I live with a monster. He is always following me around, sneaking up from behind walls and closets. He follows me all day long, until I can kickbox him to the curb, only to find the next morning he’s been jumping on my back all night long, sticking pins and needles in my feet and fingers, and keeping me in a headlock until I wake up and find him standing there. The monster’s name is Pain, and I hate him.
About five years ago, Rob and I took a weekend trip to Chicago for our fifteen year anniversary. We love the city. We were both born and raised in Chicago, and it always feels like home to us. We were like kids again-so excited. Every picture from that weekend has one of us caught with Gino’s East Pizza, Garrett’s Popcorn, or a Chicago hot dog stuffed in our mouths in-between big smiles.
In between our many food stops, my feet started hurting. Not just heavy feet from walking around too much. Aching. The feeling of walking on glass, along with a huge bout of nausea and a weird feverish feeling. The next day I noticed my fingers and wrists were really sore, so I decided I should probably have my normally healthy self checked out once we got home. Long story short, I was diagnosed with Rheumatoid Arthritis and referred to, who I now refer to as the best doctor ever in the world, Dr. Natali Balog at the South Bend Clinic.
Dr. Balog taught me a lot about the disease, mostly It is not a very nice disease. It doesn’t play well with others, and it often doesn’t cooperate with doctors. Every paitent who suffers from RA is different, because the disease attacks individuals in unique ways. It started out very progressively for me, leaving me feeling tied in knots while trying to juggle the normal routine of three girls, a husband, a few dogs, and trying to save the world all at once.
With all that said, it’s been a few years now of adjusting my lifestyle, medications, expectations on myself or others expectations of me. The biggest shift I have had to make in myself has been in my own perception of myself as a Super-Mommy. I have realized that I can’t do it all. I cannot get it all done. I have to ask for help from others around me that are already worn out and that is not easy for me. On most days, I’d rather not ask for help, so I end up exhausted by the end of the day and have nothing to offer my family except a grouchy face and a messy house.
So I felt sorry for myself. And I pouted. And I got mad. But none of that really helped. I started reading some books about people who live with pain. I also discovered that there are a lot of Mom’s like me, trying to keep their Super Mommy game face on while trying to deal with chronic depression, back pain, extreme fatigue, cancer, etc. Once I started talking about it, I realized that many people hide behind their pain and suffer in their own homes because it seems easier that way. Our culture often views people struggling with pain as “weak”. I think quite the opposite is true. Super Mommy’s kicking Pain to the curb takes a lot of strength. Some of my friends who have dealt with way more pain than I ever have are some of the strongest people I know.
As I am ever trying to be a student of life and taking every opportunity to learn,
I was able to ask Dr. Balog, my very own rheumetologist, and a doctor who sees lots of patients who deal with chronic pain at severe levels, a few questions about Super Mommy’s dealing with chronic pain:
For a Mom living with a chronic pain condition such as RA or other pain causing illnesses, what are a few things you would offer as helpful information to: Their spouse or partner, children, and other family members or close friends
As with any chronic disease, it is most important for patients and families to understand the disease process. When a spouse has been diagnosed with diabetes, the family unit typically, or should change eating habits of family meals to support the family member, the same with arthritic conditions. The family is a team and works together. When we are doing something with my daughter and she is not particularly happy with the situation, example a meeting or an extra day of work, working late, etc, I let her know that she is part of our family team and being a willing participant improves everyone’s situation. Same with the home front, family needs to be willing, helpful participants in home chores/ duties when a member of the family suffers a chronic disease like an arthritic condition. There also has to be some understanding, like a bad day at the office, there can be bad emotional days with folks with chronic arthritic conditions, not just from the pain but also from the inability to perform up to that individual’s standards with certain tasks.
What ways can a Super Mommy (a mom who is trying to “get it all done” and still be a nice person to her spouse and children) take care of herself, to live in a way that the pain does not get in the way of everything else?
When suffering from chronic conditions be it arthritic of any other, we have to accept our limitations. Not let our disease define us or keep us from doing things, but do it in moderation with reasonable expectations. “Super Mommy” is a newer phenomenon with women putting pressure on themselves to have the perfect home, family, body, etc. We collectively as a society allow ourselves to be to busy to take care of ourselves. Sunday was created as a day of rest, but rarely do we rest. Life is too short to, be it in perfect health or with disease. Time with our children is short. The best “Super Mom” is the one that sets a good example for her family. We put our family first by nature, but also taking care of ourselves with good eating and exercise habits. Know your own limitations and do not over extend with activities. Families need to be together in quality time so put limitations on so many activities of the family to be together- play together, rest together, know each other and needs of the time. Children learn from our example…they will learn how to eat and exercise from us, sleeping habits, pushing ourselves to we are frazzled.
There is a fine line somewhere between “Really hurting and just frustrated” and Feeling sorry for myself”. What ways can a Super Mommy keep herself from going over that edge into a gloominess that brings everyone around her down?
I have learned from some of my sickest patients, one whom have lost her eyesight from a rheumatologic disease or are severally deformed. The quotes that I keep in my mind from my patients, “Life is Beautiful!” and the other is “Make it a great day!” It is easy for all of us to dwell in the negative. Negative energy usually makes us feel worse. Many of my patients with the worst disease, that I think, how do they do it, count their blessings everyday. They don’t focus on what they have lost, they focus on what they have.
Although I hate living with Pain, I love a lot of what it has taught me, and the things I have learned about It from wonderful doctors like Dr. Balog. I know I can’t be a Super Mom without the help of others. I know my family needs me. I need to be a team player, but I need to expect that from them as well. Most importantly, I kick Pain and all his dumb side kicks to the curb by taking the time to make myself strong so I can help others who are weak.
Facebook Friends Respond:
I have learned that people actually want to be wanted. It’s totally okay (and even desired) to ask for help. I love it when friends need me. Turns out they feel the same way.
Fourteen of the years I raised my kids, I had psoiratic arthritis, and learned that I had to take time to take care of myself as well as my kids. My son was with me one time at the rheumatologist and the Dr. told him to help me around the house.
From what I have learned dealing with chronic pain, I would say: Learn to live with a less than spotless home, or figure out how to budget for cleaning help. Make time for exercise that increases your function. Don’t feel guilty if some nights you serve the kids frozen chicken nuggets, pizza, or boxed mac and cheese because you don’t feel up to standing in the kitchen making a made from scratch meal.
Ellen Painter Dollar
This article is published in the September 2012 edition of The Family Magazine of Michiana.