a park across the road.  I cried. They hadn’t told me anything I didn’t expect or already know.  I didn’t really expect them to have any more answers to tell us. But I couldn’t help but raise my hopes for a solution. I didn’t want to stop trying things that could help my situation.

We needed to put our minds at rest. We decided to seek a second opinion.

 

Sounds of Madrid

There are days where my unilateral hearing can make me feel so vulnerable. Going outside can be such a challenge, and one that I have to mentally prepare myself for every day. I live in a city, and as soon as I open the apartment block door, I walk out into a mess of noise. Loud deep roars of traffic and the chatter of people forces me into a bubble of isolation. When I am surrounded by sound I cannot sense when there is something approaching my deaf side. I do not realize when someone is walking next to me, or if a bike or car is about to pass me by. When there are background noises, it is difficult for me to focus on conversation; I can’t hear individual sounds clearly, and my ear and head fill with pressure from the sounds, which also adds to the difficulty in understanding speech. If I am outside by myself, I try to keep my deaf ear to the wall, or next to the traffic, so that my good ear has a better chance at hearing noises of significance. When I’m outside with my boyfriend or friends, I have to keep them on my hearing side, and find myself constantly looking at them, to check if they have said something to me.

Traveling on the metro is uncomfortable. The loudness of the train approaching and the screech as it nears the platform can be almost unbearable. Once on the train, there is a bell sound and an announcement of each stop. This bell can be piercingly loud. Before arriving to a station, a recorded announcement says: “Próxima estación [name], correspondencia con línea [number]”: “Next station [name], transfer with line [number]”. Some metro lines have announcements to mind the gap between the train and the platform. Some trains have a whistle sound when the doors close. The metro is a challenging bombardment of sounds. I worry when I’m traveling alone that people might talk to me, and I won’t be able to hear them, or even worse, not even realize they are speaking to me, if they are on my deaf side. They don’t know I can’t hear them. I always worry about seeming rude if I don’t respond to people.

Madrid is a city that is bursting with the music of performers and entertainers. Every part of the city has its own soundtrack. People hop on and off of metro trains; wheeling their portable amplifiers, and various instruments: panpipes, guitars, violins, even miniature pianos. In metro stations, and in fact anywhere in the city, you might encounter a man playing his violin to the soundtrack of Titanic. You might encounter someone playing drums, made of pots and pans or other recycled materials, to a fast backing track beat. You might encounter another violinist, this time without a backing track, and passionately playing a well-known piece of classical music. You might encounter guitarists strumming guitars wildly and singing with raw passion. When walking into town, you can hear a Spanish guy sitting on the side of the street playing his guitar, singing Bob Marley songs in his own unique style; short high-pitched staccato sounds.

This intrinsic creativity, that is present in every part of Madrid, is enchanting. But it is also something that now presents me with a challenge. Now I am trying to enjoy the sounds of Madrid again. Now I am trying not to focus on the tinnitus that the loud sounds of music can bring, and not to focus on the perpetual worry of missing a strangers words. Instead I want to focus on learning to enjoy this wonderfully noisy city that I live, and that I am trying to love again.

The first time… Part 2: being brave and feeling proud

When I first experienced my hearing loss, I couldn’t contemplate doing normal things such as going to a bar; which is a big part of the culture of Spain, where I live. I remember walking around the city, watching people spilling out of bars chatting sociably, and wondering if I would ever be able to feel comfortable again in this kind of animated environment; alive with noise. Then one day my best friend invited me to go to a bar where she was exhibiting some of her photos. I didn’t want to say no. I didn’t want to let her down. I wanted to see her, and her photos. So, the first time I went to a bar, with unilateral hearing, was to see my friend’s exhibition. Of course it was going to be noisy, and I was mentally prepared for this. When we arrived, I immediately submerged myself in the sounds of vibrant conversation.  I managed to communicate with everyone and listened to them by tilting my head and making sure my good ear was facing them. Although it was exhausting and my tinnitus was ringing aggressively, I was really proud of myself for confronting such a challenging situation.

The first time I went, with unilateral hearing, for a haircut, I was so nervous. I knew the salon would be noisy and I knew the hairdresser would want to chat with me. I didn’t want her to think I was being rude if I failed to respond to her during conversation. So when I was sat on the chair explaining to her what I’d like to have done with my hair, I also told her that I was deaf in my left ear. She barely had a response, apart from saying “OK” and giving me a smile.  As she was cutting my hair she sometimes spoke to me on my deaf side. When she was blow-drying my hair, it was impossible for me to hear her, and she continued chatting happily. I could see her mouth moving in the mirror, but didn’t know how to answer her. Yet she didn’t seem to be phased. I guess hairdressers see so many different people every day, with so many issues, and learn to take it in their stride.

