Category: 2016

Nat Couts_We Don't Talk About

I want to talk about post-natal depression

Nat Couts

Melbourne, Victoria

Nat experienced post-natal depression after the birth of her first child, Eric. Despite the experience, Nat and her husband Cameron went on to have a second child, Nathan. Nat comes from a multi-cultural family: she was born to Indonesian parents in Germany and lived her first eight years there. Her family then returned to Indonesia, where she stayed for the next seven years. Nat then moved to Australia when she was 15.

 

Nat Couts_We Don't Talk About
Nat Couts_We Don't Talk About

 

My depression came on quickly, less than three weeks after Eric was born.

I found breastfeeding difficult. Eric and I simply couldn’t get the hang of it. And so I called a breastfeeding hotline for help. I don’t remember what I said, but the lady asked if I was okay. I said no. She told me to go to emergency. My husband, Cameron, immediately took Eric and I to the hospital. Less than 12 hours later I was admitted to a psychiatric unit.

It wasn’t just breastfeeding. I had unreasonable expectations of motherhood. All of the information I came across depicted motherhood as a glossy world where everything was perfect. I thought there was a right way to do everything, and if things weren’t right, if things weren’t perfect, I found it difficult to function. In reality, new motherhood wasn’t perfect, and I felt crushed by guilt. Crushed to the point where I couldn’t cope.

 

Admission to a psychiatric unit

We sat in the emergency department all day. I have never cried so much in in my life.

Even there, waiting in the emergency room, my expectations got in the way. I thought Eric should be crying, I thought he should feel my distress. And when he didn’t cry, I thought I had failed again, and that we didn’t have a proper mother-child bond. Looking back, I know he was upset – he was unsettled, he hadn’t fed well and he hadn’t slept… But I didn’t understand. I grew even more confused.

The mother-baby units were full, and so the hospital admitted me to the psychiatric unit. If there had been a mother-baby unit they would have kept us together… But there was no choice.

It was bewildering. I was lost. Afraid. A failure. I was separated from my son. Intellectually I knew Eric was safe, but I felt visceral pain being separated from him, even though I knew I wasn’t in a state to look after him.

I had my own room, although there was no lock on the door. I stayed in the unit for about 10 days. Each day I would express, but with no lock on the door staff would walk in at any time. I found the lack of privacy difficult.

And I was medicated. They said it wouldn’t effect my breast milk, but after a few days I decided to use formula while I was on medication.

Everyday was groundhog day.

I started private counselling and attended group therapy. I was relived there was a name for what I was experiencing. I thought that if there was a name there was a treatment. But knowing was difficult too. Post-natal depression comes with stigma.

Early on, the psychiatrist recommended electroconvulsive therapy. I thought it sounded medieval… I didn’t even know they still did that. I knew my rational faculties weren’t working, but I still said no. It felt wrong. I wanted to give the medication a chance to work. It took a while, but once the medication kicked in it was wonderful. When the psychiatrist saw me after that, he said he was glad we hadn’t done the electroshock therapy. I thought that was ridiculous. How many people have it who don’t need it?

 

Reuniting with my son

From the time I was admitted, Cameron and Eric could come and go as they pleased. But it wasn’t the right place for me to be for my son. It wasn’t right for our family.

Cameron fought the system hard, trying desperately to find us a mother-baby unit. After 10 days he found a room in a different hospital. We moved there, and stayed for three weeks.

The bond between Eric and I improved. But there were bumps along the way.

I brought Eric into my room as soon as I was allowed. He was a noisy sleeper, and I stopped sleeping. A nurse found me trying to sleep with a pillow ever my ears… She thought I was trying to smother myself (no doubt because I had come from a psychiatric unit). When she realised I was trying to block out the noise Eric was making, she offered to take him to the nurses’ station while he slept and bring him back every time he woke. It was a relief. I started to sleep again, and the staggered approach to taking on Eric’s care full time helped me to recover.

 

 

 

 

Recovery and ongoing management

They let me go home for a day visit on Christmas Day, and I went home permanently in January. When I was there, no one explained the severity of my diagnosis. But when we left, the nurses were surprised we were leaving. They thought I would be there for at least another month.

Still, the Department of Human Services had to check up on us. When I went through the emergency department I told a nurse that I had once pulled Eric off my breast and shaken him when feeding hurt too much. I don’t remember saying this. It meant the Department was part of our home life for three months. It was intrusive. But looking back, I am glad Australia has such a system in place.

I continued to see a psychiatrist and take medication for a year. Returning to work helped. I went back two days a week when Eric was four months old, and slowly increased this. It was good for me, and good for our young family.

I don’t know how Cameron coped. As a family, we are lucky we are so close to his family. Cameron and Eric had a wonderful support network. His parents later told me that after I was admitted he went straight to their home and burst into tears.

My post-natal depression was a shock, to me and to everyone else. No one expected it, or thought it could happen to me. I was clucky, and I had always wanted children. And yet it still happened.

I haven’t decided how I will talk to Eric about it all. I will, when he is older. I know myself better now, and I know how to look after myself. And that means I can look after my family.

Just remember, there is no script to post-natal depression. People don’t talk about it, but it is more common than you think.

We Don't Talk About_Sammy Moynihan

Thriving with Primary Progressive MS

Sammy Moynihan, Canberra

Australian Capital Territory

Sammy is 27 years old. He was diagnosed with Primary Progressive Multiple Sclerosis (PPMS) in early 2013, but has felt the effects of MS since his final year of high school in 2007. MS has fundamentally altered the course of his young life.

 

We Don't Talk About_Sammy Moynihan
We Don't Talk About_Sammy Moynihan

Life is full of things we can’t control. You can be as organised and disciplined as you like, but the chaos of the world will always catch up to you. Just when we think life is going zig, it zags… Or goes completely off the rails and lands in a ditch somewhere. One thing we can control, however, is the way we embrace this uncertainty and our attitude towards things that seem to be out of our hands.

I was diagnosed with Primary Progressive Multiple Sclerosis four years ago, but I could feel the symptoms creeping up years before the official diagnosis. At first it was gradual, but they moved faster and faster each until I finally realised ‘something’s not right here’.

Walking became uncomfortable and my legs were always in pain. I was forever exhausted and constantly falling over for no apparent reason. My whole right side became almost non-existent – excessively weak and unable to function ‘normally’. I found it difficult to grip objects, walk up and down stairs and even shower properly (because I couldn’t reach my armpits to apply soap). Every now and again, my brain was overcome with a foggy sensation and I felt like I was always on hard drugs. Remembering simple things became a chore, as did tying my shoelaces. Standing up was something I dreaded, as it meant shaking randomly and longing to sit back down. Other symptoms would come and go as my body played Russian Roulette with itself.

Initially, I thought it was part of growing up – that people are supposed to feel awful all the time and I wasn’t any different to everybody else. After much insistence from my mother, I saw a litany of different doctors before my GP suggested I see a neurologist. He told I could have a brain tumour and ordered an MRI scan. The MRI did not show a tumor, but it did confirm my diagnosis.

The day I was diagnosed with MS is a day that will always stay with me. Primary Progressive Multiple Sclerosis. There is no cure or official treatment, but symptoms can be managed. For some time, I felt very depressed about the whole thing and lost my motivation and drive. I approached life as though each moment happened in a vacuum, merely existing rather than living my life. I dropped out of university in a hurry and stopped doing the things that made me happy.

People think MS is a death sentence but as I came to terms with the illness and learned how to manage it, I realised it was more of a life sentence. MS is a physical reminder of the chaos and changing nature of life. On some days I feel fine but on others, I will be blindsided by a new symptom or overwhelmed by the existing ones. But in managing these symptoms, I’ve become more resilient and less afraid of things I can’t control.

It seems easy to tell sick people to be positive and everything will be fine. In a medical sense, being positive is what got me into this mess in the first place. There are times when smiling or pretending everything is ok doesn’t work. And it is more than reasonable to be upset about having MS. Still, I have found ways to release my anxieties and acknowledge the good things, even when it seems they are few.

I began writing a blog some time ago, Fully Sick with MS. It has been an excellent and therapeutic creative outlet. When things go wrong, I write about it and try to see the funny side. Not only is this cathartic for myself, I’ve found that it has been great for my readers also. The blog has become a great place for people with MS (or any illness including ‘life’) to connect with each other, share stories or even just laugh in the face of adversity.

I was overwhelmed by the amount of attention the blog received so quickly and by how many people appreciated my stories. I overheard people talking about the blog on the bus and kept receiving emails from like-minded fans. I was a little anxious that I was going to turn into ‘that guy with MS’, but I was also mindful to showcase other aspects of who I am. Now I am an MS Ambassador with MS Australia, and I can share these stories in person. I try not to be defined by the illness, but I also don’t want to be scared or ashamed of it either. Differences should be cherished, talked about and never ignored.

My values changed dramatically, and I’ve found myself going in new directions. I returned to university last year. My relationships with friends and family have strengthened, and I am restoring the optimistic attitude I had before the diagnosis.

