“I realize I have a choice. I can let this life crush me. Bearing down on me until I am dead. Or I can bear the weight. And live.” The inspiring, Simon Fitzmaurice, from It’s Not Yet Dark
It was three years ago in June, I was given a diagnosis of multiple sclerosis. And in these last three years I have done an incredible amount of writing, reading, thinking, and wondering to try and figure out how I was going to live fully with this diagnosis.
One of the most interesting things I have recently come across is the amazing Dr. Wendy Suzuki’s “Four Causing Factors of Psychological Stress (from her book Healthy Brain, Happy Life):
- No control over the situation
- No predictive info about what might happen
- No social, leisure or fun outlets
- The feeling that your situation will only get worse”
Um…hello? This is MS, 100%. The National Multiple Sclerosis Society even defines MS like this – “Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.”
unpredictable, often disabling = no control over the situation
unpredictable, often disabling = no predictive info about what might happen
unpredictable, often disabling = no social, leisure or fun outlets (Increased difficulty emotionally and/or physical with attending/participating in social, leisure and fun outlets.)
unpredictable, often disabling = the feeling that your situation will only get worse
So, yeah, it’s no wonder that many patients feel extreme fatigue, depression, lethargy, or defeat. Being completely psychologically stressed can only add to the effects of the disease itself. It makes me wonder if the variety of disease progression rates has anything to do with the perceived psychological stress for each person? (I bet you can guess what I’m going to be reading about next!)
So, I figure, one of my main goals should be to work toward eliminating the potential power an MS diagnosis can have over my prognosis and life. Here’s a few things I’ve tried, noticed, and/or implemented to see if I can conquer the stress of the diagnosis.
- No control over the situation = Find control, even in small things. I left the doctor feeling like there was nothing I could do besides take my meds and go in for scans. I now believe that there is an incredible amount I can do. There are so many ways to improve quality of life in general for people. Those quality of life circumstances like better sleep, quality food, meditation, exercise, etc. can significantly improve your overall life and will therefore effect someone with MS as well. There is a plethora of research, studies, and doctors out there who have spent years researching lifestyle approaches and MS. I study, read, learn, attend lectures, listen to others and figure out the take-aways that will make my own situation that much better.
- No predictive info about what might happen = You will never know what will happen with MS disease course and that is terrifying. But we also never know what will happen in our lives. So I meditate, exercise, write and try to reassure and remind myself that the unpredictability of the disease goes along with the unpredictability of life. I maintain the most healthy lifestyle (exercise, sleep, nourishing food, stress reduction) that I am able in order to set myself up for the best possible path that I can. I choose to practice living simply (from the décor in my house to playing with my kids in the dirt) so I can feel the joy of life that comes from meaningful moments and loving relationships, rather than things. I do stuff with people I love because I want to be around them. I do stuff with people who make me laugh because it makes me enjoy life so very much. And I do stuff with people who I feel loved by because then I know I can be my true self with no fear, living an authentic life.
- No social, leisure or fun outlets = Making an extra effort to not let this happen. There’s so much potential for the diagnosis to stop you from getting out and having fun whether it’s emotionally not feeling like others will understand or physically one of your symptoms will arise and you’ll have some explaining to do. The key for me is to remember the feeling I have when I do something I love (go hiking, for example). If I’m having an off day and feel anxious to go, I try to remind myself that even going for a little while will give me that feeling that I love. And more than likely the minute I start doing it I will be energized and actually do it longer. Another key for me is to find people I feel comfortable around. People who acknowledge, ask, listen, and laugh because mostly it’s about finding people who let you be this new normal that you are.
- The feeling that your situation will only get worse = Fill your life with rich experiences and love no matter what the MS situation. This last one takes a lot of effort. The situation for many MSers does get worse. My two fingers might constantly feel like they are asleep, but my mind can still read from great philosophers. I might need to take a rest day if I’ve been doing a lot to make sure I don’t go over the edge to relapse, but doesn’t everyone need to take a rest day? I try to make it enjoyable – books, warm tea, head to the gym for some sauna time, whatever. My body might be changing, and my situation might be getting different, but it doesn’t have to negatively change my life. I can adjust. I still have purpose. I can still affect others with my love, my passion, and my sharing. Purpose is life. Making sure I always have one no matter where MS has taken me keeps me feeling alive.
So, I wrote it down in these 4 little easy steps, pretty simple, huh? NOT. AT. ALL. These changes and implementations are difficult and need attention daily. But I do them because I know that I still have so much control in my life, and the more I remain in control and don’t let MS take over the better off I will be. I remind myself constantly that no matter what has been placed in my path, no matter what, I always, always, always have a choice of how I face it.
Upon diagnosis my sweet aunt gave me a journal with the inscription from Charles Darwin, “It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is most adaptable to change.” Couldn’t say it better myself.
Whatever your journey, I hope your struggles can’t be matched by your persistence.