Earlier tonight, my emotions had unexpectedly performed a 360° turn within moments.
I had JUST acknowledged today's date and done some calculations to acknowledge that on Valentine's Day 2020, I have officially been diagnosed with MS for 18 years.
EIGHTEEN!
At 42 years and 9 months of age, that means I have had MS for 42% of my life and overall, I've had a pretty good 'go' of it with smooth sailing.
In 2010, I gave up driving after suffering weeks of motion sickness that turned out to be caused by nystagmus and blamed solely on MS. (I, seriously, wouldn't wish nystagmus onto my worst enemy; it was a horrible experience!) Thankfully, it suddenly cleared up around the same time we discovered that I was pregnant with our second son. Hooray for remission during pregnancy! I've been hospitalized for a few days back in January 2015 for stroke-like symptoms that affected my left side of my body, but turned out to be declared an MS flare. I've been treated with high dose of oral steroids once (because it wasn't convenient to go in for an i.v. infusion late on a Friday and to have to go back in during the weekend) for an episode on optic neuritis where I had intense pain behind my eye and my color perception was dramatically skewed from one eye to the other. I've had a round of i.v. steroids to get me through an episode of other symptoms. All in all, I've fared very well, in my humble opinion.
When I was diagnosed on Valentine's Day 2002, there were just a few disease modifying treatment (DMT) choices on the market. My choices were Avonex, Betaseron, Copaxone and the brand new injection, Rebif. After careful thought, we (my newly graduated Doctor of Pharmacy (now, ex)husband and I) selected Rebif, but my blood levels were very sporadic while on this drug and was making my medical team nervous so, I was quickly put onto Copaxone instead.)
Over the years since diagnosis, I've done daily injections (Copaxone 20), injections three times per week (Copaxone 40), a daily pill (Aubagio) and finally to a twice a year i.v. infusion (Ocrevus).
I was sailing on cloud nine realizing that I've had MS for close to 20 years and have done overall, very well. For years, we've believed that my positive attitude and (reasonably) healthy diet have attributed to my general health and well-being. (I don't eat a lot of processed foods or fast foods. We eat a lot of whole foods, home-cooked. I tend to eat more fruits and vegetables than the rest of my household. I stay well-hydrated.
These past two years, I finally put MYSELF onto the top of the priority totem pole. After 8.5 years of motherhood, I finally took time for myself to exercise. I discovered yoga, water aerobics and Body Flow (yoga, pilates, tai chi) at my local fitness center. I also discovered audiobooks so that I can listen to a book while multi-tasking on housework or while pedaling a recumbent bike. My strength, balance and flexibility have improved significantly. I am stronger and healthier than I've been in years!
I stopped short-changing myself on sleep and beating myself up over the cleanliness of our house. The mess will still be there for me tomorrow. When I struggled to sleep with so many sleep disturbances from my husband and two sons, I made the healthy choice to sleep by myself in a basement bedroom where I can control the temperature, sound and light to my own sleep preference of cozy, quiet and dark. And guess what? I've never felt better!
I had acknowledged all of this, taking my brain to a 'happy place'.
And then, while perusing on a Facebook page for a MS drug, someone posed a question about people who've been diagnosed for MS for 20+ years and the responses suddenly took the wind out of my sails. Of the responders so far, a handful of them admitted that they had done very well for twenty years post-diagnosis, but by the time 25 years had passed, had quickly downgraded to a cane and almost immediately thereafter, to a walker. They discussed having to take out their bathtubs because their legs were no longer strong enough to lift over the side.
I had just been teleported from my 'happy place' to the gloomy part of the Hundred Acre Woods.
I immediately thought about our beautiful bathroom remodel that we did this past year, where we replaced the original tub for one long enough to fit my 33" inseam comfortably seated in the bottom. And then, I started to think about all of the vacations we have yet to plan.
I wondered WHAT TRIPS/EXPERIENCES need to make it to the top of the 'bucket list' to make sure that I experience greatness before I can't do it. (We've loved introducing our family to the beauty of National Parks these past few years.)
A podcast I listened to earlier this week discussed that THESE NEXT FEW YEARS of your life are almost always 'the best' years of your life and how quickly things change as we age. They encouraged TAKE THE TRIP NOW when you've got your health, instead of waiting until retirement when you've got enough wealth, but your health isn't there to enjoy the trip you've been waiting for all these years. While listening to this, I questioned WHERE DO I WANT TO GO?
Yesterday and earlier today, I was listening to a podcast that was discussing running a marathon. For a few minutes, while listening to the excitement of it all, I wondered if I could run a marathon. The podcasters were very convincing that anyone could train from couch-to-a-full marathon. I started to believe that MAYBE I could someday tackle this feat. (I got immediately turned off when they started discussing chaffing issues during training and racing. Also, reality hit when I acknowledged that I was forced out of cross country in high school after getting three stress fractures within a year because my fine bones couldn't bear the impact of running.) So, running a marathon isn't likely on my list, but I can find SOMETHING to put on my list.
And then, I came to a realization, that I've had a DREAM TO WRITE A BOOK for 58% of my life and acknowledged that SOMEDAY, 'IF' I'm no longer able to walk on my own due to complications of MS, I should have plenty of time to work on that writing and recalling years of wonderful experiences.