Are You Living With Chronic Pain/Illness Or Letting Life Pass You By?

SnowI was never allowed to slide on chores when I was living with my parents. It didn’t matter if I had a migraine, my elbow was fractured and my arm and hand was in a cast, sprained my ankle and kept re-spraining it, or my torqued pelvis was causing excruciating back pain. One year I was sick the last week of school before Christmas break. Instead of being in bed resting like I should’ve been, I was wrapping my siblings’ Christmas presents. Chores still had to get done or there were consequences. Laying around being sick whether short-term or long-term or being in chronic pain was not an option and it is one that carried into adulthood.

There were times I was sick in college (with the flu) when I would be in bed chastising myself for not being up and doing laundry. Or studying. Or writing a paper. Or in class taking notes that I would need for the mid-term/final. It took a long time to train myself to allow myself to rest when it came to short-term illnesses.

Living with chronic and illness and pain is different. You might be able to get away with lots of rest in the beginning. But life doesn’t stop just because you have an illness/pain that won’t go away.

I still had to get homework done despite the migraines. I still had to cook despite the back pain. I still had to work when the migraines became daily. I still had to do laundry when I was fatigued every day and could barely lift a t-shirt to fold it. I was still dragging myself to work and cooking dinner every night as difficult as it was to move right before and after my Hypothyroid diagnosis.

When you live alone you don’t have a choice but learn how to navigate your world while in pain/ill. No one is going to cook for you or clean your house, unless you pay them. I barely had enough to pay the rent, feed myself, and pay tuition as a college student. Chaz certainly wasn’t going to work his full-time job and come home to do everything the multiple times I’ve battled with chronic illness and pain. He did a fair amount to help out, especially when fatigue took over and going grocery shopping was too much for me. Nothing like feeling like you’re going to collapse in the middle of the store or halfway up the stairs to your apartment.

Everyone figures out how to function with their limits in their own way. I shared an office for years. When I left the job I was sharing it with five other people. Throughout the course of that position I had three different offices with my various co-workers. First it was three of us with modular furniture in a tiny room. Then it was the basement of a house. I was able to eventually move my desk into an area of the basement with a separate light switch and I was able to keep the light off if a migraine was plaguing me.  Last was the office with six of us total, no separate areas and no modular walls separating us. I had to learn quickly how to tune five chattering people out when my head was throbbing. And when I had multiple things due and couldn’t be distracted.

I was counting spoons before I knew what spoons were. I would wake and assess how I felt and how my body felt. Does everything feel heavy and fuzzy? Yes. Today will be shower and cook dinner only. No. Let’s start with shower and see how we feel after that. My spoon counting went into overdrive when plantar fasciitis decided to join my party while I was working for a big box store. I had to menu plan based on my work schedule. Which meant I had to assess how long was I going to be on my feet before coming home to take care of my feet before standing on them again to make dinner. Yes, taking care of my feet. Inflammation doesn’t go down easily and it doesn’t help when  your feet feel like you’ve been doing nothing but walking on hot coals. Then inflammation went into overdrive before my adrenal fatigue diagnosis. I knew something was wrong when old injuries came back to haunt me. I was waking up in the middle of the night in pain and unable to go back to sleep. This was when my self-preservation kicked in and the need to get myself better took precedence. I cut back on my hours at work and scaled down my availability.

I never really know if I’m fatigued some days because of adrenal fatigue, Sjogren’s, reaction to water (yes, still battling the water demon), or reaction to something else I ate or in my environment. I know when the fatigue hits I need to dial it down and only do the minimum for the day.  I know on the good days I need to stop myself from doing too much so I don’t end up having an adrenal crash. I hold back even if I feel I have the energy to do more because I can easily overdo it. It doesn’t sound so bad, but when it takes at least a week to recover from a crash, you realize that is a week of productivity lost that could’ve been prevented.

Lying in your bed day after day does nothing unless you are on your deathbed or pregnant on doctor ordered bed rest. Long-term diagnosis whether you know the root cause of your illness or not is more than a sign to get it together. It’s a kick in the ass to make sure you’re already in the process of getting it together and figuring out how you will navigate your new world with your limits. I felt like I was giving up on life for those months when I was crawling into bed as soon as I got home from work then dragging myself out of it to fix dinner. You can’t truly live life from a bed when self-pity is your bedfellow.

People depend you to be able to function at some level at work and at home. If you are married or living with someone, they can’t work, take care of the house, and take care of you without some detriment to their own health. If you have kids, they depend on Mommy or Daddy being present to meet their needs. Shutting them out is not an option. Most of us continue to work and those we work with/for depend on us to continue to produce the work we are paid to do. Many employers will provide accommodations for employees when possible. Bottom line is that you are expected to do your job and in many cases, someone else’s job depends on your output. Adaptation is your best friend in the world of chronic pain/illness and your support system is there to help you along the way. You have to help yourself first and decide to start living again.

“Death is not the greatest loss in life. The greatest loss is what dies inside of us while we live.” ~Norman Cousins