I realise that by accepting the negative aspects of life, we don’t have to delete the positive ones. We can acknowledge that things might be awful at a given time but we don’t have to let that feeling consume us. Whenever I feel anxious or sad, I embrace it and don’t waste time trying to block emotions. Once I embrace it and accept it’s there, I am able to look beyond it at the things that make me happy. MS can feel like carrying a burden. While I don’t think that burden will ever completely disappear, my back has become stronger (at least in a metaphorical sense).

The chaos and uncertainty I’ve been speaking of can be frightening, but it is also one of the beautiful things about life. Whether you have an illness or not, it’s thrilling to be able to wake up each day with no idea what surprises are in store. New experiences and faces flit in and out of our lives everyday. I have no idea what will happen tomorrow but I sure as hell am excited to find out.

Social Anxiety by Niicole Sarah_http://niicolesarah.deviantart.com/art/Social-Anxiety-335085680

Surviving anxiety and panic disorder, sexual abuse and rape

Social Anxiety by Niicole Sarah_http://niicolesarah.deviantart.com/art/Social-Anxiety-335085680

Madison

Prahan, Victoria

Madison left home at 16, running from the death of her mother, sexual abuse and a disengaged father. She lives with anxiety and panic disorder, and has had two breakdowns. Now 31, Madison resides in Melbourne. She is a writer and shares her experiences under her pseudonym.

 

I have been in Melbourne for four years. I moved here after I recovered from my second breakdown. I chose Melbourne because my brother is here.

I have felt well since I moved, but I do look back. I kept everything I wrote, and I find it both refreshing and devastating to revisit my old mental state. My experiences have left me with an overwhelming desire to write. Prose is the medium I choose to illustrate my struggles and the strength it has taken to survive.

I don’t want to be painted as a victim. I want to let people know you can live through trauma, abuse, loss, instability, breakdowns and mental illness without ending up the stereotype: addicted to drugs or alcohol, or a nuisance to society.

 

My downfall started early

Growing up was a nightmare. I had no sense of self and no family foundation.

My father violently abused my mother. My memories start from around the age of 8. The abuse didn’t last for long, as my parents separated quickly. My mother took my younger brother and I. We moved around quite a bit, until she found a job.

She met a male, and we soon moved in with him. He sexually abused me until I was 11. My distaste for my mother was strong through those years, and I still blame her for exposing me to that abuse.

Because of him, I never wanted to be at home. I was always looking for an out, and I would use any excuse to stay away. I spent a lot of time at my neighbour’s Lynda’s house. She welcomed me into her family, and they are still a huge part of my life. I stayed in school and received great marks. I also used ballet and dance as an escape from what happened at home.

My mother was diagnosed with cervical cancer. She left my abuser as soon as she fell ill. His disappearance was great for me, but the good times did not last. My mother went through cancer treatment and a hysterectomy, but it didn’t help. She died when I was 12.

I never told my mother what had happened to me, and I still blame her for dying before I was ready to tell her what happened.

My brother and I moved to dad’s. My father has never been violent towards me, but I still didn’t want to be near him. I was mourning the loss of my mother, feeling confused about my sadness and my anger towards her, and I couldn’t forgive him for the way he had treated her. My feelings were complex and conflicting. I felt a lack of emotional support. Perhaps he did his best, but it wasn’t enough.

 

School, anxiety, panic and rape

I lived between Dad’s and Lynda’s for four years. I felt I should be with my family. But I preferred being with Lynda, where I had a solid friendship group and lived with her family, which had become my own. She is a beautiful woman. Time and again, she has welcomed me into her home during the worst periods of my life.

I was headstrong, and my father was disengaged. And I was already suffering from anxiety and panic attacks, although I didn’t know what to call them at the time. My chest would tighten, my heart quicken, my muscles tense. Anxiety and panic attacks always pass: that is the beauty of them. They are a temporary state of mind, and my coping mechanism was to ride them out and continue on. I didn’t speak about them. I asked a GP once, but she told me I was too pretty to have such feelings, and I didn’t bring them up again.

One day I was smoking in the school toilets and the cleaner accidently locked me in. My anxiety was shocking. I took the experience badly. When the door was unlocked, I went straight to the school counsellor. I knew something was wrong – I had all the physical and emotional signs of a major panic attack – but she dismissed it. I walked out and never went back. I don’t remember anything else, the next days are blurry.

But I did not go back to school, and I did not finish Year 10.

Instead, I threw myself into the workforce. I was desperate for my own space. I found an office traineeship and worked as a waitress. At 16, I moved into a share house.

I was vulnerable, and some people took advantage.

One night, a chef at the restaurant where I worked at raped me. I don’t know if I was drugged or not. I do remember drinking alcohol. I didn’t tell anyone. It would have been good for me to tell someone, to have the validation of the crime being recognised. But I didn’t know how to, or even that I could.

And so I quit the job at the restaurant. I tried to run away from my problems, tried to leave them behind. I hadn’t been taught the coping skills required to deal with living life in general, let alone to deal with domestic violence, the loss of my mother, sexual abuse and rape.

Running away from my problems became a pattern, and I believe it contributed to my anxiety and panic disorder. When you don’t deal with negative emotions and experiences, they don’t go away. They boil inside you.

I was searching, but I didn’t know what for. I was young, naïve and vulnerable. I had more panic attacks – twice my heart rate was so fast and my body shaking so badly that I went to hospital and was hooked up to heart machines. A doctor in the emergency room discharged me once my heart rate decreased, telling me that it may have been a blood clot. The nurse who had wheeled me in to get a lung scan was impatient, stating that patients with collapsed lungs could take deeper breaths than I was.

But anxiety is physical and mental. I was not treated accordingly, and I became less inclined to try to address my anxiety and panic.

Anxiety_https://jessicaforrester.me/2015/06/01/crafty-coping-creative-ways-to-cope-with-anxiety/

A series of breakdowns

Anxiety is horrible, although I am used to it. But when it reaches a certain level and panic kicks in, it becomes unmanageable. It destroys the normal order of life.

There have always been periods when my anxiety became too much to handle. During those times my coping strategy – work – would fall apart.

During a panic attack, I shake, my heart is in my mouth and my breathing becomes rapid and shallow. My muscles tense – so tense they feel like rocks. It is as if my mind wants to escape from my body so much it literally tries to run away. And the world becomes overwhelming. I stop functioning.

It is all consuming, the most frightening thing in life.

Normal relationships stall. Life fragments.

I was 20 when I had my first breakdown. Lynda offered to help, and I lived with her for a year. I spent my days doing puzzles, desperately trying to calm my mind and teach it patience and concentration. A metaphor, I suppose, as I tried to put my mind back together.

For the first time, I also sought external help. I saw a counsellor, a psychologist, and attended group therapy. I spoke about everything – my mother, my father, the sexual abuse, the rape. It was a defining experience for me. My experiences were acknowledged, and somehow validated.

I recovered and moved into my own space. I also enrolled in an online degree. But I could feel my mental state falling apart again. It was too much to ask Lynda to look after me again. To make completing my degree possible, I decided to move back in with my father. Moving in with my father wasn’t a good idea. My mental state rapidly spun out of my control. I reverted to my previous approach and tried to run away. But I had a breakdown, a huge one. I stopped working. I ran out of money.

Lynda suggested I move back in with her. I drove a total of 24 hours to get to her, and by the time I got there I was barely functioning. I shouldn’t have been behind the wheel. This second breakdown wasn’t just mental. My body broke down too. It physically got me to Lynda, but then could go no further for several years.

I was 25, and it took years to recover. Those years were the most defining years of my life. I learnt what it felt like to be a shell of a human, mentally and physically exhausted to what felt like the precipice of death.

After spending six months as an agoraphobic (unable to leave Lynda’s house) I pushed myself to see a GP and met an incredible doctor I finally felt safe with. But over the next six months, Lynda’s life changed and I became too much for her to manage. I went back to my father’s house.

My father lived on an isolated property – not a great location for someone with anxiety. I didn’t want to be there, but I had nowhere else to go. I was on the verge of losing my mind, and I had suicidal ideation. I wasn’t planning to kill myself, but I found the thought of death comforting. It meant there was always another option.

One day I had such a severe panic attack I called 000. They picked me up in a shitty old ambulance and took me to a shitty old hospital in the middle of nowhere. I needed help, but they didn’t take me seriously. They checked my wrists and asked if I swallowed anything. My wrists were fine and I hadn’t swallowed anything, so they sent me home.

It happened again. This time they sent a psychiatrist to see me. He told me I had extremely high levels of anxiety and PTSD, and gave me a prescription. I threw the prescription in the bin on the way out. I had researched medication and found the majority of people who tried anti-depressants to treat anxiety felt it didn’t work for them. And I have always been opposed to putting foreign things into my body, so the idea that they wouldn’t work deterred me from trying them.

 

Supporting myself

I decided I had to get better just so I could get out of there. I worked closely with my GP and started taking medication: Xanax. It was different to the previous prescription, and it actually reduced the anxiety levels. The only deterrent I came across was that it was addictive. I knew myself well and was confident that I didn’t have the addictive tendencies. The GP monitored me closely with regular visits, fantastic communication and controlled the amounts of Xanax I was prescribed. After a few months I felt a positive change in my anxiety levels. I slowly started coming off of the medication.

