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.

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.

Surviving anorexia, depression and someone else’s suicide

 

Ashleigh Hill-Buxton

Collingwood, Victoria

Ashleigh is 25 years old. Petite, pretty and obviously a determined perfectionist, she is already an old soul. She overcame anorexia and completed one year of a degree in journalism, before dropping out of her second year when her ex-boyfriend took his own life. Two years later, she is building her first home.

 

Growing up with depression and anorexia

Mum is a family lawyer, and dad a truck driver. I am the eldest of their five children, with three brothers and one sister. I still live at home, but only until the house I am building is ready.

We were, and are, a happy family.

But I’ve always had depression and anxiety in me. As a teenager, I would sleep ten hours and wakeup tired with the world. I was formally diagnosed with depression back then, although I wasn’t medicated.

I have always been a perfectionist, and I was recognised as gifted in school. But in my quest for perfection and with my desire to be the best, I became anorexic. I stopped eating in my last year of school, after I fell out with my friendship group.

My mother helped me to seek treatment. At the end of that year she took a photo of me sitting on the beach. She took it from behind, and you can see every one of my vertebrae and most of my ribs. It is not a nice image. After that, my GP took me to a psych ward to show me where she would put me if I didn’t start to help myself. It worked. I slowly started to return to a healthy way of eating, and even now I feel lucky I recovered.

But anorexia is not the defining story of my life.

 

Surviving someone else's suicide

Dean died on 17 March 2013.

We first met in primary school, and then years later when I was 21 and he was 23. We had lost touch through our high school years when I went to a private secondary school and Dean to a public one. I knew he was nuts when we re-met, it was obvious. But it didn’t matter.

The thing that I loved, that I needed, was that Dean understood the darkness in me, the ugly parts of me. He understood the girl who had once chosen not to eat, the girl who felt the darkness in the world. I was drawn to him.

And Dean was good at love. Flowers, letters… He would have walked across broken glass for me. And he was fucking handsome. Blue eyes, muscles, scars galore. A smile that was both sad and happy... and that smile is how I knew he was broken.

Dean was a self-harmer, and he abused alcohol and drugs. He was diagnosed with depression and bipolar disorder, and took Effexor for the former and Seroquel for the later. He saw a counsellor a few times, but those sessions had little impact. He went for me, not himself. He preferred to fight his battles alone.

He became my world when I was with him. I wanted that, at first. I thought I could keep him afloat. But soon I was sucked down. Soon, it wasn’t my choice. He said he couldn’t exist without me, and I thought he might attempt suicide if I wasn’t there. He took over my life.

God, the battles that we had… I spent my time trying to fix him. I was hell bent on trying to save him from himself.

We were together for 18 months. Our song was ‘Wicked Game’ by Chris Isaak, and the lyrics tell you everything. ‘The world was on fire and no one could save me but you… I never dreamed that I’d lose someone like you’.

It was always tempestuous, and sometimes dangerous. The number of times I scrubbed blood out of the carpet... (Ashleigh shakes her head when she says this, remembering the practical reality of looking after someone who didn’t want to live).

Dean stayed away from substances when I was with him. I wouldn’t tolerate them. But when I was not there he went straight back to them. And so I watched him decline. By Christmas 2012 I realised the toll the relationship was having on me. I started to pull away.

At the end of January 2013 Dean slit his wrists in the bathtub because I wanted to sleep after an exhausting day at work instead of visiting him. He sent me a goodbye text, so I threw on some clothes (there was no time even for underwear) and drove to his house, calling 000, his mother, anyone on my way. We found him unconscious in the bathtub.

That was one of the toughest nights of my life. I accompanied him in the ambulance and to the hospital. He refused to be sedated or to let anyone stitch his wounds. He refused all help.

Dean spent more than three weeks in the hospital, and I visited everyday after work. I didn’t want to, but I felt I had to. And I came to hate my life. I knew I couldn’t help him and I needed to start helping myself.

Those close to me knew that before I did. My parents wanted me to distance myself from Dead long before I did. While they were sad to witness what was happening to Dean, they could see what it was costing me. At this point, my siblings and I had almost no relationship, and I wasn’t close to my dad either. My mum was at the end of her rope. Everyone was extremely concerned for my wellbeing.

I drove him home from hospital. At least, I tried to. In the car I told him that, now that he was out of hospital, our relationship needed to be on hold while he focused on his health. Dean tore open his bandages right there in the car, opening his half healed wounds. I turned the car around and drove him straight back to the hospital. But the hospital wouldn’t take him. So I took him to his father. Days later he ended up back in the hospital after more self harm.

His father called me and told me to stay away from his son. I agreed; I knew the relationship was toxic. Dean didn’t stop trying to contact me, but I didn’t respond. I needed to heal.

After he was discharged again, he ended up living at a friend’s mother’s house. His parents, who were divorced, couldn’t (or wouldn’t) look after him. His parents were divorced, and they had spent a lifetime looking after Dean. They were at breaking point… They didn’t know what to do with him.

One Friday he called and called and called until I answered. He told me to visit him. I said no. He threatened to jump in front of a train. I didn’t know what to do, so I hung up and I called both my mother and his. My mother took my phone away from me for the night. I understand why, she was trying to protect me. Dean kept texting throughout the following day, but I remained faithful to my mother and did not respond. I did, however, contact his friend and tell him to look out for Dean. The friend went to check on him, and reported back that he was ‘drunk but fine’.

I didn’t hear from Dean on Sunday, and I was surprised but pleased. I thought he might be coming out of it. But at 3:30pm that afternoon, Dean’s mother called. I was at work and I didn’t answer, but she kept calling. Then his father started calling. Eventually I went to the bathroom (we were not meant to take calls at our desks) and answered the call, and his mother’s partner said there was something they needed to tell me.

‘I’m really sorry that Dean has passed away’, he said.

I hung up. I lost it. I collapsed in the bathroom sobbing. My manager took me home, and I stayed in bed with my best friend and mother crying for the next two days.

At that point I didn’t know how Dean died, but I imagined it.

