This post is going to be about chronic illness, invisible illness, Ehlers-Danlos Syndrome, and frustration. Yeah, sorry, it's going to be a big miserable ranty rant.
So, if you don't already know, I have EDS. Probably. My doctor didn't know what it was and had to ask a specialist what the diagnostic criteria are. I meet them. So I've been referred for further investigations. It's slow, and it's tedious, and it's frustrating. It causes me chronic pain and fatigue, as well as numerous other niggles and inconveniences, follow the link if you want to know details.
It makes my joints hyper-extend, like this:
And means my legs always look like this, and I never know what caused it:
Last night I went out to celebrate the 40th birthday of a very good friend. I don't make it out to parties very often these days, but I couldn't miss this one. Certain of my joints have been particularly troublesome of late, especially my right hip, and right wrist. The hip issue means that I've been unable to do any training for either of the races I have coming up for a couple of weeks. The wrist issue means I can't knit more than a couple of rows without needing to stop. It also means that last night I was wearing a support bandage.
I swear that everybody asked me "what have you done to your wrist?" Which sounds innocuous enough, except that every time I have to explain that I haven't "done" anything, other than exist. That's enough to cause pain and damage to someone like me. And every time I have to explain that, it's another reminder that my life will never be the way it used to be ever again. Another reminder that I'm not "normal", and can't do "normal" things.
Between that question, listening to my insanely active friends discussing plans for 20 mile runs, or 70 mile bike rides, and not even being able to knit to calm myself down, I ended last night in a state of barely contained misery, and did not sleep at all.
Instead of sleeping, my brain came up with this "game", of sorts, to demonstrate what it's like to live with chronic illness. It's based on the now well known Spoon Theory, combined with a very accurate cutlery related theory once expressed to me by the lovely Lyndsey of Countess Ablaze when describing how living with chronic illness makes her feel.
So if you'd like to try living in my shoes, or the shoes of millions of other people out there with chronic illness, join me in playing the Game of Spoons!
Game of Spoons
Requirements:
1 x D6 (I'm a gamer geek, if you don't already know, D6 means 6-sided dice)
1 x D4 (4-sided dice)
20 x spoons
5 x knives
Large dollop of empathy
cupful of compassion
a sense of humour
Starting the day
Roll a D6. This is your "Physical Wellbeing" die. It determines how your body feels and behaves today.
5-6 = Good. Your pain is controlled by your regular meds, you feel alert.
3-4 = Average. You need to take a few extra pain killers, and a whole lot of caffeine, but you can just about manage.
1-2 = Bad. Even at maximum allowed dosage, your meds still aren't helping. Even though you slept until 1pm, a trip to the bathroom leaves you so exhausted you need to go back to bed for an hour before you can even consider making breakfast. If you roll 1-2 on your Physical Wellbeing die, you must use a D4 as your Mental Wellbeing die.
Roll a second die. This is your "Mental Wellbeing" die. It will be either a D6, or a D4, depending upon the results of your Physical Wellbeing roll. Your Mental Wellbeing die determines your mental state for the day.
5-6 = Good. You feel almost normal. You might even be able to handle trigger activities such as opening post, or making a phone call today.
3-4 = Average. Your world is not the happiest of places, but you have people who love you, and the motivation to attend to your duties and responsibilities.
1-2 = Bad. You feel worthless, useless, a burden to those you love. You feel the world would be better of without you. You have the motivation to achieve very little today.
Now add the results of these two dice together, and divide by two. This is your overall score for today, and determines how many spoons you have to work with.
5-6 = Good day. Receive 20 spoons.
3-4 = Average day. Receive 15 spoons.
1-2 = Bad day. Receive 10 spoons.
Roll a third die, a D6. This is your "Sleep" die. If you roll a 1, then you did not sleep last night due to pain and/or stress. You recover only half of your allotted spoons for today, and your knife count does not reset.
Additional rules:
If you roll 5-6 on your Physical Wellbeing die, combined with 3 or above on your Mental Wellbeing die, and do not roll a 1 on your sleep die, for 3 consecutive days, your Physical Wellbeing die automatically becomes a D4 for the following day.
If your combined result for any one day is 6, and you did not roll a 1 on your sleep die, you automatically feel so amazing that you attempt to achieve ALL THE THINGS!!! Your Physical Wellbeing Die becomes a D4 for the following day.
When you spend spoons on any activity, you must roll a D6. If you roll a 1, then your body betrays you during this activity (eg. you get dizzy and fall over while taking a shower, you lose grip while loading the dishwasher resulting in you dropping and breaking your favourite mug, or you suffer brain fog while travelling on public transport and garble nonsense at the bus driver instead of asking for a ticket). This causes you frustration and anger. Gain 1 knife.
If you gain 5 knives during any one day, you will lose your temper and have a fight with a loved one. Lose 5 spoons.
You may 'borrow' spoons from the next day, but you must remember that you do not have those spoons the following day.
Your knife count resets to zero after a full night of sleep, but only drops to 3 after a fight with a loved one.
Spoon Costs
Get out of bed - Spoon cost = 1
Make a cup of tea or coffee - Spoon cost = 1
Make a snack, or light meal - Spoon cost = 2
Perform a household chore (eg. 1 load of laundry, 1 dishwasher load, 1 bedding change, prepare a full meal) - Spoon cost = 3
Have a shower - Spoon cost = 3
Get dressed and leave the house - Spoon cost = 3
Grocery shopping - Spoon cost = 5
Attend an appointment (eg. medical, bank, solicitor) - Spoon cost = 3
Meet a friend for lunch - Spoon cost = 3
Perform any 'trigger' activity that causes you anxiety (making a phone call is a common trigger activity) - Spoon cost = 5
Do 30 minutes of exercise (any activity that raises your heart rate significantly) - Spoon cost = 5
Use public transport (not peak times) - Spoon cost = 2
Use public transport during rush hour - Spoon cost = 5
Drive into town (not peak times) - Spoon cost = 1
Drive in rush hour traffic - Spoon cost = 3
Attend a party/wedding/funeral - Spoon cost = 10
Spend a full hour resting, and doing something you really enjoy (eg. reading, crafting, playing a video game) - Gain 1 spoon. You can gain a maximum of 2 spoons in this manner during any one day. This activity is also subject to a knife-gain roll. If you gain a knife, you may not gain a spoon from this activity.
Further play
Continue in this fashion. Every. Single. Day. For the rest of your life.
Life goes on
I don't really expect this post to change anything for anyone. The concept of pain that never ceases, and fatigue that does not necessarily follow exertion, is impossible to understand if you have not experienced it for yourself. Most especially, it's easy to FORGET if you don't suffer from it yourself. I assure you that those of us who are in chronic pain can never forget about it!
Perhaps for a little while though this silly game might make you think again when a friend cancels an arrangement, or a seemingly normal young person takes the priority seat on the bus.
Perhaps it will help you understand why I am so determined to run my next race. 5k to raise awareness of EDS, and make you consider helping me to spread the word.
Perhaps it will also help you to understand exactly why knitting is so important to me. It offers the only means I know of gaining spoons!
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