Dizzy Dollies

When I was a child, I used to play a game with my sister, called Dizzy Dollies. I don’t know if this was an actual game, or just something my mum thought up as a way of keeping us occupied. The game involved spinning around, usually on grass, with arms outstretched like birds. We’d spin; our arms feeling light from the rotational force, until the dizziness became too much for our brains and bodies to compete with, and we’d fall down with a joyful thud of giggles.

Since my hearing loss, that feeling of dizziness a few moments before falling is always with me; following me around like an unwanted shadow. I now have a sense of dizzy instability, much stronger and more frequent than before my recent vertigo attack. When I’m walking around my apartment, I feel OK. My brain is accustomed to navigating my body around the small enclosed space. However, when I go outside, my stabilisers are removed and my vulnerability is exposed to the vastness of my surroundings. The movement of people on the streets and the cars on the busy roads cause a rapid development of confusion in my balance, and in turn my ability to steer my body with composure is put to the test. When I’m in a crowd, or if I turn around and see someone standing close to me, I immediately feel off balance and the Dizzy Dolly feeling hits again. Every three or four steps I feel a heaviness building inside my head combining with the ever-present pressure in my ears. This weight causes a sensation of my head being forced downwards; a feeling that quickly spreads through my body. My legs become heavy, and the floor seems to lurch towards me. I am constantly trying to find my balance. Sometimes I feel nauseated. Other times I need to sit down to regain my balance. I feel dizzy if I look around too much or too quickly. Certain types of lighting also seem to affect my steadiness, especially in supermarkets or department stores. I’ve noticed some difficulty focusing my eyes now. Sometimes when I try to concentrate my sight on a small area, my focus drifts away and I have to keep forcing it back. I don’t feel comfortable walking close to people with walking sticks, pushchairs, prams, and small dogs, in the worry that I will lose my balance and fall on them.

For the past month the only advice I have been given is to rest. And I have rested. Yet, if anything, the feeling of dizziness when I am outside seems to be worse than ever. It occurred to me that maybe resting could now hindering my progress.

Whilst searching on the internet for practical advice, I came across a blog entitled ‘Life with Sudden Sensorineural Hearing Loss’. It was written by a girl named Dana, who had experienced sudden hearing loss in the summer of 2007. In her post ‘Be Active’ Dana describes her return to college after losing the hearing in her left ear. She writes about the challenge of her ‘roller coaster’ bus commute, and the instability she felt when riding the escalator:

‘I made my way to the escalator, gripped the railing firmly, and focus my eyes on my feet to prevent losing my orientation on the long descent to the metro platformThe movement, the echoy noises in the metro, and a constant sense of chaos.’

These experiences were incredibly similar to mine. I felt some comfort in knowing that someone else had also undergone these challenges when traveling on public transport, following a hearing loss. Dana explains how her daily commute became easier during the successive months. Then over Christmas she worked from home, and didn’t have to worry about her hearing and balance. When she returned to her classes in the New Year, she comments again on her commute:

 ‘The bus ride to the metro was just as terrifying as it has been my first week in September. All progress that I’d made on my balance was lost.’

Dana consulted with an audiologist who carried out extensive tests of her hearing, eyes and balance. She also listened to Dana’s story about how her balance had improved during the autumn, and after asking follow-up questions the audiologist gave her a simple instruction:

“You’re healthy but your balance is off. From here on out you need to retrain your brain constantly where your new balance is. And to do that, you must simply stay active. That’s your prescription – to stay active.”

Dana summarizes that ‘During my several sedentary weeks in December, my brain had completely forgotten all of the lessons I had taught it.’   

Maybe this is what has happened to me. I have been told to rest, and resting has enabled me to feel stable in the small surroundings of my apartment. But by resting every day, and spending a lot of time indoors, my brain hasn’t needed to work to constantly recalibrate my balance. Perhaps I need to retrain my brain to manage my stability in more challenging situations. Maybe I need to become accustomed to being outside again; to feel more confident traveling on the Metro, riding escalators, and walking on busy streets. Maybe the best thing I can do to help shake this Dizzy Dolly feeling is to ‘stay active’.

