MS Hope Foundation

After spending most of yesterday in agonizing pain from annoying MS symptoms, I am sitting at my kitchen counter debating whether or not I should go to dinner this evening with my husband and friends. I keep telling myself if I rest and take it easy I will be better by our 8:30 pm reservation. Then I remember that in about 30 minutes, my two-year-old needs to be picked up from school and my son will be home soon after that. There goes that plan. I have to cook dinner for the kids, manage bathtime, get myself ready, and get in the car to get into NYC on time.

Here’s my thought process: “I love my friends and I haven’t seen them in so long. And if I cancel now, they will think I’m lying. But if I do not cancel, I will pay for this one night out for the next three days and my husband will complain that I never have energy for him. I should just stay home. But what about those new heels I want to wear?”

It’s a struggle every time, but with MS, you might have to make changes to your life to accommodate the disease. Having “MS Lite” (my own term for having no major disabilities), I didn’t think I would have to worry about making changes (big or small). But for many people with MS, it’s not just worrying that your sitter cancelled. You have to think about wheel-chair accessibility, stairs, hot restaurants with insufficient air conditioning, bladder failure, etc., etc. It’s enough to make a person choose not to go out — and I can’t blame them!

I don’t feel qualified to lecture others on what kinds of changes they need to make to their daily life due to MS because I haven’t had to drastically restructure mine, but here’s what I have been doing that might be helpful to you:

• I go to bed when I’m tired. I no longer feel bad saying I need to go to bed when I’m tired. Leaving my husband to sit alone on the front porch in the evening is not my first choice. I know it annoys him, but I hope one day he will understand my decision to get enough rest is best for both of us and our young children.
• I plan my social calendar in advance. I can’t manage more than two social obligations per week. I know that if I want to do my gym classes, school picks-ups and drop-offs, afterschool activities, and playground trips, I need to get to bed early. That may mean 8:30 p.m. three nights a week, but I force myself to do it. I remind myself of that when things get hectic.
• I am learning to take breaks. My MS pains and fatigue are often ignored because I feel tremendous guilt for taking naps while my children are home and awake. I am proud to say that yesterday, for the first time, I laid down while my daughter played with a sitter. I felt bad and wasn’t able to sleep, but I am starting to learn that I am a better mom when I am well-rested. I can last through bathtime, TV time, and story time without losing my patience. Quality time is better then quantity. (Moms, Dads, whoever with or without MS need to do this, too!)

Then there are the changes I need to work on…

• Asking for help. There is no such thing as supermom — super woman or man either! It doesn’t make me a better person if I do everything myself. In fact, that just makes me tired and cranky, which is not good for anyone.
• Not caring if I miss a workout. I don’t need to sign up for seven days of spin classes when I really only have the energy for three. Again, taking it easy on yourself when you need to does not make you weak, it makes you smart.
• Putting more effort into relationships that matter. I am lucky to have some really great friends who I can lean on for support (and vice versa). I have realized over the years that putting more effort into maintaining a few meaningful friendships is worth a lot more than wasting time on superficial relationships.

How have you had to make changes to your life for MS? What are your best suggestions for other readers? Please share!

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