Background Noise: Living a Life with Chronic Pain
Since 2009, I have been experiencing chronic pain, and my chronic pain conditions have fluctuated dramatically over those years. The varying pain from hip and shoulder dislocations to the severe pain of my cerebral spinal fluid leak, I have learned and grown from the experience.
During this time, one of the questions that I have become most familiar with is "What is your pain level?"
However, when considering the pain scale, it is important to understand that the pain scale was not designed to monitor or make sense of chronic pain. It was designed to assess acute pain. That is a critical role in emergency situations to get appropriate care. That purpose does not necessarily allow it to serve patients in chronic pain.
So, how do you describe being in constant pain to a person who does not experience it?
Many people utilize a commonly know concept in the chronic illness community called the "spoons theory". The spoon theory's roots can be found in exchange theory. In the same way that you spend money to get your weekly groceries, chronic pain patients or "spoonies" exchange spoons, or energy, for every daily task. A healthy person has a jar full of spoons that is completely replenished each day. Their system allows them to be empowered to plan out each days activities and achieve goals on a regular basis. For those of us struggling with chronic pain, we wake each day with fewer spoons to spend, but our tasks still demand the same number of spoons as a healthy person's do. Therefore, if it takes 2 spoons to showers, and a healthy person has 40 spoons, that is only 5% of their daily energy. If it takes 2 spoons to shower, but a chronic pain patient only has 20 spoons, then that means that same shower takes 10% of the pain patients daily allotment of spoons.
When I shared this concept with my loved ones, it felt hard for them to understand. They could not imagine a shower requiring 10% or more of their overall daily energy, and why I couldn't just "get some extra rest" to "keep going" later in the day.
I realized that unlike exchange theory, the spoons aren't "earned" and that made the exchange of them for participation in day-to-day life confusing for my healthy friends and family members.
This difficulty in finding understanding lead me to developing my own explanation for my chronic pain.
So, after years of pain,
I realized that for me,
pain was more like constant background noise
that runs a spectrum from
mildly distracting
to
overwhelming, sanity-stealing noise
that is constantly in my ears.
Imagine with me:
You are having a coffee with your friend. The two of you are in a nice quiet room at a standard table. Behind you, there is a television. However, this TV is not working right. The only sound coming from the TV is static(Static not annoying enough? Imagine it is playing the WORST, MOST ANNOYING song you can think of. i.e. "Its A Small World" or "Baby Shark").
On a low pain day, the TV is somewhere behind you. You hear the static constantly. It is annoying, but not quite distracting enough to reduce your ability to work or converse. You can still enjoy a relatively normal coffee date with your friend or a normal afternoon at your desk in the office. This is the 1-3 range on the pain scale.
Now, imagine the volume is a bit higher. It is distracting, even getting into a range at which it is annoying. Your conversation is going, but you're having to ask your friend to repeat things or you are unable to stay focused on your work while you're at your desk. This is no longer just annoying. Now you're frustrated. Now, the normal you is not there anymore. You can put up with it for a while. Maybe you find the remote(your medication), so you can turn down the pain for a while. However, you know that this is only temporary. Every day, the annoyance builds. It gets harder to turn your brain off at night and sleep. The less sleep you get, the louder the TV is the next day. It is an exhausting cycle that slowly steals your sanity. This is the experience of functioning day to day at a 4-6 pain level on the pain scale.
Today is a high pain day. You're now tied to the chair, and some jerk put the TV RIGHT behind you. To make things worse, the batteries in the remote are dead(ineffective medication), so you cannot adjust the volume. It is impossible to concentrate. It is impossible to get work done, because you can't think of anything beyond the noise. The bass is under your chair making the darn thing vibrate. When you've reach a 7-8 on the pain scale, you're typically in bed. Each day tests your sanity. At each doctor's appointment, you beg for help. If your pain is chronic, then your medication not be able to help at this point ... or worse, no medications are helping at this point.
Finally, there is a day or many days, where the bass under your seat is vibrating so hard that your vision is blurry, you think your ears might explode, and maybe you can even feel it in your joints. At this point, you're basically being tortured. The concept of losing consciousness seems like a promising solution. This is the 9-10 range on the pain scale.
Now, imagine that any of this is your permanent reality.
For me, that television is always just over my shoulder. The static is always obnoxious. For years, I push through. For years, I functioned as well as anyone could. However, it was a struggle to: maintain focus, work at the capacity of a healthy person, or to enjoy social events.
I hope that this illustration of chronic pain helps fellow warriors share with their friends, family or colleagues. I also hope that maybe it helps at least one other person who is struggling with chronic pain feel understood.
Wishing you strength, love, and low pain days~
Katelyn Pearson
Disability Accommodations Advocate
the.technicolor.zebra@gmail.com