Before I had my son, Von, I always lead a very active life. I was an athlete that played multiple sports in high school, coached tennis during college, ran in 5ks and competed in a triathlon in my early 30s. I’ve never known what it is like to really be tired. At my last employer, I met a friend, who is still friends with me today and she introduced me to something called the spoon theory. We had become close friends, but she was chronically ill. I didn’t understand why she was tired all the time, broke plans, and was unable to keep commitments. Then one day she told me about how each day she only has so many spoons. She is forced to conserve her energy in order to get through the day, and that often means she can’t make it to events, leaves early, or pays the price of going for days afterward. Initially it was hard for me to understand. It was a constant sore spot in our friendship – because I wanted to be with her – but she just couldn’t make it work. We would have arguments, and I would try so hard to be understanding. However, you never really understand it until you live the life.
When I look back, I feel like God must have been preparing me for motherhood. He must have known that I needed to have experience with people who are chronically ill. He must have known that I needed her in my life. Now my child is the one that is holding the spoons, and my life is dictated around how he is feeling on a day to day basis. In the beginning I was truly naive about caring for a child with chronic illness. Naively, I assumed that because he was given his medication then he would be better. I assumed that he would have the same zest for life that I have always had, and I assumed that our lives wouldn’t be that much different than most families raising a child. Over the past few years, those feelings and thoughts have drastically changed. Our lives are dictated by how many spoons he carries each day. Every single day is different. Unfortunately, we make and break plans a lot. I am now the friend that people get frustrated with because we miss out on so many events. We are the family that is isolated at home – or we are out doing low stimulation events that don’t overwhelm our son.
We’ve talked extensively to his doctors about the fatigue our son experiences. All they can say is that every single disease he has – will make him tired. They have said medication can produce side effects that cause fatigue. Initially I was concerned how tired he always seemed to be. I just wanted him to be like me. Then I realized that he CAN’T be like me. I have a heart that is working properly, I have the proper hormones in my body, and I have a body that communicates effectively with my brain. He won’t ever be like me, and our lives will not be the same way I experienced childhood. This isn’t just hard on friends and family – but it is hard on my husband and me. We most certainly wanted to explore the world the way we have energy to do so. Instead, we have altered our lives to suit what he can do, and that is the best we can do as his parents. When he’s feeling well, we do the things we know that will make him the happiest. We go to the zoo, take him to fairs or carnivals, go to parks, and pack as much fun as we can in to the day.
The bad days are the ones we just don’t really talk about because we have more bad days than good. On the bad days, playing with toys makes him lose his breath, he has trouble walking up and down stairs, he asks to be carried around the house, and he asks us to “just stay home.” Playing with cars, walking from room to room, and climbing up to the couch can make him exhausted. He literally will fight tooth and nail to simply try to play. I watch him rest his head on the floor and lay and push cars next to him. When he has therapy, his therapists will note that he just loses his momentum and slows down. Often times therapy can be cut short, or they spend their time on low stimulation activities. Eating and chewing for him on these days is really hard, and we often don’t force him to even try. As a parent, there is nothing more heart breaking than watching your child want to do something so badly – but not have the energy to do it. When he is around other children, he just can’t keep up. He will try to run and play with the same intensity and I will look over and see him gasping for air or resting his head against a wall. The days he’s not feeling good – are the toughest for him and the toughest for us to watch. We get knots in our stomachs and our hearts break because we know how badly he just wants to be a kid.
I think the big question for many people that are supporting someone with a chronic illness is – HOW CAN I HELP YOU CONSERVE YOUR SPOONS. The truth is there isn’t anything you can do to help the person feel better physically. However, you can help them by making their life easier. Instead of inviting them out to your house, a restaurant or an event, make the time to visit them at their home. It’s often easiest to be home when you aren’t feeling well. Try to be flexible with people that are managing chronic illness. If you try to rely on them in the same way you would a healthy person, you will always be disappointed. It isn’t that they don’t want to be there – it is that they CAN’T be there. Do things to make their lives easier. Bring them a meal, offer to help clean their home, run a few errands for them, or bring them their favorite movie on DVD to watch at home. It’s not as easy to be friends with a chronically ill person – but I promise you the rewards of the friendship, and the devotion you will receive from appreciation is WORTH IT.