In the lack of any better suggestions, this is the prescription I am choosing to fill. I have had enough of resting. I am an active person. I enjoy walking and running, and being outside. I have rested enough. This condition is unpredictable, and I can’t spend my days waiting to feel better. I certainly don’t want to be always waiting for the next vertigo attack. I need to focus on continuing with my life as best as possible. I will endeavour to ‘stay active’ and attempt to lose this unwelcome shadow of dizziness.

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Attack

It was a Monday morning and I awoke to the sound of my alarm. I had been sleeping well at night-time, for the past month or so, yet continued to wake up feeling drained. I was exhausted. I began to make my way through my morning routine, without the need to think about my actions. I methodically put the kettle on; took two mugs out of the cupboard (one for me and one for my boyfriend) and dropped tea bags into them; took out my water bottle from the fridge; and put a green tea bag into my flask, ready for work. I then headed to the bathroom to continue my habitual preparations for the day ahead.

Whilst in the shower, for a few moments I appreciated the feeling of the water on my head and body; washing away some of my sleepiness. Just as always, I began to cycle through the components of the advancing day in my mind; pondering over tasks to be completed during this time. And then it happened. Without warning, my eye-sight became blurry. I started to feel hot. Within seconds my surroundings inside the shower cubicle were spinning. I felt an uneasy disconnection from my body, similar to the feeling of unsteadiness that comes from drinking an excessive amount of alcohol. I could feel myself becoming short of breath. My ears were full with the feeling of pressure; causing a sharp pain. My legs started to feel weak, and I rapidly pushed my hands flat against the shower cubicle as I supported the weight of my body down towards the tray; moving into a crouching position. I needed air. I awkwardly forced the shower screen open. Then the nausea hit me; one last blow from the attack. I crawled to the toilet and allowed my head to bow heavily over the bowl. On my knees, my elbows pressed against the hard plastic of the toilet seat, I shakily positioned my arms upwards; enabling my hands to cradle my head in position. I stared wearily at the toilet water as it seemed to whirl around erratically.

After what I guess was about five minutes of extreme body weakness and breathing deeply into the toilet bowl to stabilize myself, I managed to crawl across the floor to where I had earlier dropped my night clothes. I was able to dress myself in my vest top and shorts and I slowly grasped the bathroom door handle; carefully testing the strength in my legs as I started to stand up. I began to walk the 15 or so steps towards the sofa. I was still feeling fragile. My body felt like it was in a continuous fall against the wall which I leant on with all my weight; shuffling through the kitchen into the living room.

I sat on the sofa and stared at my mobile phone. I couldn’t focus properly. I didn’t want to have to make the phone call. I didn’t want to have to call in sick again. I had only been back at work for a month since the summer holidays, and had already taken 2 days absence due to illness. I started to consider whether I could go to work. Could I cope with the motion and the crowdedness of the Metro train? Would I be able to walk up and down the stairs at school? Could I tolerate the classroom noise? Of course I couldn’t.

After making the call, I made my way to the bedroom, continuing to support myself with my hands against the wall. My boyfriend was still sleeping, as I slowly and carefully pulled my body onto the mattress and wrapped myself in the covers. I was cold. My boyfriend’s hand began to touch my hair, as if examining it with confusion; somewhere in the midst of sleep. I realized my hair was wet. I didn’t know whether I had finished washing it before the attack had happened. I didn’t wake my boyfriend. His alarm would be going off soon.

I spent the day on the sofa and slept away the hours. The reality of what had happened didn’t really occur to me until I woke up later that day.

Even though I often experience dizziness, I hadn’t had an actual vertigo attack since the day of my hearing loss; two years ago. This new attack brought the difficult times I had dealt with during the past two years, to the forefront of my mind. In the past, I’d been given numerous possible diagnoses to explain my hearing loss: Meniere’s Disease, Cochlear Hydrops, and Endolymphatic hydrops. Irrespective of the ultimate diagnosis, there was no escaping from the ramification of the abnormal fluctuation of fluid in my inner ear. Like a big slap in my face, this new attack forced me to comprehend the reality of my situation. I was never going to be able to get away from this. It wasn’t going to get any better. I was, in this moment of contemplation, emotionally back to where I was 2 years ago: scared at the prospect of living with this unpredictable condition.

“You really need to learn how to lip read.”

