If you have Lupus one of the main fears we all have are those dreaded flares! That is when all the Lupus symptoms hit 10 at the same time leaving you able to do nothing but sit on the couch or lay in the bed for several days, weeks, or months on end. The pain is so bad we are unable to sleep, sometimes eating is an issue, and depression can set in. Major flares hurt to the point it’s almost impossible to stand, sit, lay down, and just be. Due to extreme pain and fatigue just moving from the bed to the couch during a flare is an accomplishment. There are mild flares where they will all hit at the same time but it won’t be as debilitating as a major flare. We can normally push through those at a slow pace or rest through it, even though we never feel rested even after sleeping all day if we can.
I used to have flares that lasted for months at a time. After talking with my doctors they suggested I start working out. Well they didn’t suggest, they all kind of told me to, yelled at me to, got at mad at me for not doing it, and they eventually made me do it. All of my 13 doctors said it, 5 of them actually wrote me a prescription for physical therapy that included Yoga, low impact Dance, and low impact workout at the gym. I thought they were crazy honestly. I could barely walk a whole block without getting shortness of breath, chest pains, heart palpitations, and my body would shake, so how in the world was I going to workout at the gym? With all my fear and stubbornness aside, I finally gave in and just did it. And boy am I glad I did!!
It took me a while to find my groove. I had to go from what I knew as a professional dancer, high school dance educator and former aerobic fitness instructor and create a whole new way to workout by changing my approach, goals, and the way I looked at working out in general. I had to reprogram myself from counting calories, distance, and pushing it to the max with weights. I changed my focus to time limits, stamina, breathing, maintaining, sweating and fun.
As an employed disabled part-time dance teacher with Lupus teaching more than one class at a time was very hard. So I based my time and energy exertion level from that. Our classes are 75 minutes and I wanted to last for 2 classes so I made my workout time 3 hours to train my body to be used to exerting physical energy for a little longer than 2 classes.
MY CURRENT WORKOUT ROUTINE
2o minute elliptical, 10 minute stretch/active rest, 25 minute air climber, 10 minute stretch/active rest, 20 minute floor ab workout, 5 minute stretch, 30 minute ab machine workout (includes rest in between sets), 30 minute leg workout on machines (includes stretch as an active rest), 20 minute arm and chest workout on machines, 5 minute cool down and 5 minute final whole body stretch.
I use my areas of weakness as things I need to improve on as goals. I give myself limitations like a job description. I know what I can and cannot do and I stick to that. Light weights, low resistance, mix of fast and slow paced cardio so I never stop, I just slow down and breath through it as an active rest. Reps of of 12 or less, no weights higher than 40 for arms, 70 for abs and thighs, 130 for legs/sitting squats. Anything higher will put too much pressure on my joints. I DO NOT LET ANYONE STEER ME AWAY FROM THAT! I don’t look at what others are doing, I wear my baseball cap and shades and I zone out! Focused on me and my fight with Lupus. On a bad day I do the same workout but less time for the cardio and machines. My stretch and rest time never changes.
Since I am unable to dance like I used to, I dance on the cardio machines. How? I never hold on, for one it hurts my hands/fingers to hold something. Joint pain attacks all joints in the body. Nothing is safe. I use it to my advantage and I just let my arms dance as I move to the beat of the songs in my playlist, which helps me work harder, sweat more, and have fun!
HOW DID I DO IT?
1. I started slow and small. (5 minute on a bike, walking to the store a few streets away, carrying a gallon of water around the store never putting it down, etc. )
2. I increased intensity and weights in small increments.
3. I adapted an Alkaline diet complete with turmeric, hemp oil, hemp seeds, and of course alkaline/kangen water. (Nutritionists orders)
4. I scheduled my workouts and rest in my daily and weekly schedules.
5. I made the best playlist ever of all my favorite songs.
6. I dedicated myself to my workout routine.
7. I treat working out like a job and use it as my way to fight back against the Lupus.
8. I made going to the gym and Yoga a major part of my life.
9. My main goal is to SWEAT, SWEAT, SWEAT for the entire workout!
10. No matter what I have FUN, FUN, FUN!!
HOW I FOUND MY FOOD TRIGGERS, FLARE TRIGGERS, AND PATTERNS
My mom and I watched for Flare triggers and patterns. I did nothing for a few months and still flared. I put it on a calendar and saw the pattern. Then it all made sense. I found out that I do bring some flares on due to stress, over exertion. But food, weather, and hormones bring them on too. I know that when I ovulate I have a mild flare and when I’m on my feminine cycle I have a major flare so I plan my activities around that so I can work through it and rest when needed. There’s a lot of mental preparation and motivation involved.
Eliminating food triggers played a huge role in the decrease of my flares. I was eating lots of “natural/healthy” foods that were actually Lupus triggers for me like tomatoes/tomato products (bbq sauce, steak sauce, ketchup, spaghetti sauce), oranges, grapefruit, soy, alfalfa sprouts, energy drinks and I didn’t know it at the time.
It varies for each of us. I had to play close attention by not eating or doing anything in a whole day and then eating one specific food item or doing one specific activity and then seeing how my body reacted to it. I would do it more than once to identify what made me worse, what made me feel better, and what had no effect at all.
I also tested out my energy limit. I know I have a 3 hour limit because by hour 5 my body shuts down I get very irritable due to extreme pain, and brain fog sets in. So I give myself 1hr max travel time back and forth and 3hrs of activity only. If I have to do more I rest at some point during the activity by sitting down, being quiet and still.
VERY IMPORTANT- I also schedule rests before and after activity days to let my body recover and reduce the likelihood of a flare. I plan activity a week in advance so I can rest and not do too much.
WORKING OUT AND YOGA GAVE ME MY LIFE BACK!!!!
As a Lupie I was suffering from prednisone based insomnia, muscle atrophy, and weight gain. The Lupus also gave me weight fluctuation and weight loss so every year since diagnosis I was a different size.
Pre-Lupus diagnosis my normal size was between 150-155lbs
Lupus year 1 on high dose prednisone – 176lbs
Lupus year 2 on semi-high dose prednisone and no physical gym workout for half the year- 123lbs
Lupus year 3 on low dose prednisone and dedicated workout- 140lbs
Lupus year 4 on extremely low dose prednisone and dedicated workout and diet – 152lbs
I am now in year 4 and I have my body back!!! It feels so good to look like myself again. Now all I have to do is maintain. I go to the gym 3 times a week and yoga 2 times a week and I teach dance once a week. Yes I get tired but I am able to do it and I do because I am fighting for my life. I am now able to go back home and visit and help people as well. I found my voice and now that I’m out of the Department of Education I have a larger platform. I’m not confined by their rules and regulations. I can help people all over the world and I do! I am a Support Group Facilitator through the Lupus Foundation of America, I’m an admin for Lupus and Me on Facebook, and with the help of a fellow Lupie-Licious Warrior I also started my own page on Facebook called Lupie-Licious Fitness and I am able to help fellow Lupies find their way to activity, health and wellness through the gym, yoga and healthy eating for the individual.
I feel like the old me with a new twist, a new and improved version of myself. I was broken, in and out of a wheelchair, I now have a rollator because I couldn’t walk just 2 months ago! Yoga and gym fixed that too. I was a caterpillar and my wings have grown beautifully. I’m ready to fly and soar, not sure how far I can go yet but I’m enjoying the journey. I feel so free, Lupus tried to kill me but dance, yoga, and the gym saved my life. Now I am saving the lives of others and yes I am finally reborn!!!