There was guilt. Profound guilt. He needed help, he needed saving. And I didn’t help him, I didn’t save him.

I later found out that Dean overdosed. At first they weren’t sure, as the scene looked suspicious. I had to talk to police and tell them what I knew. It was traumatic. The autopsy confirmed that he had taken 250 pills – Effexor and everything else he had around.

I have not spoken to the friend who deemed Dean ‘drunk but fine’ about it. There is nothing to say.

But I did speak at Dean’s funeral; I was determined to.

The funeral was terrible; funerals for young people are terrible. And no one really understood. His father came the closest, saying ‘Dean had a cancer in his mind’. Everyone else just kept referring to a ‘tragic accident’. But it wasn’t an accident, Dean took his own life. And although his absence causes other people pain, I think he is better off... Dean hated being alive.

 

Being an old soul in the adult world

Dean is dead. We buried him. But that doesn’t mean he is gone, and it definitely doesn’t mean the grief is gone.

Most people I knew had never liked Dean, and they didn’t understand my grief and why I mourned him. They thought he met the end of the path that he had so obviously chosen.

And that is when I started to battle for my own life.

I flirted with death. I thought about dying… I imagined myself in a train wreck. I imagined driving my car onto train tracks, or jumping in front of a train when I was waiting to catch one to work. I just lost the will to live. I had suicide ideation, but I wasn’t suicidal. Suicide means an active wish to die. I was more passive… I just didn’t want to live anymore.

My relationships with other people, including my siblings, went downhill. My mother pushed for me to see a psychiatrist and to take medication. She was convinced there was something wrong with me, and I started to think so too. And so after Dean died I took Prozac for a year.

There is a difference between grief and depression. But for a while I was a mess of both, all mixed up together. I was angry that people didn’t understand – I was broken. To this day people hold that time when I was angry and sad against me. The biggest problem people had with me was my lack of filter. I just didn’t care about the little things anymore; the polite pleasantries we are all supposed to conform to. I didn’t have the energy. Even today, I rarely have the patience for them.

The death of someone young is different. There is depression and grief, of course. But there is also a feeling of injustice, of someone gone too soon…

But the death of someone you loved intimately is different too, someone you loved and tried to save. I grieved for Dean, I grieved for our relationship, and for what might have been. But I also grieved for my failure to save Dean, for the fact that I was still here and Dean wasn’t. For the fact that no one could have saved Dean except himself, and he didn’t want to. And I felt guilt. For there is a guilt to surviving, to being the one left alive.

Seeing the psychiatrist didn’t help, and ultimately the drugs didn’t either (although I think the fact that I went along with what the medical profession has to offer gave other people comfort).

Instead, I learned to help myself. I take joy in the little things these days – I cook, I exercise, I read, and I spend time with my friends, especially Liana. The day I realised that the friends who had stuck by me were true friends was wonderful. Liana is my best friend, but more like an older sister. I can’t imagine my life without her. She is one of the few to understand why I am still sad, and why I still need to talk about it.

And that is what brought me back to where I am now. I collect happy moments, and I don’t focus on what is in my head.

And perhaps most importantly, I acknowledge what has come before. I live by this Lemony Snicket quote: What happens in a certain place can stain your feelings for that location, just as ink can stain a white sheet. You can wash it, and wash it, and still never forget what has transpired – a word which here means 'happened, and made everybody sad’.

I still think about Dean. He is the ink stain on my white sheet. The pain has passed, but the memory remains. People think that the door of that chapter of my life is closed, but that door is warped now… It will never close fully. I have had no contact with Dean’s family. Our contact ended naturally. I think they know I still visit his grave.

I stopped taking the drugs a while ago. My mum doesn’t know I am not medicated… She will find out when she reads this interview. I told my grandmother a few weeks ago. And I hope my family knows I would never put my them through what Dean put his through.

I think the question of whether to take medication is a personal one. For me, medication is only a temporary solution to a lifelong problem. And so I am trying to live my life with a lifelong solution. I was anorexic as a teenager, and depressed as a young adult. I need to find the right path for me.

My new partner, Kinsleigh, is seven years older. He works at the bank too, and when we met I told him I was fucked up… But he still thought I was cute. He had a rough start to life and has a maturity that I crave. His sister committed suicide nine year ago, and so he understands. He sees the dark in me, and for that I am grateful. He just lets me be.

Kinsleigh’s birthday is 17 March… the anniversary of Dean’s death. And so I have come to terms with the fact that Dean will always be with me. Everything he did made sure of that, although I sometimes wish he hadn’t.

 

Where I am going now

Like all good things, I am a work in progress.

I am beginning to understand that just because this happened to me doesn’t mean I am worth less.

For anyone feeling like I did, I want to let you know that you shouldn’t be afraid to let people know you are back to your old self, or not, as the case may be. Because an experience like mine, it stays with you.  My time with Dean is a part of me. To have never experienced that time… I would not take it back.

As for the future… I love Kinsleigh. But if I have children, they might end up like me. And that is ok. Because I will teach them that they can come out the other side. Just like I did: I am now a functioning adult, and I do adult things (she says, laughing).

I would like to finish my degree, but there is no time. I am building my first home from scratch... But in the future, yes, I would like to go back to university.

The good thing about my story is that I have come out the other side. It is possible. I now have mental strength that many people don’t have, and my perspective is different, because I know how real, how permanent, loss can be.

And I understand that I have a choice, we all do. It took me a while, but I chose to live.

Living and training with ulcerative colitis

Kane Picken

Elderslie, New South Wales

Kane is 35 years old. He is a husband, father, son and athlete. At 31, he was diagnosed with ulcerative colitis. Even though he looks healthy, the disease fundamentally changes his life – adding pressure to relationships and limiting daily activities, sometimes to the point of being unable to leave the house.

 

Falling sick the first time

I was living in Toronto in Canada with my wife, Diana, and training hard for the Louisville IRONMAN. It happened all at once, it just came over me. I’d gone out for a run on the trails, and all of a sudden I needed to go to the bathroom. So I did, right then and there in the bush. There was blood.

