Who would have thought that losing your hearing could be so noisy?

There is more to my story, but I am taking a pause to explain a little about dealing with the effects of my sudden hearing loss…

The obvious problem with being deaf in one ear is that I can’t hear. I have read about other people’s stories of sudden hearing loss and it seems that everybody’s experiences are unique. Many people lose their hearing in similar ways such as hearing a pop in their ear or feeling a fullness sensation in their head accompanied with pressure. Yet, the after-effects can differ a lot. For me, it is not the actual deafness that is the main issue I am dealing with, but rather the other ‘hidden extras’ that come with my condition. Of course, I get frustrated by not being able to hear well. How many times can I ask my boyfriend what he has just said to me? How many times can you ask someone to repeat themselves, before they decide that what they were saying ‘doesn’t matter’? But I am facing more challenging issues than just having unilateral hearing.

With only one hearing ear, I have no idea where sound is coming from. I might hear some music or a noise, but I won’t know which way to look to see what has produced the sound. I find it difficult to filter out background noise. When I am in a place with sounds such as traffic, people talking or music, and somebody tries to speak to me, I cannot hear them unless they are standing very close to me on my hearing side. Another issue I am having is that I am sensitive to loud noises, and with loud noises my head fills with pressure. The kitchen is a orchestra of cutting sounds: water running and clinking as it splashes in the metal sink, kitchen pots and pans clanging together, the ping of the microwave and the beeping of the washing machine, and the oven fan that blends the other sounds together; making a mass of pressure in my ears. Another uncomfortable part of my day is when I open the main door to the block of apartments where I live, and am immediately faced with city sounds of traffic and people. Eating crisps, or anything crunchy such as crusty bread, sounds so loud and distorted in my head. This was originally something I found really difficult to cope with, but seems to be getting better with familiarity. One of the most upsetting things is that I have realized that many of the things I love involve noise. I love music and listening to podcasts on my IPod. Now I no longer can enjoy music how I used to. I have programmed my earphones to filter all the sounds from music into mono so that it ensures I don’t lose the sound of the drums or vocals when using only one headphone. However, this obviously means that all the sound goes into my right ear, which is already dealing with enough right now, and soon becomes uncomfortable with the intensity of the noise. I also have times where I feel dizzy. It is not the full-on vertigo that I had when I first experienced my hearing loss, but instead more of a light headed sensation, usually when I stand up from a sitting position, or when I am walking outside and there are lots of people around. I regularly feel exhausted. I’m not sure why. Perhaps it’s my body trying to adapt and cope with feeling off balance and sensitive to my surroundings. Everyday sounds are tiring. With tiredness comes the difficulty of concentrating on individual sounds, which in turn makes the process of hearing conversation difficult. I also have continuous tinnitus in my deaf ear.  For me, my tinnitus is rarely just one constant sound, but rather a mixture. Some common sounds for me are: the sounds of swimming with my head underwater, bells, ringing and whooshing – like the sound from those corrugated plastic tubes that children swing in circles to make a noise.  During the daytime I am often able to disconnect from my tinnitus, as there are usually other ‘real’ sounds to occupy my hearing. However, when I am lying in bed trying to sleep I hear only my tinnitus. Everyday at this moment, I wish for silence.

There have been difficult times where I have lost confidence or when I’ve experienced moments of sadness and the feeling of loss. There are some days when I feel deeply sad. I sometimes think it would be easier to have been deaf in one ear all my life, than for it just to happen to me. I know how great music can sound in stereo. I know how easy it can be to talk with people and hear their responses. I know how it feels to enjoy the loudness of the cinema or to experience the force of live music at a festival bouncing through your body.  I also know there are people going through much more difficult and scary things. Yet it is only human nature to feel sad. I have felt angry at my body letting me down like this. I’ve lost a part of me that played a big role in enabling me to interact with the world. I need to grieve. I am starting to deal with it. I will keep trying every day, to tackle the new challenges that come with my hearing loss. Eventually I want to be able to embrace my hearing loss, and not let it upset me, rather for me to take control. I believe that it is the things that are different about us that make us unique. I want to enjoy the hearing that I do have and feel grateful for it.