I wrote ferociously during this time, and focused on completing my literature degree. I spent my days away from the house in the park with paper and a pen. It took almost a year of an isolated, stress free life, as well as regular visits to my psychologist, to ease my anxiety and panic disorder.

I was ready to support myself, and I decided to move to Melbourne. I have lived a relatively anxiety free life since then. But I will never be entirely rid of the illness, it is too engrained. Anxiety and panic disorder has taken parts of my life away from me, it has stalled my progression in life, affected my career, my ability to travel, and stolen my sense of freedom. It does work as a protector though, telling me when to slow down and to question what is triggering anxiety in me.

Anxiety and panic disorder is a complex and serious illness. I wish my father, or even someone at school or a health professional, had encouraged me to speak more about it in the earlier years. I am certain early treatment would have saved me from years of turbulence. If you live with anxiety and panic seek support that works for you, don’t let it manifest.

This is what I want you to know (and didn’t say on TV)

This We Don't Talk About story was originally published in shortened form as 'I Feel Sorry For The Person Who Left Me This Note. They Clearly Don't Understand Disability' by The Huffington Post on 2 May 2016. You can read that version here. This is a longer, more complete version of Justine's story.

 

Justine Van Den Borne

Justine Van Den Borne made national news on The Project after her Facebook message to someone who left an abusive note on her windshield went viral. There have been more than 250,000 Facebook likes, 58,000+ shares, and 42,000+ comments so far. She is 41, the mother of Annabelle (19) and James (17), and is living with Secondary-Progressive Multiple Sclerosis.

We Don't Talk About_Justine Van Den Borne
We Don't Talk About_Justine Van Den Borne

Let me tell you what my MS is really like

A few days after I posted the note on Facebook on 10 November 2015, I wet myself in public.

I found myself back in the same car park, hurrying to my car because my bladder had failed. It is not the first time that has happened. These days I wear dark pants and always carry a spare pair.

I sympathise with people who don’t understand. I didn’t understand MS or disability until I was diagnosed. I do now.

And this is what I want you to know.

I am eight years into my MS diagnosis.

Everyone’s disease is different. We all have different stories. But we have many similarities too. Especially the embarrassing symptoms we are often too afraid to talk about.

For me, talking about my bladder issue embarrasses people, much more than the mistakes I make because of my poor memory or the accidents I have due to my terrible balance.

They also don’t know how to react to my increasing disability.

Two months ago – after I was on The Project – I had my first instance of not being able to walk. I say first, because it is likely to happen again.

I was gardening in my backyard with a friend on a hot day. The heat affects most people with MS, and it got me that day. I looked normal, my friend could see nothing different. But my legs just stopped working. I couldn’t walk, I couldn’t move. I sat down on the grass and sobbed. I knew the heat was making it worse, and so I dragged myself to the nearest shade. Fifteen minutes later I was able to raise myself into a chair.

My friend could have helped me move, but I wanted to do it myself. Because losing my ability to walk, even for a short period of time, makes me cling to my independence even more.

The experience frightened me. My MS is progressive, and each summer I notice the heat impacts me a little more.

But MS is more than that one horrible episode or bladder mishap. It is constant.

I am always fatigued. Fatigued because my body spends its time and energy attacking itself. Raising two small children while doing shift work was easy compared to this battle with my own body.

I can’t feel my feet. That means I can’t wear shoes that don’t tie have a strap, because I don’t grip like a normal person and shoes just fall off. Last year I stepped on a pitchfork in the garden and ended up in hospital… that was the first time I felt anything in my foot for years.

My hands feel like I am wearing gloves. My fine motor skills aren’t what they used to be. I can’t even plait my daughter’s hair.

I stagger when I walk. I have canes propped up around the house, and even a spare in the car. On days when I feel good and don’t use a cane, I still stagger. And I see the disapproving looks; I know people judge. They think I am drunk.

And I am in pain.

When you look at me, I am in pain.

When you saw me on The Project, I was in pain.

 

This is how it impacts my family and my future

My children, Annabelle and James, live at home. They are 19 and 17, and have watched my MS progress since they were in primary school. They understand. It is a part of their life. But it does take a toll on them.

It started with numbness in my hands and feet nine years ago. I ignored it, as you do. But then my neck and face went numb, so I went to my GP. My blood tests came back normal, so I was sent to a neurologist.

They suspected a brain tumour and ordered an MRI. The neurologist found no tumour: my brain and optic nerve were – and still are – fine. But they did find four massive lesions on my spine.

I was diagnosed with Relapsing-Remitting MS (RRMS), but after a while my neurologist changed my diagnosis to Secondary-Progressive MS (SPMS). SPMS does not have the relapses that RRMS. It just progresses over time.

All these years later I still only have those four lesions. But they are changing colour, indicating more white matter. That means more damage has occurred. I have weeks when my body stays the same, but it never lasts. I notice my progression. There is always something little going on.

I notice. It makes me think of my future.

Before my diagnosis, I feared the fate of the guy who played Superman – his brain still worked, but was trapped in his own body. That may be what MS means for me.

I am an only child. My parents worry about me. My mother helps me so much deal, and wonders what would happen to me – and my kids – if she were gone. In the normal scheme of things, I should be the one worrying about them. But they are confronting their daughter’s mortality.

I think about my children. MS is not hereditary, but there is a genetic component. No one else in my family has had MS, but you never know: I might be the first link. Some days I wish there was a test we could do. But then again, I wouldn’t want to know unless we could treat or avoid it.

My son plays his cards close to his chest and I’m not sure what he thinks. He is always around to help me though, picking his sister up and taking her places now he can drive.

My daughter worries for me. She is like my shadow. We are always together.

I want my kids to be kids. But my MS has impacted their childhood. I don’t like to ask for their help, I don’t want to burden them. I want them to experience the freedom I had, growing up with parents who didn’t have MS.

Their father and I split up ten years ago, before I was diagnosed. Daryl is a fantastic dad and ex-husband. It took us a while, but I think we co-parent well.

I have been with Michael for the past nine years. He has been with me every step of the way with MS. But it has been hard for him. He knows what I deal with behind closed doors.

 

What I have lost – and gained – because of MS

I was made redundant at the end of 2012. I experienced a massive progression in my MS that year and some days I couldn’t walk without falling. My neurologist suggested I stop working, as I was only making the MS worse by trying to do more than I could. I now receive the disability pension. I am grateful for that, but it was not a choice I wanted to make. It was depressing; it felt like I was giving in to the disease.

But MS is makes things hard, and some things are no longer possible.

We have gone to Thailand as a family for the last couple of years, but the next trip will be the last time I can go. It is just too risky these days. I fell over last time and dislocated my finger, ending up in Bangkok Hospital. What if I hurt myself more seriously next time?

My MS progresses every year. Sometimes is just a little worse, and sometimes there is a step change.

I will have to learn to self-catheterise soon. The thought frightens me.

We just brought home a puppy, a Labrador called James. He is to be a companion dog for me. There are aid dogs for people with MS and Parkinson’s disease, but there is a long wait list. I am going to see if I can train James to pick up what I drop.

I still feel sorry for the person who wrote the note… They clearly don’t understand disability. But good things have come from it – there is greater awareness.

And I hope people read this. I hope it makes them think.

I think we all have to do our best to stay standing up, and this is my way.

I Feel Sorry For The Person Who Left Me This Note. They Clearly Don’t Understand Disability

This We Don't Talk About story was originally published by The Huffington Post on 2 May 2016. You can read it here. A longer, more complete version of Justine's story is published here.

 

We Don't Talk About_Justine Van Den Borne
We Don't Talk About_Justine Van Den Borne

I wet myself in public a few days after my Facebook message to the person who left a note on my car went viral.

I found myself back in the same car park, hurrying to my car because my bladder had failed. It is not the first time that has happened. These days I wear dark pants and always carry a spare pair.

I sympathise with people who don't understand. I didn't understand MS or disability until I was diagnosed. I do now.

And this is what I want you to know.

I am eight years into my diagnosis of Secondary Progressive Multiple Sclerosis.

Everyone's disease is different. We all have different stories, but we have similarities too. Especially the embarrassing symptoms we are often too afraid to talk about.

For me, talking about my bladder issue embarrasses people, much more than the mistakes I make because of my poor memory or the accidents I have due to my terrible balance.

They also don't know how to react to my increasing disability.

Two months ago, I had my first instance of not being able to walk. I say first, because it is likely to happen again.

I was gardening in my backyard with a friend on a hot day. The heat affects most people with MS, and it got me that day. I looked normal, my friend could see nothing different. But my legs just stopped working. I couldn't walk, I couldn't move. I sat on the grass and sobbed. Fifteen minutes later I was able to raise myself into a chair.

My friend could have helped me move, but I wanted to do it myself -- losing my ability to walk, even for a short period of time, makes me cling to my independence even more.