I walked into a busy classroom and the teacher motioned for me to go over to where they were sitting. As I approached, they proceeded to whisper a remark about a child in their class. The whispering took place behind their hand. When they realised I hadn’t heard them, they removed their hand from their face and repeated the whispered remark; making over-pronounced shapes with their lips. The classroom was noisy, and I had no idea of context to help me in decoding what my colleague had said to me. They began to chuckle. I feigned an amused-sounding laugh; assuming this was an offhand statement which required no verbal response, and that a laugh in concurrence would suffice. Yet my reaction failed in convincing the teacher of my comprehension. The comment which followed was not about a child, but instead was directed at me. My colleague was obviously irritated at my inability to hear them, and the comment was made in response to this annoyance. It was conveyed with intense clarity. Each word was enunciated in a loud voice: “You really need to learn how to lip read.” I heard it perfectly. I left the room without a verbal response.

A couple of days later, again I went in to the same classroom and again my colleague signalled for me to go over to where they were sitting. They proceeded again to whisper a remark about a child in their class. I didn’t hear them, and again the same words were spoken: “You really need to learn how to lip read.” This time however, the comment was made twice. Both times I was unresponsive. Although I hadn’t heard them clearly the first time, I knew what had been said, though I wasn’t able to voice a response. I stared, aghast, at my colleague as they reiterated themselves, looking at me with a mixed expression of irritation shifting towards smugness; smirking at their own wit. How could they think this was appropriate, even funny?

I am accustomed to letting go of frustrating moments. I can shrug off aggravated looks from strangers when I fail to move out of their way in the supermarket, or when I don’t respond to them when they address me on my deaf side. I have learnt not to concern myself with raised annoyed voices, and irritated repetition of words. I even try to find retrospective humour in times of mishearing. I was surprised at my reaction to my colleague’s comment. My usual response of smiling to create a barrier; in protecting myself from such remarks was, for that moment, deactivated. My openness in talking about my hearing loss and explaining how it can make communication difficult, especially in noisy environments, was momentarily paused. After receiving the comment I felt vulnerable, weak, confidence drained. This colleague was someone who had asked me questions about my hearing loss and had shown interest in learning about my tinnitus. I thought they had some understanding. I failed to form a verbal response because I was in shock. I was upset. I was disappointed.

I have since had time to contemplate the interaction and have structured a response for any similar situation in the future. I should have said to my colleague that while I’m sure it wasn’t their intention, that their comment hurt me. I should have told them that I understand it can be frustrating for people to have to repeat themselves, and that this frustration may be elevated when they are busy. I would like my colleague to know that I am beginning to find myself watching lips during conversation, in situations where there is a lot of background noise, or when someone has a strong accent. I am using the shapes and movements of lips to help me translate the jumbled sounds into some meaning. I should have also told them that they had a valid point – although it could have been conveyed with some compassion or during a confidential moment. I should learn how to lip read. Not because my colleague thinks so, but because it seems like the natural next step for me in developing my communication skills.

In future I would like to give some information to my colleagues about lip reading. I would like to suggest ways of helping someone who is trying to read lips. Just because someone has experienced a hearing loss it doesn’t mean, by some kind of transferred skill, that they are instantly able to lip read with ease. These skills take time, practise and patience. I would like to explain that background noise and lack of context can make lip reading extremely difficult. That reading someone’s lips whilst they are speaking behind their hand is impossible, and that over-pronounced lip shapes are not helpful for the reader.

This experience has drawn my attention to the lack of understanding my colleagues may still have of my situation. Despite having explained some of the communication difficulties I face, I know it is easy for people to forget. I don’t look any different to how I did before my hearing loss. I am thankful for the people who ask questions, who listen, and who try to have some comprehension of my condition. Yet some people may not feel comfortable to ask questions. If I don’t explain how this type of comment can make me feel, then how are people going to know what an upsetting impact such a comment may have? Next time I will explain. Now I feel ready to respond to any similar remarks in a strong and positive manner, as the hearing loss advocate I am learning to become.

‘Top 50 Deaf Blogs’ Award!

Dear readers,

I recently received an Email from Anuj Agarwal, the Founder of Feedspot, informing me that my blog has been selected as one of the Top 50 Deaf Blogs on the web! This is the most comprehensive list of the best Deaf blogs on the internet.

I am extremely happy to have been included in this list, as this is where I found many of the deaf blogs which helped me so much when I first experienced my hearing loss, and which I still follow today.

