Living with Psoriatic Arthritis: Imagine If
Last updated: May 2020
As a psoriatic arthritis patient, one of the things I struggle with is feeling like my family and friends really “understand” what my life is like with chronic diseases.
Psychologically speaking, I’m not really sure why this is, outside of the fact that everyone sort of wants to feel like they aren’t alone. Or perhaps that someone actually understands what it is like to walk a mile in my shoes.
With this in mind, I’d like to introduce you to a little game called, “Imagine If.”
Playing 'Imagine If'
I first started playing "Imagine If" with my kids. The premise is simple. One person starts the phrase, imagine if, then the other players close their eyes and imagine the scenario in their minds. What would it look like, and more importantly, what would it feel like, and then what would you do?
Today, I invite you to play along. Here, I’ll start using the imagine if game to explain some parts of my psoriatic arthritis battle.
Imagine If: Round 1
Imagine if you woke up one morning and broken glass littered the path from your bed to the bathroom. What would it feel like to take your normally unremarkable morning walk to the bathroom?
Step cautiously. One wrong move and searing pain will shoot up your legs. Keep your eye on the prize, keep moving, and you might make it to the bathroom before you pee yourself.
Imagine If: Round 2
Imagine if you went out on an all-night bender and drank more than your weight in tequila then woke up the next morning and had to go to work. You had to plow through the throbbing pain in your head.
Make your body put one foot in front of the other praying that each step gets you closer to your bed. But knowing full well that the moment of reunion with your bed is still many hours away. The only difference here being you had no choice about drinking the tequila and certainly had none of the fun that usually comes with a night out on the town. This is what we mean when we say that we are struggling with a flare.
Imagine If: Round 3
Imagine if you got an invitation to be part of a sleep study. In the study, they wanted to look at what happens to the brain when it goes without sleep. At the twelve and 24 hour mark, you were asked to carry on meaningful conversations, complete concentration puzzles, and even remember where you left your keys.
Not to mention simply hold your eyes open and speak in complete sentences. This is what we mean when we say we are struggling with brain fog.
Imagine If: Round 4
Imagine if you went to work and today your boss had a new uniform for you to wear and a new job for you to do. Today, you have to wear a long-sleeved shirt that weighs 20 pounds and pants that weigh 30.
By three o’clock in the afternoon, the second part of your job was to carry important documents upstream in water and mud up to your waist while wearing your new uniform. How would you do it? How would you feel at the end of your day? When we say we are battling fatigue, this is what we mean.
We don't have a choice with psoriatic arthritis
Sure, you can say that these scenarios aren’t real life. You might say that in real life, you wouldn’t choose to go out all night drinking your weight in tequila.
Perhaps you’d say no to the invitation to be in the sleep study. And if your boss asked you to wear a 50-pound suit while carrying documents upstream in a mud bath, you’d probably choose to tell your boss where he could shove it.
That’s just the thing though. Those of us with psoriatic arthritis aren’t given a choice. All of the pain, fatigue, and brain fog doesn’t come with a choice. So then, what do we do? It is only in the “then” of our own Imagine If game that we are given a choice.
Time to get creative
So now I’m wondering if you’d like to play a few rounds of 'Imagine If' with me? How creative can you get to describe your daily life to others?
What kinds of scenarios can your imagination dream up to help everyone else understand and therefore feel a little less alone yourself? Comment below and let me know.
Do you usually need to recover from a vacation?