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Taking corticosteroids

When I left the hospital, I was given a prescription for Prednisone tablets, which are a type of corticosteroid. I was to take them for four weeks, each week decreasing the dose. As I have mentioned before, corticosteroids are different to the type of steroids that you hear about athletes abusing.  They mimic the effects of hormones that your body produces in your adrenal glands, which are just above the kidneys. If they are taken in doses that exceed your body’s usual levels, corticosteroids can suppress inflammation. They also inhibit your immune system, which can help control conditions in which your immune system mistakenly attacks its own tissues. If you stop taking Prednisone abruptly or taper off too quickly, some people can express withdrawal symptoms such as severe tiredness or body aches. Another reason for gradually coming off corticosteroids is that this gives your adrenal glands time to resume their normal function.

With taking corticosteroids can come many different side effects. For me there were 4 main ones. The most noticeable effect for me was the loss of my muscle tone; very quickly I lost the definition in my arms and my legs. It was nearly autumn-time in Madrid, but the days were still often warm. I would enjoy going for short walks with my boyfriend, and in the warm weather I would sometimes have bare legs. Every day, when I looked down at my legs, they seemed to get thinner and thinner. I called them my Bambi legs. At first the sensation when walking, was as though my body was really light and I felt like I was almost gliding. Later, my legs started to become achy and wobbly, and I would become tired much more easily. Next were the hamster cheeks. I had read that people who take steroids can have a redistribution of fat. As the days went on, my cheeks seemed to get fuller. This side effect however, didn’t bother me too much. My face has always been very slim, and slightly puffy cheeks actually didn’t look too bad. I felt lucky, for the first time in my life, to have such a thin face, as I know that this is a side effect that can really upset takers of Prednisone who start off with more rounded faces. Similarly, another side effect was the little tummy bump that seemed to be growing with every tablet I took. It wasn’t that the tablets were making me fat, in fact my arms and legs were getting thinner, but that I had a little distribution of fat around my tummy that didn’t seem to be a result of how much I ate. Then there was the crying; this started when I was in hospital. At first I put my teary outbursts down to my situation: I was scared and tired and felt helpless. However, I realized that I didn’t seem to have any control over my emotions and would randomly start crying. These emotional eruptions continued during my weeks of taking the Prednisone at home. I would find myself thinking about my situation, about possible causes for my hearing loss, and about a future with unilateral hearing, and I would break into a mess of tears. I guess that when thinking about my condition, it was quite a normal reaction to become upset. However, there were times when tears were just unwarranted; sometimes my boyfriend would come back from work and I would be happy to see him, so I would cry. He would get me a cup of tea, and I would cry. I ended up telling him to ignore me when I was crying, especially when I was in the hospital and he had enough to worry about, than me bursting into tears at regular intervals. After taking corticosteroids for only a few weeks, I have so much sympathy for people who have to take this kind of medicine for longer periods of time. I know corticosteroids can save lives, but it is with the risk of some nasty side effects.

Every week, on a Tuesday, I would go to the hospital for steroid injections in my ear. There was about an hour each time, immediately after having the injections, that my ear felt more ‘open’, like there was slightly less pressure. But after that hour usually followed a headache and some pain deep inside my ear, with any small improvement diminishing to nothing.

It took a few weeks to get the results from my MRI scan. My doctor printed off the information, and told me that everything was ‘normal’. Although I was happy that there was nothing sinister on the scan such as an acoustic neuroma, I also felt somewhat frustrated, as we were still no closer to knowing what had caused my hearing loss. I found myself constantly searching on the internet for an answer, because it seemed like nobody else had one to give me.

Time to go home

It was Friday and what I was hoping would be my last day in the hospital. My roommate had also been told that she may be able to go home on this day, and when we awoke that morning we greeted each other with optimistic smiles and crossed our fingers.