I lived with it for a few weeks, dealing with it myself. I didn’t really want to engage with it. I was a fit guy training for triathlon. I didn’t feel – or look – sick. But a pain started in my left side and it didn’t stop. Finally, I told Diana that I needed to go to the hospital.

Diana’s best friend worked at the hospital and fast-tracked me through. They did a bunch of tests, and I was diagnosed with ulcerative colitis that night. They gave me pain relief and told me that in addition to the colitis, I was dehydrated from the training. They then told me to taper back my training, which I didn’t like.

I recovered, and I thought I could still do Louisville. I had been training for it, after all. One day when the temperature was high – too high to work outside – my employer sent us all home. So I went for a run. But as I was running I realised that I was overheating and I couldn’t train properly. Later, at home, I grew cold (even in the 40C heat). I was hallucinating by the next morning, and by lunchtime I knew I needed to go to the hospital.

They told me I was severely dehydrated again. Then they put me in the ICU. I had a pipe in every hole: a catheter, tubes, needles. They said I was at risk of organ failure, and they thought I was dying. I even got rigors and was shaking off the table. At no point did I think I was dying, although the rigors were doing my head in. Because of them, I couldn’t even lie still for the scans.

I stayed in intensive care for two days, and in hospital for a week. I am a fit man, with a resting heart rate of 50. To this day they don’t know what happened to me. They told me I am a medical anomaly; they even wrote about my case.

Still, the doctor said it was all my fault, that I shouldn’t have been training. That was a big turnaround for me. I was fit, I had done triathlons before and I was training for an IRONMAN.

And colitis isn’t my fault.

There is no known cause or cure for ulcerative colitis (or Crohn’s disease, which it is similar to). But I think stress plays a part, at least it did for me. When I first got sick I was stressed: I was training hard and living in a country I didn’t want to be in. And maybe it has something to do with genetics as well. My cousin has IBS, and my grandmother died of complications with her bowel.

 

Learning to live with it

I never even knew what ulcerative colitis was until I had it. Apparently it hits males at around 30 or 50. I was diagnosed at 31, right on the money.

I can tell some good war stories. Actually, I have some disgusting stories to tell. My younger sisters cringe. But unless I bring it up, colitis isn’t a topic we talk about. I don’t think it is because anyone is embarrassed, I think it is because they feel sorry for me. I don’t like that.

And it helps me if I can tell them the truth, that I had to run to the car today and shit in a box.

It is always the worst in the morning, but the morning is when I train. That has meant some pretty bad moments. When I was younger I was pretentious. If I was this sick then, I would have necked myself. Now, I’m used to it. I’ll shit anywhere. I’ve lost count of how many times I’ve shit myself – this year has been hard for that. We’ve had to buy a port-a-loo, and I wear nappies. It isn’t pretty.

I know I have a chronic disease, but I really could do with less shit.

 

Taking the meds

I’ve had all sorts of drugs. I hate prednisone, I think it is a cop out drug. It has ruined my teeth. I’ve also had hydrocortisone.

At this point I feel obligated to disclose to Kane that I carry a prednisone script in my handbag. My neurologist gave it to me after an unfortunate trip to the emergency department for an MS relapse, and I now don’t go anywhere without it. Kane does not look impressed.

I want to be med free. As a kid, I didn’t even want to take Panadol. But I have been in a flare since November 2014, and so there are still drugs.

I receive Remicade via intravenous injection to put the disease into remission. Deciding to try that was a big decision. I previously took a similar drug, but it didn’t work for me. When taking that I could barely walk, I had to crawl instead the pain was so bad. Remicade is a new drug, with only a few years’ research behind it. But the real problem is that if you stop and start taking it, it doesn’t work. That means I will be having an injection every month for the rest of my life, although my doctor said I might be able to move it to every six weeks.

Hospitals make me anxious, being locked up in there is a nightmare. But I believe in doctors. They have helped me – but only the ones that treat the person, and don’t just do whatever a textbook says to do. My doctor has done a phenomenal job with me. I feel looked after.

And so I take the medication she prescribes, but is frustrating. Taking medication reminds you that you are sick. At the moment I take seven different medications. Some of them are up my arse. It isn’t fun.

I saw a naturopath. I believed in everything he said, but I was too sick at the time for what he had to offer to help. Still, I think the more natural stuff I take the better off I will be.

I watch what I eat too, I know what makes me sick. Beer was a side passion of mine, but now I am doing myself no favours if I drink it. It is hard to give up, like so many other things.

 

Looking after myself

The guys say to me that I look fine. And when I look at myself in the mirror, I do look fine. Even with this flare, I tell people I am at 85 percent, that I am healthy. I am well enough to train, and well enough to work. But it is hard.

At the moment, the hardest part is the urgency. If I’ve got to go, I have to go. Right there.

I’ve had all sorts of tests, including a sigmoidoscopy, where they insert a camera to take a look around. The tests are physically invasive, they require an enema first, and I end up having to take the day off work. I love the anaesthetic though. I’m almost addicted to that part, when there is no control and no pain.

I was diagnosed in Canada, but we moved back to Australia because I was unhappy there. The weather, my job, and of course the colitis. I think our quality of life is better here, although my current job doesn’t give me the satisfaction that I thought it would.

Everyone thinks it is my training that is making me sick. It isn’t, I can tell. My health has improved since I started training. Sure, you can overdo training sometimes. But for me, it helps. My intention is not just to do it; it is to win. I’m competitive, and people around me know that. And the training is good for my mental health, it is how I manage stress. My dad can attest to that – if we don’t do our training we get antsy. Years ago my dad took me for my first adventure race at Oberon, and after that I could smile again. I then did a novice triathlon, and I was hooked. It is addictive.

With the colitis, I’ve tried to get away from triathlon. I played cricket for a season in nappies. But I was so worried about needing to go in the middle of the cricket field I couldn’t concentrate. It was the worst season I ever played. I was wearing white, for Gods sake. And out there you have time to think. Thank god it never happened on the field.

I read Beyond Training by Ben Greenfield. It has helped me to just get on with everything.