The experience frightened me. My MS is progressive, and each summer I notice the heat impacts me a little more.

MS is more than that one horrible episode or bladder mishap. It is constant.

I am always fatigued. Fatigued because my body spends its time and energy attacking itself. Raising two small children while doing shift work was easy compared to this battle with my own body.

I can't feel my feet. That means I can't wear shoes that don't tie or have a strap, because I don't grip like a normal person and shoes just fall off.

I stagger when I walk. I have canes propped up around the house, and even a spare in the car. On days when I feel good and don't use a cane, I still stagger. And I see the disapproving looks; I know people judge. They think I am drunk.

And I am in pain.

When you look at me, I am in pain.

When I appeared on Channel Ten's 'The Project' to talk about the Facebook post, I was in pain.

This is how it impacts my family and my future.

My children, Annabelle and James, live at home. They have watched my MS progress since they were in primary school. They understand. It is a part of their life. But it does take a toll on them.

I have weeks when my body stays the same, but it never lasts. I notice my progression. It makes me think of my future.

I am an only child. My mother helps me a great deal, and worries what would happen to me -- and my kids -- if she were gone. In the normal scheme of things, I should be the one worrying about them, but she is confronting her daughter's mortality.

I think about my children. MS is not hereditary, but there is a genetic component. No one else in my family has had MS, but you never know: I might be the first link. Some days I wish there was a test we could do. Then again, I wouldn't want to know unless we could treat or avoid it.

I want my kids to be kids. I don't like to ask for their help, I don't want to burden them. I want them to experience the freedom I had, growing up with parents who didn't have MS.

MS makes things hard, and some things are no longer possible. Sometimes it is just a little worse, and sometimes there is a steep change.

My bladder is getting worse. I will have to learn to self-catheterise soon. The thought frightens me.

I still feel sorry for the person who wrote the note. They clearly don't understand disability. But good things have come from it -- there is greater awareness.

And I hope people read this. I hope it makes them think.

Evelyn Wise, negotiating life post-cancer

Navigating life post-cancer

Evelyn Wise, negotiating life post-cancer

 

Evelyn Wise

Rhodes, New South Wales

Ten years ago, Evelyn (now 62) was diagnosed with a rare and aggressive form of cancer. She survived the cancer, but lives with the effects of treatment everyday. Evelyn is married to Andrew, and they have two grown children, Stephanie and Matt.

 

My unexpected diagnosis

In May 2006 I found myself exhausted. I was working hard and organising two fetes, one at my daughter Stephanie’s school and another at my son Matt’s. I felt terrible, but I ignored it. I thought it was just stress.

I had a constant headache, as well as an ache in my mouth and problems with my vision. Even my teeth hurt. I saw my dentist, and she thought stress was causing me to grind my teeth. She made a plate for me. I also saw an optometrist. He found nothing wrong with my eyes, and no reason for the headaches. Again, I blamed stress.

In July, my son was in a school skiing competition. We flew to Cooma to cheer him on. I had my first nosebleed the night before, and then palpitations on the flight (even though it was such a short flight). The trip was also a surprise for my husband, Andrew. We were going to celebrate his 50th birthday. But while we were there I had four nosebleeds in four days. It wasn’t much of a celebration. I saw my GP as soon as I arrived home. She thought I had polyps, and arranged for me to see an Ear-Nose-Throat (ENT) specialist.

I had to wait until August for an appointment. I had more than 30 nosebleeds in the four weeks I waited. As soon as he saw me the ENT ordered a CT scan. It showed a tumour in my sinus that extended under my right eye and the side of my nose.

Single cell neuroendocrine carcinoma, they call it. Cancer, for short. It is a rare type of cancer normally found in the lungs. For me to have it in my sinuses was unexpected.

I was sent to a cancer specialist. He told me the cancer could spread and break into my brain, and that I needed to prepare for what was to come. He gave me a 70 per cent chance of survival, if it didn’t reach my brain.

 

The immediate impact on my family

Andrew and I decided decided to wait before we told our children. We wanted to have something more definitive to tell. And so we told them my nosebleeds and headaches were due to grinding my teeth. But the children knew something was wrong… Andrew and I were walking around like zombies.

I had to give up work immediately – I was getting nosebleeds all the time. I had been so active, so involved… and it all had to end.

My daughter, Stephanie, was in her final year of school at the time. My health and mood was affecting her. She sat the first of her final oral exams in September, and we told both children afterwards.

My diagnosis effected my children differently. My daughter became strong. We had a matching set of crystals that we rubbed – she in her exams and me during chemo. It was a way for us to support each other. My son worried. He took the diagnosis hard, as his friend’s mother had died of breast cancer and he thought I would die too.

Andrew and I had been married for eighteen years. My diagnosis was hard for him. He was an only child, and both his parents were still alive. He had never known illness or death. Together, we decided that the cancer couldn’t beat us. We decided to beat it. That was the way we took control of my health, and of our lives, again.

 

Enduring chemotherapy and radiation

I started chemotherapy and radiation the day Stephanie started her final written exams.

Before treatment began, the doctors encouraged me to have any dental work I needed done. Chemotherapy ruins your teeth and mouth. I followed this advice, and I am glad I did. My dentist advised me to drink any Grange or Moet that I had access to, as my tastebuds would never be the same again.

I had 33 radiation treatments in the first month. The radiation ran alongside the chemotherapy, which started in October and continued until January 2007. They hit me hard. During those first weeks, I sat through chemotherapy in the morning and radiation in the afternoon.

My sister, who runs a hospice, came to stay with us for a few days and helped Andrew and the kids learn what to do. She helped them feel important, feel part of my treatment and my support team.

But it was hard. My mouth and throat were in so much pain I had to gargle liquid anaesthetic before eating my blended food just to swallow. I feel so sorry for people with throat cancer… I endured what the treatment did to me, but what they experience must be even worse.

I had a great support network. The ladies at my Quilting Group shaved my head before I lost my hair. And people from everywhere kept me company, bringing me food and flowers. To be honest, sometimes the hardest part was the flowers. Because of the radiation, I couldn’t handle the scent. Even today, nine years later, I can’t bear the scent of perfume.

I can’t praise enough the support I received during treatment; it was fantastic for Andrew and I. It helped us cope. A group of mums took turns taking me to and from treatment. And one friend, Sue, actually started to work from my home, and organised different people to be with me when she wasn’t there.

But looking back, having different help everyday wasn’t the best choice for the kids. I later found out that Steph and Matt found finding a different person in their home everyday destabilising. It made them feel like it was no longer their home.

Stephanie’s school days were over. She had no classes, but she spent her days at the State Library as home wasn’t a good place to study for her final exams. That meant she had no support network around her for much of the time. Still, Stephanie was able to claim misadventure, which helped her final marks.

In retrospect, I know would have been better off getting a nurse – one person to always be there. I feel I should have known that is what my kids needed, but the offers of help – physical and emotional – seemed the perfect solution at the time.

Andrew and I are so proud of both our children. Of how they coped, and of the adults they have become.

 

The consequences of treatment

My mother died of cancer the year I married. I never appreciated what she went through until I went through it.

Unlike my mother, I survived. I am cancer free, and – because of the cancer I had – it is unlikely to come back. But the long term side effects of the treatment continue.

The treatment left me with internal scarring, which required follow up operations to have my nose scraped to let me breath.

And the radiation destroyed my tastebuds. I can’t drink coffee or red wine anymore, or go near chilli or spices – if I do my mouth breaks out in ulcers.

My hair and eyelashes grew back, but my eyelashes grew inward. I had to have them permanently removed. The radiation effected my eye, damaging the retina and the optic nerve. I went blind in my right eye slowly over the first two years. I no longer had any side vision. I can still drive, but I choose not to for long distances.

My hearing was also affected. The Eustachian tube in my right ear was scarred. I now have a grommet in that ear, and I need ear plugs in the other when flying. Flying can be uncomfortable, and this limits my ability to travel. We did go to Italy for a month a few years ago, but I am unlikely to go overseas again.

The specialists don’t know what causes the cancer I had, but they don’t think it is genetic. I am grateful for that – I don’t want my children getting it. I think stress was a trigger, whatever the cause of this cancer the degree of stress I was under at the time pushed me over the edge.

 

What I want you to know

I received all the support I could have asked for during my treatment. But in reality, the hardest part has come after the treatment. Post-cancer life is hard. I live with the side effects, and they are debilitating.

People look at me and think I am alright; they think I am better. People don’t talk about the cancer anymore, and my support network dropped away as soon as my treatment finished.

I am one of the lucky ones. I got though it. But the side effects have changed my life.

The evils of the treatment… They stay with me.

They say it takes twenty years for the radiation to leave your body… It makes me think of what happened in Japan.

I used to be super-active. I am not anymore. I take things slower. If I don’t get something done, I don’t get down. I tell my family to do it themselves!

But if I get a headache, it plays on my mind. What if the cancer comes back?

I’ve chosen not to return to work. But it is important for me to stay engaged, to be doing something. I keep my mind active by quilting, mostly for charities. I try not to make the same thing twice, always using a different pattern or combination of colours.

