"Abnormally increased responsiveness to stimuli, and scanning of the environment for threats" (The Free Dictionary, 2014.)
The longer I live with this label of MS, the more convinced I become that the most difficult and life altering consequence of this disease is the constant awareness of it's existence. I have relapsing-remitting MS, and the very essence of my disease involves periods of relapse, with severe symptoms that affect my entire world, followed inexplicably by periods of near remission.
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This is something you slowly learn to live with, this uncertainty, but it never becomes normal. It is almost like being robbed of your innocence, your ability to feel at ease is taken forever. Even in periods of relative remission (I no longer have fully symptom free periods the way I used to,) you are followed by a dark cloud of uncertainty.
This state of alertness is designed to protect us from threats and danger, and it serves a much needed purpose in those situations. When we are in an acutely dangerous environment, we must have the ability to respond. Our heart rates increase, our respiratory rate increases, our blood pressure rises, and our pupils dilate to allow us to respond to the impending destructive force headed our way.
What happens when we are in this state of alertness and vigilance for an extended period of time? In the case of multiple sclerosis, we are in this state for the rest of our lives. We never have a day without this monkey on our backs. Never again (without an absolute cure) will we feel utterly at ease.
Extended periods of hypervigilance will eventually lead to secondary problems. The main issues become anxiety, insomnia, fatigue, and social withdrawal/seclusion. Many MS patients begin to withdraw from normal social circles, becoming so overly-focused on the disease in exchange for formally enjoyable activities. This experience can be even more devastating than the physical symptoms.
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In my own life, I found that I would wake up in that early morning haze, just barely conscious from my sleep, feeling peaceful from my last dream, and immediately upon opening my eyes it was as if a voice would scream into my ear: "YOU HAVE MS!!!!!"
I would feel my heart start to race, I would sit upright, and the crushing blow of diagnosis would sink in yet again. This experience repeated itself daily for the first couple of years post diagnosis. It was very hard for me to communicate this experience to anyone I knew. I had no close friends with MS, and I did not believe my family would understand.
Soon, I became obsessed with scanning my sensory experiences, looking for a new symptom. Each day, there was something new. A new buzzing sensation, a new numb area, a new area of skin that felt "sunburned" and painful, and several times, new onset of blurry and dim vision. I have lost much of my vision in the last 5 years. I went from having 20/20 vision 5 years ago, to 200/100 today due to repeated bouts with optic neuritis.
When you live with a daily fear of new deficits, you change. That feeling of "what new symptom will I wake up with tomorrow?" How do you live your life? How do you plan your work? Your children's activities? Your driving? Many of us like to carry on like brave soldiers, but in the end it is sometimes better to plan for the worst and be happy if it isn't that bad after all.
In my work as a Nurse Practitioner, I started to experience an extension of my hypervigilance with my patients. I would see a patient in that magic 20-40 year age bracket who was complaining of neurologic symptoms such as numbness, fatigue, balance issues, or visual deficits, and I would feel that familiar sense of dread. I would immediately think: "Oh God what if this is MS?" I would jump to this conclusion too quickly, and I could sense that I was becoming biased and non-objective in these cases.
I am a firm believer in getting an MS diagnosis as quickly as possible for my patients, so that treatment can be initiated as soon as possible. This is also difficult as a provider, because I understand that once that diagnosis is made, my patient will also go through this life altering change. How could I lead a patient through the process of diagnosis, knowing what was waiting at the end? I spent a great deal of time seeking advice from other NPs and physicians, trying to overcome this. I learned to manage it, but the worry will always be present.
Here is the good news: You can learn to manage this issue. If you find yourself staying home rather than enjoying your normal activities, losing sleep worrying about MS, feeling tremendous anxiety, or any other life-altering symptom, get help. Sometimes it is as simple as finding the right support group. Sometimes, individual or group counseling is helpful. The point is, don't just suffer alone needlessly. And most importantly: Don't feel like you are "crazy." You aren't!
Sometimes, I just want to hear reality, don't you? I want to hear that I am not insane, that this experience is real, and that others are going through similar experiences. Connecting through mutual struggle is something I find incredibly necessary in the case of any chronic condition, especially MS. I am hopeful that my sharing of my own experience will help someone out there having a particularly difficult day.