Life with MS

Written by on January 14th, 2014 – 2 Comments

Recently a celebration of achievement in fundraising was marked for the MS Society here in my city.  This was an event which I’ve attended since being diagnosed with MS 3 years ago.  At the time of my diagnosis, I decided to do the MS walk to raise funds for the issue but mainly to help myself come to terms with my own diagnosis.   At the time of my first MS walk participation, I was in the first 6 months of knowing I had the disease and I was overwhelmed and struggling to manage everything that was thrown at me.  The walk was one of the first avenues for me to accept the new pathway my life was taking, one that I didn’t expect nor want but nevertheless it was happening with or without my support.

I was diagnosed with relapse remitting MS at the age of 30 after experiencing sensory and other issues noticeably (to me) for about 1 year prior. I have had many issues over the last 3 years but none have been not outwardly visible to others (unless you know me extremely well).  This has be a source of frustration in many ways.  Its hard to describe to a doctor what is going on never mind trying to get others surrounding you to “get it” especially when they cannot see any physical impairment.  It’s also been a gift, to be mobile and to be diagnosed early.  For this I am appreciative and I have made a commitment to myself not to take life for granted. I’ve done much hard work to move from being overwhelmed to acceptance of my life situation since that first MS walk all the while of trying to maintain normal life as best possible.  I have made a plan to live my best life and to ensure that I am healthy, and positive and happy about something everyday.  I continue to participate in the MS walk more so with a stronger priority to raising funds.

One thing that I still struggle with at times is seeing others in the advanced stages of MS with a physical disability.  In attending these events at the MS society, this inevitably happens.   The first year it made me cry (or I spent much time holding back tears) because it was a glimpse into my potential future and it wasn’t what I wanted for myself.  Every time I saw a disabled person, I had this huge feeling of empathy and sadness.

I am presently a PhD candidate in the science world.  During this time, a well-meaning colleague, was trying to help me to connect with another researcher so that we could collaborate on some work, incidentally this other researcher also had advanced staged MS.  I was sent the email from him to my colleague.  His message was extremely sad and spoke of hardship and loss from living with the disease.  I didn’t know how to respond initially beyond crying and I spent much time debating: do you ignore the commonality of the disease or do you face it head on?  I’ve never been one to do the easy thing and ignore difficult situations.  In this case, I decided to do what felt the hardest and communicate openly as he had in regards to my disease.    It helped me realise something about myself, that I was used to taking on difficult challenges so why was this one going to be anything out of the ordinary?  Although, it still pulls at my emotions when I see someone struggling, I no longer feel the urge to cry but instead I want to give them a hug of support because I can image the extra effort and energy it takes to stay mobile.  I hope for a positive outcome in my future.  This I’ve learned is a mind-set and not the potential disability itself.

2 Responses

  1. kirstimarie says:

    It’s hard for me as well seeing people in advanced stages of the disease. It’s really scaring knowing that could be me someday. Even seeing someone on TV in a wheel chair because of MS makes me cry. It’s motivation to live life to fullest though!

  2. Tracey says:

    I totally agree with you!! And it motivates me to become stronger emotionally, mentally and to take care of myself so that I’m OK everyday. T