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Sunday, January 25, 2015

MS: A New Reality Every 15 Minutes

What is your reality?

Reality is an interesting concept, when you stop to think about it. What does it mean, exactly? I suppose reality consists of the things you see, touch, feel, smell, and hear. The things all around you, and your self- perception make up your reality. Reality is something you begin to count on, something that is predictable and reliable.

What happens when your reality is ever changing, and utterly unpredictable?

With a chronic illness, especially one like relapsing-remitting MS, reality can change every 15 minutes. We can wake up feeling incredibly great, energetic, rested, and ready for the day. But soon after waking, we may begin to experience weakness, fatigue, and other neurological symptoms. We may begin to experience a full blown relapse at any moment, even losing the ability to walk, or a sudden visual loss.

This ever changing reality causes extreme frustration, sadness, and confusion. I find myself with two distinct personalities: My "sick" self, and my "healthy" self. Who will I be today?

What if you have plans for lunch with friends? What if you have a 12 hour work shift scheduled? What if today happens to be Christmas, or another holiday, with dozens of family members coming for dinner? It is incredibly difficult to make any plans when life is so unpredictable.

For a period of time, I found myself spending all of my time in my house, unwilling to leave. I was off of work on sick leave after a relapse. I didn't dare make any plans, and I spent my days on the couch, huddled under a blanket. Friends would ask me to meet for coffee or a meal, and I would make up excuses. I was terrified to leave. My mindset had completely changed, and now I thought of myself as damaged, ill, and weak.

I refused to answer my phone, for fear of being asked to meet with friends. I was astounded at how quickly I had changed my entire self image, and how rapidly I withdrew from life. I now thought of myself as nothing but sick. The truth was, I was capable of much more than I was doing, but I could not bring myself to get up, get outside, and start to live again.

This is the moment we need to challenge ourselves the most. After we have been knocked down by a relapse, we struggle to get back up. This is the moment we need to use every ounce of strength to regain our lives. If we allow it, MS will completely rule our lives, and this is dangerous. Beyond the physical challenges of a relapse, we must learn to practice extreme psychological endurance and strength. This is the moment that determines our future: How will we respond psychologically to the next relapse? The physical recovery is not entirely within our control, but how about the psychological recovery? That is something we can truly control, and that should make us feel more powerful. The control of our psychological response to relapse is essential to recovery and long-term happiness with MS.

The key to long term happiness with any incurable condition is the ability to recover from the repeated punches thrown by the disease. We can anticipate that we will be struck with new symptoms and disabling relapses, and this is our unfortunate reality. Like a professional boxer who ducks before the punch strikes, the trick is learn to anticipate the psychological impact of these attacks. If we can learn to prepare ourselves for the emotional impacts of relapse, we can recover more quickly and regain our lives. I have learned to anticipate that I will feel a series of predictable emotions when I have a relapse: Shock, fear, anger, sadness/hopelessness, followed by acceptance. Anticipating these emotions, and preparing for their onset helps me recover more quickly, and spend less time huddled under the blanket, withdrawn from my life.

Being able to predict something helps us feel more in control. Feeling helpless is what drives negative emotional responses, so the trick is do everything you can to feel more powerful. You have ultimate control over your response, and sometimes that is enough to get through the day.

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