I am currently ranking number 35! Please click here to see the complete list.

Thank you to my readers for your continued support, likes, and comments.

Carly

 

“I know a song that’ll get on your nerves, get on your nerves, get on your nerves…”

Have you ever had a song stuck in your head? – An unwanted earworm that keeps playing over and over? A catchy piece of music that continually repeats through your mind, long after it has finished playing? This is similar to how I would describe my tinnitus. But instead of the notion of the song, there is actual ‘noise’, and the music never stops playing. There is no end to the record.

Tinnitus is defined as the perception of noise or ringing in the ears or head. The noise is not from an external source, and can manifest itself in many forms. The varying sounds have been described as whistling, whirring, clicking, screeching, hissing, ringing, buzzing, pulsing, whooshing, or even musical. Tinnitus is a symptom of an underlying condition such as hearing loss, ear injury or circulation problems. From the moment I lost the hearing in my left ear, I simultaneously gained these unwanted sounds. My life became noisier.

My tinnitus feeds off salt and sugar, caffeine and alcohol, and feasts on a lack of sleep. Exposure to loud noise makes my tinnitus worse; giving it energy, enabling it to accelerate or become louder, and more prominent. Sometimes it is so loud that it is difficult to hear or concentrate on ‘real’ sounds. Sometimes it steals my attention from conversation. My tinnitus seems to be related to the pressure I feel in my ears and head. Louder or faster tinnitus means more pressure, sometimes culminating in a pain that feels like the inside of my ear is being stretched to full capacity; to the point of something bursting.

For some people their tinnitus comes and goes, and for others it is constant, chronic and persistent. Mine is ever-present. It will often fade into the background of my days; everyday noises will usually mask it, forcing it away from my attention. Yet, there is the cruelty of finding a peaceful moment, or going for a walk in the countryside, and realizing the tinnitus has no ‘real’ background noise to overcome. It bounds into the foreground, onto the stage for full attention.

At night-time there are no ‘real’ sounds to mask it. At night-time it loves the limelight; gobbling it up with glee. The more I focus on it, the more layers of noise I discover. The foundation layer is the sensation of being underwater. I am under the sea, swimming deeper and deeper; water whooshing past my ears. With more focus, electronic-sounding agonized moans begin to emerge. A violin enters the stage; playing a continuous high-pitched and out of tune note that wavers painfully up and down in tone. The sound of an old metal kettle materializes, boiling with the shrill continuous whistle; demanding to be taken off the heat. Occasionally there is a piercing spark of noise; like the sound you’d expect your finger to make if you were turning something magically to ice. Sometimes the moans sound like melancholy singing. A penetrating fog horn begins to sound. A burst of crackling radio static joins the chorus, as the knob of an analogue radio is turned; seeking out a resonating frequency and occasionally skipping past the notion of a word or a piece of music.  I make pictures with my mind. I form images around the sounds. The more I focus, the more elaborate the scenes become. Wailing prisoners bound and shackled, all in a row, somewhere in the distance. Someone is trying to scream, but is not able to make the desired sound, just a sharp continuous squeal. There is someone drying their hair in another room…

… When I stop feeding it my attention, it’s back to swimming underwater.

My tinnitus is like being in an argument I don’t want to be part of. I am engaged in a duel I didn’t sign up for. At times it can be a torture. I am always fighting. I stay busy. I take my mind off it. I surround myself with everyday sounds.

I find myself observing people on the street, on the Metro, in bars, restaurants and parks. I wonder whether they too have these unwanted noises. Are they too trying to ignore the record that won’t stop playing?

I choose to ignore my tinnitus with as little effort as possible. Since the more effort used, the more attention it receives, and then it starts to win the battle. It’s a paradox I must fight. I wish for the noises to stop. I dream of relishing a quiet moment, but I can’t remember silence.