Cancer is a scary thing. It can make or break a family. Cancer made our family. Two years ago my sister-in-law passed away from ovarian cancer. And so I know, my family knows, that not everyone’s cancer story ends as well as mine.

I don’t take anything for granted. And I can’t be prouder of my husband and kids.

Juggling MS, family and work: Priorities and possibilities

 

Mike Welsh

West Footscray, Victoria

Mike is a digital banking guru at ANZ Bank. English-born, he migrated to Australia with his partner, Kate, twelve years ago. They married in 2009 and have two young children, Lila and Ciarán. Mike was diagnosed with MS at the age of 31, and will soon turn 40. He became a National Advocate for MS Australia in March 2015. This is his story.

 

MS and genetics: Is it in the family?

I was diagnosed with MS at the age of 31, four and a bit years after moving from England to Australia. The diagnosis was a shock, but then again, it wasn’t. My mother, Diana, has MS. She was diagnosed when I was in my third year at uni, so must have been well into her 40s. I didn’t grow up with MS, but it has been there all of my adult life.

I was young, fit, and (I thought) healthy. I ate well, and I was active. I had just finished playing rugby, and I rode my bike to and from work every day. Kate and I worked long hours, and lived well.

And then, one night, shortly after getting home from work on my bike I lost the peripheral vision in my left eye. Kate called an ambulance, and I went to the hospital. I went through all the tests for heart attack, stroke etc, all very confusing for a young, fit person. My vision had come back quite quickly, long before I even got to hospital, so I was sent home after these tests and told to rest; it was a worrying episode. After a few months of being tired all the time, my Mum started to suspect it could be MS. And so I forced the issue with my GP who referred me to a neurologist, who thought my lack of vision was due to migraines not MS. I had a MRI and what do you know, they found the lesions.

MS is a nasty piece of work, but it depends on where you get your lesions. I think MS affects my vocabulary… sometimes when I'm speaking I can't seem to get out the word I want to say. I know the word, I can ‘see’ the word in my mind, but it's just out of reach, and I can't form it to say it. The word I ‘see’ is always yellow, by the way. This used to frustrate me no end. But now I just let someone fill in the word for me, and I say thank you and move on. One day soon I think I’m going to start experimenting with cue cards, probably in yellow, to see if it helps!

Although, in my view, the diagnosis of migraines missed the mark, I now get them quite frequently. They happen when I’m overdoing it, and am run down. For this reason, I can feel them coming on, sometimes hours before they arrive; I stop what I am doing and go to a dark, quiet room and meditate. Meditating helps.

But these are not everyday occurrences; day to day, it is the fatigue that gets me. I have learned to manage it, but it requires conscious effort. I limit my activities on the weekend and sleep during the middle of the day most Saturdays and Sundays. Ciarán is only 2, and so we take our naps at the same time. Again, I learned this from my mother – she naps frequently, and it helps her manage.

Seeing the way in which my mother lives with MS was – and is – a critical factor in how I manage my MS. Seeing others with MS, particularly if their disease is more advanced, can be scary. My mother means I have always a positive MS role model, for after 20 odd years she is still going well. She uses a walking stick, but she is still fully engaged with her family and her community. She lives her life as she chooses, including traveling from England to see her grandchildren every year.

MS is one of those things… It can be both a multiplier and a mask. You are always asking yourself ‘Are they just pins and needles, or is it my MS playing up? Is this just a headache, or is this an MS migraine?’. MS causes you to second guess yourself. You can slip into a negative frame of mind. At worst, you can use MS as an excuse, as something to hide behind when other things aren’t going well.

I consider myself to be lucky. I don't take any medication for MS. Eight years in, I look after myself. I avoid dairy, even changing the coffee I drink to make that easy day-to-day. This means chocolate is a no and I do miss Mars Bars and a cheeky caramel slice. I don’t really drink much, definitely not on ‘school days' because MS has changed my ability to bounce back. I have a fragile balance between feeling good and feeling bad, and alcohol tips my balance too easily. And critically, I make sure I exercise: riding to and from work religiously, rain, hail or shine (in fact, as with lots of people with MS, it’s the heat that’s the hardest to cope with. Give me the cold rain every day over the heat and that wind!)

These changes haven’t been difficult to make. And I get very frustrated with people who complain about their diets. I think ‘It is not that hard: make your choice and stick to it’. But then again, maybe I feel that way because for me it is not a choice. It is how I cope with MS. Just another example of how MS changes how one looks at the world.

Kate has a clinical approach towards my MS, which is helpful. She works in healthcare and understands what MS is. She is great at helping me with my diet and other lifestyle interventions. She is incredibly level-headed. Still, she hates the fact that I have it as it affects what we can do and so often things take longer then they should as I need to have a kip. I understand: I hate it too.

My younger brother Doug doesn’t have MS. We both moved away from home when we finished school in England – I moved to Scotland and, after a stint at uni, he went to Spain. Given the emerging linkages between MS, Vitamin D and sun exposure, I often joke that I went north to get MS (Scotland not being renowned for either sunshine or diet), and he went south to avoid it.

I haven’t asked my mother how she feels about my having MS. We talk a lot about how it's affecting us on any given week. MS is what it is, and there is no-one better to talk about with than another person who has it! Having said that, my mother, both through nature and nurture, has given me the most important thing needed to cope: resilience. She has a stubborn refusal to let MS dramatically affect her life, and I try to do the same.

Before Kate and I had kids, we did think about whether MS would pass to my children. Even though I am not aware of any research that suggests MS has been passed down through three generations, I suppose it is a possibility. MS is a new disease and the ability to diagnose MS wasn’t great until recently… Maybe there have been lots of families with three generations of people with MS, and we just didn’t know. But I am hopeful – I do not want my children to have MS.

Kate and I try to help our kids. We think about how our lifestyle choices might impact them, and we try to make choices that are in their best interests. We make sure they eat well, and get plenty of Vitamin D as they grow. Of course, this can be difficult in reality. Dairy is a well-known contributor to inflammation (which is such a key factor in MS) but it is also essential for growing kids. The same goes for Vitamin D. Low Vitamin D levels are considered a risk factor for MS, but of course high sun exposure comes with its own risks. So we try to find a balance – interventions that may be useful avoiding MS, while still making sure they get what they need for growing bodies.

 

What MS requires of our loved ones: Questions to ask

Our family is going through a period of change at the moment – at the end of 2015 Kate has just returned to work, and Lila is preparing to start school in the new year. I haven’t asked Kate directly how she feels about the fact that I have MS. I probably should. I know she is struggling because we have so much to do, and I can’t help as much as I would like. If I stay up late to do something around the house, I struggle to get up for work the next day.

With MS, we have to plan ahead, and I have limited capacity each day. For example, I divide my day up into three lots (morning, afternoon and evening), and I can 'do' stuff for any 2 of those 3 lots; 1 of them has to have some form of rest. That leaves me with less time than I would have if I didn’t have MS. So as a family we have to choose: either something doesn’t get done, or Kate picks up the slack. It is hard on her.

It has been six weeks so far, and I have started to notice the amount of work she was doing at home. We simply can’t get everything done, and I am not able to help as I would like. We are considering outsourcing some of the work (eg by hiring a cleaner). Although that is a financial decision we have to work out the value of the time we can have together as a family against the outlay.

Having MS means I make financial decisions differently than I otherwise would. And sometimes Kate and I are not on the same page. Actually, I think I drive her crazy. My primary goal is to pay off the mortgage, because if I have to stop working I don’t want us to have to deal with a mortgage. But focusing on that means I don’t want to do other things - the hot tub will have to wait! Still, we understand and respect each other’s opinions – we know we are both looking out for our family.

Living with someone with MS requires a certain amount of give and take, probably more give than take. There are days when Kate is obviously tired or when she has had a bad day. She needs some downtime, and often I can’t give it to her. I wish I had the capacity to give it to her, but I don’t. I can’t. I think (hope?) as the kids get older it might become easier.

There are some days I struggle at work. But I know if I can just get through the day, I can go to my home and family and I can rest. Kate enables this. She does so much for me, and for the family. On the days I come home shattered from work, she handles everything. I feel incredibly selfish, but she just gets on with it.

Using the example of the cleaner from earlier, being able to do that will enable me and, just as importantly, Kate, to keep working. I have questions about the NDIS – will cleaning services be available if I were to nominate staying at work as my MS goal? Because staying employed is so important to me. The confidence and self-worth that comes with employment is incredibly valuable... I think of employment as a ‘force field’ for me. I believe keeping people with MS in employment is a fundamental goal the NDIS can facilitate.

 

My hopes and fears: MS and employment

As I said before, I am one of the lucky ones. While I have a chronic degenerative disease, I have a relatively benign form. I work a full week. I am (as much as I can be) fully involved in family life. My balance is not affected and I can still ride my bike. I credit this to lifestyle choices and to my mother (and to that precious gift of resilience).

