Imagine being told at age 15, the pain you have been suffering with for the past two years is not the ulcer you were incorrectly diagnosed with at age 13, but that you have a major condition called Kypho-Scoliosis. Your spine has a double curve, the top curve 65 degrees, the bottom 45 degrees. Your spine is also twisting or rotating, causing your body to contort into an unnatural shape, leaving you with a hump on your back, uneven hips, a limp as you walk and burning, shooting pain all throughout your body. Your spine is putting pressure on your heart and your lungs, making it difficult for you to breathe…that you will end up needing the help of oxygen tank to breathe near the end of your life, which by the way will most likely be in your mid 30’s by which time you will be in a wheelchair as your body will have twisted and contorted out of shape so much that you will be significantly shorter and unable to walk. Also there is no way you should attempt to have children as your spine wouldn’t cope and this would only put more pressure on it and bring you closer to being in a wheelchair. Oh and there is nothing you can do about it.
This is how my mother and I were told about my condition, as the x-ray before our eyes showed my spine looked like an S. We were left speechless by both which the heartless way this doctor gave my diagnosis and the bleak picture she painted of what my future now holds. There was no offer to send me to a specialist because as far as this doctor felt, there was no point. Needless to say that was the last time I saw this doctor.
Fifteen - I had not long been allowed to go to my first school disco, and a few parties with my girlfriends, experienced my first kiss. I was very athletic, and good at all sports often ending up going to district and some state finals. I had noticed I couldn’t quite get my rhythm and I was tripping a bit when I ran. I later found out that this was due to the uneven leg length caused by my condition.
I was an A student, and loved music, especially singing. I participated in the school plays each year, and dreamed of either being a famous singer or an Olympic athlete. More realistic I had hopes of going to university to study music, singing and piano and see where that led. I had been chosen to sing on a national television commercial and a few years later been singing on local radio jingles so my dreams didn’t seem too unrealistic at this stage.
I was never one to show my body, a gangly self -conscience teenager, and always had very long hair which I never wore up. This is why, until this day we had never noticed or thought to look at my spine. When we came home, we pulled out the X-rays to show my dad and three older brothers, everyone went silent. Mum lifted up my shirt at the back and couldn’t help but gasp at what she saw. My brothers had always teased me and said I was a hypochondriac for complaining of this strange pain I was suffering. Just looking for attention. They never teased me again.
So began my lifelong journey of unrelenting, never ending, 24 hours a day, 365 days a year of burning, shooting, aching, numbing, torturous pain. The lack of sleep alone nearly drove me insane. Then came the continual rounds of doctors, specialists, surgeries, hospitals, physiotherapy, massage therapists, psychologists and later to come pain medications. You see to start with as a teenager in the 1970’s it seems, pain relief was never an option for someone so young. Unless you had cancer or something close to it, no useful pain medication was offered, just Panadol to help ease my pain. As you can imagine Panadol did sweet F A.
The financial burden of having to be in a health fund as soon as I turned 18, pay the extra fees on top for of these therapists I would need to see for the rest of my life. Later to try and get training, a job I could keep, so much more. I was behind the eight ball in every way it seems for the rest of my life.
I tried to continue with my schooling but my amount of days off I was having saw my grades drop. By this time, I was in 5th form or year 11 and sweet 16. The best years of my life, the time of life learning, fun, boyfriends. I did have my first serious boyfriend and tried to keep up friendships and be involved, but it was so hard. I had tried to keep up with my schooling between days off from the pain and to visit various specialists to try and decide the best course of action for my Kypho-Scoliosis, but to no avail. I was always tired and down.
I had my whole life ahead of me, and a decision had to be made. I needed life changing surgery to keep me from the fate my first doctor had foretold. I needed to have my spine straightened, fused and Harrington rods inserted and it had to be done urgently as there was only a short window of time before my growth plates fused.
The process was archaic, involving first being stretched on a rack no wider than an ironing board for one week. They had to drill four holes into my scull to which they attached a metal halo, two holes on each side of my thighs pushing two bars straight through. This was called Halo-Femur Traction. I was locked into this bed, they called it a rota bed, because you had to be rotated from laying on your stomach to your back every four hours so you didn’t get bed sores. Each day they would hang a weight off the end of my head and my legs. This was to gradually stretch and straighten my spine, so as to when I had my next operation in a weeks’ time my spine didn’t go into shock and/or became a paraplegic or worse. One boy in my ward walked in but left in a wheelchair from the same operation.
After a week of this, they took me to theatre once more, removed the traction and began to insert the Harrington Rods. I was fused with bone grafted off my hip from T2-L2 and the rods fixated to my spine and ribs. I walked in five foot six and walked out five foot eight, they had straightened my spine by two inches or five centimetres through all this.
