My Brain Pain

My names Nicola but I introduce myself as Nic, I’m 30 years old and a long time fighter against my own brain. I suffer from severe depression and bipolar, diagnosed over 10 years ago. It’s  led me to attempt suicide many times, more times than I can count, but I’m proud to say I’m still here. 

I battled self harm for years but I won that fight, I’ve attempted suicide more times than I can count but my body is so much stronger than I gave it credit for, I’ve tried ECT treatment and had many hospital admissions over the years. 

But unfortunately In May 2013 I thought it was time to end my brain pain for good. I honestly thought I was a burden to everyone who knew me, I was so very wrong. I spent 10 days on life support in ICU. 10 long days for my Mum who spent every day at the end of my bed. 

Luck wasn’t entirely on my side as the endotracheal tube severely damaged my airway and vocal cords. A tube that’s meant to save you caused me irreversible damage. After many ED visits, ambulances, mica paramedics and near death experiences i was finally diagnosed with tracheal stenosis after a  ENT doctor put a camera up my nose and down my throat which revealed narrowing. My complex diagnosis is called Posterior glottic stenosis with bilateral vocal cord fixation and arytenoid ankylosis. In simple terms my vocal cords do not work, they are fixed shut and do not open for me to breathe.

I've endured 37 anaesthetics/operations. 10 being major surgeries to try fix the damage but all have been unsuccessful. I had a brief two week stint with a feeding tube as I lost my ability to swallow after one of the major operations but it thankfully resolved after a few weeks because the scar tissue re formed, not what I wanted but at least I regained my swallow. 

During one of my major operations my surgeon lost my airway and a tracheostomy was put in to save my life. My trach didn’t get removed and is now permanent. I've had my trach for over 4 years now. I was told nothing more can be done for me as my type of injury is extremely rare therefore advances in treatment in the last 30 years has only been the use of laser.

Living with a tracheostomy isn't easy. To put it into perspective I solely breathe through my tracheostomy tube which is a size 8, 10.0mm wide without my inner cannula in and only 6.8mm wide with inner. In comparison the average size of a male airway is 25-27mm and women 21.23mm.

My trach is a direct line into my lungs, I bypass all that good filtering the nose does to prevent nasty stuff entering the body. I suffer frequent chest infections which can result in a trip to hospital for IV antibiotics. Chest infections for me can escalate quickly if not treated ASAP, it gets scary. A compromised airway plus an infection can become life threatening. Towards the end of last year I suffered 2 simple infections, simple for people with a natural airway but it unfortunately left me on a ventilator in ICU. 

Over the years not being able to breathe, lying in a hospital bed or at home I gained weight. Walking down the hallway in my home would leave me gasping for air but I decided in October of 2017 to get “me” back as pre all of this I was a representative netball, basketball and VWFL player. Sport was my life and my future. 

My starting weight was 93kg. I had a personal trainer come to my house once a week for an hour over 2 months. I found getting back into the groove easy because of my fitness past and love for exercise. I would plan my own gym circuits and I found a way to push my body past not getting enough oxygen because I knew I had a safe airway in my tube. It sort of became an addiction and a thrill to see what my body could do despite my breathing limitations. I found my physical strength again and found my key to happiness. 

My Favourite Quote

My Favourite Quote

I was told by many doctors and surgeons I would never run again, never say never especially to me. The mind is very powerful, mind over matter is the key. I built my strength back up and within 2 months of exercising I asked my PT if we could go for a run. My first time back running I was able to complete 5x100m runs up a slight incline. I was crying happy tears. I proved the doctors wrong and proved to myself I can do anything if I put my mind to it. 

Fast forward a year and today I weigh 52kg but unfortunately my health has taken a turn for the worse. The last 15kg lost has been unintentional. I’ve gone from a healthy fit young sports women to losing my airway and my fitness, to gaining back my fitness and strength to now have my body decide enough is enough at 30 years of age. To be the healthiest I’ve ever been, healthy food, no alcohol and to have my body decide now it wants to give up?! It leaves me with crazy emotions and feelings, to try so hard to leave this world due to my excruciating brain pain to finally getting on top of things to now have the outcome completely out of my hands, it’s heartbreaking. 

My future is unknown and unpredictable, all it takes is a bad pneumonia and that could be it but I’m strong and I will never go down without a fight. Everything I’ve been through has given me this inner strength like no other, I’m strong mentally and internally because of these experiences. The last few years have changed me for the better despite my declining physical health. I’m proud of my achievements, determination and will to keep fighting even after hitting rock bottom over and over. 

I’ve found my heart and soul has changed because of my battles, I’m very sensitive, feel more emotion and can empathise with others fighting their own battles. No one deserves any kind of pain whether it be mental or a physical illness or disability. 

Still to this very day I morn the loss of my airway. The simple changes trach life brings reminds me everyday what I’ve lost. Having to cough mucus out my neck to clear my lungs, to cleaning my inner cannula over and over, to always wearing a trach tie around my neck, the list of changes go on and on. But it is what it is, I can’t turn back the clock and change what happened to me, I wish it didn’t happen yes by gosh I do but I’m trying my best in a shitty situation. 

From then to Now.

From then to Now.

I’ve been told I rock my tracheostomy very well, probably because I get fancy patterned and coloured tracheostomy ties made from a friend over in America. I can’t stand the plain white hospital ones so as soon as I knew a tracheostomy was possible I was onto Google searching for cool trach ties ;-) 

Breathing should come easy, something no one really thinks about. I think about my breathing all the time. It’s tiring and draining but I’m still here fighting the good fight. 

A few years ago I started my own personal Facebook blog to give the world a real life perspective of living with a mental illness and disability. I don’t sugarcoat anything, it’s me being real and raw but I make sure that’s understood so I don’t upset or trigger anyone. “Nicola’s fight, tracheostomy patient, tracheal stenosis and mental illness” is my page to vent as I’ve lost most of my friends through being sick. 

My days are lonely, I live at home with my parents as I’m too sick right now from my other physical heath battles, I speak to Facebook friends on chat but that’s about it. It’s a hard fight getting through life and remaining positive when your alone and sick. But home is in the country so fresh air, nature and open space is heaven for me. Plus I have my 2 beautiful kelpie dogs who have saved my life. 

My dream was to be able to share my story with the world somehow but unfortunately I don’t think I can make that happen with my declining health. But that’s ok, I have just over 600 people following my Facebook blog from around the world and to get msgs that I help means so much to me. 

I live my life day to day because today I could be feeling semi ok, but come tomorrow and it’s a whole different story. I just hope I get the chance to start my life soon, I have plans, I want my life, but my body seems to have other ideas right now.

I’ve realised life is not a race, things happen in people’s lives that are out of their control, you can’t compare yourself to others. This is the path I’m on, this is my journey in life I’m taking,  it’s not ideal but it is what it is. There is no right or wrong way to live your life, circumstances out of my control have set me on a completely different path to what I imagined as a kid, but that’s ok. 

Life is a crazy roller coaster with many twists and turns, I have to keep reminding myself that I will be okay, slow and steady is how I will win my race. 

I’m a “limited edition tracheostomy queen” taking it one day at a time!