A decade ago, I worked long hard hours at the office. Kate was working too, and we would often leave for work or travel home together. It worked for us. And I had ambitions; I knew where I was going. But then MS happened. And those long hours weren’t possible anymore. That was psychologically very hard for me, as I equated my success with the hours I worked. When MS took those hours away I feared it would take away my success too.

It is still a source of fear – what will MS do to me and my ability to work? But I have a better handle on it these days. I know it is my ability, not simply the number of hours, that is valuable. I have accepted where I am in my career and the progress I continue to make, and I am happy with my achievements. I am successful, and I still have ambitions. I am just not aiming for the top of the tree anymore. Perhaps that has come with age and maturity, perhaps that has come from MS. Probably a combination of both.

ANZ is a very supportive organisation. What they have done for me is to enable me to fulfil my role at times when I am able. My employer demands quality performance outcomes and not time in the office. This means they get the best out of me.

I cannot overstate the importance of the support I get from ANZ. I ‘came out of the MS closet’ at work in 2015. Frankly, it was scary. I didn’t know the response I would get. But the support from management and colleagues has been enormously positive. MS is a part of who I am, and I realised that most colleagues had never known me without MS. It was heartening, as most responses were ‘I had no idea’, to which I replied ‘that is my point’. MS doesn’t change who I am. And I am grateful colleagues haven’t changed their expectations of me. But I am now able to be more open about my time. At the moment I have every second Thursday off, so I can be at home with the kids while Kate is at work.

I want to be the master of my own destiny, and retire when I choose. And I want to work for as long as I can. This insidious disease stops people from working, or makes them stop before they want to. I read that the majority of us stop within ten years. That means I have two years left before I hit the average time post-diagnosis when people stop work. But I don’t intend to stop, I don't want to stop: I will keep going as long as I can.

Who knows what the future will bring. Perhaps one day Kate will work full time and I will work part time and look after the kids. We shall see what the future brings.

That said, I am scared of working less. When I have time off, I struggle. That 'force field' seems to lose some of its strength. I worry that if I stop, I might let the disease in the door, so to speak. I don’t feel the need to nap at work during the week. I don’t really understand my psychology or why that is the case, I just know I am scared there is something in my work ethic keeping the MS fatigue at bay, and that if I were to work less I would need to sleep more.

 

Life with MS: Re-evaluating priorities

With MS, I asked myself what the best use of my time is. And I decided it is family and work. Everything else has to give. Of course, this is not unique to Kate and me – every family struggles to do it all. I just find that with MS in the mix, there is less room to manoeuvre. Everything is just that bit more difficult.

MS teaches you to prioritise and be efficient with your time. They are life skills we all need, and by god, they are worth having. It one of the best lessons I have learned.

MS has also made me a better manager at work. I am more empathetic, and I understand the importance of work-life balance for all employees.

I wouldn’t trade what I have for anything else. Yes, it can be shit, and I wish I had more certainty about my future and more capacity to help Kate. But I know my MS now, and I look for the benefits it brings to my life.

I genuinely feel happy that I have a life that allows more time at home with the kids. I don’t start work early as with MS I need the sleep. But if I didn’t have MS it's probable I would still be working long hours. This lifestyle change (enabled by my very supportive employer) means I see my children every morning. It means that I am a part of the daily family routine, and I love it.

I still don’t know when and how I will have the MS conversation with my kids. At what point do I begin to educate them about my health? About their grandmother’s health? About what it means for them? They are too young to comprehend now, but Lila may soon start to understand. They know I need to sleep, and that sometimes I just can't do something with them, they just don't know why yet. Figuring that out is the last piece of my MS puzzle.

I think those of us with MS like talking to others who have the disease. It helps us understand what we face. My mother and I always talk about it - I think she's glad that we're managing.

And that is why I became and Advocate for MS Australia and I am sharing my story.

 

Bek Paroz for We Don't Talk About

Working through the pain: A life with Rheumatoid arthritis

Becky Paroz

Redland City, Queensland

Becky is 41. She grew up in a dysfunctional family environment, exposed to alcohol-fuelled violence from an early age. At 18, when she was already living away from home, she was diagnosed with rheumatoid arthritis and lupus. She was told she should expect to be in a wheelchair by 24. After flirting with suicide, Becky has defied the diagnosis – although in pain each and every day – and lived another 23 productive years (and counting).

 

Navigating a diagnosis without a support network

The onset of my disease was sudden. I was 18, and I went from walking a few kilometres a day to and from my job and university to being unable to hold a hairbrush or manage my own buttons. I became a wizened old thing with a twisted body overnight.

The doctors didn’t understand what was wrong with me. And so my diagnosis was something of an event, and came after a series of tests that took more than three months. During those months the doctors had all sorts of theories: leukaemia, lupus, a rare form of cancer, and even ‘something in my head’. The finally checked for and confirmed rheumatoid arthritis. They also confirmed I have bouts of lupus (systemic lupus erythematosus) and I am at risk of medically induced lupus (where lupus flares up as a result of medication).

I was told that there was no known cause or cure. Both my specialist and my GP told me to prepare myself for life in a wheelchair by 24. They thought this because I have a particularly aggressive form of the disease, marked by the rapid onset and evidence of bone degeneration within the first few months. They went so far as to tell me I was more likely to die of side effects from the medication I would need than anything else.

Pain was my constant companion. And I felt very alone. It was a hard lesson: how little some people want to know about the problems of others. I realised that if anyone was going to care, it would have to be me.

I was already living away from home and I didn’t know my housemates well – I was just an extra person to help pay the rent. They were not a support system; they were not family. And my family wasn’t supportive in any case. People asked me what was wrong, but I could see their lack of interest as soon I tried to explain. It was subtle, but after a while I just got used to saying that I had ‘overdone it on the dance floor’ or whatever excuse I could think of at the time.

There was no support in terms of the daily management of my arthritis, aside from more medication. The doctors had me taking 12 different tablets per day. There was cortisone, which resulted in weight gain, fluid retention and mood swings; short and long term anti inflammatory drugs (which put me at risk of as stomach ulcers and liver dysfunction); and immune suppressants to slow down my disease progression. The immune suppressants made me incredibly sensitive to sunlight. They also came with a little piece of paper listing death as a possible side effect. They don’t include that paper anymore. It was hard, being alone and reading that.

I was also told by the specialist that if I wanted to have a child, I should consider having one at once. Her reasoning was that the older I got while using the medications, the less likely I was to be able to have children. She also suggested pregnancy might ‘help’ my disease. I was 19 at the time, newly diagnosed with a chronic disease and still finding my own way in the world without a supportive family. Having a child at that point was not an option. And given my own history of family abuse, I already knew I did not want to bring a child into the world.

 

 

Trying to find my way

People had (and still have) no inkling of the emotional and psychological impact of rheumatoid arthritis. I was a young girl who had just escaped an abusive family home and was looking forward to starting life afresh. I was trying to make my own way, but I struggled to understand what it meant for the rest of my life.

Doctors, colleagues, family, and even strangers gave me various gems of advice, including ‘study is a waste of time’ and ‘just give up your career’. To be told that my life was over or not worth living was painful. They didn’t understand why I was angry and had no idea of why I needed answers. They seemed confused at my rage. But my anger was the only way I managed to not give up right then and there.

I was left to my own devices. I sought answers at Arthritis Australia. After I discovered that everyone at the local group was at the end of their careers and life, I started a Junior Arthritis support group. Those who joined expressed similar sentiments: they felt alone, and agreed there was a lack of understanding from peers and only limited support available. The older people had no relevance to us at all, they were not role models whose lives any of us wished to emulate. The group was successful, and Arthritis QLD eventually started a similar program. 

I also decided to do my own research. I studied anything and everything – crystal healing, aromatherapy, life coaching – to see if I could help myself. I found that while rheumatoid arthritis was common among young people, there was limited support catering for youth. Worst of all was the advice that was all too common… Terrible words like ‘just change what you do with your life’. The overwhelming message was: just give up.

I refused to believe that, and over time I have proved them wrong. Not one person early in the diagnosis asked me about me, what I was going through and how I was feeling. I think it is why I am self sufficient. To this day, I do not count on anyone.

 

Thinking of suicide

I was working for a local engineering design company when I was diagnosed. It was only the second job I ever had. My colleagues saw the changes in me – the physical issues, my tiredness. I was honest with them about what I was going through. It didn’t occur to me that my employer wouldn’t be supportive. Without warning, my boss sacked me on Christmas Eve. He told me I should focus on getting better. Three months later the Disability Discrimination Act was legislated in Australia. I was advised not to sue for damages, although I think this was because the local lawyers were all on good terms with my former boss, and they did not want to take my case. This was my first – but unfortunately not my last – experience of discrimination.

Without a job, I had to move back home… the home I had been desperate to leave. My mother had recently been diagnosed with schizophrenia and was in and out of mental health clinics, my father was not coping, and my two younger sisters were trying to finish high school. It was not a healthy environment for me to be in. It took several months, and I moved out as soon as I could.

But the experience sent me into a spiral. It was at this time I first thought of suicide. After everything I had been through in my childhood, it was arthritis that caused me to finally asked the almighty question, ‘why bother at all?’

