I Dream Of Silence

It’s been a little while since I blogged about Tinnitus, seven months have passed since I wrote my last post I Dread The Quiet Of The Night. In October’s Cosmopolitan I get to talk about Tinnitus in an article called Just Be Quiet by Rosie Mullender (and I truly thank her writing about this). Today I met my new Doctor (not Capaldi), back on another NHS waiting list as I transfer to a hospital closer to where I now live. It seemed like time to blog about it again.

2013 is speeding past me in a blur, I can’t help but feel the older I get the quicker twelve months pass. Come November it will be two years with Tinnitus. I’d love to type that since I was diagnosed medical research has come on leaps and bounds but it seems stagnant. A woefully underfunded area and still little, at best conflicting, understanding around the condition. I am still as much in the dark as I was two years ago. But not alone in the dark, I am with my ever buzzing and ringing companion. Never completely in the silence.

But I am also very much not alone in my waking hours either. Since I started blogging about Tinnitus I have received emails from sufferers. A dear friend has also contracted it and we nudge one another to remember earplugs at gigs. Over dinner last week I chatted to my neighbour, a fellow sufferer. And you know, if there’s one little positive it’s having people to talk to about it that know exactly what it’s like. That you don’t need to try to reach for the words or comparisons. A look says it all between two people who know what it’s like to lie staring at the ceiling unblinking and frustrated. Honestly, unless you have experienced it I don’t think you can quite understand the levels of borderline insanity it can send you at times. I hope that you never do and wish none of us ever had.

Look after your ears beautiful music lovers.

A Happy Easter Glastonbury Mixtape

I never sleep well during a full moon. So if you add that to Tinnitus playing its wicked part in a lack of a peaceful nights sleep regardless of the lunar cycle, this week has been restless. At some point around 4am Wednesday morning I started trying to compile an Easter mixtape but all that kept popping into my head was songs from Jesus Christ Superstar and Blue’s All Rise (blame a catholic upbringing and drinking a lot of cider in a town that loved pop, tacky boy bands and R&B). Despite the fact that the mere mention of these songs runs the risk of creating unwanted earworms to anyone foolish enough to be reading I didn’t want to actually put you through hearing them.

Last night as I was sat sinking pints listening to my male colleagues talk golf and scrolling through my phone the Glastonbury line up was partly announced (I know there’s more to come because Thom Yorke in some guise wasn’t listed so I am still hopeful for John Grant and Yeah Yeah Yeahs in my wildest dreams). So instead of Easter this mixtape is based on those first knee jerk excitements as I glanced through the stages. I can smell the petrichor, sloe gin in hip flasks and the mud already.

You can play this on either YouTube or Spotify. Have a very merry Easter. ♥

1. Phoenix – Girlfriend
2. Tom Tom Club – Wordy Rappinghood
3. Solange – Losing You
4. Villagers – Becoming A Jackal
5. Foals – Milk & Black Spiders
6. The Rolling Stones -Ruby Tuesday
7. Devendra Banhart – Can’t Help But Smiling
8. Nick Cave & The Bad Seeds – Nobody’s Baby Now
9. Nas – The Message
10. The Horrors – Still Life
11. Vampire Weekend – Diane Young
12. Haim – Falling
13. Local Natives – Breakers
14. Rodriguez – Inner City Blues
15. Peace – Bloodshake

I Dread The Quiet Of The Night

As I was about to leave the house the other day Fleetwood Mac’s Man of the World came on the radio just as my hand hovered to turn my DAB off. It’s one of those songs that will always stop me in my tracks, the regret croaking out of Peter Green in an act of a heartfelt confession.

I have the added built-in feature of the crackle and static of listening to it as if it was on Vinyl, or an old wireless radio not quite tuned in, because I have Tinnitus. I don’t mean to romanticise it, making it sounds as if a medical condition that strikes 1 in 10 gives a vintage sound to your world because it doesn’t. It’s funny, typing out the words ‘medical condition’ because I think of it as more of an annoyance, something to suffer and endure. Ultimately something I have been learning to live with since November 2011.

Since contracting Tinnitus I’ve had frustrating experiences from GP’s. When I finally got to see an ENT (Ears, Nose and Throat) Doctor I patiently tried different forms of medication. From tipping my head back to administer a salt spray twice a day to getting down on all fours like a dog and pouring a solution that was uncomfortable and felt like it was eroding the skin inside my nose. The gentle, but firm, smack of a tuning fork over my head is a stark reminder that I should have known better. Actually I had never given much thought to looking after my hearing in the same way I’d floss regularly or go to the opticians.

I dread the quiet of night. Working and living in London I have the constant distraction of noise to help drown out the ever changing noises in my brain. The rattle of the tube carriages and the building site currently outside my office window mean I can sometimes tune out of it during the day. It’s hard to describe how the sounds I hear shifts sides, changes tone and pitch. That I’m convinced alcohol heightens it but can’t know for certain, that some days are better than others. On the terrible and unbearable nights I sleep little, in the morning I am bleary eyed, exhausted and prone to make mistakes (from grammatical errors to not paying enough attention when crossing the road). When the sound suddenly changes I have to ask others around me if they can hear a strange buzzing, I’m sometimes thrown by what’s in my brain and what’s reality. This inability to communicate something only I can hear is frustrating and, how I wish I meant this literally, I sometimes end up suffering in silence.

