In 1997, Boyd Edwards called it a good day if he stayed awake for eight straight hours. His chronic fatigue, at low levels for years since his HIV infection, had escalated dramatically after starting Crixivan (indinavir). "I'd move from the bed to the couch," the former nurse recalls, "and then find myself out of breath and needing to lie down." Switching to a combo of saquinavir (Fortovase) and nelfinavir (Viracept) reduced the fatigue sufficiently so he could slowly restart regular exercise, a practice he'd abandoned years earlier, leaving him badly out of shape and then some. Edwards began with light weight training -- "the first two weeks were hell" -- and gradually added aerobics. "Within a few weeks, my energy level was way up and I began regaining muscle mass." A year later, he added water aerobics (done in a pool), which is especially helpful for people with chronic illness. Eventually he became so gung-ho that he trained as an instructor. Edwards' before-and-after stats are telling: pre-routine, he weighed 220 pounds and his body fat was a whopping 30 percent (8 to 18 percent is optimal for guys, 12 to 22 percent for gals). Today, Edwards is a fit-as-a-fiddle 190 pounds, 19 percent of it fat. But more important, he now has the strength and stamina to work out three times a week, each day doing water and land aerobics and progressive resistance exercise. "To appreciate where I am now, you should have seen me in the beginning," he says. "I have more energy, I look better, and mentally I feel like a million bucks."
For HIVers seeking to improve quality of life, "encouraging exercise is one of the most beneficial recommendations," says Ed Kinser, whose Kinetic Sports Clinic in Houston helps HIVers pump and sweat their way past wasting. Countless studies confirm what common sense suggests: A custom-made exercise program gives your health a big boost, protecting everything from your immune system to your lean body mass, and improving your appetite, energy, mood and even absorption of meds. Getting the lead out of your ass and pushing yourself can also build muscle in your self-esteem.
Your regimen should include three types of fitness: aerobics, strength training and stretching -- ideally all in the same program. Aerobic exercise includes walking, jogging, bicycling, swimming or anything else that significantly increases your heartbeat for at least 20 minutes (sex doesn't count -- too easy). Strength training, which usually includes lifting weights, is one of the best ways to increase lean body mass. This type of exercise improves your ability to do day-to-day activities, creates better sleep patterns and can enhance your sense of well-being. Stretching at the beginning or end of your program increases your muscles' range of motion, helping to develop the flexibility that is important for balance, mobility and avoiding injury.
How to get started? Houston exercise physiologist, HIVer Jaymes Alexander, and body-building bruiser, recommends beginning -- as Edwards did -- with light to low-intensity activity for the first few weeks to improve conditioning without overstressing the immune function. Then gradually ramp up. "Your plan should consist of exercising three to four times a week on alternate days to give the muscles a chance to rest and rebuild." He says, ideally, this should include at least 20 minutes of aerobic activity and eight to 10 resistance exercises that train major muscle groups. Consulting a trainer is key to learning proper techniques for avoiding injury. Alexander adds two cautions: "Always have a certified trainer help you tailor a program to your needs. And before starting out, consult your doc for advice on how your ability to exercise may be affected by HIV-related conditions and possible side effects of meds."
But the toughest part can be taking the first step. Most HIVers know that exercise is good for you, but -- excuses, excuses -- they can't get motivated. The best tip, experts agree, is to pick types of exercise you enjoy. And don't set impossible goals, or be too hard on yourself. A little exercise is better than none, and once you get into the swing, chances are -- between the feel-good endorphins and the look-better encouragement -- you'll be a natural.
After two decades of pumping iron, this is Alexander's fourth year on the competitive circuit. He's now training for the Capital of Texas Bodybuilding Show in June.
TESTED POZ: 1994. "I was planning to enter the Reserves, so I went for a physical. My positive result was very unexpected. I knew there was a chance, but I was still shocked."
REGIMEN: nelfinavir/3TC/d4T, Bactrim, acyclovir. "I'm on my third protease -- all three with no side effects. Lucky me."
STATS: 384 CD4s; less than 10,000 viral load
WEEKLY WORKOUT: "I spend anywhere from two to four hours in the gym a day. Weights I do in a five-day session and take Saturday and Sunday off." He works his legs daily, his abs three times a week, and each body part -- shoulders, back, chest and arms -- once weekly. He also does cardio sessions three times a week on the ESX cross-trainer.
