Let me ask you bluntly.
Do you own an uninhabited island somewhere on the west coast of Ireland?
I am in dire need of a decibel-free environment, and the only thing that’ll satisfy me are sounds of nature.
That, dear friends, has lately been my frame of mind as there are one too many entities living within the confounds of my physical body. As per usual, MS is taking up a lot of storage space and I need to get rid of what doesn’t belong inside me.
Today’s vernacular sounds like this, “Hey you sucker, there’s only room for one of us here!” The discourse too sarcastic for words, but felt too strong to ignore it.
Yes, MS’s hubris translates into being a bloody chronic thing that only has one truth: you’ll have an awfully long time to get used to an illness that has a mind of its own. It’ll show up when it feels like it; it also decides – on its own – how bad a guest it’ll be and in the end, it’ll quite cheerfully decide that in fact, you are a great host, so MS will stay.
For example, several times over the past two weeks I’ve experienced intense noise intolerance called hyperacusis. In a split second, I became nauseous with environmental sounds like music, TV or people talking and if or when my stars were misaligned, it sent shooting pain travelled through my left eye, ear and the side of my face when hearing sudden, sharp sounds. You could be forgiven thinking that the latter has been attributed to trigeminal neuralgia also, which means it was hard pinpointing which one deserved the credit.
Hyperacusis and MS can be explained as such:
- Multiple sclerosis is a demyelinating disease which strips away the protective coating on nerve cells (known as the myelin sheath). This not only causes the nerves to function abnormally, but it also leads to scarring and progressive development of lesions on the brain and/or spinal cord. Hyperacusis is caused when lesions form on specific parts of the brain, namely the brain stem which regulates hearing and balance
- Cochlear hyperacusis, affecting the cochlea and the auditory nerves controlling hearing and sound amplification, causing pain in the ear, intolerance, frustration etc to everyday sounds
- Vestibular hyperacusis, affecting the inner ear and the nerves associated with balance, causes feelings of nausea, dizziness, and imbalance when particular sounds are present
- Both types of hyperacusis can cause anxiety, stress, depression, social isolation, and phonophobia (a fear of normal sounds).
Since seeing ‘A Star is Born’ in the cinema, the songs have been on repeat in Spotify. Sadly though, I’ve hardly been able to listen to the full album because nausea set in and I needed to rush to turn off the music. I felt like tossing Bradley Cooper across the living room, but that would only have contributed to more noise and having to pay for a new phone so perhaps its impact is best described like this:
If sound intolerance were a 2005 Marks & Spencer food porn ad, people would refer to it like this: “This is not just sensitivity, this is a hyperacusis noise sensitivity.”
I hear you think, “So, why even go to the cinema if or when it is that bad?”
One word: PASS.
Preparation: sunglasses at the ready in case eye pain shows up, and earplugs to dampen the noise enough so I can still hear what is being said.
Adaptation: If I never prepared, I’d be sitting at home every day counting the bits of glitter on my black nail polish on my fingers. Therefore, adapting to circumstances has become a skill set of its own, as I once wrote on Living Like You.
Socialisation Skills: Being home every single day makes you lose vital mammal-like humanisation/social skills, so this chicken needs to get out every now and then.
But, going back to the beginning, noise intolerance often lives in the shadow of tinnitus as an MS symptom and seems to be two sides of the same coin. And, its impact is far more significant on my wellbeing than the normal buzzing and beeping sounds in my ears. Unfortunately, like trigeminal neuralgia, its dismantling effect is most effectively handled by locking myself indoors.
Avoidance behaviour has become an all too regular experience this year. This morning, a sudden activation of an alarm system in my local shopping centre sent my mindset into an anxiety-fuelled dash through the shops, skipping the main reason why I needed to be there, to begin with. Add crying babies – in my view obnoxiously screaming tiny creatures with better vocal cords than Bono – and I can outrun Usain Bolt any day.
Living in hiding because of specific symptoms can create the illusion that you are dependent on others, as much as you try to hide this. Like I mentioned recently in reply to one of my friends’ posts on the MS Ireland blog, nobody wants to be dependent on anything or anyone as it is human nature to want to live, love and fight for what we deserve. Slowly learning we are not who we once used to be can leave traces of resentment, even anger.
Had I still been employed when hyperacusis first arrived, I would’ve been forced to walk away from a job I loved far sooner. As an Incident Coordinator, I had to liaise with management and team members on how to address specific issues that arose between technical members of my team, online clients and onsite professional teams abroad. The office was always a noisy cauldron: lots of talking and even more tapping on keyboards that would have driven me mad.
When I look back on the past fourteen years with MS, it’s been a learning curve that resembles driving along country roads in Ireland: lots of ups and downs, falling and jumping out of potholes leading to a gigantic pain in the
I cannot remember when I first felt nauseous because of sounds – I can look back as far as a concert in Dublin where I was standing metres from the stage. The continually moving light show brought on vertigo and eventually, I fainted and had to be lifted out. Trigeminal neuralgia was diagnosed at the same time as my MS so sensitivity could have been hyperacusis at the time. Up till then, however, I had never heard of noise intolerance associated with MS.
No matter when and where it happened, it is beginning to annoy me more as music has always played a big part in my life. My Nana loved my Cabaret impressions, and she sang and danced to anything from classical music to Édith Piaf. My uncle was a well-known jazz critic while my late brother played the bass guitar, and I sang in an operetta/musical choir in my teens. Life without music used to be a life not worth living, but now, noise intolerance is doing its utmost to mess up its influence.
But, it is what it is.
As long as I can see a ballet being danced to the sound of the Die Schonen Blauen Donau by the Viena Philharmonic on New Year’s Day and hear the Cranberries’ Zombie, Radiohead’s Creep and so many of my other favourite songs, I need to be OK with my hearing being what it is right now.
It will require mental and emotional strength when I begin to deceive myself about a substantial increase in noise intolerance. I will need to admit defeat and look for alternative ways of experiencing music.
Since retiring a decade ago, I have learned to spin MS in my advantage – perhaps having more symptoms needed to appear in order to gain more wisdom by now proactively looking after my health, and therefore a future me. Life isn’t about lost causes or defeated wars, it’s about the lessons these have taught you.
As long as a cure for MS is not on the cards yet, it will be you, and MS in your interpersonal relationship with your illness. I’ve come across symptoms related and unrelated to multiple sclerosis and had to accept my new normals. Each time I say, “Frankly my dear, I don’t give a damn about what I or anybody else thinks of my illness.”
While others may look at you as “damaged”, “not worth the investment” or “just not interesting enough to bother,” say to yourself that you still are.
Go on, just tell yourself you are and repeat again when you wake up every morning, noise or no noise.
How Noise Sensitivity May Be a Sign of Multiple Sclerosis – Verywell.com
What is hyperacusis? – The Hyperacusis Network
Symptoms, diagnosis, treatment – Hear.com
Hyperacusis and other forms of reduced sound tolerance (PDF) – British Tinnitus Association (Most computers will open PDF documents automatically, but you may need to download Adobe Acrobat Reader: https://get.adobe.com/uk/reader/)