Stranger Things: My Septoplasty Story – Part 3

At 8am the night-shift nurses said their goodbyes to me, and new staff started to enter the room.  An hour or so later I was given some antibacterial hand gel to clean my hands, and was presented with a yogurt, a clear jelly, a pack of plain biscuits, and some thick sweet fruit juice. I devoured it all. I paid only momentary notice to the difficulty I was having in swallowing food and eating, whilst only being able to breathe through my mouth. A doctor then promptly came to give me my medical notes and said I could go home. My boyfriend arrived and a nurse changed the bandage on my nose. This time the bandage was wrapped around, leaving a small opening, showing a glimpse of the tip of my nose. My boyfriend later commented that it looked like a beak and that I should paint it yellow. Soon I was sitting up in a chair, back in the first recovery room in which I’d been the night before, just before my operation. We were given my medical notes, a Ziploc bag with painkillers and antibiotics, and an appointment for the next day for me to have the packing removed from my nostrils.

The rest of the day I spent in exhausted fogginess. I lay on the sofa and dozed intermittently; happy to be home. My boyfriend bought groceries, made soup, and washed my hair; which made me feel a little better. My nose was extremely uncomfortable. It felt like the worst congestion I could imagine; like having a terrible cold, but not being able to blow your nose. As the day turned into evening I became increasingly uncomfortable. The congestion seemed to be spreading to my throat, and breathing was becoming more of an effort. My bandage was quickly turning red. I frequently had to clear my throat of bloody mucus, which was unceasingly replenishing in supply. By the end of the evening, whenever I attempted to swallow; little pink bubbles of mucus foamed in the small opening in my beak.

That night I slept. It wasn’t a restful sleep, more of an exhausted crash. I kept waking myself up with the loudest of snores; a consequence of my mouth breathing. On waking each time I realised my discomfort, and I made numerous trips to the bathroom to spit out more mucus. Then around 5am I woke in a panic, almost unable to breathe. I went to the bathroom with the feeling of something stuck in my throat. Whilst looking at my reflection in the mirror through tired eyes, I forced the muscles in my throat to contract and relax in order to remove the obstruction. Then it slowly appeared. I gently pulled on the offender; some gooey, mucus soaked gauze. It was like something from a horror film. I was just happy that the rest of the packing from my nose didn’t follow.

The next morning I had my appointment at the hospital. I walked into the consultation room, and was happy to see the initial doctor I had spoken with, when I had first lost my hearing. Today she spoke to me in Spanish.  She examined my throat for gauze, and then with a thin metal hook, she removed the packing from my nose. I had an immediate sense of relief. Oh my goodness, I was so much more comfortable. The specialist asked me to try to breathe through my nose. I had a few wonderful moments of clear airways. I was breathing through both nostrils! I felt a little lightheaded. Then rapidly the airways started to clog. The doctor carried out the usual nasal examinations; inserting the thin rigid tube with the light on the end, and then using the metal pliers-type tool to lift up the end of my nose and view my nostrils. She cleaned out my nose using a spray that stung slightly, and told me that the operation had gone well.

When I arrived home that day, I realized I could smell the soup from the night before. It hadn’t even occurred to me that I couldn’t smell anything the previous day. My nose freely dripped with blood all day. I resembled the character Eleven, from the television series Stranger Things, though I was unknowing of what magic I was performing during my nosebleeds.

It has now been 9 days since my septoplasty operation. I still have numbness in my top front teeth and on a small patch of my palate. The headache, stuffiness and pain from the congestion is lessening every day. My nose is still sore, and I am still very tired. A couple of days ago I discovered stitches on the left side of my septum, which I assume will dissolve or fall out over time. Every day I have to perform nasal irrigation to clean out my nose. This entails using a specially designed plastic bottle with a thin applicator spout with a plug on the end, which fits into the nose. I fill the bottle with water and add a salt solution, and then squeeze the bottle; allowing the water to travel through one nostril and then come out through the other. My right nostril is now clear. Although I am not yet able to breathe air in through my left nostril, due to the swelling and stitches, I have been able to breathe air out of this side of my nose; which I wasn’t previously able to do. This is already a positive result.

My next appointment at the hospital is in a couple of weeks, and I am in excited anticipation for the day when I am able to breathe with ease.

