My life of leisure is so amazing. I only have to work two days a week because I am so financially secure. I get to have days off during the week to do whatever I want while others are working their full time jobs.
I couldn’t keep from snickering as I typed those sentences. Let me tell you all about my “ample free time” and my “amazing part-time life.”
Some people assume I must be financially secure to only work two days a week. Nothing could be further from the truth. My husband and I built our life planning on me working a full-time, five day a week job. After all I’m only 40, I should have no problem working and helping to support our family for many years to come.
Now we are still trying to adjust that life to fit the reality of me only being able to work two days a week. And then there is the constant influx of medical bills on top of the reduced income. Our family struggles financially because I’m only earning a small portion of the income I should be earning, and I continually add more bills and debt as I search for a medical treatment that will allow me to feel well enough to work my much-needed five days a week. What a wonderful cycle it is.
Some people assume that while they are at work stressed out, I am sleeping in, shopping, laying by the pool, enjoying all my free time. How I wish that were the truth. In reality while you are at work, there are very few times I am enjoying anything.
I long ago lost the ability to sleep in. Instead I am consistently awake at the crack of dawn; my back and joint pain screams at me first thing in the morning and I have no choice but to listen. The truth is I am probably awake long before your alarm goes off.
One of my biggest symptoms is fatigue and it is in control of me every day. However, I am completely unable to nap. Believe me there are times that I would give anything to just lie down and sleep for 30 minutes, an hour, anything, but no matter how I might try I absolutely cannot nap. I have to take several medications at bedtime to help me fall asleep and stay asleep.
Shopping is not an option for me unless it’s online. I have gotten to the point that my husband has to do all the grocery shopping because it completely and totally exhausts me. And then of course there’s the financial aspect of shopping. I don’t have any extra money for leisurely shopping.
Laying by the pool is also not an option. I have lupus so the sun is my enemy. Thirty minutes in the sun can cause me three days of misery in a flare and give me a lovely rash, not to mention I can no longer tolerate being hot; it also makes me sick.
As for all that free time, I guess you could consider sitting in waiting rooms at the doctor’s office and procedure rooms free time. I always thoroughly enjoy sitting in the hard plastic chairs that are torture on my back, hearing people all around me coughing and sneezing as I cringe every time because I am immunosuppressed and sitting amongst a billion germs. I so love paying copays I can’t afford and that seem to increase every time I see a new doctor, and trying to distract myself with my phone because after the 45 minute wait in the actual waiting room, I have another 30 minute wait in the actual exam room waiting for the doctor. Fun times for sure and exactly how I want to spend the little income I bring in.
Part of the reason I had to go part time was because I have an extensive amount of appointments. I have a primary care doctor I see every three months, a rheumatologist I see every month, a hematologist I see every four months, a urologist I see every six months and as needed in between, a cardiologist I see yearly, a neurologist I see every four months and as needed in between, pain management doctor I see every month with epidural injections every few months in addition to those visits, and a gynecologist I see yearly and as needed in between. I’m getting ready to start monthly infusions, and then I have the testing that is ordered by these doctors, frequent blood work and various x-rays, MRI’s, lumbar punctures and CT scans. I have also been told that I need bladder instillations every two weeks, but I am trying to only use that as a last resort. So much free time.
Some people assume I enjoy only working two days a week and that my life is so much less stressful and tiring because I don’t work a full time job. This one really gets me. This should be the prime of my life, the peak of my career in nursing, and instead I am struggling to get through each day. I knew at the age of 16 that I wanted to be a nurse and I went after it. I had goals and they most definitely didn’t include filing for disability at age 40. I wanted to pursue my nurse practitioner license and longed to work as a nurse practitioner in hospice. I worked as a hospice nurse for four years and it is my passion, my true love in nursing but the physical and emotional demands of the job make it impossible for me to do anymore. I had to leave that job five years ago and I miss it every single day.
I have been told by my rheumatologist that I should file for disability because he thinks it will improve my quality of life. I am trying everything in my power to not have to go this route. I love being a nurse and in a way it is my identity. It’s who I am, who I always wanted to be. I don’t want to give that up. However, it also infuriates me when I am at work and I make a comment to a friend about being tired and the response I get is, “how do you think we feel, we do this five days a week.” As if I have never felt the exhaustion of working a full time job and I am somehow unworthy of feeling tired because I only work two days a week.
Sometimes people assume I must be so much happier only having to work part time. I feel so many emotions every day related to my chronic illness, but I can say without a doubt that happiness is not one of them. I have had to give up so much because of something that is out of my control. This is not a choice I have made, it is what my body is physically able to do.
I would give anything to be physically able to work a full time job. Heck, I would love to be able to spend a day cleaning my house! So many people take their health for granted and their ability to be tired and still push through. If you’re healthy and complain about your 40-hour work week, please remember there are some people who would love to feel that exhaustion instead of the exhaustion of fighting an ever-changing and invisible illness.