MS Xplained is an introductory guide to the complex world of MS., in the form of an app.
Advocacy
MS Xplained: An app about MS
Being diagnosed with MS is hard
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.
But there is introductory information available
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.
Thriving with Primary Progressive MS
This We Don’t Talk About story was originally published on 23 May 2016. You can read it here.
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.
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.