I was angry because I felt as if my life had been ripped away, and the only advice I received was to just give up.

I was told to see a psychiatrist. I did. He sat there and stared at me for $200 per hour to wait until I would talk. He told me I was depressed, and gave me a script for an anti-depressant – without telling me that it was. He said it would help me sleep. It did. I took one tablet and slept for 26 hours. I found myself in a black hole. Looking back, it may have been a side effect of the drug. I saw black, I breathed black, I was nothing but black. I sat for three days. I didn’t talk, I didn’t eat, I didn’t move. I don’t remember anything but a blindfolded darkness without light or life.

At some point during those three days I made a decision to ignore those around me and make my own life. I was tired the lack of support from my family and the system. I was tired of their negativity. I decided I ‘would bother, but I would do so on my terms’. And so I set out to educate myself about my disease, potential therapies and even my own mind set.

Need less to say, after that experience I didn’t go back to the psychiatrist. But the blackness found me again, on a much greater scale, when I was 30. I was hospitalised for six months, and I believe it was because I gave into depression. I was so ill I had to learn to walk again, and they housed me in a palliative care unit while I did so. Palliative care is for the elderly and the infirm, who are placed there until they pass on. It is no place for young people. It was another life lesson.

I received disability benefits during that period, but I went back to work as soon as I could. Independence is one of my core values and I loathe relying on others.

  

 

Insisting on chemotherapy

In the first few years, I took all the tablets I was told to. I had incredible side effects, and was very unhealthy as I struggled to understand how to live with this disease. I ended up with blood clots in my lungs as a result of my medication. When that happened they just gave me more medication: this time, blood thinners.

One day my GP commented that I may have to stay on cortisone for the rest of my life. Given the side effects, I thought no way. And so I weaned myself off that drug. Once off that medication and after a few months with no further side effects, I started to get rid of the rest. After all, none of medications were reducing my symptoms.

I do not recommend anyone ignore the advice of their doctor, I am simply sharing what I did at a time when I felt I was not being treated in a way that worked for my body and my disease.

Instead, I read everything: scientific journals, medical papers, help guides, support books… you name it, I read it. And the more I read, the more I realised that the most important thing I could to do for my rheumatoid arthritis was to move. No matter the pain level, it was move it or lose it. I started exercising, focusing on tai chi. Over the years, tai chi has helped manage my disease without the side effects that come with the drugs. Moving is my therapy.

Five year ago, I asked my doctors to investigate chemotherapy for me after it started to gain traction in the arthritis community. I was dubious, but after years of pain the risks seemed worth it. This was my choice of treatment – the doctors did not automatically recommend it to me because I am still of child bearing age. In Australia it is an expensive off-the-shelf treatment, but if other medications prove to be ineffective in specific cases it is possible to receive chemotherapy through the PBS. I went through the process of demonstrating other treatments do not work for me, and after a bout of medically induced lupus (as a result of those treatments), I started chemotherapy.

I now receive large doses of Cytotoxin in an oncology ward every six months: each time there are two treatments two weeks apart. Simply put, the treatment turns off my immune system, reducing the progression and symptomology of my rheumatoid arthritis.

I have reservations about the chemotherapy, despite it being the best treatment I have had. There are profound risks: I have to watch my immunity around large crowds; I can’t be around people with contagious or transferable disease; I have nausea, headaches, and itches; and it cannot cure the bone deformities that have already occurred. But my disease progression has slowed.

Most importantly, I don’t have as much pain. Pain can slowly destroy your life, and when the pain is deep in your bones it erodes your will, no matter how strong you are. And there are other upsides: after my first treatment I was asked by a co-worker if I had undertaken a face lift. Chemotherapy has given me a freedom I thought I would not experience again.

I am now in my early 40s and doctors ask me how my joints are still flexible. My blunt answer is twofold: I didn’t listen to their predictions and I insisted on chemotherapy. A social worker once said that I am lucky that I am not in a wheelchair. That statement made me (and still makes me) furious. It is not luck. It is determination to keep moving, even when the pain is indescribable. It is determination to keep stretching, even when my joints are filled with muck and won’t move. And it is the willingness advocate for myself and try chemotherapy. 

 

 

Moving on from my family

These days, I have a wonderful husband, Jimmy. We have now been married for almost five years. Jimmy is an exceptional man. He doesn’t see my disease; he sees my strength. He doesn’t see the bone deformities; he sees my resilience. Few people have offered me the support that he gives naturally. He pulls me out of my difficult moments, when nothing seems worth it, and reminds me who I am. I am amazed every day that I have him.

I also have a few close friends who are a part of what I go through. They show they care. They stay in touch. They let me know they are willing to help. And they are there for laughs at any time. Having never experienced that kind of support before I think they are wonderful and I appreciate having them in my life. But I still hesitate to trust. I have been left alone before; it is a tough journey and one that I do not wish to re-learn. That is not a reflection on them, it is a reflection on my past.

In general, I have found people do not understand. I have been told eating apricot pips in the morning and drinking apple cider vinegar will cure me. I have had everyone – from a random plumber to qualified social workers – offer their ideas on how I should live. Most doctors simply want me to take anti-depressants. Of course I get depressed, I have a disease that is random, uncontrollable, and incurable! But I don’t just want a pill for it, I want answers. And at this point in time, there are none.

I ignore them all and keep doing what I know is best for me. I have chosen to manage my disease through chemotherapy – a controversial choice but one of the best decisions I have made. For me, it is better than the pills they were offering me, which were merely a control measure – they did not cure my disease and they were not as effective at slowing its progression.

I believe that while I experience pain, I do not need to suffer from it. It is a simple statement, but it has had a profound impact on my life.

As for my family… I stopped thinking about support from them a long ago. Your questions in this interview have caught me by surprise. My first response is ‘you mean there are families out there that are supportive?’

I have had no consistent support from my family since my diagnosis. My mother was forced to marry at 17 years old, when she fell pregnant with me. And my father was a selfish man. He passed away four years ago... It was one of the best days of my life when he died. I do not have good relationships with my sisters either. Apart from the obligatory ‘how are you going’ type questions, they have never asked what it is like to have a chronic and incurable disease. My mother now lives with my husband and I. I wish the rest of them the best, but I choose to have no contact with them. I have made a life for myself and will continue to live it to my rules.

As for children… I was brought up in an abusive household, and I was always fairly certain I did not want children. The medication I take means that having a child is not really an option anyway. If I were to take that path, I would need to be off my medication for a year. That may not even be enough, as I likely have systemic damage caused by my medication over the years.

My husband has a daughter from his first marriage, and he has always wanted more than one. We discussed it, but we decided that it was not worth the possible complications. And I am not sure I could live with the guilt if I were to pass on this genetic joker card to a child.

 

The quote Bek Paroz lives by

 

 

Understanding what has changed

The public's understanding of rheumatoid arthritis has barely changed since I was diagnosed. And the education or support I receive from doctors has not improved either.

I recently saw a doctor to treat an ongoing flu and asthma attacks. I asked him to check whether the corticosteroids he prescribed were appropriate to take given the chemotherapy treatment. He was patronising and said ‘I think that’s a little bit of an exaggeration, don’t you?’ He just wrote the script and didn’t check the drug interactions on the MIMS Australia database. I took the script, did my own check, and managed the outcomes myself.

As for the support services on offer… I have found that most on offer are about enabling people to feel sorry for themselves, instead of empowering them to take control of their disease.

A part of me thinks I should step up and be the voice that is missing… but I don’t want to focus my life on the disease. I prefer the mind set I have now, where I focus on living my life.

My advice to others with chronic disease is to educate yourself. Know more than your doctors about what you have – and by that I mean real education, not just the results of a google search. Read medical journals, scientific articles, books written by specialists. The more you know the better position you will be in to engage with, and make better decisions about, your own health.

Explore alternative medicine with a healthy dose of scepticism. Some will alleviate your symptoms, most won’t. Don’t let anyone stop you from trying something, but don’t be disappointed when it doesn’t work.

Get rid of toxins from your life as much as you can. Look after yourself and your environment.

Make your life a flexible as you can, in terms of work, play and people. Make sure those in your life understand why you might be fine one day and not able to walk the next.

Stay away from people who refuse to understand your circumstances. You will save yourself a lot of trouble by keeping them at a distance.

And keep moving, because it will be much harder to start again. Flex those joints whenever you can. I am currently writing a book called Just Keep Swimming! It talks about why it is so important to keep moving… I think the ability to just keep moving is the most important lesson I have learned.

More than two decades after my diagnosis, I am proud of how I have handled myself. I have filled my life with more adventures that most. I have jumped out of planes, flown helicopters, raced cars, studied, had a fulfilling career and travelled around the world. I am not inspiration porn, I am an example of what can be achieved with the right mind set and a healthy dose of determination.

Rheumatoid arthritis will only limit you when you let it. There is pain: accept it will always be there. Stay positive, have goals to live for, and surround yourself with people who care.

