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It's Only the Beginning

17 February 2017

When I was initially diagnosed with MS, I read a lot of stories online that suggested my life would now virtually be over. My neurologist had told me “whatever you do, don’t go home and sift through Google results about MS”. Although I understood that this was certainly great advice in terms of Googling MS symptoms and prognosis, I didn’t expected the same advice would be necessary when searching “personal experiences with MS”. While I fully understand that everyone’s experience is different, I was overwhelmed by the amount of negativity that presented in those online search results. This, along with the general uncertainty I felt with the diagnosis, led to me seeing a psychologist for a number of months (highly recommended to anyone!). I did some soul searching into what I wanted out of life, and what goals I wanted to achieve particularly now that I had been presented with a bump in my road. I had always been someone to ‘play it safe’, staying in jobs perhaps only for the security, opposed to the enjoyment, and throughout my sessions with the psychologist, I realised that this was the only prominent area of my life where I felt a void, and one I really wanted to address.

An MS diagnosis was the inspiration for returning to study as a ‘mature age’ student (when did being in your 30’s be labelled as such?!), and 3 years on I’m now gearing up to graduate. I made the decision to return to study after putting it off for years, often telling myself that 3 years was a huge investment in my time and effort, despite the end result likely to be an enjoyable and fulfilling career. For me, the diagnosis sent me a clear message to live in the moment, take a chance, and not waste a single day. I could have waited another 3 years and then reflected on the fact I would have completed my studies by this point, or I could just jump in and get started. Within 4 months of my diagnosis, and admittedly with some reservations around my ability to study again, I was hitting the books!

I have relapsing-remitting MS (the most common form of MS) so for those who aren’t familiar, this means I don’t know when the next symptom or relapse may occur. In relation to my studies, this created the need for self-imposed, tighter deadlines for readings, activities, and assessments, ‘just in case’ I experienced a symptom or relapse, which may force me to pause my studies. Thankfully, I haven’t experienced any new symptoms or relapses that were significant enough to require me to stop studying, and I’ve learnt how to manage the more common symptoms. Fatigue has been one of these, and with working and studying full-time, the dreaded fatigue has certainly pushed me to my limits (MS Australia has a really great fact sheet on fatigue, the most common symptom experienced by people living with MS). Essentially, I make sure that I am super productive on my good days, so I can rest on my bad days, and while the reality of this has certainly been frustrating at times, it is something I have consciously needed to acknowledge and practice. I have a post-it note on my desk that says “The only way to get it done is to do it!”, and this philosophy has really kept me motivated throughout my studies. I’m very determined, and if I want to achieve something, then nothing will stand in my way, and this is no different to my approach to studying while having MS. Through studying, I want to prove to myself, others (particularly in the disability community) and to MS itself that, while MS does control some aspects of my life, I won’t let it control every aspect, particularly my broader life goals. Yes, I do need to make adjustments and work a little bit differently ‘just in case’, but I can still excel and achieve.  

After initial denial when I was first diagnosed, I now realise that although I have no control over when my next relapse may occur, I do have control over the attitude I adopt and the measures I take to help myself. This includes frequent gym visits, daily meditations (and medications!), diet modifications, and adopting a positive mindset across all aspects of my life. I have learnt that I am stronger, and more capable than I thought prior to, and in the months following, my diagnosis, and that it is never too late to make changes in your life, no matter what your circumstances are. It’s quite easy to adopt a victim mentality when you have been diagnosed with a condition like MS, but I believe that being negative and ‘blaming’ MS for your life after diagnosis, doesn’t actually help the situation in any way. Sure we all have our really bad days, but it is only on these days that I let MS get to me (and even then I try to just sleep it off!). If I want the best health I can achieve, I can exercise and eat well. If I want to manage stress, I can meditate or talk to others about it. If I want good marks on assignments, I can study hard. If I want a new career, I can take steps to make that change. All of these things are in my control.

I guess what I essentially want to achieve through this particular blog, is to let people know, especially those recently diagnosed, that a diagnosis means that while you may have to do things differently to accommodate MS, you can still do many things. I am preparing to graduate with such a sense of achievement, a new career on the horizon, and the knowledge that this was all completed with MS. My life is far from over following my diagnosis; in fact in some ways it feels like it is just beginning. I hope that this blog sends a message to the community that you can still achieve many things despite the challenges you may face, and I hope that next time someone is searching for “personal experiences with MS” they come across this story. 


Comments (6)

Thanks Samuel - a lovely blog that captures something I have also thought a lot about. Congratulations on your impending graduation - you may not have told all those around you that you've achieve this while living with MS, but by putting it out there as a blogger, you are certainly achieving your goal of being a positive example to those setting out on their own paths with MS!

Glad you enjoyed it TUO! It was nice to share this milestone with the MS community, and I hope it can motivate others to go after what they want in life, even though MS has popped up on their path.

You took the words out of my mouth. This is my exact story and sentiments. I was diagnosed at 30, had a very rough patch and now starting to get better. Also now studying full time and getting my act together. Its strange but in a way ms is a godsend, the wake up call i needed. My neurologist also said to not google when diagnosed and it can be very depressing when you do. There needs to be a lot more of the positive stories out there. Thanks for a great post. Good on you and congrats on graduating.

This is so nice to hear Steph! Thanks so much for taking the time to log in and comment. Often we hear a lot of negative stories about MS (which of course are out there and touch us all), so it's nice and refreshing to share the positive actions we can take in the face of MS too. I'd still be working in my mindless office job if it wasn't for MS, so as you say, it is a bit weird to see the diagnosis as having a positive influence, but I certainly agree with your thoughts! Good luck with your studies, and I'd love to hear when you are set to graduate too! Thanks again Steph :)

This is such a positive, empowering post that gives to hope to those that may need it! I hope you know what an inspiration you are to myself and others :)