Making lemonade with my MS

Guest blog post – Sarah Le Huray, MS Walk ambassador

As soon as I saw my scans on the doctor’s computer screen, I knew exactly what my diagnosis was. It was Multiple Sclerosis (MS). A lot was racing through my mind, but my biggest concern was how MS would affect my ability to be a mom. I was only 32 at the time and had two young kids to take care of.

The diagnosis didn’t come as a huge surprise, as I had been having mysterious symptoms for years.  I visited countless doctors but was never given an MRI and was usually told I was “stressed” from working and being a mom. It took a serious case of optic neuritis, with almost complete loss of vision in one eye, to verify that I had MS.

Coming to terms with this surreal diagnosis and understanding that I was now living with a lifelong degenerative disease meant that I needed an outlet to cope.  I started writing random questions and ideas in a journal, then the next day decided to start a blog. My hope was that perhaps someone else would read my blog and be able to relate.

I wrote the first post before even naming the blog, that’s how urgent it was for me to put my fingers to the keyboard. Then it hit me, as cliché as it may be:  Life handed me lemons, so I was going to make lemonade.  And there came the name for my blog and MS Walk team – “Making Lemonade.” 

I’ve now chronicled almost seven years of my journey with MS on my blog.  Sometimes good, sometimes bad, sometimes nothing.  It’s a replay of my personal story – specifics about medications or appointments, definitions of MS terms, or just what’s happening in life.  But mostly, I try to convey a sense of positivity.  This is very important to me.  And I think ultimately affects how I live with MS. 

In life, the only things you can control are your actions and your thoughts. MS is a huge part of my life, and has changed the person I am now, but it does not define me. I choose to be bigger than my MS.  

Writing my blog pushed me to get further involved with the MS cause so I reached out to the MS Society and immediately signed up for the MS Walk.  This has become my “thing” over the seven years I’ve participated.  We make it fun – we wear crazy yellow outfits (hence the lemonade) and make it a positive experience.  It’s hard to describe the intense emotion I get at MS Walks.  It truly is like nothing I’ve ever experienced before.  The MS community is so strong, so supportive, and has helped me immensely.  Having all those people together in one place, for one purpose is absolutely the best feeling. 

Without question, the hardest part of my MS journey is also being a mother.  The uncertainty about my life and my ability to take care of my children scares me the most.  It’s difficult for them to understand when I need to say no to them or when I can’t do something physical with them.  Or explaining how debilitating MS fatigue can be.  When I think about what the future holds, I worry.  Growing up with a perpetually sick mom has been a process They’ve had to adapt.  And so have I. 

It’s taken MS Society self-help groups, a lot of reading, and some therapy to get me to a place where I can accept my MS. Sometimes I need to be easier on myself; let the guilt go.  Sometimes I need to enjoy the good days.  Enjoy what I can do.  And I do.  This has been the most difficult aspect of having MS for me, with the steepest learning curve, but together, we’ve done it.  And, for my future with my children, it’s been worth it.  MS is now my “normal.”  And that’s OK.  And we all adapt and move forward. Life is about what you can do, not what you can’t.

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    Cheryl Wight

    Hello . I enjoyed reading your story. Mine is very similar. MS has been my new normal since 2004. Like you I had symptoms long before I was diagnosed.
    I am doing ok, my biggest worry is how my MS will progress. I am almost 60 and I think I have been living with this disease for a long time. Maybe since childhood. It is a strange disease to figure out. I have been on copaxone since 2006, but I did have a big flare up in 2017 that has left me a little more fatigued and with more obvious balance issues and muscle weakness.
    Reading your story has prompted me to do the MS Walk this year. It will be my first time. Thank you for that.

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