MS Xplained is an introductory guide to the complex world of MS., in the form of an app.
MS Xplained is an introductory guide to the complex world of MS., in the form of an app.
Ever been to the doctor and not understood what they said? It happens. And it definitely happens when someone says you have MS… The only coherent question I had when my diagnosis was confirmed was ‘can I still drink alcohol and eat cheese?‘ (yes, in the face of the unimaginable that really was my question).
Despite normally having myself together (with the ability to ask relevant questions), being told you have MS is overwhelming. There are questions you need to ask, and information you need to understand at a practical level. After all, it is your body and your disease.
MS Xplained is MS explained by real doctors for real people with an MS diagnosis, in the form of an app. It is based on real MS stories – in this case, mine and Melissa’s. The goal is to help those newly diagnosed understand the disease and the treatment options available.
This app explains MS in a way everyone can understand. There is no judgement, and no doctor-speak. It is just the information you need to know to help you – or your friends and family – get the basics right.
As someone with MS, I can say this information would have helped me when I was diagnosed. Once you understand this information, you can choose how far you take it and decide what else you want to know (even if all you can consider wondering about is whether you can eat cheese).
Download it for free here.
Medicine X worked with MS Australia and MS Research Australia to develop the ‘MS Xplained’ app. Full disclosure: I am a National Advocate for MS Australia, and I did not receive any fee or reward for sharing my story or writing this post.
Reblogged from the We Don’t Talk About project: Juggling MS, family and work: Priorities and possibilities
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.
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.
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.
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.
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.