During my week in the new room, friends came and visited me nearly every day; visitors who all came with stories and who were all bearing gifts. One day, my friend who was heavily pregnant at the time, came to visit. She shuffled radiantly in to my room, carrying an enormous and beautiful tropical-looking plant. She is only a small lady, and I could barely see her behind the long green leaves, and the red cellophane wrap which surrounded the plant. She made me giggle with stories about her pregnancy. She was only a couple of weeks away from her due date, and she told me how she felt like her hands and feet were so swollen that they resembled pig’s trotters! She also spoke about the various methods she had been trying in order to go into labor, and how she was going to start drinking some special herbal tea that she hoped would lead to a successful result.  After chatting for a long time, we said goodbye; both wishing the other well with the new challenges life was going to bring. Another friend, who I have worked closely with for around 2 years, came to see me with her husband. This friend is much taller than me, and she gives the best hugs. When she entered the room, she enveloped me in her comforting embrace. She lives outside of the city, and she brought me figs from her garden and told me all about what had been going on at the school I work at. On the Thursday evening, two other colleagues came to visit; one Italian and the other Spanish. They brought me a big card with drawings from all the children in my class, and it made me feel sad to not be able to be there with them. Again these friends told me about more news from my school, and updated me on how the children in my class were doing.

Whilst in hospital I had been desperately looking forward to normal everyday life. My boyfriend and I had talked about what I would do when I got home: take a long shower, put on clean pyjamas, eat spaghetti, go for a walk in the sunshine, watch a film together, have a cup of tea, eat Marmite on toast, sleep in my own bed… The normal seemed so exotic to me now!

My roommate showered promptly that morning. Her doctor visited the room early and I could hear him making preparations for her departure. I felt so happy for her. After the doctor had gone, she went to our cupboard and took out some clothes. Shortly she emerged from our bathroom, in a fitted flowery dress, and looking revitalized. I had to wait to be disconnected from the IV machine, and then I went to have a consultation with a specialist. It was the same specialist I had seen on the Monday. There had been no improvement in my situation. I still couldn’t hear in my left ear, and I was also finding loud noises uncomfortable, and was experiencing tinnitus and fullness of pressure in my ear. I was told that I would need to take Prednisone (a type of corticosteroid) for four weeks, in decreasing doses each week. I would also continue with the intratympanic steroid treatment of having injections in my ear, every Tuesday for three more weeks, and I would need to make an appointment for an MRI scan. I was still hopeful that the medicine would start to work in tablet form, and the thought of being able to properly relax and rest in my own home also made me optimistic for a recovery. When I got back to the room, I quickly showered and put on the grey dress that I had worn a week ago when I was admitted. It felt great to be wearing normal clothes. Soon after, I was again attached to the IV medication and I waited, sitting on my bed, for my paperwork to arrive and to indicate my time to go home. I waited a few hours. I said goodbye to my roommate and we gave each other a hug and wished each other a quick recovery.  It wasn’t too long before I was walking to a taxi, holding on to my boyfriend with relief. It seemed so bright outside. Very soon I was home.

Two weeks later it was the day of my MRI appointment and I received a message from my friend. She wrote that today we would both be in hospital. Beneath her message was a photo of my friend with a joyful smile, in a hospital gown, waiting for her baby to arrive.

Injections and a bit of love

The next morning, after seeing another specialist, I had a visit from the doctor who I had initially seen when I was first admitted to hospital, 4 days ago. She told me that there was another treatment called Intratympanic Steroid Treatment which would involve injecting steroids into my ear, once a week for four weeks. I told her that I was willing to try anything, and very soon I was lying on my bed as she tipped drops of anesthetic into my ear. She went away, after telling me to lie still and let the anesthetic numb my ear drum. After about half an hour the doctor came back and took me to a room just down the corridor. I was asked to lie down on a cushioned bench and to stay very still. I couldn’t see what was happening, but the doctor talked me through her actions. First she used a little vacuum-like tube to suck the anesthetic drops out of my ear. Then I felt a needle pierce my ear drum and travel through my ear, to what felt like deep inside my head. I could feel the needle somewhere between the bone of my jaw and side of my throat and was experiencing a scratchy pain in this place. I was desperately trying to stay still. My eyes were watering with nervousness and discomfort. After the steroids had been injected, I then continued to lie in the same position for about another half an hour to allow the steroids to infuse into my inner ear. I was so tired and lying there on the doctor’s bench in my hospital gown, I felt extremely vulnerable. I closed my eyes.

