Living with autoimmune diseases is a constant struggle of finding the right balance. How much fun is too much fun. How much sleep is too much sleep. How much work can be done without robbing you of any enjoyment in your life? Each activity is a mental juggle in your head because you know if you overdo, there will be a huge payment on the other side. It’s kind of like overspending when shopping. It’s fun buying all that “stuff”; but not so fun looking at your bank statement at the end of the month, or worse yet, not being able to afford the essentials because you overspent. The payment of illness and pain because of doing too much is always looming. The biggest question that looms in your brain is how much longer can I keep up this pace?
I have essentially lived with chronic pain since I was 12 years old and my spine was a 54 degree angle prior to my spine surgery for scoliosis. I didn’t care that I’d be on a Stryker frame in the pediatric ICU for a week. I also didn’t care that I would have to wear a body cast for 3 straight months or a brace for 3 more months after. I didn’t care that I’d miss a year of swimming when I was one of the top swimmers in the state. Why didn’t I care? I was in so much pain that I was willing to do whatever it took to stop that pain. For me, that meant an invasive 5 hour back surgery where a 12” Harrington rod was placed between my ribs and my spine and bone was fused around it. Without that surgery I would have been in a wheelchair by the age of 20. I’d never achieve my dream of becoming a mom. The surgery was a no brainer, even at 13 years old.
In the years following my back surgery, I experienced a different kind of pain. Studying was difficult in school because of the angle of my neck, above my fusion. Roller coasters and water rides were a no-go for me as the quick descents also moved my neck in a way that was painful. I adapted and avoided situations that would cause pain. I couldn’t adapt the weather, however, and every fall transition to winter, the pain in my fusion (which now had arthritis all around it) is often times breath stopping. However, this constant pain is much more livable than what it would have been had I not had the surgery. I am not in a wheelchair and I’ve achieved my dream of becoming a Mom.
Working would cause pain; and lots of it. Sitting at a desk all day caused pain and muscle spasms. Driving all day when doing business to business sales was also not a great fit. I’d make it through the day but each night I was in extreme pain when walking, trying to walk upstairs, or simply trying to sleep. In my mid-30’s the diagnosis of Fibromyalgia came into the picture. Meds were started and I learned to listen to my body. Exhaustion for me and others with fibromyalgia is literally a pain trigger. Massage and OMT treatments were also begun. I had more than one massage therapist ask me why I was still working and hadn’t filed for disability. Stopping work was not an option as I was now a single mom. I worked just as hard at managing my pain so that I could continue to work. I had 3 growing teenage boys that needed to be fed, clothed, and given a childhood with fun memories.
In the last few years, I started juggling a lot more than pain. My body would get extremely sick when I was exhausted. I couldn’t get over colds, they’d turn into bronchitis. I would feel like I was being weighed down by a lead apron and every step felt like I was trudging through mud. Debilitating migraines started to be as frequent as multiple times a week. My bosses were as supportive as they could be. However, when I was absent, my job wasn’t getting done. Other’s had to pick up my slack. This fact led to more stress for me, which in turn led to more pain, more sickness, and thus more absences from work. It was a vicious cycle. All of my vacation days became sick days and I was always out of any paid time off prior to the end of the year.
Things changed drastically in the fall of 2015 into the winter of 2016. I could no longer make it through a normal 40 hour work week. I spent every weekend recovering from working all week. I barely left my house on the weekends; and I certainly wasn’t enjoying life. By March of 2016 I had used all of my sick and vacation time. Co-workers questioned why I was always sick was because they didn’t think I “looked” sick. Some even confronted my boss about the flexibility in my schedule that I had negotiated when I was recruited. Trying to fulfill the expectations of my bosses and co-workers became utterly impossible and the worst trigger for my autoimmune diseases. Doctors appointments, specialist appointments, lab draws and medical testing were non-negotiable when trying to get to the bottom of why I was so sick. When I tried to work through being sick, I would just get sicker.
In April of 2016, I knew it was time. I knew I needed to get done work and file for Social Security Disability (SSDI). This was one of the most difficult and emotional decisions of my life. My identity was changing. My budget was going to take a huge hit. This decision was also going to show me who my true friends were and which friends were simply business associates. That reality was difficult to process during this most difficult time in my life.
Stopping work and filing for disability is a complete and utter change to your whole persona. Realizing that your illness was going to define you no matter how hard you worked to try to not let it is an extremely painful and emotional experience. It is not a decision that is made in haste. I know so many others who have battled autoimmune diseases for even longer than I have who also hung on to the bitter end until there was absolutely no other option left.
I’m now about a year and a half past that painful decision to get done work. I was extremely fortunate that my SSDI was approved in 5 months. My stress level from work has been eradicated. Diagnosis and treatments have been started. I no longer stress over having to tell my boss that I have yet another doctor’s appointment or that I can’t come into work, yet again, because I am sick. On days that I don’t feel well, I can curl up at home, rest, and recover without guilt. I still have many days of not feeling well and barely being able to get off my recliner; but when those days happen, I’m not letting anyone down. Well, my dogs give me their sad looks from not getting taken for a walk on those days. Fortunately, all is forgotten with them as soon as their next walk happens!
Last weekend I was telling my son what my weekend plans were. I was excited to be able to actually walk in my first EMMC Champion the Cure Challenge. His response floored me. He said “Mom, I remember all the years you just laid on the couch all the time wanting to do things but you couldn’t. I’m so happy that you can now do things you want to do.” Me too. Now that I can rest when I need to and my stress level has been lowered immensely, I can finally live a life worth living and make memories. It’s all a balance. When the balance won’t work no matter how hard you try, it is indeed time to take an honest look at what needs to be done. Even if that means getting done work and filing for Disability.