You know, I lost another pair of underwear this morning. It just happens. But for the rest of the run I was fine. People shit themselves all the time in IRONMAN. I’ll just be one of the boys. But I don’t even think about it during a race. I think it is the adrenalin – it overcomes the urge to go.

 

Thinking about my family

My son Dante is three years old. Having him is where it all changed for me. I didn’t fear death until I became a father. With Dante, I feel a sense of responsibility, he is so precious.
And I don’t want Dante to have colitis. I’d feel 100 per cent guilty if it ever happened to him.

I feel bad for Diana that she is so close to her Canadian family, and I brought her to the other side of the word. I just wasn’t happy in Canada. I couldn’t make money there, as carpenters don’t work in the winter because it is too cold. Diana works hard here, and the long hours and my limited activities does impact our family life. I wish we had dinner together as a family each night. I get to eat with Dante, but Diana often isn’t home.

I often shake my head and wonder what I did to deserve this. I don’t want to become a burden. I’m glad I am the one that got sick, I don’t think I could handle it if I couldn’t help Dante or Diana. It is easier to deal with it myself. But things do get to me. Like the colitis. I fight back, but it is hard. I can be angry, even though I don’t often show emotion.

The biggest thing for me is that I don’t want anyone to feel sorry for me. I don’t need it, and I don’t want it. Even though people don’t realise how sick I am, I can still compete against healthy athletes.

I always think of my family when I am out riding or running. And I wonder what I would be like if I wasn’t sick. But I have to keep pushing forward, I think that is how to live my life.

 

Planning for the future

Last time I was there they raised the idea of removing my large intestine and inserting a j-pouch (otherwise known as an ileal pouch-anal anastomosis). A j-pouch would connect my small intestine to my rectum and I could control my stool. It could be that, or a colostomy bag on my abdomen. That would get rid of the colitis. But it would have its own problems.

I’d rather just continue as I am now. I’d rather be dead than have a bag. I can’t picture myself living with a bag on me. I’m not embarrassed – I just don’t want it. I refuse, I just can’t see it happening. People think the j-pouch will improve my quality of life. But for me, it will just change one problem for another. I just don’t see it happening.

The thing is, until you get sick, you don’t appreciate life. I look back and I think it was all pretty easy, until colitis turned my life upside down. Now I don’t take anything for granted.

There have been other issues to. In April the doctors found polyps. I’ve never been scared before, but I was scared then. Polyps can be cancerous. If they ever find more there, or there is something wrong with them, I want them cut them out. It was nerve-wracking… they took photos of my insides. But I had another sigmoidoscopy in October and the results were good: the polyps are not cancerous and there is improvement with the colitis.

And so I’m in training again. I’m aiming Western Sydney 70.3 this weekend (a half IRONMAN), and I’m on track to make the start of IRONMAN New Zealand in March 2016.

I’m determined. To this day I have never been well enough to make the start of an IRONMAN. But I picture myself running down that final IRONMAN strip. It has eluded me so far, but I will get there. Maybe even to KONA. I’m going to get there if it kills me.

Anyway, I don’t feel that I will die. But maybe that is because I just do what I need to to get through each day.

After interviewing Kane I look up his medication, Remicade. Is decreases the ability of his immune system to fight infections (like Gilenya, my own medication for Multiple Sclerosis). The list of potential side effects is long and depressing, and includes infections such as tuberculosis and developing lymphoma or other forms of cancer.

Coming to terms with Parkinson’s disease

 

Rob Miller

Burwood, New South Wales

Rob was diagnosed with Parkinsons disease in 2010, when he was 49. He is now 54 and adapting to life with the disease. He has been married to Philippa since 1988 and they have three boys. When he opens the door and welcomes me into his house, I notice that he displays two signs of Parkinsons disease a rigid walk and masked expression.

 

The thing about Parkinsons disease

The thing about Parkinson’s disease is that you are unlikely to be aware that you have the disease for a long time, after the neuro-degeneration has well and truly begun. Not that anything can be done to halt the disease. The thief in the night!

Occasionally my left arm would shake during exercise. I mentioned this to a friend and he mentioned it to his wife, who happened to be a doctor. She sent me straight to a neurologist.

I had no idea that the the neurologist would tell me I have Parkinson’s disease. It was a shock. I was hoping there was nothing wrong, or at least, it was something less sinister.

I went to the morning appointment alone, and I was tying my shoelaces at the end of the examination when the neurologist told me. It was an ‘oh’ moment. But I continued about my day, it didn’t occur to me to change my schedule. I’m a lone wolf in that way, I just do what needs to be done. The news didn’t start to hit home until that afternoon. I felt confronted. Frightened. Alone.

Philippa knew about the appointment, but had to work that day. I hadn’t told my children. I’d simply put the appointment in my diary and turned up when I was supposed to. Philippa came to subsequent appointments. At those appointments we always talked about controlling the symptoms, but never about my prognosis.

Parkinson’s disease is a movement disorder and is linked to greatly reduced levels of dopamine being produced by the brain. As there are no tests to definitively diagnose the disease, other alternative diagnoses need to be ruled out. This can be difficult, as some symptoms can be confused with being tired or ageing.

I do take drugs, but the more they are used over time the less effective they become. I take a dopamine agonist Pramipexole which mimics the effect of dopamine produced by my brain. One of the potential side effects is compulsive behaviour, including hyper sexuality. I haven’t experienced that, unfortunately (he said, laughing), but my neurologist still asks whether I have every time I see him. I also take Levodopa, an artificial dopamine.

 

The impact on my work

I told two close friends, Andrew and Chris, before anyone else outside the immediate family. I just blurted it out at dinner one night, about a month after the diagnosis. Their reactions were quite touching. They were shocked, of course, as well as supportive. But the basis or our friendship is our friendship – not the fact that I have Parkinson’s Disease. I think they are looking out for me without being obvious. They judge how and when to bring it up, and they take their cue from me as to whether I want to talk about it or not. I tend not to bring it up, it is just the way I am. I think this is something for me to deal with and no one else.

