Illustration courtesy of Pixabay / Romeo Scheidegger.
Explaining what it is like to live with a chronic illness can be difficult. Christine Miserandino explains it with spoons (The Spoon Theory), and this idea works well for many patients. So well, in fact, that #spoonies is a way to connect and sympathize with others on social media who have chronic diseases.
For me, as a product of the ‘80s, I like to explain it another way: Living with psoriatic arthritis is like playing Pac-Man.
Imagine yourself as Pac-Man, each level is a day, and each dot on the screen represents a daily activity – waking up, taking a shower, getting dressed, making breakfast, driving to work… You get the idea.
Now, your job as Pac-Man is to gobble up all of those dots before the ghosts get you. You can think of the ghosts as the symptoms of psoriatic arthritis – pain, swelling, stiffness and fatigue. If any of these ghosts get you, you can say bye-bye to one of your lives.
Ah, but there is help – cherries! Cherries are like your medicine. When you get them, you turn the ghosts invisible and you can gobble them up, getting rid of your pain, swelling, stiffness and fatigue. Of course, your meds only work for so long, so you have to make the most of your decisions and figure out the best way to get the dots and ghosts.
If you’re lucky enough to clear the level, then congratulations! You get to move on and start a new level on a new day. And, just like playing video games, navigating psoriatic arthritis takes practice. The more you learn your limitations and disease triggers, the more you can avoid the ghosts and do a better job at getting through your daily activities.
But here’s the part that really stinks. At any time, you can run out of cherries – your medicine no longer is effective. Clearing levels gets harder and harder without help. You need new meds, but it will take some time to get them, so you’re on your own for a while. And nothing says that they new meds will even work when you do finally get them.
Let's say you are lucky enough to make it to the last level - good for you. That probably means your psoriatic arthritis is in remission, and that should definitely be celebrated. Having no active arthritis is truly amazing and something wonderful. But here’s the bad news: No matter how good you are on the last level, you’ll never win the game because there is no cure for autoimmune arthritis.
This is why it is so important for me to make the most of every good day I have. You never know when you will be sent back to level one to start the game all over.
Wishing all #spoonies lots and lots of cherries.
