Daily life with MS

Teacher. Wife. Reunion planner. Mother. Student. Daughter. Friend. These are some of my many titles. Like millions of other women, I multitask like nobody’s business! I can switch gears at the drop of a hat. Recently, I went to a barbeque on Friday night, a graduation party on Saturday night, and a birthday luau on Sunday afternoon—and I ended my weekend visiting a sick aunt in the hospital. I was on autopilot with no time to think—just do and go. I had no time to feel exhausted. It’s taken me this entire week to recover from my whirlwind weekend.

How do women who happen to have a chronic condition manage to do it all? If you’re like me—stubborn—you’ve probably figured out that having a condition like multiple sclerosis (MS) means you may have to alter your lifestyle. But realizing something and doing it aren’t always the same thing!

Since I was diagnosed six years ago, I’ve had to learn (sometimes the hard way) to put myself first, think about my health, and say no when I really cannot do something. My mantra has become, “MS may not be life-ending, but it is surely life-altering.” This mantra has helped my friends and family learn that when I say no, it’s not personal—it’s me genuinely needing to take care of myself.

“Finding ways to set limits may be difficult, but it can be done.”

Saying no can be very difficult for me, especially if people in our inner circle are used to me always saying yes. It wasn’t until I landed in the hospital that I realized I had to slow down, take care of myself, and minimize my stress as much as possible.

Now, six years after my diagnosis, I do a lot of self-talk. I have learned not to be so hard on myself when I truly don’t want to or physically can’t do something. Even my husband and kids sometimes forget that I have MS because I try my best to carry on as if I am not exhausted, numb, and tingly all over my body—as if I don’t have an incurable, chronic condition. But true to form, MS rears its head after I have pushed myself too hard and done too much. Of course, everybody’s limits are different. As a person with MS, finding ways to set limits may be difficult, but it can be done.

Discover tips that may help you understand your limits and work around them.

1. Put your health first
   

   Not all of my friends and family were able to understand this at first, and that’s OK. I’m the one who has to live with MS and experience the repercussions of saying yes when I should have said no. It is better to stay healthy than to force myself to do too much and pay for it later.

2. Let go of the fear of disappointing others
   

   This is easier said than done. In the long run, I have to live with myself. I’m the one who feels the fatigue on a daily basis. It is OK for me to gently remind them that I am doing my best, and that while I appreciate the offer or invitation, I must decline because I’m not feeling well—and leave it there! I must set my limits and let loved ones come to terms with my new way of operating in their own time.

3. Ask for help when you need it
   

   This is extremely difficult for me because I am normally so independent and used to doing things with minimal assistance. Over the years, I have learned that most people in my family or circle of friends are willing to help, but they worry they will offend me if they offer assistance. I am assertive and ask for what I need—within reason of course!

4. Find your balance
   

   I still struggle with this, but I refuse to set so many limits that I stop actually living. I only have one life to live, and I feel it is my duty to myself that I recognize my strengths, acknowledge my weaknesses, and make the most out of the days of my life. This is a work in progress, but it’s still progress!