I then informed my fellow Principals at the firm of my diagnosis a short time later, and even made a joke that the Parkinson’s would play havoc with my putting. My news, and my attempt at humour, were met with a respectful silence. I think it is because of the nature of the disease… people don’t understand. If you say you have terminal cancer, well, everyone knows that doesn’t end happily. But a neurological disease? Few people know what it means.

The first concrete decision I came to was to work less. I was a patent attorney. It was a perfect career for me, a marriage between writing, engineering and law. But I began to experience difficulties performing my work to the standard I was used to, and it was clear that work would only become more difficult.

I moved to a four-day work week, and there was a definite winding down. I became selective about the clients I dealt with and the projects I worked on. I took Wednesdays off, and it was a joyous day I looked forward to each week. I went for walks, I played golf, I explored parts of Sydney that I hadn’t seen. It was great fun, and quite rewarding and therapeutic.

A little over a year ago, I decided to cease work altogether. I went from four days to none at all. I realised that the time had come. It was becoming difficult to concentrate at work, and sometimes clients and colleagues would ask if I was alright. It was perfectly clear that I wasn’t capable of doing the work I once had, and this caused me a great deal of anxiety.

And so I left. I went cold turkey; I chose not to keep up contact. I think that once you have left, you have left.

I threw myself into renovating our beach house. The renovations had been going on for a while, but I became more engaged in the process. It felt like I was on holidays. But in the months after that, when everyone went back to school and to work that feeling ended. My wife and I agreed that it was my turn to do the household chores and all that she had done before. I took on a more domestic role, and I even took a few cooking lessons.

But as this year has worn on, I have begun to miss the adult world. I’ve taken up playing bridge. It is an intellectual game, and I like that. Exercise is my constant companion, and I enjoy the occasional trip away with a buddy. But keeping myself occupied and engaged is an issue that is increasingly demanding my attention. I know I have to keep the intellectual side up, and playing bridge is not enough. Next year I might take up a short course of study, maybe something in the humanities.

 

The impact on my family

I decided that work was the only thing that would change, everything else would continue as normal. I have three boys. Telling them was a bit haphazard, actually, but the diagnosis wasn’t hidden away. We just didn’t talk about it often. The boys kept their feelings to themselves. We did start a running joke at the dinner table. I would say ‘pull my arm’ when it was tingling or feeling wrong, and they would.

But my approach drives my wife crazy. At the beginning it was difficult for her. She wanted to talk to her friends about it – I think that was part of her way of coping. But I preferred to keep it to myself while I was still processing what it meant. Still, the world didn’t collapse around us, and we continue on. I see a Stoic practicality in her reaction, and her Scottish Presbyterian heritage means she makes the best of it and cracks on.

That has been my take on it as well. I think life is business as usual. I get on with it – I take the medication, I exercise, and I do what needs to be done. But I have to recognise that there are some things that I can no longer do, and some things that take me longer to do. Writing by hand is now very difficult, as are doing up buttons and tying my shoelaces. Basically, my fine motor skills are shot to pieces. Still, I try to be as normal as I would otherwise be. I can still drive, I can even still ski.

 

How I feel now

I experience fatigue. Some days are not as good as other days, and I have to take a day to recover. For me, I think exercise is the key. I work with a personal trainer, who I count as a good friend, three days a week. It is integral to the way I manage this disease and it is vital to controlling my symptoms. If I don’t exercise I get stuck in a Parkinson’s spiral of stalling and freezing up.

Things take me longer these days. I am always the last one out the door. And I am slow at the household chores – peeling potatoes, folding the washing. These are mundane things, and it is frustrating that I can’t get through such simple tasks.

My wife has engaged a bit with Parkinson’s Australia. There is a bit of literature around the house, but I never read it. She finds the disease very frustrating. I think it must be frustrating for the partners of people with diseases like Parkinson’s. No one can be understanding and accommodating to another person’s needs and changes to their health all of the time.

I’ve avoided being involved in any Parkinson’s organisations. I don’t feel that I need support groups, I think I am functioning fairly normally. If I went, I would meet people whose condition is more advanced than mine, and I wouldn’t like that. I see that every time I go to the hospital clinic. The fact that there is a service out there is great, but it isn’t for everyone. I suppose there is an element of denial in that: I don’t want that future for myself, and I don’t want to be reminded that it can happen.

But maybe I am missing out. I recently made a discovery: fat-barrelled pens are easier for me to write with. That is apparently well known by the occupational therapists in the Parkinson’s community, but I didn’t know.

I haven’t bothered looking at the medical research either. It would be easy – Michael J. Fox has Parkinson’s disease and his Foundation’s website has information galore. But I don’t want to spend my days looking up the next miracle drug. It is probably part of my coping mechanism; I’m just not interested in knowing a lot about it.

I have a few friends with other chronic disease. A lady down the road has MS. Her disease has progressed much further than mine in terms of mobility, which is difficult for me to see. But she gives me a hug every time she sees me. We have an affinity, of a sort. Our brains are alike.

 

What I will do next

I am in a fortunate situation. I am reasonably well-off, and the change to my abilities is slow.

But I do notice incremental things. I am more and more clumsy. I haven’t really explained my condition to people, but word gets around. I find that people are supportive at social events. If I need to I ask for help – for example, I can’t carry more than one drink in each hand anymore – people are accommodating. They take their cue from me. In the main, I haven’t noticed that people treat me differently. But maybe they do in subtle ways, and I am just not aware. I don’t blame them – Parkinson’s is not a well-understood disease. In that way it is similar to Chronic Fatigue and Multiple Sclerosis.

My current goal is to support my youngest finish school and fly solo. 2016 will be his final year at school, and I intend to be there for him as much as he wants and needs.

After that, I’d like to spend chunks of time at the beach house. It is restorative and therapeutic. I can rest there. But my wife has a new, demanding job. She is enjoying the challenge, and has no intention of cutting back. Nor do I expect her to. We have yet to completely reconcile the two positions – where I am retired and she is still engaged in the workforce.