Getting on with it: A mother and business woman living with MS

Rachael Hendry

Toongabbie, New South Wales

Rachael was diagnosed with MS in July 2014 at the age of 33. She works full time, and also runs her own side business. She is married to Matt and they have two young children, Liam (age 7) and Rylee (age 4).

 

The problem with MS: It is so hard to diagnose

I always knew there was something wrong. I have lost my vision twice, and my medical history is full of unexplained incidents that left me feeling not quite right.

But I now know that my first MS episode was at 21, around 13 years ago. I didn’t pay much attention at the time – I was young and otherwise healthy, and with the confidence of youth I thought it would just go away. It did, and I forgot about it.

Looking back, I know it was a classic first MS episode. I had taken on a new management role at work and I was quite stressed. Out of the blue, one day my vision started to blur. I had never had a problem with my sight before. So I went to a doctor, who sent me to a specialist. The specialist sent me to hospital. The hospital did every test imaginable, including (as I later found out) tests for MS. But they diagnosed me with optic neuritis and treated me with intravenous steroids. My vision returned within two weeks, and I moved on with my life.

My second episode occurred in late 2006, six months before my wedding. I was at work, and once again I was stressed. This time I had pins and needles on my tongue. After about half an hour I went to the bathroom to look, only to find I was unable to open my mouth and my face had dropped. It happened that quickly. I was taken to a medical clinic, and they diagnosed me with Bell’s Palsy. I then went to my GP who confirmed the diagnosis. I suppose the diagnosis made sense: I remember having trouble with my tongue the night before, when I had been at a family celebration and I had bitten my tongue hard but did not feel it. I was treated with oral steroids, and my partner gave me an acupuncture type treatment suggested by my GP.

Despite two episodes that are in retrospect evidence of MS, I was not properly diagnosed until my third episode in July 2014, when I lost the vision in my left eye. Again, I think it was stress-related. I was working from home three days a week to care for my two children and avoid the three-hour return trip between work and home. My husband starts work at 5am, so this was important for our family. But my work needed me back in the office full time, and I knew I had to go back for financial reasons. I started panicking about how I would manage.

A few weeks later, I first noticed blurred vision and a sharp pain in my left eye after a hot shower. I now know that MS symptoms are worsened in extreme heat or cold. This gradually got worse over a few weeks. I went to an optometrist, and although he prescribed me glasses he suggested it could be MS. He told me to go back after a week. But after four days wearing the glasses I saw my GP, who referred me straight to an eye specialist. The eye specialist said my vision was perfect, but he could see my optic nerve was inflamed… and said it could be MS. He referred me to a neurologist at the MS Clinic in Westmead Hospital.

I remember sitting in the neurologist’s room. The question hung in the air: I could have MS. My husband didn’t want it to be MS, my mother didn’t want it, and nor did I. But when the neurologist confirmed it was MS, I was ready. At that point, the diagnosis was a relief. My health history was random and I had always suspected there a unifying underlying cause. So unfortunately, the diagnosis made sense to me.

But it was a shock: MS is life long. Once you have it, you just have to deal with it.

I felt ok that day, but I lost it the next night. It was just so much to deal with. My husband was (and is) supportive and accepting. I am very lucky... Some partners get scared.

Now that I have MS, I have found a couple of acquaintances that have it too. I find it helps to talk to them about MS. 

 

Lesson learned: MS and stress do not mix

I look after myself these days. I know when I need to take a break and I pay attention. And if my symptoms continue, I do something straight away. That is how I manage my MS: I listen to my body.

I am not sure if I can say the same for my medication. I sometimes think I feel worse from it than the MS itself. Immediately after I was diagnosed I started Tecfidera, which is two tablets a day. I wanted the medication as they said my relapse rate would be lower. But I developed a new lesion after one year, meaning my disease was still progressing. So I started the process to switch to Tsyabri, which is an infusion at the hospital every month. I love it. It is my relaxation day, I just sit and play on my phone or read a book for the couple of hours.

But I wonder if I need the medication. I am still taking it because it is the right thing to do, but the question has entered my mind. My next MRI will be in January 2016, and I am hoping for no new lesions. But I am not so scared of relapses anymore.

When I was first diagnosed I was convinced a relapse would happen on the train and I would fall on the train tracks and die… Now having a relapse – even losing my vision –  isn’t as scary as I first thought. Still, MS does get me sometimes. I had my fourth episode in late July 2014. It was the result of extreme stress, and shows just how much MS can interfere with your life on hold when it is least wanted.

In early July 2014, my husband and daughter were involved in a serious car accident – both ended up in different hospitals after someone drove into them in a head on car accident. I was on the way home from work my sister-in-law called call with the news that my husband and daughter had been in an accident. That hour home on the train was excruciating. Nobody could tell me anything. I hope to never be in that position again. I remember getting off the train with my legs feeling like jelly. I ran to the hospital but I didn’t know where I was going… Luckily my sister-in-law picked me up. I was a mess. I stayed overnight with my daughter, and my sister-in-law stayed with my husband (who was discharged at 2am the following morning). I later found out that the police and the ambulance at the scene couldn’t believe my husband and daughter even got out of the car, the accident was that bad. Strangely, that makes me relieved… I wasn’t so worried and stressed without reason.

But a few weeks after the accident my toes and feet became numb. Within a day I had trouble walking. I called my neurologist, who I had seen the week before for my standard six monthly appointment (which I passed with flying colours). I told him everything that had happened, including the car accident. He told me to come in and see him again. When he performed the physical exam I failed the standard tests – I couldn’t feel the vibrating tong anywhere on my body except for on my sternum. I was walking like a 90-year-old lady, and not in a position to care for either my daughter or husband. I started the intravenous steroids that day.

Matt was supportive, even though he was still recovering. He let me do what I needed to do to get better. By that time he was over the worst of his bruising, but he was still tender and had pain. Having the kids made recovery for us both hard – we were not able to lift them or play with them like usual.

Still, I have a lot to be thankful for. My neurologist is fantastic. I can call his receptionist and tell her what is going on, and he calls me back if it could be MS related. He makes the time. And if I have to see him, he never makes me feel like I am butting in on his time. He tells me what I need to know, but never enough to frighten me. Every time I ask him how many lesions I have, he tells me that I am average. That makes me feel good: having the ‘average’ type of MS feels like a good place to be!

 

Working and raising kids: MS makes it complicated

At the moment I work full time as a help desk consultant. I have been with the same company for almost 16 years and they are very supportive. I told them as soon as I was diagnosed, and they said they would help with whatever I need. They always have. And it means so much to me: it makes me feel normal. I have also started up a side business in an attempt to cut back on my daily travel. At the moment, I spend three hours a day travelling to and from work. It is tiring. If that works, I can cut back a day or two and continue with my side business.

Even on bad days, I can’t just throw my arms up and stop whatever I am doing. I have to be there for my children. And so since my diagnosis, we have decided not to have any more children. I have two perfectly healthy children and I would hate for a third to make me sick or increase my relapse rate, meaning I would not be able to look after them. I love children, but knowing what MS may bring means we will stick with just two. I often ask myself if I knew I had MS would I have had my children… and I can honestly say that I would have. Just because I have MS doesn’t mean they will. MS chose me. But I would hate for it to choose one of my kids… I’m not sure that I could manage that.

 

The importance of tolerance and understanding: Using MS as a life lesson

My kids are my reason to keep going. Last year we did the MS Walk and Fun Run, and they saw people at all stages of the disease. I felt it was important that we did it together, as they are beginning to understand what MS means.

I try to stay positive. The kids will grow up with my reaction to it, so I am determined to set an example. They know they can ask me questions at anytime. As soon as you say to someone you have MS, well… often the understanding isn’t great. So I tell my son ‘mummy has MS, but I am normal. I am just like any other mum’. They are both supportive. MS doesn't frighten them.

I haven’t explained to the kids where MS could go, as there is no need yet. But my son is almost old enough and if I need to I will tell him more.

I am trying to teach them tolerance. Lots of people have problems, but it doesn’t mean they shouldn’t be treated with respect.

My sister is a personal trainer and she did a case study of my MS. I work out with her and we exercise, so she keeps an eye on me and knows what to look for. My brothers don’t want to talk about it much, but they do ask how I am. My eldest brother promised to call more often and I laughed. I told him ‘I’m not dying, I just have MS’.

MS hasn’t had a huge impact on my life yet. But I am open to whatever I have to do in the future. I just want to be around for my kids. If I end up in a wheelchair, that is fine as long as it means I am here for them. I think it could be a lot worse – I haven’t been given only a year to live.

The thing I find hard is that people are frightened of the idea of MS. It frightens me too, but I am living it. I know how I feel, and I know I am ok.

My mum thinks I do too much and that I should rest more. She wants me to give up work, stay at home and hire a cleaner. But I am not that type of person. She can overreact sometimes, but she is getting used to my MS.

I am just going to keep going until I can’t. I haven’t given up working – I don’t want to stop and for things to change. As long as things keep working, I will continue doing what I am doing.

I am a positive person, and MS won’t change that. I haven’t done anything wrong, it is just that MS chose me.