In November 2019, after an optometry appointment, another with the doctor, two magnetic resonances, a CT scan, a lumbar puncture and several blood tests, I was diagnosed with multiple sclerosis. I was 29 years old. Within a month, from mid-October to mid-November 2019, I had accumulated more symptoms than I could count with fingers on my hands (and I was seeing double!).
Blurred and double vision, incessant vertigo, imbalance, loss of mobility in my left arm and leg, loss of taste in the left side of my mouth, marked difficulty engaging the muscles controlling my sphincters, general weakness, numbness, etc. For an active, sporty, independent person in addition to being a yoga teacher like me, it was a bit of a nightmare.
In a few weeks, I could no longer drive, I could no longer walk outside without a stick or the precious help of my spouse, or practice my favorite sports activities (the downward facing dog position when you are constantly extremely dizzy: medium). In short, I collected enough symptoms to worry the specialists. “You will have to quickly find accommodation without stairs, so that a wheelchair can pass”, I was told. Words that do not sound very sweet to the ears of… anyone! The neurologist who was following me at the time immediately told me that she wanted me to start a very strong treatment (there is a gradation in the treatments offered for multiple sclerosis), which was then in clinical trial and used to , among others, some patients afflicted with leukemia.
Chemotherapy, in other words. A powerful immunosuppressant to be given to me every six months until… all the time. Yes, since multiple sclerosis is an incurable autoimmune disease, the treatments offered serve to weaken the immune system so that it does not trigger “flares” of symptoms, and these are treatments for life. I asked if there was anything else I could do to improve my condition, like certain exercises, for example.
The neurologist answered me simply: “No. »
I did the recommended treatment for the first time. In the room, where other people, mostly cancer patients, had come to receive their chemotherapy treatment, I waited for six hours for a pocket of fluid to empty into my system. With each drop that poured out, I felt my vitality, energy, and heart rate drop drastically. What an ordeal it must be to experience all this over and over again. I immediately decided that this was my first and last round of medication, for now.
You see, I feel privileged to be like this: never (or almost) my diagnosis has discouraged me. I had decided, as soon as the news broke, to do everything, but absolutely everything to improve my life with multiple sclerosis. Quite easily, I found many articles, podcasts and scientific (or not) books dealing with multiple sclerosis and how our lifestyle habits can be changed to potentially improve the prognosis. I immediately changed some key points of my diet, adapted exercises to keep moving my rather heavily affected body, tried to manage my stress and improve my sleep, in addition to including the recommended supplements.
In short, I continued to move forward.
I refused to believe, as my neurologist had told me, that there was nothing more I could do than adhere to immunosuppressive therapy for the rest of my life. I chose to put all the chances on my side in order to live, not only as long as possible, but, and above all, as best as possible, with as many faculties as possible.
Within a few months, all of my symptoms disappeared one by one, and as of June 2023, I have never been in better shape in my entire life.
I don’t think my recipe is the right one for everyone; there are endless recipes for each individual and their very specific condition. I believe, however, that if my neurologist or other health specialists answer “no” to the question “is there anything else I can do?” to other humans less on the lookout, less motivated or less hopeful than me, they will miss out on an immense empowerment and an incredible potential for improving their lives.
Yes, treatments, pills and the like are often absolutely necessary and must be prescribed when everyone is consenting. On the other hand, other “prescriptions” should, in my opinion, absolutely be considered if the health specialists really have people’s health at heart and the desire to unclog this health system, we will tell each other, in rather pitiful state thank you, what is ours.
Prescribe, perhaps, a little breath of fresh air every day, psychological support, a phone call to a loved one, a support group of people living with the same afflictions, a meeting with a nutritionist or a kinesiologist, relaxation or meditation sessions, etc. We should not underestimate the benefits of each action we take or would like to take on a daily basis.
Our healthcare system must stop making patients dependent on it and give them back power over their own health. Our health system must give people hope and direct them to the appropriate external tools or specialists. Our healthcare system must dare to change, review its priorities and truly nurture health, not disease.
If, as Einstein said so well, the madness is to do the same thing over and over again while expecting a different result, it is high time for our health care system to do something good, very different!