You can’t be an instant professional at living with MS
With this disease, I learned that I needed to start on my own with the basics
When I learned to cook, I didn’t attend a class or have formal lessons. I learned the basics as a child from my mother in our home kitchen. At first, everything was structured: follow the recipe to the letter, precisely measure everything, and use only the recommended tools for a specific step. Fast forward a few years and I’m freelancing recipes, “measuring” ingredients by eye, and baking things in a square pan because I didn’t have time to wash the round one.
No one had to teach me to do it this way. Repeating the basics led to what’s commonly known as muscle memory and eventually to my unique kitchen dance. Short of trying to choreograph steps that change with each recipe, I’m not even sure that you could teach it. What I am sure of is that the basics, which I fall back on comfortably whenever I run into a problem, can be taught.
For at least the first year after my diagnosis with multiple sclerosis (MS), I tried to skip the basics and go straight into freelancing my life with it. Attempting to figure out my steps based on someone else’s choreography didn’t work at all. Not learning the basics left me with nothing to catch me whenever I fell and made things even worse.
I’m not suggesting that I had nothing to learn from other people with MS, just that I couldn’t start with the tricks of someone who’d had it for 20 years. Those are some handy methods to learn and ones I’m constantly learning, but I had to start with skills appropriate to a newly diagnosed person.
First steps
What are the basics? Besides learning about the disease itself, which I highly recommend, I had quite a few first steps to take before breaking into a daily dance. The first for me was that this disease wasn’t something to be handled by my general practitioner. I had to find a neurologist, and the right neurologist. For me that meant an MS specialist. That person is the basis for all my MS care, as well as the person with the most knowledge of medications and symptoms of MS.
I’ve said it before, and this won’t be the last time I say it. Your MS is not my MS, and your symptoms are not my symptoms. If I try to live my best life based on someone else’s experience, it’s like trying to cook a gourmet meal in their kitchen. I don’t know where anything is. The sink, range, garbage can, and refrigerator are in different locations than I’m used to. The spices and utensils are probably not exactly what I’m used to working with. Even though I may be able to make something, it’s going to take at least twice as long and may not taste great.
Sometimes, trying other people’s methods of managing their MS is like trying to make a new dish for the first time. I can’t freelance cook a new dish. I need a recipe, I may or may not have the ingredients, and I’ll probably have to dust off and use proper measuring utensils instead of winging it. The person’s recipe may be great and one I’ll make for myself in the future, but I have to remember to start at the beginning.
Others might differ, but it’s impossible for me to be good at something new right away. The new exercise technique or supplement that works great for someone else may be a mess until I adjust to it. And I may never get used to it. At that point, I can safely say that it doesn’t work for me and go back to what I know does.
Sometimes, MS feels like I’m waking up to a new kitchen every day. That’s unbelievably frustrating and depressing for someone who’s been able to cook most of his life. MS has taken away my ability to cook except by proxy, so maybe this allegory wasn’t the best, but I’m still familiar with it and hope others are too. My unique, progressively worsening abilities might have me looking at your recipe with skepticism. Knowing the basics means that I’ll either thank you and look for something else to make, or that I’ll catch on quick.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Living with MS
Mental health and MS
Living with MS
Symptoms of MS vision problems
Joseph Selevan
I don't have multiple sclerosis but I am being medicated with Psychiatric medication and have a genetic disease. I like Mr Hoffmeister's analogy to cooking and I consider living with a disease like treating your body with food, liquids, dietary supplements, proper medications, and alternative therapies. It seems that Mr Hoffmeister is attentive to the sense of taste and smell and uses them to direct himself in relating to his body and illness. I like Naturopathic Doctors but can't deny the value and importance of Allopathic medicine. You have to listen to your body and be attentive to your symptoms. it is also helpful to be knowledgeable about the different organs, parts of your body and their functions. Your Body just like the rest of the world should be treated like a musical symphony of it's creator (whether that your parents and their partner God as the Jewish sages state, "There are three partners in man , his father, mother and the holy one blessed is he".
Benjamin Hofmeister
Thanks Joseph! I think at one time I would have been skeptical of anything that didn't come from a doctor's office, but with MS, I have found myself to be a lot more open-minded about diet and alternative methods to deal with my disease. I wish I hadn't waited so long.