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.

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.

 

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.

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.