Life is a balance between eating, resting, and activity. When you have MS, the balance adds on levels of complexity. Professionals will give contradictory advice “use it or lose it” and “conserve energy”. Ok. How?? You will also hear encouraging mantras. “Manage your symptoms.” “Manage your MS.” “Don’t let them manage you.” More great advice where actions frequently have road blocks. There is no one clear set of instructions for dealing with MS. There is a good reason why MS patients are called snowflakes. We all have our own set and severity of symptoms. This is why we call ourselves Warriors as we find the unique set of instructions for ourselves. By sharing my battle with other Warriors I call myself a MS Gladiator.
Discovering our unique instructions is an uphill battle and most closely resembles that board game where you collect $200 whenever you pass go. You fight for individuality, but you are all treated as the old shoe that depends on a dice roll to circle the board. Landing on and purchasing a property is like accumulating a symptom. The more properties in a group you own, the greater the symptom’s severity.
How should you treat the symptom? Medicine? Device? Exercise? A combination? Which is best for you? You would think that would be a decision made by your health provider with your input. Well no. Your Medical insurance has decided all patients with that symptom should be treated a certain way. Think of it as you must own x houses on each of the properties before you can add a hotel. Insurance may even say that a hotel has not been proven to fit that property or a shoe. Depending on the symptom, this can also be isolating waiting on insurance or slowly working your way through houses to reach a hotel. The shoe has gone to the jail square without collecting $200, and without a “get out of jail free” card. The shoe is now stuck waiting for a double dice roll. Buying your way out is not always an option.
Should you take a MS DMT, disease modifying therapy, that may reduce relapses? Remember, there is no cure, yet. Also, there is no one best medicine for everyone. Selecting a medicine can be like trying to buy one of the game’s railroads from another player. The other player clearly needs money. You are the only player that can buy. But the owner has decided not to sell to you.
Working your way through diet changes and exercises to help symptoms and overall MS is like collecting “Chance” cards. Sometimes the new change will be good like getting a card where all other players give you money. Other times the change will be more like a card where you travel to a specific square and pay the owner triple rent.
It sounds like the game is rigged against you. But you need to play. Yes, you will have times where you feel close to game bankruptcy. There will also be hard earned wins. With enough wins you will have your own unique set of directions. Not playing may result in conserving your energy so much that you will have an uphill battle just to reach the game.
Then, just to keep you guessing, any change in symptoms or method of controlling MS or a symptom requires playing a new round of the game.
Good Luck with your dice rolls and ‘Chance’ cards!
Life, Humor, and MS 