I still have nightmares about this whole hospital stay of a couple of months. Later in life to be told I suffer with PTSD. So, after this I never made it back to do year 12 as I was in a plaster cast from neck to bum for a year and a polyurethane jacket for six months. My boyfriend had dumped me during this whole journey. It was just before my 18th birthday I was allowed to not wear the jacket, but by this time I had lost contact with all my friends also and hence suffered extreme depression in silence and isolation for a few years.
Over the years, I have had some extremely wonderful healthcare professionals look after me who I will always be eternally grateful, but I also had some terrible experiences along the way. Some family, friends and work colleagues would doubt that I had anything wrong with me because nothing was immediately obvious to their eye. They would question, but you’ve had surgery, you are fixed now so don’t complain.
What I would like people to understand is I wasn’t fixed; I wasn’t out of pain and I was going to have deal with this pain every day for the rest of my life. I still had a curve, all be it lessoned by the surgery and my body will always try to twist and rotate. The pressure I feel in my body is like being in a vice and someone is tightening it every day, causing a new and different pain in all areas of my body at different times. I have no control over my pain, how intense it will be, when it will be more or less so. Later in life I will have more rods, bone grafts from my other hip and then donor bone, as they couldn’t take anymore from my body to do more fusion.
I’ve been bullied, belittled and sexually assaulted in the workplace. All of which I was told by the perpetrators that it was my fault. Because I was lazy, dumb, lucky to have a job because of my health issues so they could take advantage of me and fire me if I didn’t do as they wanted or if I told anyone. I kept trying to work, apart from the pain problem I became very scared to be alone in a workplace with another person for the reasons described above.
My early 20s I met my future husband, I advertised for musicians and started my own band as way to earn money. Music and singing became my lifelong passion, my lifeline to people. I regained a bit of a social life and friends through this. Although again, these friends would sometimes say, how come you can be up there singing and dancing around in your band if you are in so much pain. Questioned again on my truth, my integrity. They never saw me after the gigs, sore and in more pain sometimes barely able to move the next day! Depression has never been far away in my life. To always be thought of as an untruthful person, to be somehow trying to gain by my made up affliction was and still is very distressing to me.
The year before I married, I had my rods out as it was found I had a fractured lamina, and one of hooks was sticking into it. I had complained for five years to my surgeon about this, the fracture was blatantly obvious on all my follow-up x-rays. However, he refused to remove them, so I was in terrible pain all that time. It took well over a year after the rods were taken out for the fracture to heal. I couldn’t exercise much because of the pain and I was terrified I would do more damage, so I really became very unfit and scared to exercise.
I married at 22 and managed to give birth to two beautiful children a few years later. However, this did take a toll on my body and I shouldn’t of given birth naturally. I had a bulging disc on and off at my L5-S1, again the Obstetrician didn’t really think I’d have a problem, but if I did, he would have to put me under general anaesthetic to do a caesarean because of my Kypho-Scoliosis I couldn’t have an epidural. I had them naturally but it came with a lot of damage to my body.
My husband didn’t seem to want to help me with our children’s care so this didn’t help our marriage. He loved his children, but he felt I was a better mother than wife. He blamed my health issues for part of our marriage breakdown. I was still struggling with pain every day and my bulging disc worsened. I left my husband and moved into a house for a year and half, so we could work on our marriage. In the space of this year and half I was diagnosed with a bulging disc at L5-S1, Free Flow Reflux, IBS, Endometriosis and my weight had plummeted to 49 kilos. I was five foot eight, so this is anorexic. I had undiagnosed severe tears in my rectum, vaginal wall and sphincter muscle from giving birth. I was looking after my three and five-year-old, who I had traumatised by leaving their dad…guilt… a big part of chronic pain life.
The guilt of not being able to run around and play with my children like other parents could. Crying as I waived them goodbye as friends took them out for fun filled days, making memories with my children that I will never be a part of. My marriage ending was tough but the worst part of being in chronic pain 24/7 was letting my children have a life without me being involved. On many of my long agonising, sleepless nights I would think about what my life could have been, should have been. Just torture not only physically but mentally, if people only new the heartache and great sadness I felt over this.
One thing I would of liked all my health professionals to know during this time, is I AM NOT an hysterical single mother, who is purposely bulimic/vomiting, the pain isn’t in my head, everything is not just my back pain, take this tablet and go home. I found over the years some health professionals were quick to dismiss you as medication seeking, which I wasn’t, I wanted to know what this pain was that feels different to my normal pain. Yes, I do and can feel other and different pain in my body, that is not normal. Sad isn’t it that I have normal pain.
I have had many other illnesses over the years, I am 55. Some can be attributed to my Kypho-Scoliosis, but others most definitely cannot and others are a mystery as why I have had them. I would like doctors, family, friends to believe me first and foremost. Again, I have had doctors, family and friends believe me from day dot, and I thank God I have them. Compassion, kindness, empathy should be remembered when dealing with anyone. We all have something, just some things are not so obvious…and do they need to be, to be believed?
