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.

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.

 

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.