We are forever losing spoons in our house. Even after washing dishes, there will be fewer and fewer spoons in the silverware drawer. I used to blame my teenage children, who by the way, said they never took spoons to their rooms. Sometimes, after good room cleanings, the spoons would miraculously reappear. But most of the time, they were just gone. I don’t know where they go but they are probably having a party with the missing socks somewhere. Or maybe the nursery rhyme is really true and the dish ran away with the spoon and never brought it back. However, it is really annoying when you fix a bowl of soup only to find no spoons in the drawer.
I have been diagnosed with MS for a couple of months now. My left leg is still numb and weak. I have a little numbness in my right foot. On bad days, my balance is off. I don’t do steps well and I can’t walk long distances. But what I notice the most is the fatigue. MS fatigue is well-documented and experienced by many with MS. It is not related to how much sleep I get or even the activities I am doing. In fact, it is hard to make logical sense of it. I’m learning that little about this disease can be contained in a neat box or a logical list, MS does what it will.
This fatigue feels debilitating. It robs me of things that I love to do. It is not just a physical fatigue, it’s an emotional and mental fatigue as well. There is an analogy that I’ve been familiar with for some time and is used by those who have chronic illnesses. Fatigue is part of many chronic illnesses. The analogy suggests that everyone has a certain number of spoons in their possession. Each spoon represents activities that use a person’s energy. Everyone has a different number of spoons. Those with a chronic illness will have fewer spoons than a person who is high energy. When the spoons are gone, so is the person’s energy for the day.
It is a helpful analogy for me now as I face days where I can’t do all that I want to do or all that I used to do. Decisions about how I will spend my time are now viewed through a new filter. Some of my new reality are:
- Things that used to be “free” now take up spoons. Taking a shower and doing my hair used to not count in my daily energy planning. Now it takes up a good portion of my daily allotment. If I shower in the morning, I’m exhausted and can’t do as much as I want during the day. I have found that showering at night is a necessity.
- I don’t want to be bothered with things that “waste” my valuable spoons. Things that I would have wanted to do myself (home diy projects) now I want to hire someone else to do. I’m pretty selfish about things that take away my ability to do the things that I really love. Not only do I think about keeping only objects that bring me joy, I want to make sure I have some spoons to do the things I enjoy as well.
- Things having nothing to do with sleep or activity can rob me of spoons. Heat and cold can both wipe away some spoons by increasing my fatigue. Stress and anxiety can also rob me of energy. A stressful day at work can make me more fatigued in the evening. Worrying about what others think robs me of valuable energy.
- Some days have less spoons than others and on those days, being gentle with me is really important. Protecting my spoons has become something I think about a lot. Sometimes I have to say no, even if it feels like I’m disappointing those whom I love. This goes against how I had lived my life previously. I don’t have to cook every meal. I don’t have to make every decision.
I get grumpy when the spoons are missing from the silverware drawer. I like to have a spoon when I eat my soup or ice cream. And I get grumpy when I don’t feel like I can do all that I want to do. MS is making me re-evaluate many things in my life. Metal becomes stronger through refining it, taking out the imperfections and leaving the purer stronger metal. If MS is going to make me stronger (see Stronger) than I guess the refining process will include protecting the things that use my energy.
In the meantime, I will grieve the loss of my spoons both those in my silverware drawer and those representing my energy level. And contemplate the age-old mystery, where did the dish and spoon run away to? Since Pittsburgh is expecting subzero temps this week, I think they ran away to somewhere much warmer.