I’m sympathetic to how a disease like Parkinson’s impacts on partners. How do they cope? Do they feel cheated, as if they didn’t get what they signed up for? A disease like Parkinson’s must impact them. I am trying to understand, and I would like to talk more about it to understand more deeply.

My imperatives remain the same: to exercise, to find intellectual engagement, to engage with the adult world. But the future is unknown. I often joke that I haven’t planned beyond tomorrow.

I know I am hedging around the ultimate question – how does my life with this disease end up? My neurologist is helpful in this regard. He reminds me that the disease is slow moving, and I should worry more about co-morbidities, which are more likely to do me in. Deep down, I carry that thought with me.

There is something in me that says to spend more time at the beach house or travel sooner rather than later, to enjoy this time while my health is this good. For I know it may get harder. But I also know there are people out there with far worse conditions than I have. Even though I don’t think I have been let off lightly, I know it could be worse.

And so I try to remain upbeat. I don’t feel sorry for myself, and I don’t think I am depressed. The most common emotions I feel are anxiety and frustration. I don’t want to lose what I still have, like the ability to drive and to ski. If I were to lose them, I would become melancholy, and maybe I would need treatment. But I will meet those challenges when and if they come. They do not occupy my thoughts everyday.

This talking has helped my thinking a bit. It reminds me of the role of talking. I’m looking forward to reading, and maybe sharing, it.

Life after pancreatic cancer

 

Barbara Riddell

Kiama, New South Wales

Barbara is 63 years old. I know her as a family friend – her daughter and my sister are school friends – but not intimately. She has always lived with Irritable Bowel Syndrome and had her gall bladder removed at age 37. In 2013 she was diagnosed with two primary cancers – one in her pancreas and another in her kidney. As a result of treatment, she is now a type 1 diabetic. Barb does not travel far from home, and so we meet at her coastal home in Kiama, New South Wales.

 

There was only three weeks between my diagnosis and the first operation. Worried by a test result from a CT scan, my GP called me at work and told me to leave immediately and have another CT scan. Two days later I found myself sitting in what would become an all too familiar oncology office. The outlook was grim. I had emergency surgery the next morning (a pancreaticoduodenectomy, otherwise known as Whipple's procedure), where they found a 5cm tumour on my pancreas and another in my left kidney.

My life as I knew it was over. I could not return to work. My husband Ken took three months off. Our life plans changed.

After the operation I just didn’t want to be here. I didn’t want my family to see me not being able.

The 13 August this year will be the two-year anniversary of my operation. But two years later, no doctor really has a hold on my conditions.

I have always had Irritable Bowel Syndrome (IBS), which among other things means an inflamed gut and stomach. And when I had my pancreas removed, I became a diabetic overnight. But now, without daily medication vomiting and diarrhoea are the norm. I have lost at least 30kg since the operation. I can’t eat much, and I watch my diet. I have to: there is no sugar, no processed foods. But I don’t take vitamins or supplements. I don’t want to mask the symptoms. And I tweak my own insulin.

Speaking of her insulin, Barb gets up from the table and opens the insulin kit stationed near the sink. Without fuss, she sticks a needle in her abdomen, right through her shirt. She does not wince, and and she does not appear to particularly care which area she targets. I ask her whether she feels any pain. She admits that her abdomen is numb, and that she has not been able to feel it since the operation.

I feel best between noon and 3pm each day. The nights are especially difficult, due to the pain. Sometimes my eyesight is a problem, as well as the circulation to my feet.

I take at least 13 pills per day – some to settle my digestive system, some to compensate for the lack of a pancreas, but the bulk of the pills for pain and sleep management. Creon, Lantis and Nova Rapid to compensate for my removed pancreas, Rabeprazol for my digestive system, Endep for pain and sleep, and of course Endone and Oxycontin for the pain. These are my daily regime. The side effects are often profound.

I know Barb is in pain as we speak. She shifts uncomfortably in her chair, first on a reclining couch and then at the dining table as we eat. I wonder how much speaking with me is draining her, and how much she will pay for it later.

I need the medications. But month to month it does become expensive, even though I have private health insurance and my medications are covered by the Australian PBS and the National Diabetic Services Scheme.

I have had to adapt. Before we installed railings, I went down the stairs on my butt.

Barb looks sheepish at this admission, but I laugh. I have done the very same thing many a time during a Multiple Sclerosis relapse. This breaks the ice as only sharing the quiet indignities of chronic illness can.

Daily life can be dangerous. I have passed out in the shower. And I once fell on the stairs at night and remained there for two hours until Ken woke and came to find me.

I can no longer travel overseas. Apart from the physical limitations imposed by my medication and my bowels, it would be financial ruin if I were to become sick abroad. The best we can do is to see the rest of Australia that we haven’t seen.

We are going away in October for three weeks. We will drive from home in Kiama to Townsville, Darwin and Katherine, and then back through the centre of Australia. I will have a car fridge for my medications, and we will take it as slow as we need to.

I take each day as it comes. I don’t class myself as disabled. I don’t have a Health Card, although I do have a care plan through the local clinic.

And I have my family. I have a wonderful husband and two beautiful children. My wonderful husband. Before adopting our girls, we went through everything, including IVF and infertility. When you have been through that, it makes or breaks you. Divorce or separation is not an issue. It is enough to be together. Since the operation my libido has gone. But it is enough to hold each other each night, to have that intimacy.

I have good days and bad days, and there are still more good days than not.

I don’t want to be a burden on my husband. Burden is a terrible word. He wouldn’t see it that way, but I would feel like it. I keep telling him ‘I am on my way out, and afterwards I don’t want you to be alone’.

I can hope now. But when it comes to the crunch, I know what I will do. I haven’t spoken about it to my husband, but he knows.

I have my pills. I won’t ask anyone to help me, I just ask that they accept my decision.

I ask Barb about her girls, Jade and Andrea. Many years ago, I coached Andrea’s school netball team, and I wonder how as a young adult she feels about her mother dying.

I have not spoken to my girls, but I have written them a letter. I hope they accept how I feel and what I have said, because no amount of words can change the end result.

But maybe a child out of wedlock would be a good idea given the way I am going.

