The term chronic pain captures nothing of the grinding, constant, ceaseless, inescapable hurt. And the term crazy arrives at us with none of the terror and worry you live with. Nor do either of those terms connote the courage people in such pains exemplify…

Green, J. (2017). Turtles All the Way Down. Penguin Books.

At a certain point, doctor hopping should be considered an Olympic Sport. You go from appointment to appointment, specialist to specialist, test to test. It’s gruelling. I can’t imagine the pressure of an Olympic athlete; however, I can personally attest to the toll of practising every technique until you find the right one as its similar to that of trying every technique to get answers or every treatment to get results. For athletes however they can land on the final result much faster, for us it takes a while. Diagnosing is a waiting game that seems to never end. And my God it’s exhausting. As is just about everything to do with chronic illness. Already having impaired physical capabilities, we have to meet new doctors every other day and while they poke and prod you, they provide even more referrals so another person can do it. When you’re struggling to walk to the mailbox daily, making it through days, weeks, months and years of examinations and treatments and tests and every other word to do with hospitals I can think of, for the chronically ill, is the equivalent to that of Cory and Topanga not living happily ever after. It’s impossible.

After that first severe hospitalisation, it seemed my body never recovered. The first kidney infection was around the conclusion of 2015. The infections that followed decided to frequent every two to three weeks. It’s not a good thing when you socialise more with your nurse than you do with friends. It’s not a good thing when you memorise the opening hours of the Starlight Room but can’t recite your times tables. It’s not a good thing when you have access to Radio Lollipop but don’t have enough reception for a Poké-stop. Nothing about that time was good. At least not my previous level of good. Like Passenger always says, “you only know you love her when you let her go,” ‘her’ being Pokémon Go obviously.

As you can imagine, this was a very difficult time. Princess Margaret Hospital became more of a home than well, home. There’s this period any sick person goes through where they are constantly ill, but don’t know why. Don’t know what. For me, this lasted about six months where I was in constant pain. In hospital you are asked to rate your pain on scale of 1-10. I would sit there for hours, curled up in a ball, with my eyes squinting so hard they might fall off or my screams so loud they may pierce someone’s ears, and I would say my pain was at an 8. When I could make out those words between screams, the nurse would write down 9. Because it wasn’t an 8. It was a 9. The second highest pain threshold according to that scale. The point is, it hurt. Hurts. I described it as “a rusty dagger being repeatedly dragged down my spine,” by that, one would expect a lot of trips to the hospital and a very large amount of pain. Well, I can deliver. From that rusty dagger I got enough trips to hospital for a lifetime, and more pain than I would wish on anyone.

After repeated hospitalisations, the symptoms persisted, the causes desisted. In other words, my body appeared to be sick for no reason. So, after this period I was hospitalised yet again, and unfortunately, that seemed a good thing. I liked it there. Gasp! The horror! Someone not despising a hospital… delusional right? Too much cranberry juice and kimchi… not enough Tofurkey. When you get admitted to hospital you shouldn’t enjoy it, you’re there because you’re incapable of enjoyment. But after a while, humans adapt to their circumstances. A sick little girl becomes Aria Stark braving Westeros with only a “needle.” A sick little boy becomes Iron Man during his time abducted by the Ten Rings. A sick little kid becomes their own hero. Because they have to. Because no one else can fight this battle.

It was at this stage the doctors told me I had kidney reflux, nothing too major, just the excruciating process of urine retracting from my bladder, back up to my kidney. Neither of which exactly functions properly. Joy! Oh, don’t tune out just yet, it’s time for more diagnosing… maybe after some things. Because around now I had this big surgery; what began as a simple stent insertion into my ureter escalated into a bladder reconstruction and a few other snips and snaps. Long story short they didn’t know how much was wrong with me until they cut me open. Medical imaging can’t show you everything. This surgery was extended by hours, while that doesn’t seem like much, it is. It is a lot. But not even I can understand that. I’m not a doctor or a guardian. They understand that. All I know is my body was far worse than even I knew. During that surgery my body was the equivalent to expecting a Mogwai and being greeted with a Gremlin.

After this surgery, there were even more complications. Just to make sure I don’t lose you, let’s get straight to the important part. I was diagnosed with chronic pain disorder, a painful condition where your pain receptors change, causing them to miscommunicate pain through the nervous system. While this may seem as if though it means the pain isn’t real, let me make this clear, that pain was the most real thing I – and I’m sure anyone else with the condition – have ever experienced. More real than Christ Almighty to Ned Flanders. Chronic pain is pain that exceeds the injuries or illnesses healing time, which means while you’re getting better, the pain isn’t. It seems months of my body in a constant state of infection damaged my pain receptors. And maybe some reconstructive surgery had an impact. Shocking… right? Can you hear the sarcasm? Chronic pain combined with certain factors or even alone can lead to various degrees of disability. This is why I currently have a walker stuffed in the garage at this very second. Like I said earlier, I couldn’t walk to the mailbox anymore. But hey this was getting me closer and closer to reaching Professor Xavier’s level of “gifted youngster”.

You see, this walker has remained in the garage for about two years. There was a time when it went everywhere but there. We named it Vera, after the previous owner. An elderly lady in her eighties or nineties who had some mobility issues, and a few things worse, like me in that way. When I got sick, I became more like an elderly woman than I did my own friends. Slumber parties replaced with hospital stays, skinny jeans with hospital gowns, and running shoes with walking aids. When I got sick, I had to adapt. When you get sick, everything changes, your reality is turned upside down. When you get sick is such a broad term and often can hardly get nailed down to an exact date. Because it’s essentially a never-ending story (cue Dustin and Suzie). A constant fight. A marathon. An Olympic sport. A waiting game. And it’s not over. After all, Vera is still in the garage. Just in case.

Always there in my back pocket.

The Full Dustin and Suzie NeverEnding Story Scene | Stranger Things S3. (2019, July 9). Retrieved February 7, 2020, from https://www.youtube.com/watch?v=O5HQ1sZseKg

Boy Meets World. (1993, September 24). Retrieved from https://www.imdb.com/title/tt0105958/

Cms. (n.d.). Retrieved from https://www.painmanagement.org.au/resources/about-pain/what-is-chronic-pain.html

for Children in Hospital. (n.d.). Retrieved from https://www.radiolollipop.org/

Game of Thrones. (2011, April 17). Retrieved from https://www.imdb.com/title/tt0944947/

Gremlins. (1984, June 8). Retrieved from https://www.imdb.com/title/tt0087363/?ref_=fn_al_tt_1

Iron Man. (2008, April 30). Retrieved from https://www.imdb.com/title/tt0371746/

Passenger | Let Her Go (Official Video). (2012, July 25). Retrieved February 7, 2020, from https://www.youtube.com/watch?v=RBumgq5yVrA

Starlight Express Rooms. (2017, February 3). Retrieved from https://starlight.org.au/how-we-help/starlight-express-room