Before I was diagnosed in the spring of 2013 with Multiple Sclerosis, I was just beginning to enjoy an active lifestyle. I hiked every other weekend during the summers in Colorado, enjoying the breathtaking views of the Colorado foothills and mountains. I jogged one to two 5k races a month with family and friends. I took drives into the majestic Colorado mountains, took long walks in the early mornings along the many trails and parks around the neighborhoods and kayaked Dillon lake in the mountains. I also loved traveling and going out with friends to happy hours and to dinners that burnt a hole in my pocket. All of that changed after I was diagnosed.
Two weeks before I ended up in the ER (where I was diagnosed with MS), I had just finished running a St. Patrick's Day 5k race with a friend. After the MS flare-up and diagnosis, I could barely walk outside for ten minutes without collapsing to the ground. I had a hard time standing in the shower for more than a few minutes and after ten seconds of washing my hair, my arms were exhausted. I tried kayaking a couple of months after I was diagnosed and that night my arms, shoulders and neck screamed out in nerve pains. It felt like a thousand needles stabbing me rapidly from the inside of my body. No more hiking. No more 5k races. No more kayaking. No more traveling (I had difficulty driving), and no more long walks surrounded by nature. But it wasn't just the outdoor activities and fitness I missed.
I had difficulty concentrating and staying focused. Not only did my body feel like it was filled with cement, so did my mind. I wanted to get my PhD in Clinical Psychology someday and I wondered if I would ever be able to achieve that dream. I also dreamt of being a writer. I loved writing fiction, poetry, plays and screenplays. It was difficult to type and to stay awake.
Medicine Only Focuses on the Symptoms
Diseases such as multiple sclerosis, rheumatoid arthritis, chronic pain, diabetes, cancer and many others, steal not only our health, but more importantly our quality of life. Quality of life isn't something doctors and medical professionals focus on. They focus on physical health with regards to symptoms. They rarely discuss or address how those symptoms steal our quality of life.
Is it better to die or is it better to live permanently strapped to a bed, barely conscious and on oxygen? Is the latter really living? As dramatic as this comparison may seem, living with an autoimmune and chronic disease feels very much like the latter in its worst state. By the way, I'm not saying death is better if this is your current situation. The best option is to heal the body and regain quality of life. But because modern western medicine focuses solely on the symptoms of a disease and how to reduce or alleviate those symptoms (even if it's only slightly), the importance of quality of life becomes lost.
Many medical professionals try to alleviate symptoms (even if it's only by 5-10%) and prescribe additional medications for the effects caused by the base medications (the ones that were prescribed for the disease). As a Clinical Yoga Therapist working in a medical clinic alongside physicians and as a private health coach, I've seen many patients on 5-10 medications that have very low quality of life. I've always asked patients, why? Why do you continue to take all of these medications when the negative effects of taking them are higher than any positive results? Why continue on this path when it's still not giving you a quality of life?
Settling for Good Enough
Many years later while living with MS, I got a glimpse of the answer to this question. Medical professionals only cared to delay the progression of my MS and alleviate my symptoms using multiple medications (that actually gave me more problems in the form of negative side effects). And because I had lost my quality of life and ultimately any hope for the future, I became depressed. Hiking, jogging, walking in nature, writing, cooking, and traveling were all ways I de-stressed and found joy in my life. But MS took that away from me which drowned me in depression further. Also, MS (as well as RA, cancer, diabetes and other diseases) caused an overwhelming increase in mental, physical and emotional fatigue. This fatigue combined with the stress of the disease, fears and worries lead to lethargy. Lethargy, fatigue, fear and hopelessness lead to depression. After being drenched in these negative emotions for long periods of time, I begin to settle for just good enough. I realized this was the case with everyone else living with a disease. We settle for good enough.
For me just good enough meant living with pain and the multiple symptoms of MS every day while not being able to live my life even partially and giving up on my future dreams. I was scared my condition would get worse, so I blindly accepted what my doctors told me; the most important thing to do was to delay the progression of MS. And at that moment I gave up on my quality of life. Looking back, I realize now fear had won. I allowed fear to win. And I gave up my power and surrendered it to my MS. I did that. I chose to settle instead of fighting for my right to live fully.
Rediscovering Quality of Life
I will always be thankful for the stubborn qualities from my mom’s side of the family. And for rage. Yes, rage. In January of 2014, I went online shopping for walking canes. I had difficulty walking and standing balanced. I was pissed!!!! I was only 34 years old and I was shopping for walking canes online. Oh hell no!!! I was so pissed and enraged I decided to fight back. And in September of 2014, I ran my first 5k race since being diagnosed with MS. I used what I knew of nutritional medicine, proper supplementation, yoga therapy and fitness to heal my body. Now in 2018, not only have I reduced my MS symptoms but I’ve rediscovered my quality of life. My MS symptoms have been reduced by 95% and the frequency of those symptoms have also been reduced by 95%. I am hiking again (hiked 7 miles in April), jogging 2-3 miles twice a week, working out at the gym for two hours each week, and taking long walks amongst the beautiful landscapes of Colorado. I’m also writing again. Writing a self-improvement health book and a psychological crime thriller. And the best part is that I’m no longer on any medications for MS.
What’s better? Reducing symptoms by 10-20% and having a low quality of life? Or reducing symptoms by 75-95% and having a very high quality of life? Of course the latter is better? So then why do so many individuals still settle for the former?
As I’ve mentioned above the culprits to overcoming disease and fighting for one’s quality of life is fear and fatigue. A third element I did not mention is cost. When we’ve spent so much money on medical bills, exams, scans, medications, ER visits, office visits and follow-up visits, we do not want to “invest” more money on health and wellness tools. This is unfortunate because the fact is everything takes money. We live in a capitalist society where everyone needs to pay their bills, pay back their student loans, pay off debts, save to buy a house or to send kids to college, and further save for future investments. We all have a right to earn money and to get paid for our services. There is no such thing as free. Not really. The accounting system of the universe always finds a way for you to pay back any invisible debts.
I used to tell my patients, you’re going to pay either way. Either “invest” in the front end and live a healthy life or pay on the back end and live with disease. I used to spend a chunk of money on just managing my MS. Now I “invest” a significant amount of money on maintaining health and having a high quality of life. With investing, I get my life back in return which is everything. With paying for disease, not only do I pay for medical costs, but I pay in living with pain and losing my quality of life.
That’s the thing about the significance in the concept of quality of life. Many individuals (including the me of the past), focus on monetary costs and rewards with regards to disease. We don’t necessarily focus on the costs to our quality of life and the rewards to our quality of life.
When I spoke with a mom with MS years ago and asked her what was her greatest wish. It wasn’t to reduce her symptoms. It wasn’t to delay her MS. Her wish was to be able to go bike riding with her kids before they grew up and she missed out on their childhood. That’s QUALITY OF LIFE! I hope you find the rage, courage and blinding faith to “invest” in improving your health and rediscovering quality of life. Because in the end that’s what life is about. It’s not about managing symptoms. It’s about living life fully.