When I got back to my room, I was given a handful of cotton wool to soak up the mixture of liquid and blood that had started to drip out of my ear. Whilst feeling sorry for myself, and gently dabbing my ear, my boyfriend entered the room.

When I was in hospital my boyfriend was always by my side. Every day he would appear in the hospital room doorway with a smile. He’d bring pastries for breakfast, which we’d enjoy together in the mornings. When I was fed up of the cold milky hospital coffee, he brought me peppermint tea in a takeaway cup from a café outside the hospital. Every day he asked me for a list of things he could bring me from home that would make me feel more comfortable. He’d sit by my bedside doing work on his laptop while I slept. He would hug me tightly when I was upset or scared, and would always manage to calm me with positive words. One day, when the intravenous was uncomfortable, he washed my hair for me – I joked with him, that it was the most intimate I’d ever been with anyone! .

One day I was desperate for some fresh air, and my boyfriend and I decided to escape for a bit. I put my denim jacket over my shoulders and put my plimsolls on. Dragging my IV stand with two swinging glass bottles, we scurried to the lift. Once on the ground floor, my boyfriend carried my IV stand down the ramp to some exit doors, with me following behind. When we got outside we sat on the wall where the hospital staff usually gathered on their smoking breaks. There was a slight chill in the air as summer was moving into autumn; though the sky was a lively blue. I was longing to go home.

Before my sudden hearing loss happened, I would often rush through my days and routines, and everyday life would pass by, without time to pause or appreciate it. It was when I was in hospital I had time to reflect. I had moments of intense emotion, where I felt so thankful and fortunate for the love and care my boyfriend was showing me. I could see he was scared, and that he needed someone to talk to as well. I know it was hard for him, especially going back to an empty apartment with a mind full of worries and questions.

New medication

My first night in the room was an upsetting one and I felt like I was also imposing my distress on my roommate. In the early evening a nurse entered our room with a small, cubic-shaped machine and an intravenous stand; which looked like a cheap metal, unembellished hat stand. What I understood from what she told me in Spanish, and what her actions were telling me, was that she would be giving me some medication which involved the machine. The medication I’d previously been given had not required a machine, so I was puzzled at its presence. She proceeded to attach the machine to the stand, tightening a clamp at the back, and then clumsily secured an IV line to my arm; passing this thin plastic tube through a gap in the machine. She attached a small brown glass bottle of corticosteroid liquid to the top of the stand, and told me to press the emergency call button to alert her if the machine made a beeping sound. Within a few minutes the beeping started. As instructed, I pressed the red button that was attached to a cord next to my bed. ‘Beep Beep Beep…’ With each Beep I felt more and more awkward as I was certain I was disturbing my roommate. The nurse came back to the room to see what the problem was. She had short brown wavy hair and wore red glasses. Her glasses were on a string around her neck that she kept taking on and off in order to look at the machine, scrunching her face into an unnerving expression. She straightened out the IV line and then fed it back through the machine, pressed a button, and again told me to call her if the machine beeped. A few minutes later, ‘Beep Beep Beep’. Again I pressed the little red button, and again I felt concerned about disturbing the calmness in the room. This time the nurse took longer to return, and my roommate asked me if I had pressed the call button. I reassured her that I had. Back came the nurse, looking even more frustrated. Fumbling with her glasses again, she straightened out the IV line and then fed it back through the machine, pressed a button, and yet again told me to call her if the machine beeped. The third time it beeped, the nurse entered the room looking puzzled and exasperated, and this time she decided that it was a problem with the intravenous line in my arm. She then proceeded to check my arm for more suitable veins; taking her glasses off and putting them back on, to be certain of her choice. She decided on a rather uncomfortable location where my wrist meets my hand, just down from my left thumb. I turned my head so as not to watch her make the initial puncture in my skin, and tensed my face as I felt her awkwardly insert the IV line. She taped the tube to my arm, and again straightened out the line and then fed it back through the machine, pressed a button, and yet again told me to call her if the machine beeped. Once she had left the room, and the machine had been quiet for a few minutes, I lay back on my bed and tried to relax. Since the medication bottle was small, I naively expected its contents to have been transferred into my body quite quickly, and then I assumed it would be unattached from my arm and I would be able to sleep comfortably. However, I soon realized that every few minutes when the machine made a mechanical clicking sound, only the tiniest of drops was released into the tube, and into my arm. I fell asleep, thinking that I would call a nurse when the bottle had finished, so they could disconnect me. An hour or so later, I awoke with an acidic stinging sensation in my arm. My arm had started to become swollen just above the line entrance, where the unpleasant liquid was entering my body. With every tiny drop, came more pain. I lay there, drifting in and out of uncomfortable sleep, until around 4am, when the machine finally beeped to signal the bottles emptiness. After only a couple of beeps, in came another nurse. This time it was a short, middle aged man, with a calm and friendly nature, and who entered the room with a torch in his mouth, so as not to disturb us with the room lights. I told him I was in pain, and his demeanor seemed to suggest that this was normal, although I was very tired by this point, and could not focus on what he was telling me in Spanish. As he removed the tube from the bottle, I heaved a sigh of relief. But a second later, to my dismay, he attached another identical bottle to the line, straightened out the line and then fed it back through the machine and pressed the button to turn it back on.