For me personally I need people to believe in me. I don’t feel my entire life anyone has ever been on my side, not questioning me, just loving me for me. My first husband told me I was burden to him, our children and my family, and that hurt. I loved my husband, and I really wanted to be what he needed me to be for him, but I wasn’t. So, I left him so he could find the woman I clearly wasn’t, I did want him to be happy. I wanted to be happy. That took 10 years of single life, single parenthood before I did.
It’s been extremely hard, but I was lucky I had those few close people in my life over the years to help get me and my kids through. Then I met my second husband and he understood how I felt. We have been together for almost eight years and married for almost five.
As a chronic pain sufferer, I wish I could have had easier access to health professionals, jobs, medication, family, friends, social activity. In these times we find ourselves in now with Covid-19, all these things have been made more readily available on-line, bulk billed, free courses at TAFE and so many more amazing things I needed but were just unattainable before. I hope the doctor calling you at home for your appointment stays instead of struggling to go into the surgery. Many times, over the years I was unable to drive to an appointment so missed out on getting urgent medical advice. Medication, again not having to get the script yourself and take to pharmacy, all done now without leaving your home.
Work from home, what a dream…I hope this can be used as an option for those too disabled to leave their home but still have a brain and want to work, who need to earn money. Home loans, the financial difficulties I’ve faced over the years. I became budget queen and always paid my debts, but trying to get a loan for anything, never…
Of course, I was extremely lucky to have the honour of parenting two beautiful children into adults, who have gone out into the world to make their mark. They were my world for so long, and now they have left I find I am an empty nester who I feel even though I suffer with chronic pain I have more to contribute to this world than just sitting at home bored out of my mind. Another thing Covid-19 has brought to the forefront, no it’s not fun being at home alone every day, no work to go to, no friends to see and too scared to go out in case you catch something. Welcome to my world, nothing much has changed for me through this crisis. Another thing I wish those without chronic pain would understand, we still want to be a part of this world, not just exist on the sidelines watching everyone else live. Please remember when you do get to go back to your normal life remember how you felt through Covid -19, because that is my life, always, every day, forever.
I was still singing in bands at 49 earning a wage, loving my job, my life with my fiancé when I was struck yet another blow, cancerous thyroid nodules which damaged my laryngeal nerve causing me to lose my voice. I was 50 when they removed half my thyroid and my dreams of ever singing again. I was set to marry in four months’ time, I’d already picked my wedding dress when my weight ballooned out due to my thyroid condition. The new medication I was going to now be on for the rest of my life hadn’t stabilized my thyroid yet. I had a big red angry scar on my neck from my operation, and I was in tears as my dream wedding dress I had bought no way fitted me anymore.
How much more could I take? Well it seems resilience is a good word to use for me, as no matter what happens I bounce back. Don’t get me wrong, it’s not been without tears, tantrums, curled up in the foetal position at times in darkness and just plain why bother? Something I think we all need to learn, remember, part of life is down, part up, and everything else in between, it’s how you deal with it that matters. My kids are an amazing reason to bother, but also, I am a reason to bother. I get angry, mad, jealous, why me, all those feelings and I cry and mourn the life I should have had if not for…but…
One thing that has always been great for me, that is if all else fails just look outside myself…don’t listen to the voice we all have in our heads…I’m not worth it, I’m stupid, who’d want me…forget all that and just go into nature. Go outside, feel the wind on your face, smell the freshly mowed grass, look at that beautiful sunset because tomorrow is another day.
I had the most beautiful wedding day, everyone I loved was around me. Even though I was the biggest I’d ever been in weight in my life a seamstress managed to work miracles with my wedding dress and make it fit. Even though my hair had been falling out as a side effect of my condition, I had enough for the day. Even though I had no voice, my wonderful amazing old band mates helped me record the song I used to dedicate to my then future husband at each gig, and I walked up the aisle to this song playing to see him crying his eyes out.
Yes, I am still in pain every day. Every day is a challenge. I’ve had to reinvent myself now as a jewellery designer and hope to launch my business soon. I wish for all of us who suffer the invisible illnesses to be visible and treated with respect, compassion, kindness and please everyone just have empathy for each other anyway, no matter what.
My hope is that the government and the relevant departments do more to recognise chronic pain sufferers and help ease the burden by implementing good structured plans to help us still feel worthwhile in our community. To help those that need multi-disciplinary health care professionals regularly to get funding to cut costs for this and the multiple medications often needed. We do have a lot to give, given the chance. We may not be able to work in the way that is seen as normal, but make a new normal for us.
And if all else fails, let’s go to beach, go for a swim and watch the sunset together, and start over again tomorrow.