Frustration

The next few weeks after leaving the hospital, blended into months. I finished taking the corticosteroids and I had 4 injections of steroids into my ear, each a week apart. Yet there was still no improvement in my condition.

Friends and family were keen to ask me how I was feeling. They saw that I was out of hospital and assumed that everything was OK. But it wasn’t. I was struggling through every day with deafness and other related issues: sensitivity to noise, light-headedness, tinnitus and the ever-present pressure in my ear and head. I almost felt like I was letting people down; telling them that I was not feeling any better. I looked like my usual self, but was feeling awful. There was no visual evidence of the discomfort and frustration I was feeling. My problem was completely invisible. If I had a visible scar, maybe people would be able to empathize with my situation a little easier. I wanted to tell them something positive, and I didn’t want to upset anyone, by responding honestly. I didn’t feel any better. Nothing had changed since the day in the auditorium when this all began.

Everyone seemed to have a story about an ear problem. There were stories about ear infections and tinnitus, and about ears feeling clogged when flying. Many people also turned into specialists; asking me if I had recently been swimming or if I had been on an aeroplane? Did the hospital specialists check for ear wax? People didn’t really know what to say to me. I know that they wanted to sound positive, helpful, sympathetic…I did appreciate their support. People just wanted to show they were thinking of me. I would have done the same, if one of my friends or family were in my position. I would have wanted to help solve the mystery and for everything to be better. I didn’t want to sound negative, but I didn’t want to lie to people. Sometimes the truth is difficult to share, and it can also be difficult for others to hear; especially when they have feelings invested in the person sharing the news.

I couldn’t go to work. Being an Early Years teacher demands having energy; being able to tolerate high levels of noise, being able to go up and down stairs without feeling lightheaded, being able to hear in background noise, being able to sing and dance without feeling dizzy. The children in my class were only 4 years old. They needed a teacher who could give them the care and attention they deserved. I missed being in a classroom. I only briefly met my new class, who I instantly loved, and who I felt like I’d abandoned. It was so frustrating. I could walk and talk and breathe and see. I looked the same. But to be able to do my job properly I needed to feel better.

I was having meetings every two weeks with my doctor to inform her of any updates. She also seemed to be getting frustrated with the absence of any change in my situation. Every time I met with her I would tell her that I felt the same. One time she explained to me that it was difficult for her also. Usually she can give her patients some form of hope. Usually she can give her patients a diagnosis, or prescribe some medication, and then with time, symptoms will improve. Usually people show some form of recovery and this gives them hope. However, in my case there had been no change in 10, 11, 12 weeks, and she knew it was difficult for me. She told me to take comfort in the knowledge that my hearing loss wasn’t a result of a more sinister problem, such as stroke or a tumour.

There was still hope. 12 weeks after the day of my sudden hearing loss, I went to see a specialist at the hospital. He told me that sometimes hearing can come back spontaneously within the first 6 months after the occurrence of hearing loss. I was told to wait and see if my hearing would improve naturally. I would go back to see the specialist in 3 months, and if there were no changes in my condition, they said a hearing aid might help me.

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.

Hospital Food

In hospital, I was fed 4 times a day. The food was brought to each patient in a big grey rectangular tray made of thick plastic. On top of the tray, was a lid that fitted extra snugly, always proving difficult to remove. Taped to the lid was a small rectangle of paper with the patient’s name and the type of diet they were eating; vegetarian, bland etc. Underneath the name, was listed the contents of the tray. It became a ritual that before every meal time, I’d first read the label and imagine what the meal would look like, and then I’d unwedge the lid, moving it in small movements from side to side and lifting at the same time, until the contents were revealed. First there was breakfast, which was always bread, little packets of jam and butter, and a luke warm milky coffee that was served in a blue plastic cup with a lid which resembled a toddlers sippy cup. Next was lunch: usually something cooked such as a starter of Spanish vegetable puree, which is a thick green soup consisting of blended vegetables and stock, and often a generous amount of salt – this kind of soup was aptly renamed ‘Shrek soup’ by some of the children I used to teach a few years ago. This would be followed by a main course of something such as a deep fried portion of chicken with a small piece of salad. For dessert: something like be a prepacked plastic pot of flan – a wobbly and very yellow vanilla egg custard with a sickly caramel sauce. Around 5 pm the merienda would come. Merienda is the Spanish afternoon snack, and in hospital was usually identical to breakfast. On every meal tray was a small clear plastic packet with a bread roll inside. This bread looked like a tasty homemade treat, but was in fact the toughest bread I’d ever had the task of biting through. My first ever meal was the evening meal consisting of an omelette, a plate of square slices of sandwich ham with a ‘garnish’ of half a tomato, the ever-present bread roll and a desert of fruit puree that came in a small metallic foil pot with a peel off lid, and resembled baby food; that left a bad taste in my mouth.

Whilst in hospital I had a steady stream of messages from friends, colleagues and family, asking me how I was doing, and sending me their get well wishes. My best friend came to visit me on my first day. She appeared by my bedside, looking slightly alarmed at the environment she had walked into, but she hugged me, and made me smile with stories and her gifts of chocolates, magazines and a colouring book. I felt so lucky to have such a lovely friend. The head teacher from the school I work at, visited the next day, bringing another collection of stories and bag of treats; this time blueberries, raspberries and chocolates. Before my time in hospital, I had been somewhat unaware of the support I had in this country that I had called home for just over two years.  It was only when I found myself in this vulnerable position that I realized that there are people in my life here in Spain who are keen to offer their help, and I was inexpressibly comforted to know I was in their thoughts.

In the first few days of my time in hospital there had been no change in my hearing. I couldn’t hear anything in my left ear and there was still a lot of pressure in my ear and in my head. Loud noises were uncomfortable for my ‘good’ ear, and tinnitus sounds were incessantly swishing around my deaf ear, accompanied by the occasional screeching noise. In addition to all of this I was now exhausted from lack of sleep and the intensive drug treatment I was receiving, and I had begun to feel like things weren’t going to get any better.