Next time that song comes on the radio, the one that stops you in your tracks because it brings a long-lost lover to memory, reminds you of a cherished friend long gone, makes you sigh, skip, cry or smile with every facial muscle, pause for a moment. Think what life would be like with that melody, specific lyric, cowbell or the plink of piano keys ruined by a constant sound cutting across it. Or how the lack of sleep or stress will affect your life, and perhaps your relationships. If I’ve scared you then that was my intention. If you are in a band, DJ, just love standing by the speakers in venues or you’re one of those annoying types on public transport that listens to your music so everyone else can hear please think about your ears for a moment. It’s my one life regret.

NB: I started writing this post last year. A recent article by Eddy Temple-Morris for Huffington Post and the fact that it’s Tinnitus Awareness Week made me revisit this with a determination to tell it like it is. You can read his article here

A Gentle Hum Of Hope

During the British Tinnitus Associations awareness week I blogged about my relatively new experience of being a Tinnitus sufferer. I mentioned that help and advice from the two doctors I had seen had been conflicting and vague. Through my own fault, but because of my experience with the doctors, I didn’t push to see a specialist ENT doctor. I felt there was no point, this was something I was stuck with so I had to simply find a way to live with it. That has proved impossible, I have wept tears of frustration, suffered severe lack of sleep, sulked and despaired over Tinnitus.

This morning I met with a brilliant ENT consultant and for the first time in six months I feel the gentle of hum of hope. It’s hard to describe Tinnitus, give sufficient words to something that effectively only happens in your head,  but he understood every bumbled answer I gave, even when I described how it shifts from ear to ear depending on what side I’m lying on in bed, like tipping a snow globe.

He explained how  sometimes Tinnitus can be a symptom and not the cause, the sole problem. He suspects, after much prodding, poking and tuning fork testing that a dysfunction in my Eustachian Tube is responsible. That idea, a faulty dysfunctional tube, is much more concrete to me than the constant buzz no one can hear.

So now I’ll have to tell people I have a Eustachian tube dysfunction which is causing my Tinnitus. That’s already a lot more information than I’ve been given prior to seeing a specialist and you know what they say about knowledge.

I now have to perform what looks like a faulty yoga pose twice a day while I stick nose drops up my hooter for two weeks. This is the helpful diagram I was given. If this doesn’t help then I’ll go back and we’ll look at other options.

 One thing that has astounded me over the past few months is how many people suffer from Tinnitus, and even more worrying is how many people feel that their doctors are not equipped to help. I have blogged about my experience today because I felt duty bound to urge people suffering to insist on ENT appointments, not to be brushed aside and told to “deal with it”. I haven’t blogged because I like typing Eustachian Tube.

Here’s to happy hearing. ♥

Follow me on Twitter here and The British Tinnitus Association here.

I Hear Clouds

Two months ago I started to hear a constant buzz in my ears, at times like the drone of bees, sometimes like a constant drill muffled, at others high-pitched like a dog whistle. Before heading to the GP I already suspected the diagnosis would be Tinnitus. On my first visit I was told it would disappear in a couple of weeks and to sleep with the radio on (as trouble sleeping was the thing most dragging me down). On my second visit a different Doctor told me the exact opposite. Not to sleep with the radio on, to remain hopeful as by this point I was left with Tinnitus in my right ear only, but to expect the long haul. On both visits I stumbled out onto the pavement thinking “How am I meant to cope with this exactly?” Advice had been vague and conflicting.

Trying to explain what suffering from Tinnitus is like has been challenging for me, you’re probably best listening to someone who has been afflicted with this for years. It’s not like pointing to a bad tooth and saying “this one hurts”, or expressing a chest infection by the accompanying coughs and wheezes, or showing an open wound and screaming “Argh! The Blood”. It’s invisible to all but you and your brain. In that respect it’s frustrating, makes you feel like you’re going mad at times and is extremely isolating.

Because of my patient partner wanting to try to understand what I am dealing with I started to read up and talk about it more instead of defiantly thinking this was something I had to deal with alone. Eddy Temple Morris, via Twitter, lead me to the British Tinnitus Association’s awareness week. They’re dedicating time to make sure people don’t have the same experience as me when they turn to their GP’s for advice and guidance. It’s also lead me to realise just how common Tinnitus is and how a ton of people still go to gigs, still play gigs in fact (Eddy Temple Morris, Jarvis Cocker) and certainly don’t let it alter an energetic, happy, full life. In other words “Don’t let the Tinnitus grind you down”. All those gigs I’ve been too and never thought to wear ear plugs before. If music plays a big part in your life you need to look after your “Lugholes” as my Dad would call them. If you suffer from Tinnitus please follow their brilliant efforts this week.

Lying in bed one night my other half said for a few moments he could hear strange noises in his head and tried to put himself in my shoes (or ear drums). He said it felt like the noise he’d expect to hear if he was in a cloud. That’s what I think to myself when I can’t sleep now, it’s oddly comforting. I can hear clouds.

An added playlist for you which you can play on Spotify ♥

1. The Dead Weather – I can’t hear you
2. Blondie – Fan Mail
3. The Buzzcocks – Moving Away From The Pulse Beat
4. Wire – Eardrum Buzz
5. Loop – Arc-Lite
6. Garbage – Push It
7. The (ear) Drums – Forever and ever amen
8. Jonathan Richman – Buzz Buzz Buzz
9. Groove Armada – Fall Silent
10. Depeche Mode – Enjoy The Silence

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