Are You Bored of MS? A New Year’s Resolution

  • Sometimes living with chronic illness gets, well, tiresome.  Sometimes thinking about chronic illness gets to be monotonous.  But living with chronic illness is a chronic situation.  One which can never be forgotten nor neglected.

    Once you have been diagnosed with multiple sclerosis, life will never be quite the same.  First of all, there are doctor’s visits.  Then there are medical treatments and lifestyle changes.  Finally, there is the need to learn about the disease and how it may affect you on a personal level.

    Even after seven years post-diagnosis, I am still learning about MS and how to best live with the disease.  As a health writer/blogger, I read articles on the latest MS-related research.  I try to follow the latest news and blogs.  Every once in a while, I get saturated by it all.  

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    During the past month, I’ve spent a good bit of time reading and copy-editing a collection of MS-related patient education pieces.  Doing so has reminded me of a few MS-related things:

    Cognitive abilities are never overrated.  When engaging in activities which require high levels of concentration and attention to detail, I have to take several mental breaks.  This makes completing tasks much slower, but at least it can be done when motivation levels stay high.

    Physical conditioning and flexibility are vital to feeling good.  When I returned to yoga last year, I had a difficult time relaxing and allowing my muscles to stretch.  Our teacher takes us through a routine which focuses on different muscle groups and areas of the body.  One thing which I sometimes don’t appreciate is the getting down on the floor, then the getting up to do something standing, then back to the floor, and repeat.

    However, the frequent up-and-down during yoga class is actually very good for the body.  Even my knees have begun to feel better during poses such as “Cat” or “Tiger” as long as I kneel on a wool blanket.  In addition, my balance control has improved...but I’m still not daring enough to try to complete the “Sun Salutation” with my eyes closed.  No, thank you.

    Disease-modifying drugs (DMD) really can, and do, make a difference.  Immediately after diagnosis, I wanted to start on a DMD and did so.  That first year was tough but the medication seemed to finally kick in and start doing its job.  But after a few years, my MS began to worsen.  I was having exacerbations and disability progression such that I began research into other options.

    Living with one chronic disease is like a full-time job.  Living with two chronic, autoimmune diseases deserves time-and-a-half earnings.  (That is, if we were paid to be “ill.”)  But in my case having two diseases, MS and RA, has been a hidden blessing.  I switched RA drugs to a more aggressive therapy and as a bonus, my MS has improved.

    When I say that my MS has improved, I mean it really has in many ways.  I am able to do things which I couldn’t a few years ago.  I’ve regained some abilities which had been limited.  Last week, I had my first MRI in over 2.5 years to “pop the hood and take a look” so to speak.


  • Although I haven’t picked up the radiologist’s report yet, I did look very closely at the MRI images I took home on computer disc.  I can still see one significant lesion on my cervical spine from one angle on a series of images.  However, I don’t believe that I can see a previous lesion which had spanned a number of vertebrae.  My brain scans look good to my non-professional eyes.  I need to read the report.

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    One more MS-related thing which occurred to me during the past month is that after awhile, living with an unpredictable disease such as MS can truly become monotonous.  You get used to how the disease behaves in your own body.  There are fewer and fewer surprises.  The ups-and-downs are less emotionally draining than they were just a few years ago.  Although for me personally, that may have more to do with actually doing well than with accumulated experience with the disease.

    MS has become somewhat boring to live with.  In the coming year, HealthCentral will be focusing on living proactively.  So much of living with MS is reactionary. Example: An exacerbation occurs, you go to the neurologist and schedule a round of IV steroids.  Then you wait to see if the steroids worked.  

    So, although MS has become “boring”, living with the disease does not need to be monotonous.  Let’s focus on things which we can each do to enrich our lives during the coming year.  Let’s all take a proactive approach to living well with and beyond MS.

    Hope everybody has a safe and Happy New Year!!
      

     

    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: December 30, 2012