Last night I was having a conversation with my mother about different events in our lives during the past decade or more.
I remember that we painted the living room a beautiful shade of blue during the early winter months of 2006. I remember this clearly because I was hopped up on steroids during my second major MS relapse in six months, shortly after I was finally diagnosed with MS.
I remember the August that we painted my music studio. It was the first time that my right knee became excruciatingly painful and I thought that I had just twisted or tweaked it too many times climbing up and down the ladder to reach the sloped ceiling. Turns out that I was developing osteoarthritis and the spurs behind my knee cap were causing painful irritation.
September 2010 was the month that I gave a talk at the 2nd annual E-Patient Connections Conference in Philadelphia. I know this because the day I returned home I had to take my mother to the emergency room because of a health crisis. Conversely, I will be able to remember when my mother had the emergency because of the conference.
Then, my mother and I were discussing all of the things which need to be done to repair and maintain the house. The kitchen sink is leaking. A cabinet needs to be hung. Water damage to paint and plaster upstairs needs to be repaired. And, the practically endless battle with overgrown weeds and bushes is just waiting for cooler weather.
This made me think about all the things she and I used to be able to do around the house. It was not such a huge ordeal for my mother to mow our large yard. I didn’t like to do it so much because it made my hands feel really odd and hurt, but the actual act of guiding the lawnmower was not so bad. We used to be able to keep vines from overtaking the fences. I even had the time and energy, although life was objectively busier than it is now, to take on special projects.
When did things change?
Some may say that “life happened” as it tend to happen for most anybody as the years go on. In our lives, it’s more accurate to say that “sickness happened.”
It seems clear in retrospect that the relentless onset of MS and RA over the course of 18 months, following five years of fluctuating symptoms (such as temporary blindness, heavy legs, painful feet/ankles, achy hands, etc), changed the course of my life irrevocably. Things began to be neglected.
There’s a virtual wall between how I was able to manage life pre-MS versus post-MS. It wasn’t until my mom and I were talking about things around the house that I realized - and truly and honestly acknowledged - that life has become punctuated by health events.
Is this a normal part of life? A normal part of the aging experience?
Maybe as we begin to repair the house, I will look back on this time and associate it with improved health, strength, and well-being. The better I’m doing, the more I can get done. Yet another punctuation to note in my diary.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.