Tuesday, September 25, 2012

The Never Ending Battle

In the summer of 2011, I had been living with MS for 12 years.  Wow, how time flies!  Quite a lot had happened in my life since my diagnosis.  Ups, downs, and just plain sideways at times.  But in 2011 I was strong; probably the healthiest I have been since diagnosis.  I climbed Mt. Rainier and ran a tough 10k ‘mud run’ obstacle course before my MS reared its ugly head with a subtle, yet significant, signal: my balance.  I fell and broke my leg while roller skating.  Yes, I said roller skating…

That fall was the start of a series of events (both related to the fall and random) that led to the toughest year yet.  Over the next 12 months the mountain of issues climbed higher and higher.
·         I had my broken leg surgically repaired with an intramedullary nail inserted the length of my tibia; my first hospital stay.
·         I spent two other nights in the hospital tethered to a heart monitor.·         I visited the emergency room four times and had 16 other medical appointments.·         I experienced "mysterious" medication unexplained side effects like deep muscle infections, bleeding in the eyes, and one bout of anaphylactic shock. ·         I was prescribed 11 different medications in an attempt to and stem the progression of my disease. 

Daily life really starts to take its toll when MS becomes such a burden.  For me, the loss of all that physical progress was crushing.  I spent every last ounce of energy to get through all the doctors, medications, pain, frustration, and trying to start some rehabilitation.  Through all this I tried desperately to reduce the impact my disease had on my family, friends and my job.  For Brie, MS turned her from a mom raising a 1-year along old with her supportive husband to a overwhelmed working mother and caregiver.

The funniest part (funny?) is that all of these MS related issues (balance, medication and reactions, appointments and testing) made for one horrendous year without even one noticeable MS attack!  Every day my body is fighting the damage MS has already done and the attempts to hold off further disease progression.  Someday soon there will be better, safer and more reliable treatment options.  Today, this is the best available. 

The recovery started almost immediately.  Even while plagued by issue after issue over the next year, my progress slowly outpaced setbacks.  With my leg in a cast, I missed the 2011 BikeMS but vowed to be back for 2012.  So that became my focus.  Once I was healthy enough, riding was great therapy for my leg.  My worsening balance issues called for a modification to my strategy: a new trike!  I shared the excitement with you earlier this year in “Adjustments, Concessions and Embracing the New (aka, “My Bicycle”) Part II”.

Riding and training were the keys to my physical recovery.  Support and motivation from my family and friends were the keys to hanging in there emotionally.  The only way I was going to recover and rebuild was by living my mantra: Never Stop…Never Quit…  Sporting my snazzy bright yellow trike, my goal was to do that in style!  My target was, of course, to ride the full 153-mile event this year.  The hills would be the deciding factor; or should I say my legs on the hills would be the deciding factor! 

I was slowly getting healthy again with just a few months left to train.  Training was intense for a while.  Hills on a recumbent are the equivalent of towing a sea anchor!

My first true test was July 14th and 15th.  My brother, Tyson, and I rode STP (Seattle-to-Portland).  That’s a 205-mile ride, but a little less grueling due to a pretty flat route.  113 miles in Day 1 was a success!  I made it to our overnight rest-stop in one piece, albeit a little sore.  Rest, recovery, and just a little bit of celebrating our success gave me enough energy to roll back into Portland on Day 2.

That was good but I needed more, so I kept training.  After a year of broken bones, surgeries, infections, and the never-ending onslaught of new medications & treatments I had just one question as BikeMS neared.  How far can my body go?  My training had been focused on just that, rebuilding the strength and endurance in my legs.  That new titanium rod may make my leg stronger but my muscles weren’t quite the same as they were as when I climbed Mt. Rainier a year earlier.  So building the strength, speed and endurance needed had been my goal.  Weakened muscles from lack of use were compounded by the need to train a whole new set of muscle groups; riding a recumbent trike is way different than any other experience riding.

Pushing Limits in BikeMS
My target was to see just how far I could push myself on the Day 1 ride.  There were three route options to take: 30, 60 and 100 miles.  I wasn‘t sure what I would have in me.  30 would be manageable.  60 would be tough.  The 100 route looked insane!  I couldn’t leave anything on the table, however.  If I finish the 30 or 60 I will always wonder how far I could have, should have, gone.  So I opted to tackle the 100 mile route.

The ride was a physical roller coaster for me.  Not just for the literal slow (and sometimes steep) climbs and drops of the Oregon Willamette Valley, but also for the bursts of energy I was able to find just as I thought there was nothing more left in my legs.

How far could my body go?  Well, on a recumbent trike in 103⁰ heat my body went exactly 81.4 miles before it said “no more”.  My left thigh and my right knee finally wore out.  Both are victims of MS related surgeries and muscle/nerve damage over the years.  I stayed hydrated and fully lathered in suntan lotion, but my legs were just not strong enough.  That day all I could muster was 81.4 miles.  After being picked up I sat on the SAG Wagon (support and gear) with other riders and pondered how I was going to do more next time!

By the way, yes.  I did say 103⁰ heat.  Brutal heat is an understatement.  The last thing that any rider ever wants is a strong headwind but there were a few times I would have paid good money for cool air blowing across me.  Any air, for that matter.  I’m not sure how hot it reached down low to the asphalt on my trike but at one point I looked over and watched my odometer screen crack as it warped in the sun!  It was hot.  I was happy to make it back, kiss my wife and daughter and get some ice on my knee!

Saturday night we rested, recovered, celebrated a hard day of riding and listened to the MS Society’s program of events.  Honoring those who ride and support BikeMS is always a huge focus.  We know it’s a lot to ask, and we appreciate everything done in support of the cause (riding, donating, supporting).  What a great night indeed!

When I awoke on Day 2 I immediately thought of my legs…..wondering what it would feel like to pedal, walk, or even stand.  I’m happy to say that I had no problems at all!  A shorter route, lesser hills and lower temperatures combined to make the full route quite pleasant.  Still reeling from the lessons learned on Day 1, I spent much of my time on the road planning for next year.  Planning how to train and rebuild my body for the next ride.  After a tough year, I am so happy to be strong and healthy but I still want more. 

BikeMS 2012 ended on August 5th.  By the end of the month I was in physical therapy, working on building the strength, flexibility, mobility and balance that I have lost after years of MS.  I almost forgot how much rehab hurts, but less than a month into it and I already notice improvement.  As I start to think about 2013 all of my targets are Further, Stronger and Faster!

This is now….
As the summer of 2012 draws to an end, I can happily thumb my nose at MS one more time.  You threw all that you could at me and I came back strong!  I have the stubborn dedication, dedicated healthcare team, and loving support from my family & friends that will keep me going.  I know that my MS is not ready to give up.  Even now my body is going through a new round of pain and debilitation.  Will it last long?  Will it get worse?  I don’t know.  All I know is that I will be ready to ride for BikeMS 2013…whatever it takes!

It will never stop…nor will we
It will never quit…nor will we
This is why we ride!
Kevin Byrne
Portland, OR