My mother died of colon cancer in 2006 when she was 78. For her, there was only six weeks between diagnosis and her death. Two years on from my own diagnosis, I see an oncologist every three months. The doctors can find no reason for my cancers. They simply are.

But the last test revealed high calcium levels in my blood. I think the cancer has returned.

At first I assume Barb is in denial. I restrain myself from interrupting, from calling the doctor for emergency appointment. But she is calm, she is matter of fact. This might explain the current pain. It might not. Barb feels no rush to confirm whether the cancer has returned, or whether there is yet another chronic condition that will slowly destroy her body.

I want people to know that they can deal with whatever comes. Even cancer. Just don’t think too far ahead, for it won’t bring you any joy.

The ravages of early onset Alzheimer’s disease

 

Jurg Kunzle

Wollstonecraft, New South Wales

Jurg is 65 years old. Born in Switzerland, he still has a Swiss accent and European mannerisms. He was diagnosed with early onset Alzheimer’s disease in early 2013. I interview him with his wife Marion by his side. Marion is able to fill in the blanks when he is no longer able to. The couple are friends of my extended family and I notice that Jurg – always fluent in English – finds it more difficult to express himself than I remember as a child. Words, especially in English, no longer come easily.

 

Jurg: I was retrenched in 2000 after twelve years with the same company. This was a great disruption to my life, and began a four-year period where I changed jobs twice and was unemployed for two years.

Marion: I saw the signs of Alzheimer’s back then. Jurg was looking for jobs and doing phone interviews, but he started to have trouble answering questions and requests for information on the phone. At the time, I suggested putting a card with the basic details near the phone. My mother had Alzheimer’s disease, and I knew the signs. All I could think was ‘this can’t be happening to me twice’. In late 2012 I spoke to my GP about it, and then booked Jurg in for an appointment with a specialist.

Jurg: It was very difficult for me to admit I needed to go to a doctor. But I knew there was something wrong with my short term memory. I think the stress from unemployment made it worse. And when I did go to the specialist, I couldn’t do the memory test. When the doctor asked me where I was, I couldn’t say, aside from knowing that I was in Sydney.

Marion: It was a difficult time. When the doctor asked whether Jurg had thought about suicide, he said ‘yes’. I was deeply shocked. When asked what had stopped him, he said ‘family’.

I notice that Jurg is agitated, he does not like this topic. It brings up painful emotions, and he does not have the words to express himself as clearly as he would like. As Jurg struggles to explain, his speech reverts to more European speech patterns. Marion suggests words at various intervals.

Jurg: We told the children straight away, Berenice and Danielle. Danielle, the youngest, is more sensitive and took it hardest.

Marion: Jurg could no longer work. But we had debt. For financial reasons, we had to downsize. We have been in this apartment for two years. We were very lucky, as we had a great deal of help from our friends. One couple even temporarily covered our deposit so we could buy this apartment as we were in the process of selling our old home.

Jurg: I worry about Danielle, my biological daughter. I don’t have the inheritance I thought I would have to give her. I am on welfare... I received the Disability Support Pension until I was 65, and now I receive the Age Pension. It is a lot less.

Marion: I have had to take over the household finances – something Jurg always took care of. We had to spend all of our resources before we we became eligible for welfare payments. But I was rejected for the Carer Allowance, I do not understand why. This makes our financial situation more difficult than it would otherwise be. We have gone through the whole process, we have also set up our wills and Power of Attorney.

Jurg: I understand what my path will be. I was thrown from a car accident into a tree when I was 25 and almost died. I still have a scar all the way up my chest. So I have thought about the ‘why’ of life. And now years later I am here, in Australia.

I ask whether Jurg has thought about Danielle inheriting Alzheimer’s disease. Jurg says no, but Marion responds.

Marion: My mother and grandmother both had Alzheimer’s disease. I worry what will happen to me. My mother died from complications from the disease – she stopped communicating with people, and then she fell and broke her hip. With Alzheimer's disease, routine becomes so important.

Jurg nods his head vigorously.

Jurg: At this stage, I only know what is routine. I can walk to my post box, which I have had since 1982. And I can still meet Marion at her work. I know where it is and how to get there, one suburb away.

Marion: He knows to sit in the white chairs near my work and wait for me. But there have been problems. He got lost one day. I was desperate when I couldn’t find him. It turned out that he was in the wrong place in the right building, but he thought he was in a different suburb. I have lost 10kgs due to the stress.

Jurg (directly to Marion): I want to help. I can still do the small tasks. I buy the apples.

Marion (laughing): Yes, and the raspberry jam. You forget, and have now bought us four jars of raspberry jam.

Jurg (addressing me once again): I used to swim. That was my time. But now I can only go if someone drives me there. And I no longer drive... There was an incident.

Marion: One time Jurg caused a car accident and didn’t tell me. Another time he drove past me because he didn’t recognise me. He hasn’t driven for three years, and he officially lost his licence this year.

Jurg is engaged in this topic. He is gesturing wildly with his hands, and sitting up straighter. He wants me to understand what he is losing and has already lost.

Jurg: The world is closing in on me. I don’t even know when I am not here. It is the reason I don’t talk that much. And when I get lost, I don’t ask people for help. What would I ask? At those times, I don’t know what I need to ask.

Marion: Jurg doesn’t remember the most recent episode. When he got lost in Chatswood.

Jurg: I got lost. Why can’t I remember that?

Marion: There is anger and frustration when he can’t remember, when he can’t express himself, when there is no routine. And he has no patience. Our grandchildren are 9 and 6. They are boisterous and exuberant, but Jurg gets frustrated and angry with them. These days, other people mean the chance for misunderstandings and confusion.

Jurg: Sometimes I have to walk away, I have to leave the room. The doctor told me to walk it off when I get angry, and so now that is how I calm down.

Marion: Jurg has trouble with his maintaining his emotions, especially anger. He tripped someone over in a shopping centre because they were in the way. When he was driving, there was road rage.

Jurg: I don’t have any patience. Now I go prefer to go out in the morning, when there is no one in my way.

