Tonight, I really wanted to attend an alumni event in the city. Last week, I thought I might be able to go. And, last Saturday, something strange and beautiful happened. I had a debate tournament to judge; these tournaments start at 7:30 am and are twelve hours long. I woke up at 5:20 am tired: As usual, I played Eye of the Tiger, put on my boxing gloves, and prayed for strength from God to get up. I was able to exercise for a whole hour (!) before leaving the house. Throughout the tournament, I actually had energy. It was like I travelled back in time before 2008, the year I got myasthenia gravis. For twenty some years, I didn’t worry about basic things like breathing, swallowing, or feeling my legs. I lived with a whole palette. Then, slowly the colors drained out of my world and I lost basic freedoms.
Will My Carriage Turn Into a Pumpkin?
At the final session Saturday night, the coach next to me was telling me how tired she was. I said, “Believe me I can relate.” I told her about this non-GMO diet I’ve been on for three weeks and how it might be helping me given how good I felt that day. (I did not tell her I have five illnesses and have been tired and in pain everyday for almost eight years.) I felt like Cinderella a the ball: How long would this tremendous feeling last? I had one morning in 2012 when I felt normal–when I felt like 2007. But it was just a morning; it didn’t last. By noon, the colors left and I was back to living in my sepia world. A friend of mine who has had lupus for thirty years told me she had one day–one perfect day when she felt normal and pain-free again. Basically, I haven’t felt like myself for years with the exception of that morning in 2012 and last Saturday. Sunday, I woke up tired. I lay in bed for a couple hours trying to get up and make it to church. But it just wasn’t happening. Since the weekend, my psoriasis (currently, doctor says it’s not really psoriasis like we thought but “psoriasiform dermatitis“) has been surprisingly calm. A week ago, it was so bad and I wanted to jump out of my skin. The dermatologist prescribed stronger medications and said it would take weeks for this flare-up to end. All of the sudden, I didn’t need my medications for the dermatitis. Perhaps the GMO purge I’ve been on is working. But still, this week, with regards to the myasthenia, I am as tired as I’ve ever been.
My Theory: The Calculus of Illness
The calculus of illness means there are trade-offs. Saying yes to something usually means you have to pay a price. When chronically ill people do something fun with friends, we usually pay for it. We have to plan ahead to survive. I come home feeling great but then languish in bed for hours trying to get up so I can change into pajamas, wash my face, and brush my teeth. When I was in college, before I agreed to have fun, I would need to pad my schedule just in case I got depressed so I didn’t fall behind in my work. Sometimes, I needed to say no. (I have bipolar disorder; this strategy worked.) Now, the calculus of illness is much harder with so many illnesses. How do you balance an equation with so many variables? If I go out, I have to worry about germs. When I go to church, I get sick if there are people coughing and sneezing. I may have to stay out of the sanctuary and watch in the lobby. But when people are coughing in the lobby (especially if they’re not covering their mouths), then I move to the cafe. But then, it’s really hard when there are also people coughing and sneezing in the cafe. What trade-offs are worth it? I skipped tonight because I would pay for it for days. Tomorrow morning, I have a physical therapy appointment, which was originally scheduled for Monday but I was too tired to go (of course). When 24/7 pain and fatigue become the norm, we have to ask ourselves serious questions and constantly think in advance. I’m still learning how to balance this equation; I’m not sure if there are any right answers.
6 Questions That Help Me Calculate the Cost of Illness
- Social events: Is the person(s) I’m going to be with understanding? It’s worth it when I’m with someone who lifts my spirits up and doesn’t judge me. If someone’s going to keep ask me questions without listening, it’s just not worth my emotional and physical energy.
- How sick can this make me? Getting the flu can cause a relapse; most people don’t think of the flu as deadly but people with compromised immune systems live in a different reality. Is the price a day in bed, a week in bed, or potentially a trip to the ER?
- Are there ways I can minimize the risks? Living with an autoimmune disease means being creative like going out to dinner at 4 pm or watching movies at odd hours when no one is in the theater. I often watch sermons online on Sundays.
- How can thinking in advance decrease my stress? When I was 19, it wasn’t always fun to think ahead of time with regards to bipolar disorder. For example, forgoing an event that will end late sucks, especially when your friends like staying up. But lack of sleep directly affects moods and I don’t like suicidal thoughts that can follow depressive moods. Planning ahead so I didn’t have to cram all my studying into all-nighters and saying no helped me stay sane.
- What is the net effect? Does the positive outweigh the negative? It’s hard for me to paint; I make one to two paintings a year. I can make something beautiful but I don’t have the fine motor skills I used to have. Painting fulfills me emotionally and spiritually. So, yes, each painting is worth the energy expended.
- Do I have a choice? Sometimes, we just don’t have choices. For instance, I was denied SSI disability three times despite having five illnesses. I had to work a 9 to 5 job. When I got home, I spent hours in bed trying to get up and get dinner. I was wiped out on weekends, with little energy for a social life. Those other activities didn’t put food on the table or pay for meds. Thankfully, I lived close to a good friend Esther who would visit me and call. I loved being with her; she understood the costs of illness. She took the initiative; I didn’t have to travel anywhere.
Some People Get It And Some People Don’t
These trade-offs affect our social lives in indelible ways; with invisible illnesses, not everyone can grasp what we have lost. There are people who understand: My friend Candis brought me dinner once and after we ate, she cleaned the dishes for me. She understood that having fun has a price for me–being tired and not being able to do something as simple as cleaning up. But there will always be people who don’t understand or don’t listen (Q: Why didn’t you go to church? Why didn’t you blah blah blah? A: Um, I have five diseases–I’ve been busy being sick). And sometimes, they make us feel lonelier or leave altogether. My friend, Gina St. Aubin, of Special Happens, has a special needs son. She says that even though her family lost many friends they gained “higher quality friends.” Stress can make our illnesses worse or in some cases, cause relapses. What I’ve learned is to set boundaries and by doing so, I’m happier and have room for the higher quality friends.
–Your Stylist, Jessica Gimeno