DIET: "During the season, I clean up my diet and eat extra protein. My precontest routine starts 13 weeks before a show and consists of lean sources of protein such as turkey and chicken breast (no skin), tuna and other fish, and egg whites. Plus rice, potatoes and yams for carbs."
SUPPLEMENTS: Multivitamin, vitamins C and E, and beta-carotene. "I swear by L-glutamine to maintain my lean body mass."
MOTIVATION: "As a kid, I collected comic books and always wanted to look like one of the superheroes."
REWARDS: "The possibility that I can inspire others to obtain their dreams or goals, whether in bodybuilding or just taking control of their health and life."
ADVICE: "Find a knowledgeable personal trainer who can guide you toward what works best for you. This is paramount in making your gym time productive."
Morgan is a peer support leader and trainer for AIDS Foundation Houston. She's also the proud mom of a daughter, 8, and will celebrate her first wedding anniversary in June.
TESTED POZ: 1995
REGIMEN: nelfinavir/d4T/3TC, estrogen, atenolol (an anti-hypertension drug)
STATS: 400 CD4s; viral load: 4,000
WEEKLY WORKOUT: "After facilitating HIV support groups four days a week, I'm tired. Exercising in my own house is convenient. Besides, I don't have to worry about other people seeing what I have on." Three times a week, she also indulges in "hot tub relaxation with atmosphere music." But Tuesdays and Thursdays, she gets down to work, with sit-ups, squats, bench-presses and brisk walking.
DIET: "I try to eat sensibly: salads, chicken, turkey and fish. I only eat red meat occasionally, because it's hard on the digestive system. As far as vegetables, I love corn, string beans, cabbage and spinach. I do treat myself to desserts, and my husband's good at surprising me with a Snickers bar."
SUPPLEMENTS: Multivitamin, vitamin E and green tea
MOTIVATION: "I was always a slim-figured person -- I even did some modeling. But once I started taking meds, I got big all over. Now I'm getting back in shape. My daughter and husband both make sure I take my medications, eat healthy and exercise."
REWARDS: "My husband thinks I look good. He's always telling me that I am the love of his life, and just knowing that he cares so much for me makes me take better care of myself. Also, hearing my daughter say that she's proud of her mommy and she wants to be just like her, 'a leader.'"
ADVICE: "Surround yourself with a network of supportive people, and they will be there for you during bad times and good."
A former NASA analyst, Green has been an avid fundraiser for over a decade. His latest passion is the American Ride for the End of AIDS.
TESTED POZ: 1990
REGIMEN: nevirapine/3TC/ d4T, acyclovir
STATS: 738 CD4s; undetectable viral load
WEEKLY WORKOUT: "I'm not one of those people who says, 'Oh, it's Tuesday -- time to do abs.' If the sun is out, I'm on the bike. If it's raining, I'm in the gym. Since I can barely find the shower in the morning, I do all my gym training on weeknights and weekends. Each week, I try to ride a minimum of 100 miles -- about eight to 10 hours on the road."
DIET: "Nothing fried. No pig or cow. I eat lots of rice, pasta and grains, and at least one large salad daily. I satisfy my sweet tooth with low-fat frozen yogurt. An Iron Man or Power Bar is also perfect for those long bike rides."
SUPPLEMENTS: Multivitamin, calcium, magnesium, zinc; L-Arginine and L-Ornithine (for endurance and muscle-building); and creatine, pregnenolone and DHEA (for strength and muscle-building)
MOTIVATION: "The perception of the HIV-positive person as frail. After being a slow, dumpy kid, I am in the best condition ever."
REWARDS: "Back in '90, 2000 seemed impossibly distant. Now no challenge seems impossible. I am commemorating a decade of living with HIV by riding my bicycle across both Alaska and Texas!"
ADVICE: "Break your goal down into manageable and measurable steps. Remove the physical and mental obstacles along the way, and stay focused on the ultimate desire. Never, ever give up!"
Woleben worked in retail management for 14 years before going on disability in 1995. Faced with failing health, she was badgered by a poz pal into exercising and working out.
TESTED POZ: 1989
REGIMEN: Efavirenz/ 3TC/ d4T/ abacavir, acyclovir, Bactrim, Zoloft. "It's my eighth cocktail -- and the most successful so far."
STATS: 239 CD4s -- "The first time I've been above 200 since '93"; viral load: 315. "I've been as high as 80,000."
