I can't believe it's been very nearly (in six more days) three months since starting the clinical trial. Everything I was so worried about before I first started seems a fading dream now. I can barely remember what it was I was fretting over. Side effects, mainly, no doubt. I hate drugs and won't even take a Tylenol for a headache unless it gets incapacitating. Did I mention I'm a hypochondriac? It is especially pronounced when taking new meds...I read the insert and find that I am having every possible side effect known to man, and coming up with a few of my own.
I look back on where I was, in the middle of a flare-up, four months ago, and I see I have come a long way. I was having a terrible time physically. Using my cane to waddle about on tired, rubbery, numb legs. But I think the main debilitating symptom was my state of mind. It's like my brain short-circuited and I was in a constant state of panic. I ended up more than once (actually 3 times) at the ER having what I was sure was a heart attack in 2 cases and an adverse event to medication on the 3rd....only to find out I was hyperventilating and having a full blown panic attack.
The doctor wanted to start me on an antidepressant (the one that's got the commercial of the little blue bouncing cartoon pill) but I was too stressed out to take it. I kept my Xanax handy like a life ring on a sinking boat.
But then I started this trial and after the fear of the unknown was conquered, I have settled into a comfortable routine. I have regained my sanity (or what I know as sanity -- if anyone were to try my brain on for size they'd probably beg to differ about what sanity means). And something amazing started to happen. My body slowly started to cooperate.
I was reading a post on MSWorld.org (a fantastic group of MSers who have come together to share experiences, knowledge, and camaraderie) questioning why MSers can't hop. I read it and thought "what?! I can hop!" so I got out of my chair and tried it. To my amazement, my feet would not come off the floor no matter how much I tried to make my voice sound like Captain Kirk giving the order! "Jump!" I shouted. But my legs yelled back "I'm givin' 'er all I've got, Captain! She's not going to jump."
Well, that ticked me off to no end. I mean, I can understand the inability to be a cyclist or a marathon runner, but a little hop?? Come on! It's not that hard, even babies can do it. So that's when it began.
I forced myself to keep trying. At least once a day (always when nobody was around)I would stand up, bend at the knees, and will myself to spring high into the air. I never actually got my entire feet off the floor, just the heels would come up a little and want to catapult me forward. Having nothing better to strive for in my life at the time, I just kept at it. This went on for a week or so and I finally got both feet to come off the ground. I was giddy with excitement and wanted to show someone. I took my 9-year-old outside and said "Stand back and watch this!" When he saw me hopping he screeched and squealed and got all giddy with me. He said "Mom!! You can hop!!" and that was the best feeling in the world.
I didn't stop there, tho. I figured if I could force myself to hop even tho I had apparently forgotten how temporarily, then maybe it would work with running.
I have tried over the past several years, to run. It's hard to explain what it feels like to have forgotten how. I didn't think it was really that I physically could NOT run, but when I tried there was this hesitancy. I'd lift one leg and try to push off with the one in back like I remembered doing all those times as a kid, but...nothing. Three gigantic Frankenstein-like clumsy steps was all I could manage.
One month later, after trying day in and day out, I again summons my son to the back yard. I felt almost like I was his age again judging by how excited I was over something so silly....
I said "Come over to this tree and stand right here." I drew a line in the sand with my toe. "Don't cross that line, okay?" He just nodded and looked confused.
"I'm going to stand behind that line with you and when I say 'GO!' we're going to race to the fence over there."
Now the fence is fifty feet away and my son said "oh, su-u-u-u-re, Mom" like he was placating a crazy person. But in another 3 seconds I had counted down and shouted "GO!" and I was leaving him in my dust.
He was dumbfounded for just long enough for me to get a head start. Then he sprang into motion and quickly caught up, jogging alongside easily as I huffed and puffed and forced my feet to plod along with all my might at what felt like it should surely be superhuman speed.
We raced again 2 more times, each time he beat me easily. Then it was time to go back in and rest. I felt like I had just done the MS150 or something. He wasn't even out of breath. He gave me a big hug and said "Mom!! You RAN! and I'm so proud of you!"
Next time we went outside he tapped me on the shoulder and took off running shouting "Tag! You're it!" I just bet he's wanted to do that with me his whole life. It made me smile and take off after him. I never did catch him, but maybe if I keep practicing while he's at school I can surprise him again.
I don't know what it is. Maybe it's the Fingolimod, maybe it's God cutting me some slack, maybe it's just the change in attitude. Whatever it is, I feel better every day.
I thought I would share that story because so much about this disease is depressing and leaves you forlorn. A story of accomplishment can be uplifting and the positive energy can be contagious. Try doing something you thought you no longer could. You might just surprise yourself.