By Elizabeth Mesic
It’s that time of year. The weather is cooling, the leaves are changing, and the chaos of fall is starting back up again. It’s time for students, teachers, and, by extension, parents, to go back to school. And while a new school year is exciting, for those with fibromyalgia and other chronic health conditions, this hectic change can easily result in a combination of stress, flares, and fatigue. So how do we prepare ourselves for the upcoming demands? We talked to fibro students, teachers, and parents about how they manage the demands of school to get a few clues on how to start this year strong, and stay strong to finish the year. We know that not all of these tips will be right for everyone, but we hope there will be plenty to pull from to help you succeed this year.
An important place to start for students with fibromyalgia is establishing a school schedule that works for you. Consider start time, and duration of your classes. Something as easy as taking a later class may work better with your morning stiffness and fibro fog. Labs that require standing must be carefully considered in relationship to other demands. Katie Rosenkrans, a 14-year-old student, writes “Back to school for most girls my age means an early morning and off with a regular start. But this is not true for me or most kids who deal with fibromyalgia. I am home schooled. I love it, as it fits for my body. I get up usually at nine in the morning. Then I start my school day by 10 a.m. I log on, as my school is online.” Katie does her gymnastics, then completes school in the evening. Understanding your body and when you perform best can help if you plan your school schedule around your needs and strengths.
Prepare a rest period into your day. Back-to-back classes may be efficient, but they can be exhausting. Find a good place on campus to relax between classes. An arboretum, library, the quad or student union, all may have quiet places where you can stretch and rest your body. As you start this year, be on the lookout for quiet, safe spaces, private corners where you can rest, recoup and then get back to your studies. Katie says, “I get as much school work done as I can. Then if I get too uncomfortable I lay down to take a nap and wait for my body to calm down. It feels better to me to move a certain way whether that means stretching or just moving around.”
Being successful at school with fibro takes more than just pacing yourself. It might be a good idea to talk to the disability resource center or counselor’s office at your school. Laura Taylor, mother to a graduated high school student with fibromyalgia, says, “As a parent of a child with fibromyalgia, among other chronic illness, you have to be your child’s best advocate. Meet with your child’s counselor, advisor and school nurse to discuss their medical condition and medications. Try to arrange meetings with their teachers and explain your child’s condition, any special needs, and/or restrictions they have. Work to create a 504 plan to provide special accommodations specific to your child’s needs during school for testing.” Disability support services or special accommodations in the classroom can take on many forms, from private testing environments to note-taking help, and give students with disabilities space and time to be successful. Laura explains, “This plan can follow your student from high school to college. As my child’s school stated, ‘we want your children to have the most comfortable and successful school career possible and that is not too much to ask for.’”
Education is a marathon not a sprint. If this is your first quarter, or your fiftieth quarter, anticipating how much you can handle at the beginning of the term can be difficult to judge when your health is uncertain. Take the minimum credits you need to be a full-time student if you’re relying on financial aid, otherwise you might consider starting with a part-time class load. Taking the minimum credits does not mean minimum effort. Starting out at this pace allows you the buffer you may need should the demands of the year negatively affect your health. The NFA’s juvenile fibromyalgia spokesperson, Emma Taylor, writes, “I owe the completion of high school to speaking up for myself and my body’s needs, staying organized with calendars/planners, and for the seeing the light (my diploma) at the end of the tunnel (chronic illness). It is possible to be passionate and motivated while, simultaneously, doing what is best for your body. It is crucial to talk to advisors about special circumstances and doing things at your own pace.”
Logistics of getting everyone to school and around school is a challenge for most parents and students at some point. Add in the extra challenges of fibromyalgia and it can seem overwhelming. That is when you need to simplify. Simplify every part of your routine from pill boxes to lunch boxes. What can be done the night before? Pack lunches, fill water bottles, line up back packs, pick out comfortable clothes and shoes. Prepare to dress in comfortable layers, so you can manage temperature changes, such as hot classes or cold conditions. This change in environment can cause extreme stress on your body that can result in stiffness and flares. What can be skipped altogether? Plan extra time for the unexpected. If you can arrive early, you can have a moment to avoid the added stress of being late and the possible flare that may follow. In our busy world, this is easier said than done, but a moment’s meditation is a much better moment than a moment spent in panic searching for parking, and then hustling to class.
This brings us to parking permits and transportation. If you are finding it difficult to get around, talk to your doctor and school about permits and locations for handicapped parking. Especially if you live in areas with inclement weather, have large campuses and great distances between classes or need to drop kids at the door. Consider the distance between classroom locations when preparing your schedule. Minimize this distance where possible. Chronic Mom blogger, Shelley, says to “take advantage of the systems in place that can save you time and energy. When my children first started school, I waited in the car pickup line for 45 minutes every single day. It was exhausting and I didn’t even get to spend quality time with my children, so they switched to taking the bus. By doing this, my kids were happy to spend more time with their friends and I had more energy for them when they got home.”
Seek out support. Are there friends in class who can share their notes if you miss class or miss it all in a fog? Are there parents who can help in a pinch for a pick up or carpool on bad days or mornings if the afternoon drive is a better schedule for you? Shelley has even asked her kids for help. “I’ve also found value in teaching my kids to be more independent. For example, making my children’s lunches every day was a big drain for me, so I taught them how to make their own. At first, I supervised them from a chair, but after some practice they’ve learned how to do it without any help. By doing this they’ve learned an important life skill and I get to save my energy for helping them with homework or supporting them in their after-school activities.”
Plan ahead: Chronic Mom says the key for her is to start the school year being prepared and organized. “For example, I purchase school supplies long before school starts, so that I don’t have to fight the crowd at the store or worry about needing to go to multiple stores when the supplies run out. I also make sure that as much paperwork as possible is filled out before the first day of school. That way I save energy on the first day for my typically overwhelmed children.” Do a dry run the day before school starts. Show your kids where to go before the start of school, so you don’t have to walk them in if you are not feeling up to it. Walk the distance between classes to give yourself an idea of how much time you will need without the stress and excitement of the first day.
For fibro teachers going back to school this fall, the NFA’s Laura Walker, who is also a part-time community college English instructor, accommodates her fibromyalgia while teaching in a way that benefits her students. “Standing in front of the class lecturing for extended periods of time takes a toll on my feet, back and voice, and can send me into a flare up if I overdo it. Since teaching is one of the best ways to learn a concept, I assign textbook chapters to pairs of students who take turns ‘teaching’ for part of the class. This enhances their learning and gives my body a bit of a break.”
Grading papers the old-school way with hard copies and a red pen stopped working for Laura years ago when her hands and shoulders screamed in pain. She advises teachers to use technology to assign, collect and grade homework. An ergonomically-correct workstation setup and regular movement breaks are essential to a more tolerable experience with prep and grading tasks. The University of California Los Angeles provides a useful office ergonomics guide to help ease the strain on your body while working at your desk.
Finally, give yourself a break. There will be days, months, and years where you will not measure up to all that you had planned. Emma reminds us: “As a student, I also find it beneficial to never compare myself to my fellow students. We should all take the time to stop and smell the roses, but also learn from them; there is a quote by Zen Shin that reads, ‘a flower doesn’t think of competing with the flower next to it. It just blooms.’ In order to grow each day and eventually bloom, we must nurture ourselves. Be your own best advocate and slow but steadily accomplish your goals.”
Whether you’re a student, parent or teacher, we hope that going back to school this fall can be a rewarding experience for you.