When MS gets in the Way

There’s a common saying, “I have MS, MS does not have me.” It’s supposed to be an empowering message. Unfortunately, MS does have me a lot of the time. My disability is fairly advanced - meaning I don’t walk anymore. So it’s hard to say that MS doesn’t have me when almost every aspect of my life is affected by my lack of mobility. MS does certainly get in my way.

I’m a planner – I like to have things planned out – so the unpredictability of MS and unanswered questions that arise day-to-day (or even hour-by hour) is doubly frustrating. On the other hand, there is no spontaneity in a life with MS. I have to plan every trip outside. Is where I’m going accessible? Will there be an accessible bathroom nearby? What is the weather going to be like? Or, most importantly, how am I going to feel?

So what do I do when MS gets in my way? The only answer is to figure things out. You can’t give in to MS but rather you need to maneuver around obstacles as they arise, seek solutions, and be open to new ways of thinking.

I am lucky enough to still be able to work. However, what/where/how I can work has changed. Since I am in a wheelchair, and getting to the office (not to mention getting ready for a day in the office) is more complicated and tiring, I work from home. There is an up and down side to this. I am a social person so I miss the daily interaction with people. But since my MS can be so exhausting, eliminating travel to the office is a huge help to my quality of life each day. Working from home, or telecommuting as I do, enables me to engage my mind, bring in a paycheck, and feel useful. However, as my MS progresses, adjustments have to be made.

One of the most challenging things about adjusting to MS is it’s a process. You have to be a chameleon and learn to change with every turn.  Be kind to yourself.  It’s a struggle every time, but with MS, you might have to make changes to your life to accommodate the disease. Prepare for the worst; Hope for the best. Realize that in struggle there is strength.