In The Paper Gown Workout Diary, patients spend a week chronicling the exercise routines they follow to help manage medical conditions.
This time: Amy, a U.K.-based editor in her mid-30s, was diagnosed with relapsing-remitting multiple sclerosis in 2013. MS is a disease of the central nervous system marked by damage to myelin, a fatty substance that protects nerve fibers in the brain and spinal cord. The disease is often explained as the immune system attacking itself. These attacks, known as relapses, come with symptoms including decreased mobility and cognitive function, nerve pain, eyesight problems and loss of motor control.
Day 1: Moving every muscle
I wake up earlier than I want to. My body feels too agitated to go back to sleep, so I make coffee. The aches in my arms and legs, along with the itchy tingle on my skin, have become familiar sensations since I was diagnosed five years ago with relapsing-remitting multiple sclerosis, the most common type, two weeks before my 30th birthday.
I spend most of the day sitting at my desk in my home workspace, knowing I’ll be moving every muscle in my body at my trampoline workout class tonight.
Exercise plays an important role in managing my MS symptoms. While experts used to discourage MS patients from working out, the medical community has changed its tune. These days, exercise is thought to help stall the progression of the disease and even repair bodily damage caused by relapses, such as muscle spasms, loss of balance and fatigue — a daily struggle for me.
Just before 6 p.m., I head to my trampoline class, which I discovered a few months ago when my sister dragged me with her. At first, the fast routines and full-body exercises — all those leg kicks and high bounces — felt impossible, but I can mostly keep up now. In fact, I can’t get enough of the class. The soft, elastic surface absorbs shock, making trampoline workouts ideal for people nursing injuries, or anyone in need of a low-impact activity.
It’s not as though I’ve been a fitness buff the whole time I’ve had MS. In fact, after my mum’s death two years ago, I fell into a health rut. Then last January, I got serious about changing my lifestyle habits, including my relationship with exercise. Since then, I’ve lost 25 lbs and gained a ton of energy. I’ve also developed better all-over muscle tone. This is super important when you have MS, which makes you prone to muscle weakness. When relapses target nerves in the spinal cord, it can be hard to even move.
Tonight’s workout is 50 minutes of circuit training — 20 different stations, plus a mixture of weights and trampoline workouts. I’m having a flare-up of MS symptoms, namely fatigue and nerve disturbances in my legs, so I don’t expect to last for much of the class. I surprise myself and only skip two or three of the stations. By the end, my legs feel better and my nerve pain is nearly gone.
Day 2: Bouncing through the pain
My body feels calm when I wake up, thanks to last night’s workout. My legs do itch and tingle as the morning wears on, but the discomfort isn’t nearly as bad as yesterday’s all-consuming pain. When it gets that bad, I wish I had a reboot switch.
I take today easier than yesterday, and don’t get much work done. Instead, I focus on making it to tonight’s class, another trampoline workout. This class, called Boogie Bounce, is taught by the same instructor, but it doesn’t involve circuit training. Instead, Boogie Bounce consists of aerobic and trampoline exercises set to different songs, capped off by muscle-toning workouts to turn that pizza dough in my belly into abs. (Well, maybe.) The soundtrack for tonight’s class includes a Sia song and “This Is Me” from The Greatest Showman. The music motivates me to bounce through the pain. The 50 minutes (almost) fly by.
Day 3: How about this weather
It’s been really hot for the past few days, and my body is struggling to adjust. Exposure to high temperatures can make old MS symptoms flare up. It’s an unfortunate but well-observed medical phenomenon. Temperature spikes, both hot and cold, seem to have a pronounced effect on the relapse that affected both of my legs.
This flare-up is pretty bad. I take a break from intensive exercise today and do some light walking (to Starbucks) instead. But I feel depleted, physically and mentally, and spend most of the day longing for a nap. In the evening, I relax with a few episodes of Haters Back Off! and lament its cancellation.
Day 4: Road trip
My body is getting used to the heat. The itching in my legs is settling down, although it still nags me throughout my morning coffee with my sister.
No workouts for me today because I have to travel three hours to a hospital for my monthly infusion of Tysabri, a powerful “disease-modifying drug” designed to cut down on the frequency and severity of relapses. My local hospital doesn’t offer the hour-long treatment, which is administered via an IV drip and followed by a saline flush.
Even though my infusions are far away, I feel lucky that I’m able to get them at all. I haven’t had any new relapses since beginning Tysabri four years ago.
Some people with MS can’t take Tysabri because they’re carriers for a common virus, called the JC virus. Others can’t tolerate the drug due to allergies or compromised immune systems. It’s also not approved for those with primary progressive and secondary progressive forms of MS, who typically see their symptoms worsen over time.
Anything that keeps the disease at bay, for now, is worth the trip.
After the long journey home, I feel groggy. Dinner and bed by 8 p.m. for this party animal.
Day 5 and Day 6: Revenge Body
I work every Saturday and Sunday for Harper’s Bazaar as the weekend editor. I love my job, and I especially love that I can do it from home. Although there’s not much time to work out over the weekend, I squeeze in some light weight-lifting at home.
I’ve always had terrible upper body strength; it once felt impossible to lift even my shopping bags. But I’m getting stronger.
I became inspired to use dumbbells between aerobic workouts earlier this year, when I binged Revenge Body With Khloé Kardashian. I like to copy a move that Revenge Body trainer Luke Milton recommended to a contestant: He told her to do upward punches with the dumbbells as quickly as possible. At first, lifting even 1kg (2.2 lbs) in each hand was damn painful. I was out of breath after five punches. But now I’m doing 100 punches at a time, with a 3-kg (6.6-lb) weight in each hand.
The progress feels so satisfying. Plus, I can carry more shopping bags. So it’s a total win-win (for me, not my bank balance).
Day 7: Stayin’ alive
Monday morning marks the end of my working weekend. I like to begin the day with an early Boogie Bounce session at 9:40 a.m. I start out feeling sleepy, but by the end of my class I’m sweaty and revitalized. I head for coffee afterward and give myself the rest of the day off — no work and no working out. It feels like a well-deserved break. And, most importantly, I feel healthy.
Want to write your own workout diary? Send a pitch to ThePaperGown@zocdoc.com.