It seems much longer than the 20 days that have elapsed since my adventure in Wyoming. After returning only 3 weeks ago tomorrow, we (Richard and I) began flagyl 2 days later on Thursday night. My own response was the usual short hour until loss of function - a little less than usual - and mental confusion - much more than usual and the lethargy lasting for days. I still have the emotional flatness and great amounts of slow, fuzzy thinking. And the vertigo, something always present, this time in huge waves requiring me to hold on and wait till it passed every time I changed position. Even now, 13 days after ending the pulse, if I move suddenly, I must stop and wait, but briefly now. I look at this pulse in wonder.
Day 1 - The Easiest Day.
In the 28th month of relentless, daily treatment, I feel that I have earned the right to stand at the vantage point of a second or third tier trailblazer. I stand as Pancho to Don Quixote or Tonto to the Lone Ranger. There are a couple of operatic characters nibbling at my sub-conscious but you get the point. My first piece of loud vocalization is as Guner said: "You may get discouraged, but don't give up". Jim wished for each of us in his discourse for the new year the stubbornness and long, long vision (and I modestly add: courage) it takes to do this. I have a very real problem with sharing MY body with all the freeloaders who are doing just that. I am indignant - I have worked very hard for my place in life and the workplace and when I found that these nasty little devious creatures were stealing my life, I had to fight back. After spending much too much time in their immediate presence and on their level, I am leaving them behind.
It was the opinion of our esteemed resident pharmacist who made that remark, which I have incorporated, that this is a life sentence. We can accept that. We have learned to adjust, to be grateful for the chence to do the battle, and to sing the praises of getting better, which were not chapters in the volume before this someday best seller.
My 36th pulse will begin soon. I think it won't be the emormous investment of courage and sacrifice of time that it was in the first 25 or so. My battle will be one of defense, of patrolling the perimeter, so to speak, within a year if I am correct. My question has become my mantra - why don't all MS patients give this "a try" for a year? There is so much to be regained.
Having finished 26 months of this sometimes hellish protocol, I have been through the months based only on hope. Then came the months of disbelief and "I couldn't do that before", about twenty-three of the two together. I am now in the reality phase and I love it.
My visit to my doctor was a few weeks ago. For his benefit and to prove once again to myself that all this was indeed true, I insisted on doing the shin test, the stork test, the feet-together-eyes closed-arms outstretched for 30 seconds (we really need to name that because we are going to need it more and more). Just as "normal" people could do, I did all with an A+. I still have trouble getting past 5 seconds standing on my "bad foot" alone, but never did I think I could even stand on that foot at one time, since I couldn't stand on both at the same time without a cane or walker.