Phase II: Living

After getting past the initial shock of my MS diagnosis and the beginning of my treatment (Phase I), the next thing that I have to do is learn to live with my MS. For non MSers, it is impossible to understand the difficulty that this brings. You have to learn how to do some mundane daily tasks while lugging around your MS right behind you. MS touches every part of my life and is on my mind constantly. Maybe that is because it is still so new to me, but it is rare that I ever “forget” about my MS. It simply is a part of who I am.

So how do I adjust to this new life? It’s not that I am shy about my disease, or embarrassed when new issues arise. It is simply that I cannot shed my MS symptoms and they are omnipresent.

While walking Jack, I take notice of my sore legs. While at a concert, I have to sit down and not dance with my friends. While walking through my company office, I am uncomfortable with my instability and balance problems. While driving a car, I worry about my legs going numb. Signs of my MS are everywhere that I go and in everything that I do. Sometimes I can ignore it, most times I cannot.

It has become obvious that living with MS comes with a whole new set of problems. While I am hopeful that my medication is working, no medication will alleviate the constant fatigue that I endure. Something as simple as walking to my car now takes an extra, concerted effort. The best friend to a person living with MS is rest. Unfortunately, as a 23 year old living in an active city, rest is something that is often hard to get.

When I talk to other MSers, they are shocked that I only get 7 hours of sleep a night. They are astounded that I work all day and then go out at night. After all, I am a young man who enjoys sports, the outdoors, snowboarding, dancing, and so many other activities. I cannot yet sacrifice this lifestyle that I love. A sedentary lifestyle is one of the scariest prospects to me. Even to others living with the disease, I am a rare case – somebody who defies MS logic.

Most likely, though, I won’t always be the exception to the rule.

Sooner or later, I will have to help my body by giving what it needs – rest. Sure, sleeping till 2pm on the weekends is a good start, but regular rest will help my body stay in its best shape for years to come. Despite my fatigue and balance problems, it is hard to remember to constantly rest and let my MS-riddled body re-energize.

Maybe it is because I am talking to so many other people living with MS who are in wheelchairs, or use a cane, but I am determined to stay active and not let this disease run my life. There is a fine line between pushing yourself and being stupid. I guess that is the essence living with MS.