October 1, 2012.
That was the day my newest battle with MS began, with the thought that screams “I can’t explain it, but there is just a subtle hint that something’s just not quite right.” After that there were constant strings of bad days, the only intermittent interruptions being BAD days. I am now classified as a “difficult patient” by the VA, not for my charming personality but rather the clinical difficulty of my disease. At that time, I could only focus on trying to get used to my new body and fearing just how bad it would get.
Today is April 23, 2013. 204 days later and a thought dawned upon me: I have managed to string together a few good days. The concept of a ‘good day’ is different than it was in the past. When I am walking down the street and I notice that I am not limping or dragging my leg; when I can raise my glass and ‘cheers’ my daughter at the dinner table; when I can talk to someone for 10 minutes; when I can write and type these journals. Those are good days.
What makes a good day? More importantly what compensates for, eases or prevents a bad day? If I knew that secret, my friends, I would be shouting it from the rooftops. Maybe someday I will cipher my MS codebook. That is exactly what I am trying to do. My compulsive behavior may finally yield the rewards I long for, as I recently started keeping logs of everything. I am trying to see if there is a pattern between eating, drinking, exercise, sleep, medications, and about 14 variables that I track daily. I have only been doing this for two weeks but I see a few patterns developing. I’m looking forward to sharing this with my neurologist next month. There is no way that I can do this myself and I will need all the help the VA can muster.
So I track my good days, and I track my bad days, and I track everything in between. I have been focusing on healthy habits (water in lieu of soda), healthy meals, holistic treatments (acupuncture and nutritional supplements), my prescribed medication regimen and exercise. I’m a 41 year old man who just learned (for the 1,000th time) that a healthy diet and lifestyle is good for my body. The days of a large peperoni with extra cheese and a pint of Ben and Jerry’s are over. Go figure!
I am seeing a reward so desperately needed after this tough winter. These good days bring the biggest smile to my face as I walk along the street in warm sunlight! It’s euphoric! But, alas, it’s also a fleeting moment… As quickly as those good days come, they disappear. I can’t yet predict when my leg will buckle under me, or my arm will stop working, or when I can no longer talk, write or type. So I track those times and I look to see how to put a string of good days together.
I am really starting to get excited about putting in workouts in the gym again! I really hadn’t been there much (at all) for the last 6+ months. It feels great to get back. I realize just how much I’ve stepped away from my fitness, both from MS and lack of activity. It’s tough but the tired and the pain actually feel good for me mentally! I worked out 5 days last week. Most of it is in the gym on the stationary bike, ending with a 1 hour ride at a pretty tough level on Saturday! I have done Mon/Tue so far this week. It feels good and I am looking forward to building on this big step.
I’ve got a long road to recovery ahead of me, and I may never quite get back to where I was, but the thrill of the fight is alive in my spirit again!
It will never stop….nor will we
It will never quit….nor will we
This is why we ride
Kevin Byrne - Portland, OR