WEEKLY WORKOUT: She works her abs three days a week, along with a different body part each time, taking three days off in between. "On Saturdays I try to do some type of outside aerobic activity -- roller-blading is my latest craze. I could probably lose the small amount of belly that I do have, but I know what it's like to feel nauseated all the time, and I'm enjoying food right now."
DIET: "Sweets are my downfall. But since I love to cook, I tend to eat balanced meals that include lots of vegetables."
SUPPLEMENTS: Multivitamin, vitamin C, folic acid (to combat anemia), chromium (to help digestion), milk thistle (for liver detoxification), ginkgo biloba (for mental clarity), and omega-3 and flaxseed oils (for energy)
MOTIVATION: "I battle fatigue on a daily basis. Some days I don't even feel like getting dressed, much less doing my hair. But knowing that after my workout I will have so much more energy and a sense of accomplishment gets my butt to the gym."
REWARDS: "Bathing-suit season. Now my friends say I not only look great, but I'm getting to be too muscular. I think they're jealous."
ADVICE: "Choose activities that you get pleasure from. And remember to share your achievements -- they can be a great motivator for others."
After winning the U.S. National Championship for the American Aerobics Association, Perez founded Ernest and Company Fitness.
TESTED POZ: 1987. "For the first seven years, I told no one but my family and a few friends. I came out publicly about my HIV status at the 1994 Gay Games."
REGIMEN: Saquinavir/AZT/3TC, Bactrim and acyclovir. "The meds slow me down, and I don't have time to be slow right now."
STATS: "Hovering between 16 and 112 CD4s for six years"; viral load: 20,000.
WEEKLY WORKOUT: Teaches five one-hour weight-training, strength-building and aerobics (both low-impact and step) classes a day, beginning at 5 a.m. and going strong until 8 p.m. Sunday is his day off. "Because I burn a lot of calories teaching, I try to do at least two days in the weight room just on my own."
DIET: "I eat all day -- I have to. If I don't, I become a total bitch and can't teach very well. I take in a lot of protein and carbs. I don't eat a lot of junk food -- food is fuel for me."
SUPPLEMENTS: Multivitamin, B-complex and vitamin C
MOTIVATION: "When I'm teaching a class, I'm on stage. I love watching them laugh. If you're in my class and not showing me your pearly whites, I'm on you."
REWARDS: "Realizing we're making a difference in people's lives. Also owning my own place: When somebody gives me grief, I just ask them whose name is out front."
ADVICE: "Find something fun. It doesn't matter if it's exercising at home with Richard Simmons' 'Sweating to the Oldies.' And don't work out alone. You'll have days when you're down, but if you train with a partner or a group, you'll catch their energy."
"Through training, I've learned to forgive my body for not being tall, blond and beautiful, and to revel instead in its strength and stamina."
So here I am, on this blue-sky fall day, pushing my body down South Street with few of the other 5,000 runners in the Philadelphia Marathon in sight. Some cops directing traffic give me the thumbs up; others look at me like I'm a pain in their ass for keeping them away from their Sunday barbecues. But I smile at each one. No bad karma is going to intrude on my hard-won self-esteem.
I always wanted to run a marathon. In 1990, my last year of college, I was a fitness trainer majoring in phys ed. My final paper was on training athletes for events, with myself as my subject, going through six months of extensive workouts that included long runs, sprints and weights. I had a Reebok body that turned heads.
During this period, I nonchalantly walked into the department of health and took an HIV test. My new guy and I had decided that once we both tested negative, we could finally have the wild and crazy sex that we'd been murmuring about during our fluid-free make-out sessions. When my test came back positive, the relationship ended (later that same day), and I went into another world. I became afraid of my body. Afraid of the sexual attention it attracted. Afraid that it might deteriorate right before my eyes. So I guarded my body carefully, padding it with donuts, candy and cake -- food that hadn't touched my lips in a decade. No one looked at me anymore.
After I graduated, I moved back to my hometown in Pennsylvania and never did anything more physically stressful than taking a walk. I wore one-size-fits-all shapeless clothes; I made decisions in a sugar haze; I was (I see now) in shock. For years I struggled with my weight, finally "redefining" my fat as "goddess flesh" in my search for peace with my body. Then, in 1997, I had a little brush with death: My platelets were revolting because of an HIV-related bone-marrow disease, and I was bleeding like crazy. I ended up having a hysterectomy. After surgery, I could barely walk.
