Extra(ordinary): ASers Can Do It All
Let my words go forth from this day and place. We, the people living with ankylosing spondylitis, are extra(ordinary)!
(Meaning, our “ordinary” is way more than a little “extra.")
We do more, put up with more, become used to more, and just have way more complicated lives. Not necessarily in a bad way, we just gotta do...well...more to live the lives others take for granted. Take, for example, our treatment regimens, or the things we have to become experts in. I don’t have much experience in “non-chronically ill living,” but I gotta think our daily schedules and skills go well above and beyond.
Here’s what I'm talking about.
A doctor without a degree
Picture a world where people go to the doctor only when they feel sick, and a few doses of Tylenol Cold and Sinus just won’t cut it. On an especially bad year, they might go twice (if even that many times). They might know a little about this illness or that syndrome, but for the most part, they are too busy living their lives to worry about the deeper side of WebMD.
On the other side, there are the chronically ill, who just out of survival, know more about the human body, how things work, and what could go wrong. Trying to explain ankylosing spondylitis to a layperson, and then treating it, is a three-ring circus act of feats of strength. But, we gotta! So, we do our research, we talk to our “siblings,” we check out drug trial results, and we do our own testing. And, this is what we do in our free time!
We probably didn’t go to med school, but we are de facto doctors!
We don't need no nurses!
(Ok, we need nurses, they are great! But, come with me for a bit on this topic.)
Getting medical treatment from a medical professional can be a beautiful thing. Their hands have been trained to be as gentle and accurate as a master sculptor who makes miniatures. However, when you need to do things like giving yourself weekly or even daily injections, going to the doctor's office just doesn't make any sense.
So, now we are de facto nurses as well!
Here I am in my bathroom with the three injectable medications I'm currently on, with half-inch to 1.25-inch needles, loaded with liquid medical goodness, doing my best. I’ve been shown how to give myself both subcutaneous and intramuscular injections, and I have gotten pretty good at it, but seriously...This isn’t “ordinary”! We should wear t-shirts that say “I do for myself what nurses have to do for you” with buttons that say “Seriously!” Because I find this little superpower to be quite legendary.
My 4/10 is your 12/10
The problem with the Numeric Rating Scale (NRS) is that everyone’s 1 through 10 is subjective. When a doctor asks you where your pain is on the scale, it doesn't take into account how much pain you can tolerate. Personally, I can tolerate a lot! I'm in pain every day. And because of that my “ordinary” is probably someone else’s “extra.”
I say “probably” because, as I wrote in “You Don't Know What It’s Like,” nobody actually knows what someone else feels like. I just have to imagine what would happen if I threw my daily 6/10 pain onto someone who has never experienced chronic spondylitis pain. It would be shocking at least.
That said, if an ordinary person experienced our pain, they would call in sick and check themselves into the hospital. Whereas, we still show up to work with pain twice as bad, because if we took every day off, we would never do anything! We keep on chugging like the Energizer Bunny.
We do more in our daily lives than most people do in their entire life. We are in pain, our energy is drained, and we probably didn’t go to med school. (Although if you did...respect!) But, we play doctor and push on through some of the worst days imaginable.
We are Extra(ordinary)!
What’s your superpower?
How often do you experience flare ups?