Jurg laughs at this. Humour is one way to cope. I decide to ask if Jurg takes anti-depressants. He seems uncomfortable, but says yes. Marion tells me she takes the same antidepressant, at half Jurg’s dose. Both look ashamed. I tell them I also take the same antidepressant, and Jurg thinks this is hilarious. We laugh and high-five: antidepressants are a part of chronic disease life.

Jurg: I understand what my path will be. But it has taken me this long to realise what has happened. I hope for a miracle drug, but that is years away. But I would take anything, I don’t have a problem with trial drugs. And if it comes to the end… well, I won’t know, I will have a great time! The important thing is to have a good time getting to the end. I am positive, though. Maybe there will be a new drug. Anyway, my father died at 52 – I can say I beat him!

Marion: This year, and for the first time in 15 years, we are going back to Switzerland. When I took over the finances, I tried to close Jurg’s old credit card. And I found out there were 650,000 frequent flyer points that hadn’t been used. Jurg had forgotten about them! It was a lovely surprise. It means we can take this last holiday. We are going to New York, London, Paris, Barcelona and Zurich.

Jurg: It is the right time for us to go. I want to see my brother, who I haven’t seen in ten years.

I ask Marion how she is planning to look after Jurg. Jurg is silent, and seems resigned to the fact that this is necessary.

Marion (hesitantly): I might need to pin a sign to his shirt with our current hotel and phone number.

Jurg interrupts, suggesting that the problem will be solved if he wears his old dog tag. He seems excited about this. Marion tries to explain this won’t help, as while it has his name it doesn’t identify where he is staying or how to get in touch with her. Jurg protests then falls silent; I am not sure he understands.

Marion: I worry about losing him in the men’s room. What if he leaves by a different exit?

I ask if they have asked for help from Alzheimer’s Australia or another organisation.

Jurg: That is my next step. At the moment I am figuring it out, but I probably need more information.

Marion: Anglicare picks Jurg up twice a week, on Wednesdays and Thursdays. Sometimes the group goes on excursions, like to the Modern Art Gallery, but mostly they spend the day in a community centre. They do paper crafts and keep each other company.

Jurg shows me his paper craft displayed nearby. He is proud, but I am saddened. I had assumed it was the work of one of his grandchildren.

Jurg: Ten years ago I wouldn’t have gone to this type of thing. I am an atheist. But I like to help. I am physically able, unlike the others that go. So I can help, helping is still something that I can do. I help those with physical disabilities, and I help the Reverend. They are good people, we talk about what has happened. Now I even listen to his sermons.

Jurg appears happy, even peaceful, as he talks about the sermons. They are a constant, a routine, and they bring this atheist comfort in a world dissolving around him.

Marion: Friday is Jurg’s day alone. He does the vacuuming, and he still walks to the train station to wait for me.

Jurg: I want to help. I am doing everything the best I can. I am up, I am positive – I don’t want to kill myself. If this is what it has to be, then I am doing this. I am carrying on and I am enjoying life. With Alzheimer’s disease, people think that ‘this is it, I am useless’. But that is negative, and the negative, it kills you. It is what it is. If you lose something, it is gone. Forget about it, move on. Be now, and enjoy. I will do everything I can, as long as I am here. I want to do the right thing. I hope to help others who read this. Anyone can talk to me, and I will tell them that has happened, and that I am still happy. This interview is for the others, the ones who have what I have.

Throughout the interview Jurg has been wearing gloves, even though we are inside. Like many with neurological diseases, he suffers from cold extremities, particularly the hands. He removes the glove to clasp my hand as I leave, and he is shocked (and pleased) to find my hands are as cold as his. We compare our hands to Marion – she is the only one in the room without a neurological disease. Her hands are warm. Jurg hugs me and promises to send me a photo from Zurich.

The point of We Don’t Talk About

This project would not have been possible without the support of The Wheeler Centre, who awarded me a Hot Desk Fellowship in 2015.

For the record, this post contains my original pitch to The Wheeler Centre.

‘The good new is, it won’t kill you. The bad news is, it won’t kill you’. My neurologist told me that at my diagnosis.

We all know someone with chronic disease. And we all know someone who is hiding chronic disease. But most of us chose not to think about it until we have to: when we, or someone we love, is diagnosed.

Because until you are faced with it, the emotional turmoil of living with chronic disease – of not being able to escape a disease – is difficult to understand.

You need help.

The blogosphere boasts a vibrant, helpful community. You name the disease, there is a support network. Blogs abound, including my own www.LadywithMS.com.

But chronic disease is more than the everyday sharing. While this is important (I know from first hand experience) it rarely addresses the dark side. For even in the free-for-all blogosphere, there is a self-regulating tendency to remain positive and to keep up appearances.

But people die or become too disabled to continue, and they fall silent.

Those with chronic disease represent a community within the broader community. And this community – regardless of which disease they have – is forced to contemplate scenarios that the generally healthy do not.

The purpose of this project is to share these contemplations.

I want to talk to people with chronic disease about the grief they face. About the failed relationships. About the choice not to become a parent. About the reality of disability, and the degrees of acceptance it is possible to have. And about the suicide plan many of us have, just in case.

In Strong at the Broken Places, Richard M. Cohen uses his experience with Multiple Sclerosis to chronicle the lives of ten ‘citizens of sickness’. It is an insight into chronic disease in America. But as a book, it is limited to ten stories, and does not represent Australia.

And then there is Race by Studs Terkel, an inspiration far from chronic disease. At a time when Rodney King dominated the news, Terkel interviewed Americans and asked them what they really thought of race in America. He dared to ask the questions no one else would.

I will to tell the stories of Australians whose lives have changed beyond their control. Not the politically correct version, but the real one.

Stories will be published – anonymously or not – on a new blog devoted to this content and added to over time: a living insight into chronic disease. Comment and community by family and friends will be encouraged.

The goal is not to be bleak; it is to be honest. Chronic disease is a personal catastrophe, even after you learn to live with it.

This honesty will help those living with a chronic disease know that they do not have to keep up the happy front. And it will provide a forum to communicate all that is so hard to say out loud.