The six months it took me to recover were more than a physical bottom; I was filled with fear. What I needed was to find a way to reaffirm my capacity to live a full life. When I heard that cyclist Lance Armstrong had won the Tour de France while battling testicular cancer, I decided that training for the 26.2-mile Philadelphia Marathon was just the affirmation I needed. I wanted to push and push and push -- and stop allowing HIV to dictate what I could do.
For 10 months, I ran six days a week, rain or shine, usually clocking two to four miles along the Delaware River. On Sundays I'd wake up at 5:00 a.m. and do my long runs, starting off at 10 miles and building up to 22. In winter, the path hardened, giving me shin splints. In summer, I carried bottles of water in my jog bra and in both hands. My day off was reserved for the weekly transfusion that helps me cope with my platelet problem -- the only AIDS medication I take. The side effects -- fatigue, nausea, anemia and ice-cold extremities -- can be brutal, but fortunately they last only a day.
Now, at mile six, I am wondering what happened to all that training. There are 20.2 miles to go, and my legs feel like lead. I find myself keeping pace with an old guy running alone in a t-shirt that reads "The Abominable Slow Man." Everyone cheers him on. While we run together, he tells me about his back surgeries and how hard it is to keep his 78-year-old body moving. I tell him about my medical challenges, carefully editing out AIDS. We agree that running makes us feel alive. Suddenly I realize I've slowed my pace and am feeling better. I move on ahead with renewed faith. I started this running thing to feel strong about my body. I lost a little weight but a ton of negative thinking. Through training, I've learned to forgive my body for not being tall, blond and beautiful, and to revel instead in its strength and stamina. Now, whenever I feel tempted by some popular diet, I remind myself: It could all end tomorrow -- do I really want my last meal on Earth to be a Slimfast shake?
As I run through the open fields of Fairmont Park, I think of my friend Dawn Averritt, who is trekking the entire length of the Appalachian Trail on a five-drug combination therapy. For a moment, I feel her by my side, telling me I can do this. Suddenly I'm hit with memories of all the people I've lost in the past decade, and I stifle a sob. Some died bitter and angry, others just resigned. It's always messy, and with little grace. And they're all a part of me now.
My feet begin to blister at mile 11. As I reach a point where the race doubles back on itself, I pass near the finish line. Some marathoners are already there, but I'll be running for at least two and a half more hours. How easy it would be to fade into the crowd, take off my race numbers and disappear. But I need to finish this race as much as I need to breathe. The pain worsens, each body part taking its turn to curse me -- first feet, then right knee, next left shoulder, finally back. But I'm on autopilot. At mile 20, I turn and head back the way I came for the final 6.2. By mile 24 every part of my body is shrilly complaining, and I am near collapse -- but my mind is focused only on the road.
At mile 25 a prerecorded message announces, "You are almost done with the Philadelphia Marathon. Smile and show your numbers." I manage a grimace for the camera. Then I start to pick up speed. In the last half-mile strangers cheer and yell, "You're almost there." It becomes my mantra: You're almost there, almost there, almost there. I repeat it through clenched teeth as tears flow down my cheeks. I can see the finish line. As I cross it, a man comes over and asks if I am all right. I break down: I made it.
The night before, I almost talked myself out of racing. I had a million excuses. But I ignored them, and I'm glad. I don't know if my next marathon will be a 26.2 race through Philadelphia or a trek through the Himalayas. I do know that I will never use my illness as an excuse for anything again.
Trained for less than a year to run the Philadelphia Marathon. A fitness trainer before diagnosis, she let it all go to flab with a vengeance. Now she's up and running again.
JOB: Poet, activist, speaker
TESTED POZ: 1990
REGIMEN: A weekly IV platelet transfusion (winRho) for HIV-related bone marrow disease
STATS: 620 CD4s; viral load, 450
WEEKLY WORKOUT: "I usually run six days a week, but right now I'm training for the Pump 'n' Run. You go five kilometers, then you do as many reps of chest pressing 60 percent of your body weight as you can. For every rep, you shave one minute off your time. This is something I could win!"
DIET: "My diet is highly nutrient-dense, very focused. I can only have four ounces of protein at each meal, and I get most complex carbohydrates from vegetables."
SUPPLEMENTS: A one-a-day multivitamin; River adds glutamine and amino acids during training