By the second night, my arm was so swollen from the excruciating buildup of medication that the nurses had to try two more IV locations in my other arm, and I also finally ended up getting a different machine.

A new room

It was Monday, three weeks after I’d experienced the sudden hearing loss in my left ear, and there was still no change in my condition. That morning I was taken out of the ward. I was wheeled out in a wheel chair through the hospital to the Ears Nose and Throat area. I remember feeling so happy to be away from the ward, where I had spent every moment during the last 2 days, and I smiled at my boyfriend who was accompanying me.

First I went into a room with a small booth where I had another hearing test. It is difficult to do a hearing test when you have pressure and roaring tinnitus in one ear, and I found it challenging to distinguish between the beeping sounds that were being transmitted through the headphones, and the tinnitus. I also had the problem that when the technician played a loud sound into my deaf ear, I wasn’t able to hear it in that ear, but instead could hear it in my right ear. My head was conducting the sound that my left ear couldn’t hear. To solve this problem, a loud wind-type sound was played into my working ear to mask the conducted sound, to help me concentrate my left ear on the beeps; in actuality, this meant that it was even more difficult to concentrate. Next I was wheeled down the corridor and around the corner, to another room where a man put small plugs into my ears to check the pressure. Then I had a consultation with a specialist. She was a different specialist to who I had seen on the Friday when I was admitted to hospital, but was friendly and also spoke good English. She explained to me that there was no improvement in my hearing test, and that I’d have to stay in the hospital at least until Wednesday, as they wanted to see if I would have any response to further treatment.

Later that day, I was finally taken off the A&E ward and into a room that I would be sharing with one other patient. My new roommate was an older woman of whom I found it very difficult to guess her age, as she seemed to look younger with every day as she recovered from the complications she’d been having after surgery. Our room was simple, but comfortable. There was a window which allowed natural light to illuminate our days. We had a shared bathroom with a shower and sink, and two large plastic orange tubs of some mysterious liquid of which I never discovered its purpose.  My new roommate was a perfect hospital companion. She occupied the bed near the window and she valued her privacy. We often we passed our days with the curtain drawn between our beds, engaged in our own worlds either side of the curtain. She would spend her days reading, and I would spend time anxiously trying to relax, alternating between activities; reading, writing phone messages to friends and family, and sleeping. Every now and then, my roommate would peek around the curtain and check I was OK. She would always insist that if I needed anything then to let her know and she would get it for me. She told me that she had been in the room for three weeks, and hence she knew how things worked in the hospital. My roommate also kept me amused. I had heard her having discussions with the doctors who told her that she was to continue to just drink water and liquids, and not to try eating solids yet. However, every day her sister would come to visit her, and I would hear rustling sounds from behind the curtain. A little peak around this curtain revealed them eating rice cakes!

Early that Monday evening a nurse came into our room to give me my new medication, something which I wasn’t prepared for.