Your Choice: Exist with It or Live with It
“I know this is going to sound like an insanely ridiculous thing for a wife to say, but I would appreciate it if you would stop doing the dinner dishes.”
Well that actually does sound like an insanely ridiculous thing for a wife to say to her husband, but I said it nonetheless. It was another baby step in my overall plan to take back the life that MS would destroy if I allowed it.
After the diagnosis of multiple sclerosis, physicians, pharmaceutical companies, hospitals, and MS patient-advocacy groups unleashed a mountain of printed material and videos upon us, and we set about the task of learning all we could. Even prior to diagnosis, our suspicions of MS lead us to online research. We began with well-known and well-respected medical sites, then gravitated toward something less formal but slightly more tangible — other people with MS.
Hard research and doctors’ advice are valuable tools, but nothing helps you to understand the reality of life with MS better than people who are living it. Although the stories are varied, the kinship and the lessons to be learned are invaluable. The common theme is that people are living with MS, not merely existing. I wanted to join that crowd.
So back to why I asked my husband to stop doing the dinner dishes. Some of my symptoms were quite severe. My limbs didn’t want to cooperate and I was perpetually fatigued, but my husband willingly took up the slack. Giving in to this thing would be the easiest thing in the world, but I knew in my heart that would not be wise. I decided to get myself back in the driver’s seat of my own life.
I pledged — to no one but myself, really — that no matter how difficult my day was, no matter what else I could not accomplish, I would manage to have dinner on the table, however simple it may be. Then I thought about all the things that had become too much for me, and then about the things that were a struggle, but still manageable if I set my mind to it. Dinner dishes fell in that category.
“You already do so much, and the dinner dishes are something I can handle, no matter how bad off I am. I’ve got the stool so I can sit and take as long as I like. It’s just that you move faster than me and always beat me to it. It makes me feel so guilty.” I believe I even detected a hint of joy in my husband’s eyes at this win-win situation.
That old MS guilt is a force to be reckoned with. It’s always ready to poke away at your self esteem. It’s not like I asked for MS, or that I enjoy my downtime, but I feel guilty anyway. Caution is required. If there ARE things that I can do, then I can’t allow myself to slack off. I figure that’s a sure fire way to fall into a trap and become increasingly dependent, something I desperately want to avoid. If I wanted to take more control, that was as good a place as any to begin.
The thing about relapsing/remitting MS is that your abilities and disabilities are always evolving. You have to learn to adapt to new situations very quickly. Change is the name of the game. Finding a comfortable rut and staying there is just not going to happen. Reevaluation of life, taking the temperature, as my husband would say, would have to become the constant theme.
Baby steps in the form of chores would turn to giant steps in the direction of my life as I reclaimed the driver’s seat. No, things would never be the way they were, but they are good — very, very good. I don’t merely exist with MS. I live with it!
March is Multiple Sclerosis Education & Awareness Month. Read all about it:
- A Diagnosis Odyssey: Learn why a diagnosis of MS may take years.
- Who Gets It and Why: Get the who, what, where, when, why, and how of it.
- Diagnosis, Denial, Due Diligence: After the diagnosis there may be a period of denial. Then the real work begins.
- Longing for Liberation: Controversial new Liberation Treatment turns conventional MS wisdom on its head.
Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo