by Robyn Cohen
It took me almost a full year to recover after my first MS relapse. As this episode unravelled my life, there were a lot of ups and downs, both emotionally and physically. Today, seven years later, I rest as much as I can, take vitamins, eat well, exercise and take my medication weekly. I have not had an attack since 2009. Even so, I want to raise awareness of how an MS relapse can have a lasting impact on your life. Such is living with an unpredictable, episodic illness.
Multiple sclerosis is tricky and cruel. The fear of your next attack alone can debilitate you. Every morning, I open my eyes, wiggle my toes, and feel grateful that I’m able to conquer my day in four-inch stilettos! Without my doctor’s and family’s support, both financially and emotionally, I’m not sure where I would be today.
When it all started
I woke up on June 15, 2009, nine months after my son was born, feeling exhausted. That particular morning, my right leg felt tired with the sensation of pins and needles. I tried to shake it off, stand on it, elevate it, but nothing seemed to help. By the end of the week my symptoms had worsened, so I called my father who took me to the hospital.
I saw a neurologist. His name was Dr. Amit Bar-Or. He asked me to do a series of hand gestures and to walk a straight line, and told me that I needed to get an MRI. Little did I know that this brilliant and kind doctor would eventually become my hero. I looked at my father, this six-foot man who represents nothing but strength to me, and with tears beginning to roll down my face, I said, “Dad I can’t take an MRI, the machine looks like a coffin.” He looked at me and said, “Robyn, this is the one thing I can’t do for you.”
When the MRI was over, I remember the nurse telling me my family was waiting for me in the next room. My family? Was I dying? I was seated in front of Dr. Bar-Or, and behind me, my father had red eyes, my mother was pale as a ghost, and my brother’s eyes were filled with tears.
I was scared. Dr. Bar-Or called it myelitis. He told me I was experiencing an initial attack and explained that my very own cells were attacking my body, and that there was a miscommunication between my brain and my body. I nodded. He continued, “Myelitis is part of the multiple sclerosis family.”
My first thought was a wheelchair, and then wondering who would take care of my son. I’m only 35. My thoughts were cut short, with Dr. Bar-Or saying, “Robyn I will prescribe you the steroid treatments immediately. You’ll do this for five days. Other medications will be given to you to help you with the side effects.” At that point, I knew that my life had changed forever. And for the next year and a half, I was up and down.
Following my treatments, I went to see Dr. Bar-Or for a follow-up meeting. He started talking about preventative medications and telling me that I would be on them for the rest of my life. At this point I couldn’t walk around a standard size dining room table before I needed to sit down, as the tingles turned my lower body into a marionette. I couldn’t drive or go for a walk with my son. I was immobile, scared and dependent on others to do everything and anything. The only place I felt safe was in the water where I could walk freely, which is why I started physical therapy in the pool.
The relapse
My mother called one day and suggested we go look for a new bathing suit, but I knew that she really wanted to help me with my fear of leaving my condo. She picked me up and we went to a department store. We stayed for about 40 minutes, and I insisted that I was feeling good enough to walk three blocks to the car. As we crossed the street on this 90 degree hot and humid day, I looked at her and said, “My legs are giving out, I’m not going to make it across.” She grabbed my arm and as my weight shifted onto her, she somehow managed to get me inside a store where I collapsed.
Lying on the cold floor, my bare legs freezing and in extreme pain, my upper body went into shock and I felt like I was having an epileptic attack. Completely uncontrollable, I cried in pain and looked at my mother who was blaming herself. The security guard asked if I had an alcohol or drug problem and said we had to leave the store. My normally soft spoken mother said, “My daughter has an illness, bring me a chair and help me.”
I was humiliated as people gathered around me staring, and all I could think about was if someone I knew saw me. I finally looked up to see my brother who grabbed the biggest man he could find and said, “Sir, please help me, that is my sister. We need to lift her up and carry her into the car that’s waiting outside.” Frantically crying thinking my life as I knew it was over, I was home.
I spent the rest of the day in bed humiliated and exhausted from the episode, and worrying about when and where my MS would flare up again. On top of that, my husband didn’t come home that evening and at that point I knew my marriage was over. This was my lowest point in my journey with MS.
Looking ahead
I can vividly remember that day I went down. I was devastated. I was informed that stress is a major cause of a relapse and I was beyond stressed at that point, but managed to get through it. Although the relapse was temporary, it’s had a lasting impact on my son’s and my life, but with time we’ve learned to manage and I’ve accepted that there are bad days – but the good days outnumber them. I’m now better prepared for what surprises may arise down the road because of my MS.
There are far too many people affected by this disease who aren’t as lucky, and don’t have the help or support they need. The fact is that research represents hope and empowerment to anyone who has MS. It helps us negate the fear of what could happen to us tomorrow. We must ensure that our incredible doctors and researchers continue their efforts.
Have you had a recent relapse? Let us know about your experience in the comments below. Also, if you have any questions about MS, reach out to one of our MS Navigators at msnavigators@mssociety.ca or 1-844-859-6789.