Coming to Terms With the Real Probability of Never Experiencing Another MS Relapse
Not too long ago I wrote to you all about a clinical trial that I had been recruited to join. For those who are not in the know, I have spent the past four months participating in what had become a regular routine of medical tests and blood draws.
I was a regular at the neurologist’s office, learning each employee’s life story along the way. I confess, I am a talker and I love to learn everything that I can about each person that I meet.
I found myself in a rather strange position with this clinical trial. It is important to mention that I have always considered myself an unlucky person. I have had goodness and pure joy in my life, but the negative events have never been far behind.
Also, I just don’t have the kind of experience in the world where life floats in wonderfully and hands me my needs. I usually have to use every ounce of grit that I have to attain goals in my sights.
The All-Encompassing Effect of MS
When multiple sclerosis (MS) rolled into my life, I thought, “Of course I have a chronic illness that will torture my every thought for the rest of my life. Of course it was me. My great-grandmother lived to be 105; no one in my family has any chronic illnesses. Of course I am the one.”
Having this disease can make you very dark, if you let it. It hangs around, lurking in the shadows, whispering doubts and pain into your mind when you find a moment to be happy.
Frankly, I never believed the people who said they were relieved to finally have a diagnosis of MS — “At least now I know what it is!” they say.
I am sure there is a level at which relief hits, however; MS is not something that comes easily, to anyone.
Being diagnosed with MS means reevaluating everything you think you know about yourself. It is earth shattering.
Suddenly, all of your plans are upheaved and your identity is shaken to its core. There is nothing that MS does not touch.
It took years to find myself again after I was diagnosed. That confliction of my desires versus my realistic options was prevalent in every choice that I made as a woman, as a mother, as a wife.
Who was I to become? What was I to become? Am I a disabled person? Will I be? Where is my value? When will I sleep again?
Years of my life have been washed away to the doubt and fear of MS. The moments of worry have ticked away time in my life that could have been better spent.
The struggle becomes a salvage effort to shore up what is left and plan for a future that can shine through the loss. When we get to this point of acceptance, this mindset, is when we have finally healed as much as we can and we embrace this new version of ourselves that we have become.
I reached that acceptance a few years ago and my life has been better for it. I have been on a solid track of maintaining my body and ebbing the flow of MS and its aggressive pull on my body.
However, I have become accustomed to waking up five or six times a night. It is hard to believe it, but I have gone nearly 10 years without sleeping through the night.
I have been a happy person who is thriving, but I never healed enough to sleep — until a month ago.
The Return of Luck
Like I said, I never considered myself a lucky person. I need to amend that statement now. I am a lucky person, it is just that my luck comes in extremes, separated by extreme lengths of time.
The phase of clinical trial I was on was a “dosing trial.” This means that I was guaranteed to receive the drug and not a placebo.
I also benefitted from knowing the safety and efficacy of the drug before taking it.
This drug is very safe and I have felt no side effects at all. I take one pill every morning. Oh, and by the way, its efficacy is a 95 percent reduction in disease activity.
My last relapse, in May 2016, was the first one that I had had since September of 2008. I worked very hard to maintain my disease activity over the years and have been very fortunate to have kept my activity low.
Also, the timing of my most recent relapse was the key to where I am now. I walked into my neurologist’s office the morning after his clinic had been chosen to take part in this trial. There are only 24 people in the country who have the chance to participate — and I was patient #1.
Next page: Libby recounts her conversation with her doctor after the study.