I've been pretty sick this past week, spending every afternoon in bed, lots of migraines, lots of fatigue, and no mental energy. It reminded me that I've been meaning to post "Lyme Disease: The Game!" that a friend of mine wrote. It can easily be adapted to work for any chronic illness or disability and has the advantage of being even more nuanced than the much-loved "Spoon Theory." Welcome to living with a chronic health problem!
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Lyme Disease: The Game!
no fun at all for ages 8 to 108
You need:
a die from a board game in the closet
a fleshy, corruptible body
a spirit to be crushed
SINGLE-PLAYER RULES
You contracted Lyme disease. Roll the die to see if you notice.
>3: Congratulations, you got a classic red ring tick bite. Go to the doctor and get antibiotics, spend 2 weeks feeling awful, then get on with your life. FOR NOW.
3 or lower: You have no external marker. Disease remains unnoticed and untreated. Please progress to Chronic Lyme.
CHRONIC LYME
Spirochetes have colonized your body in ways largely impenetrable to your immune system. Now the fun begins! You begin experiencing diverse symptoms: severe muscle/joint aches, incapacitating fatigue, mental fog, digestion problems, temperature and drug sensitivity, dizziness/fainting, AND OTHER FUN THINGS. You cannot function properly; something is clearly wrong. Go to the doctor and roll the die to see what they diagnose.
1: "[Patient name] is a young girl clearly in need of reassurance." You got a sexist jerk doctor. No treatment. Continue to suffer until you can afford to see another doctor.
2. Battery of tests show nothing. Doctor shurgs. Given vitamins and/or stress management pamphlet and/or psychiatric recommendation and sent on your way. Continue to suffer until you can afford to see another doctor.
3-4. Battery of tests show nothing. Doctor diagnoses arthritis, IBS, or some other minor, unrelated condition. Receive ineffective treatment for wrong disease. Continue to suffer until you can afford to see another doctor.
5. Battery of tests show nothing. Doctor diagnoses Chronic Fatigue Syndrome. Receive largely ineffective treatment for symptoms but not cause of illness. Continue to suffer until you can afford to see another doctor.
6. Doctor actually believes in the existence of Chromic Lyme AND recognizes symptoms AND knows proper test to administer. Chronic Lyme diagnosed. Some kind of punishing antibiotic regimen plus other treatments administered, effect unclear. Proceed to "Daily Lyme Funtimes."
DAILY LYME FUNTIMES
Wake up. Roll the die, then multiply by 3 to get the number of pills you must take today. Roll the die again to see what kind of day it is.
1: Very bad. Stay in bed all day, hardly moving due to pain and fatigue.
2-3: Bad-ish. Stay in bed all day, but at least you can read or watch TV.
4: Meh. Stay in bed most of the day, but can get up to shower or fetch some minor item up a flight of stairs. Probably need a nap afterward.
5: Okay-ish. Stay in bed most of day, but can do some minor tasks such as wash dishes or play a video game as long as you take it easy and don't stand or concentrate for too long.
6. As good as it gets. Go crazy and do something wild, like walk to the mailbox up the street and get the mail, or be driven to the pharmacy to pick up drugs. If you are in advanced stages of recovery, you may even be able to eat in a restaurant or go to a movie theater PROVIDED someone can drive you and you don't have to walk too far from the parking lot. See next section for details.
ACTION POINTS!
Every day that you roll a 4, 5, or 6, you may spend Action Points! Multiply by 3 to get your number of points. The following is an incomplete list of actions you may choose to take with your points.
Shower: 6 points
Prepare a meal more complicated (but not much!) than cereal of microwave meal: 6 points
Concentrate of something (typing/writing, book more complicated than "beach read," balancing a checkbook, conversation with someone more complicated than "beach read") for 30-60 minutes: 6 points
Go up a flight of stairs: 6 points
Stand in a short line, such as at bank or pharmacy: 10 points
Drive yourself somewhere extremely close, such as bank or pharmacy, and back home: 12 points (may be impossible depending on exact symptoms and driver's license status)
Sit up for extended period, such as at dinner or movie in public: 12 points
Take public transportation (bus) somewhere extremely close and back again: 18 points (probably impossible due to large amounts of standing and walking required)
Actions involving more than one set of points will cost you both! For example, going up a flight of stairs to shower costs 12 points. Having to take the bus to the bank and then stand in line there costs 28 points.
"
But I don't have enough points to do everything I need to do today!"
Tough. Your choice is as follows: either do without whatever it was or "borrow" points from tomorrow. If you have the good fortune to roll a high number tomorrow, your "borrowed" action points are deducted from your point total. If you don't have enough action points to borrow, you go instantly to Very Bad and must spend all day in bed suffering. This continues every day until you can "make up" the points you borrowed, for up to one week.
Example 1: You roll a 4 and have 12 action points on Monday. You spend 12 points going up a flight of stairs to shower because you really stink. What a relief! But then your friend who lives cross-country calls and you really want to talk to her. You spend another 6 points talking on the phone for an hour. Tomorrow, you roll a 4 for 12 more action points. Due to your good luck, you simply deduct the 6 points for the phone call. You now have only 6 points to spend for Tuesday. Going up the stairs is possible, but another shower would be a bad idea.
Example 2: You have some business to conduct in person at the bank. You wait until you finally roll a 6 for 18 action points on Friday. Fortunately, the bank is very close and you have a car and a driver's license and a handicapped parking permit AND you feel as though you would not endanger yourself or others by driving today. You spend 12 points driving to the bank. But unfortunately, the bank is busy on Fridays and you have to stand in line for another 10 points. You overspent by 4 today. On Saturday, you roll a 3 when you wake up for no points. You are screwed. You spend all day in bed in extreme discomfort. You cannot shower or do anything else requiring action points. On Sunday, you again roll a 3. You still cannot make up your action points. You spend all day in bed suffering again. Finally on Monday you roll a 4 for 12 points and can make up the points you overspent. You can finally shower, but if the shower is up a flight of stairs, be prepared for more Very Bad days.
WINNING THE GAME
You don't. The game continues indefinitely. You may progress to the point where you are essentially rolling a 6 every day. You may even progress further than that. But there is no guarantee. No matter how good you feel, you will always know it is possible to do too much and collapse. You will always remember the Very Bad days. You will never know spontaneity again. You will never truly feel confident that you will be able to support yourself or do basic life tasks for the rest of your life.
Game is over when you die.
MULTIPLAYER
Everyone plays alone. However, you will undoubtably be forced in the course of playing to affect the lives of those around you, particularly your spouse or family members who will be forced to care for you when you cannot care for yourself, which is almost always.
Subtract 2-10 action points every day for every caretaker you are forced to rely on who is abusive in some way.
If you have no access to caretakers of any kind, I don't even know what to tell you. You are already playing a very different game.
EXTRA HANDICAPS
For added challenge and absolutely no added benefit, choose one or many of the following handicaps while playing:
- other pre-existing serious health problems (subtract 2-10 action points every day!)
- very young (15 or younger) so no one takes you seriously
- old age (65+) so no one takes you seriously (and subtract 2-10 action points every day!)
- poverty
- live in isolated rural area with few doctors and far distances to do life tasks
- live in large city with lots of health-destroying pollution and inability to own a car
- live in backwards country without guaranteed health care for all humans
HAVE FUN, KIDS!!!
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Thanks to CM for allowing me to share this. I hope the day comes when you roll nothing by sixes day after day after day!