I love eating out in restaurants; in fact it’s one of my favourite things. If I go to eat in a restaurant however, there are only a few tables that are accommodating to my needs. The best table for me is one that is in a corner, with a chair situated in a position that will allow my deaf ear to face a wall, and my good ear to face the direction of any possible conversation. The worst positions are: at a table in the middle of a room; sitting with my back to where the waiter will approach; and anywhere where my deaf ear is directed towards the waiter – This will result in me jumping up in my chair in surprise as I turn to unwittingly see a waiter standing next to me, who I hadn’t sensed was there.  The first time I went for a meal in a restaurant, with my unilateral hearing, was when my boyfriend’s sister came to visit. We went to a Thai restaurant on a weekday, and earlier than the average Spanish person eats. The restaurant was almost empty and I managed to get a good position at a table. Although there was very little noise from people talking, I found the Thai music that was being played, a distraction. My good ear struggled to filter out the music and it was difficult to focus on conversation. It was quite a difficult experience, in terms of my hearing related problems and communicating. But I was really proud of myself for going, and it was worth the struggle, to have the experience of eating Thai food in a restaurant.

Every time I did something for the first time, I gained a bit of confidence. Things weren’t easy and often weren’t pleasant, but every day I was trying to do something ‘normal’. I was positive I would be able to enjoy things again. I just needed to familiarize my body with the new experiences and learn strategies to deal with any new issues. My life was still going to be full of experiences; it was just going to be a bit different.

The first time… Part 1

My life became a collection of firsts. I was doing normal everyday things, yet for the first time with unilateral hearing. Normal things became new experiences. Simple tasks became difficult missions.

I began with attempting basic activities; ones that I hoped would prove not to be too noisy or tiring. My boyfriend and I tried to think of quiet things to do in the city where we live. We would go on short walks around the city or spend time in a park. The park became one of my favourite places. In the park, there were no immediate sounds of traffic, only the occasional muffle of cars in the distance. The gentle chatter of people in the open air proved a helpful distraction and assisted in drowning out my tinnitus. It felt relaxing to be in an open space. However, in order to get to the park, I had to first walk through the city. Opening the front door of our apartment building unlocked a world of noise. Going outside meant putting myself in a position where I felt physically uncomfortable from the pressure that filled my ear and head when I am surrounded by sounds. It would have been much easier to stay in the comfort of my own home, where I could control the sounds that surrounded me. But I enjoy doing things. I enjoy going out and exploring the city. I’m young, and I didn’t want to hide in our apartment. It was just going to take some time getting used to the new challenges I would be facing.

We started to go to more art and photography exhibitions. Often, when they were quiet, and there was space to move leisurely from painting to painting, a gallery was an untroubling and almost a soothing place to be. However, I realized that even galleries could present me with a challenge. One of the first exhibitions I went to was a photography exhibition. I had been looking forward to it. I had seen it advertised and we went on one of the first days of opening: this should have been a clue to the overcrowded environment that would await us. As we entered the room, we were surrounded by beautiful photos that had been in the world’s newspapers. Yet we were also surrounded by people. The photos were displayed on walls; either side of a narrow space that curved round in an arch, back to the entrance. There was hardly any space between each person, and everyone was shuffling around the small area, waiting to view the next photo. Everybody was talking. I could almost feel the voices bouncing from wall to wall. The sound had nowhere to go and was confined to the small densely populated space.  This experience left me feeling exhausted, disorientated and deflated.

Then there were the trips to the supermarket. These proved to be really difficult, and still continue to challenge me. There is an intensity of sounds in a supermarket that I had previously been unconcerned with. There’s a loud fan for the oven where they make the bread. There are people speaking over the PA system. There is supermarket music and people talking. In the supermarket, it is very difficult to filter all the background noise and I cannot focus well if someone is speaking to me. In the supermarket, there are the random people who always choose to speak to me: the old man who wants to talk about what kind of bread I’m buying and then starts to tell me about his son who is living in England; or the lady who’s asking for my help to find where the cleaning products are. These interactions are a challenge.  I can’t hear what the person at the checkout is saying to me. I have learnt that usually they are asking how many bags I need; if I am playing by cash or card; or if I have a store points card. I have learnt to just ask them to repeat themselves, if I don’t know what has been said to me. Then, if I really can’t hear what they have said to me, I just give them a smile. As I am English and living in Spain, and still in the process of learning the language, perhaps my lack of hearing is often disguised as a lack of understanding.

Every day I was learning new ways to tackle the issues that I was now facing as a result of my hearing loss. Every day I was going outside into a world of noise, and trying to continue to experience life as much as possible.