Waking up: My Septoplasty Story – Part 2

I awoke from a deep satisfying sleep with my first memory being a blurry vision of my boyfriend. Well, it was rather the shape of my boyfriend in a burgundy haze; the colour of the top he was wearing. I was moving past him in my bed. Bleary eyed, I blew him a kiss. He followed me into a recovery room. The room was brightly lit, and my eyes slowly started to focus. I excitedly told my boyfriend that I had been dreaming. I was so hungry and my throat was sore. I recollect eagerly telling the nurse that I was hungry and that although I didn’t eat meat or egg; that fish was okay. Maybe this was only a thought? My boyfriend told me later that he spent quite some time asking me whether I wanted to keep my mobile phone with me whilst staying in hospital overnight. I couldn’t make the decision. This scene is a confused dream rather than a memory to me. I saw the nurse gesturing with her arm and saying, “Adios”; requesting my boyfriend to leave. He gave me a kiss. He told me that my nose was bandaged, but that I looked okay.

Shortly, I was feeling more awake. There had been only one other patient in the room when I had arrived, and they had since been wheeled away. Now there was just me, in a space large enough for 5 more beds. There was a finger clip attached to my left index finger, which I believe measured the oxygen in my blood. Adhered to my chest in a seemingly random pattern, were circular stickers with electrodes to monitor my heart; these were attached to a machine situated behind my bed. Wrapped around my right arm was a blood pressure cuff which every hour, on the hour, inflated and took my readings. I was intravenously being administered, a steady supply of saline solution, antibiotics and painkillers. I was extremely well monitored.

There were numerous nurses that came to visit me and to check my vital signs. One of the nurses, evidently meaning well, spoke directly into my deaf ear; her lips pressed against it, with the intention of aiding my hearing. She must have been informed of my hearing loss beforehand, although evidently she hadn’t been briefed on which particular ear was affected. I didn’t have the energy or the emotional resolve to tell her that her efforts were being wasted on this ear. Later, after I guess a lack of adequate response on my part, she realised she was speaking into the wrong ear, and for the rest of the time she replicated her close-talking technique, into my hearing ear. I appreciated her committed determination to help me understand the proceedings. The dark green bed sheets were straightened by two other nurses, and within less than an hour of waking up I was happily straining my eyes to read a magazine. I didn’t want to go back to sleep yet. I already felt like I’d had a period of concentrated rest, albeit brief. I wanted to be conscious. I didn’t like the idea of being unaware of the activity around me.

I asked the close-talking nurse if I could go to the toilet; assuming she would hook my IV bottles onto the moveable pole, so I could wheel it behind me as I walked. Unfortunately, I was mistaken. The nurse collected something from a small cupboard and then returned to my bed with the object in question. It was a bedpan made of a thick paper material. She lifted up the dark green sheets and placed my paper throne in position and then walked away. Well, after a few minutes I concluded that there was no way my body was going to allow this to happen. Maybe it was a result of the anaesthetic. Maybe it was simply due to the fact that I hadn’t consumed any liquid all day. Or maybe, and most probably, it was because my body was in a state of stubborn shock. The toilet was only a few steps away from me bed – Why couldn’t I attempt to go there? I was lying down – Surely I couldn’t pee whilst lying down!? The nurse took the bedpan away after quite some time, without much comment.

That night was a restless one with merely fragments of disturbed sleep. My nose was packed with gauze-covered cotton, and there was a pad of gauze taped underneath my nostrils to soak up any blood. I also had gauze and tape wrapping around the outside of my nose. I could only breathe through my mouth. I was thirsty, yet I was only allowed a few sips of water that night, before the lights were turned down. I guess this, and the introduction of the paper throne, was part of the aftercare procedure for patients following anaesthesia. I had to sleep propped up at an angle to allow the warm trickle of blood from my nose to drain into the gauze. There was a clock on the wall to the left of me, and I lay watching the movement of the hands. I slept for what seemed like half an hour, yet after observing the clock, I realized only a couple of minutes had passed. Time was behaving strange. I guess this was a consequence of the anaesthetic, or the drugs I’d been given. There was a young male nurse who checked on me every hour during the night; each time making a note of my vitals. With each check he asked if I needed anything, and if I was okay. Between his checks I realized he was asleep in a chair around the corner from my bed. Early in the morning he asked me if I wanted to try and pee again. I agreed. I hoped this time I would allowed to use the facilities. But to no avail. He was soon sliding my paper throne into place. I waited and waited, urging my body to allow this unfamiliar process to happen. And then finally it did! The nurse seemed very happy with my achievement and exclaimed “Muy bien”! I had the impression that this had been a prerequisite task to be accomplished before my release. I breathed a befitting sigh of relief.