9 tips to exercise with Myasthenia Gravis
Statutory warning: Opinions and suggestions in this post are completely my personal ones. From my years of graduating in a course called Myasthenia Gravis.
So, should one exercise when diagnosed with Myasthenia Gravis or not?
This is one difficult question to answer in a clear cut yes or a no.
I shall tell you why. This extremely rare autoimmune disorder called Myasthenia Gravis confuses the day light out of us. It’s all about muscle weakness, right? Especially the extremities, like the hands and feet and the facial muscles as also the eyes.
So, if you exercise-the muscles get tired and the symptoms get aggravated. If you do not exercise, well, the muscles lose strength. Boing!!!!!
Having said that, I personally have come to the conclusion that ideally, the answer is a Yes.
I, ideally don’t want anyone to make the mistake I did, for whatever reasons.
Post my 3rd surgery in 2015 that removed some ‘hotspots’ from the right lung, I was told not to exercise for a while. I took the doctor’s advice seriously.
What followed next was a few months of remission when I was letting my body heal by itself and stayed away from any kind of exercise, yes not even Yoga or breathing exercise. Big mistake.
Within a few more months, I went into what is called a Myasthenia Crisis, followed by a respiratory failure in October last. No exercise again. Almost a year and a half of no physical workout. In fact, I led a life of a near couch potato. I mean apart from office, I barely moved my #$%.
The body took the toll. My diaphragm decided, it had no work to do and stopped work altogether. This led to sleepless nights for months. Inability to sleep on the back. Sleep disorder, hallucinations, and nightmares, sleep walking. I was breathing in O2 but not breathing out enough CO2. This eventually led to a respiratory failure (non-Myasthenic though).
My muscles all over the body had lost their strength. My lean legs gave Jacqueline Fernandez a run for her money. Not only were they thin now, they were feeble. I fell all over the place, on the stairs, in the room, on the road. I ended up with stitches on both the knees and was again bed (Ar)rested!!!!
Our body is a machine. It has to be oiled regularly, by way of exercise and massages and well, yes, steams and saunas. Since the last two are a complete no-no for MG patients, we are left with workouts and a good weekly body rub.
Here are some tips to keep in mind, while exercising:
- Consult your Doctor: Only when you get the green flag from him or she does you take to walking, running, jogging, aerobics, gyming, cycling, weight training, yoga, pranayama. Yes, there are many MG patients who do all of this.
- Choose your workout: Listen to your body and choose a physical activity closest to your personality. A quite low energy person trying to dribble at aerobics with MG in tow is… err, not the best decisions to make.
- Never alone: However, I have a friend, help, family member close to you while you exercise. We tend to get excited at our own energy levels and over do things. Better to fall head over heels in love rather than on a treadmill. No? I recently invested in a T7 Treadmill, which has been of great help in leg muscle movement. You might want to give it a thought post consultation with your physician. Click here for the link.
- Never on your own: Let us not try and get extra smart and youtube exercises to save some cash. Landing on the wrong foot (literally) might land us up in the hospital with added injuries and a very heavy bill. Instead, get a coach. A trainer. A yoga guru. And please, do ensure they do their homework on Myasthenia Gravis.
- Never without a support: I make sure to exercise either next to a bed or a chair. When in doubt, stop, sit, relax, catch a breath and then start again. When breathless, listen to your body and rest. I in fact, do a number of exercises sitting on the bed or chair, on the not so good days.
- Never without a mat and a mate: Yes ideally, keep a soft mat underneath even if not doing yoga. Stay protected from injuries. Having a company for exercise is a great idea. Two birds with one stone you would hit. Not only would you be exercising more regularly, you shall be ensuring good health of one more person in your family.
- Never without these two things close to you: One, your mobile phone. Two, a bottle of water. I keep a third thing too. A handful of almonds and raisins. Just in case the sugar drops. Yes, many
Myasthenics have diabetes due to steroids.
- Never overshooting your limit: This is by far, the most important point. As my Doctor says if you think you can do a 100%, stop at 70%. Never ever over-exert. A few days when I continued till I was completely exhausted, I ended up skipping my Yoga for the next two days. I was so drained.
- Never forget to Breathe: Whatever form of exercise you decide to pick, do not forget to breathe and do not forget to do your breathing exercises. Remember, Myasthenia Gravis has everything to do with muscle weakness and lungs take a toll like how. Keeping them happy and healthy is of utmost importance.
It is only now, more than 3 months post the respiratory failure, that I am able to bend forward and touch my toes. Something I used to with effortless ease all my life. Offcourse, I have to thank the doctors for suggesting this life saver of a non-intrusive ventilator that I have to put on for 2 hours in the day and through the night. It is called a Bi Pap machine. To buy it click here if you are in India. Yes, it is costly but the good part is it is available with an EMI option. Those outside India can check here.
Yoga has helped me tremendously, once again, not only in gaining muscle strength but also in getting me out of the depression that I was slipping into due to general weakness and effects of steroids.
Pawan, my Yoga Guru, has helped me sail through my toughest times, I hope to get him here on the blog soon so that we could together reach out to many others with neuromuscular disorders and help them too.
My workout ideally begins with a very deep meditation, opening up the chakras, energizing the body and doing ‘kaal gupti’, followed by kriyas. Our next target is Surya Namaskar and then begin with pranayama.
My body even now has knots all over. I can feel the knots inside. They have lessened from what they were 3 months back. But, I still have a long way to go. Regular massages too are of help.
All in all, come to think of it, exercise is a must for all. Whatever be the form. Our body indeed is a machine. It indeed is a temple. It has to be kept neat and clean, worshiped, thanked and yes, oiled. It has to be exercised else it gets rusted. This is my personal experience.
I do not know yet if I would be able to run the 21 km Delhi Half Marathon again, but yes the 7 km dream run, is what I am aspiring for, in 2017 winters.
So….are you going to take my advice seriously and give your health a thought?
Instead of just spending loads, on a very expensive, high calorie not so healthy meal at a plush restaurant or spending a bomb on that dress, for that one party, where no one would be bothered about what you wear or not wear, would you please invest in yourself? Your health?
Not necessarily money in a gym but perhaps some time and effort at home or the colony park?
Do it. For your sake and for the sake of your loved ones.
Irrespective of whether you have MG or you don’t.