I was just listening to Bryan Adams' Summer of '69 song and it made me think about this summer and how it is almost over. But before I start writing about this summer, you ought to listen to the song first!
So let's start with June: Right after school ended, I spent a marvelous week with friends in Brigantine. It was great to sit around, talk, eat outdoors, and of course, hang out at the beach and get a mega-dose of vitamin D (which, for a MS patient like me, is very good!)
Then my first relapse hit. I was fine one day and then, Boom! It hit me like a ton of bricks. Mind you, I had not had any symptoms since November of last year. I had the usual stiffness around the neck at the end of the day and the daily fatigue - but all treatable and manageable.
In the relapse, I felt like many nerves were firing out of control. Have you ever been shocked from an electrical outlet? That is what most of my body felt like day in and day out. But there was also numbness; my left arm all the way down to my hands, and my right thigh. And I found myself experiencing the "MS Hug," a stiffness of the rib muscles that makes breathing difficult and talking too painful to attempt. I spent two and a half weeks reclined on the sofa reading many books, watching silly TV shows, and sleeping -- lots of sleeping. Solid foods were out of the question so my kidneys got a good flushing.
July: As miserable as the relapse was, at least it happened partially during the Tour de France. I would have been on the sofa for that event, medical problems or not. The difference with the relapse was that when coverage ended for the day, I didn't get up and do other things.
It took at least three weeks to get back to "normal." To be able to drive myself, to eat solid foods again, and to walk unsupported and unassisted -- these were major victories. The fatigue and sensitivity to heat and humidity are still present.
It took at least three weeks to get back to "normal." To be able to drive myself, to eat solid foods again, and to walk unsupported and unassisted -- these were major victories. The fatigue and sensitivity to heat and humidity are still present.
An important milestone toward getting back on my feet was our participation in the 2nd Annual Barbara Cook Run-Ride-Walk halfway through the month. It was wonderful to be able to complete this 31-mile ride, even as I realized that it was only the recumbent tricycles we were riding that made it possible: I cannot balance a bike any more. As it was, we didn't turn in the best performance of our lives, but we finished it.
At the end of July I did my final presentation for the NJ EXCEL program, the licensing procedure for my school administrator's credentials. The eight days' prep was accomplished with lots of breaks and naps. Fatigue, of course, was one problem (always!), but the stress of the presentation was equally difficult. I was walking a very fine line between causing another relapse and not completing the program. I avoided contact with anyone not directly involved in NJ EXCEL and tried to get as much rest as I could. Thankfully, this worked.
August: As a reward for finishing my coursework with flying colors, I spent another couple of days with my friends in Brigantine. Again, the rest was wonderful.
Upon my return, Larry and I managed to squeeze in a few short rides around home in preparation for the Green Branch Century Ride on August 8th. This is sponsored every year by the South Jersey Wheelmen, my favorite cycling club.
Just after this ride I began to feel like I was having another relapse, but a visit to the doctor confimed that I had picked up an internal infection. Like the relapse, this was also my first. The MS medicine shuts down part of the immune system's effectiveness and leaves patients open to these opportunistic infections. After a week and half of treatment with a standard anti-bacterial medication, I can now say that I am past both the relapse and the infection. This is the first time in my life that "normal" is a state I have had to fight for.
We are now looking forward to the last organized ride on August 22nd which will be the Shorefire Century with the White Clay Bicycle Club of Delaware. After this ride, we will continue to do rides around Medford and Lumberton and prepare for the MS-150 at the beginning of October. If you see us on the road, a friendly wave is always appreciated.Just after this ride I began to feel like I was having another relapse, but a visit to the doctor confimed that I had picked up an internal infection. Like the relapse, this was also my first. The MS medicine shuts down part of the immune system's effectiveness and leaves patients open to these opportunistic infections. After a week and half of treatment with a standard anti-bacterial medication, I can now say that I am past both the relapse and the infection. This is the first time in my life that "normal" is a state I have had to fight for.
Although the Summer of '09 has not been "the best days of my life" I will have to agree with Mr. Adams that "nothin' will last forever." I am indeed making progress and coping with MS and looking forward to better times in the Summer of '10.
Until then, all the best,
Nina

