I’ll admit there are a lot of sad aspects to living in chronic pain. It’s no picnic any day, regardless of how it’s viewed. But at least I have the benefit of some experience. Pain from two different sources that lasted five years qualifies, doesn’t it?
In 1996, I took my first job after graduating from college. I was excited to be working at a small company as a contract systems administrator. It was a great experience professionally. Physically, however, it was a ticking time bomb.
They say hindsight is 20/20. Well, I was the textbook example of someone doomed to repetitive strain injuries (RSI). As a result of sitting at poorly configured workstations (setup in a generic way for rotating sysadmins), driving extensively and being a woman with a small frame, after 6 months of work I was already numb and having shooting pain. Unfortunately, I waited 3 more before seeing a specialist. Lucky for me, a friend who was an employee at one of my client sites had suffered from RSI as well and he had a good doctor.
Sadly, things had gone too far. I had carpal tunnel syndrome, tendinitis in the wrist, neck and shoulders, and epicondilitis in the elbows (special thanks to the Microsoft “Natural” keyboard). I had to quit my job and recover. After a year of physical therapy, workers’ comp paperwork from hell (try filling out the same dumb forms with the same dumb questions over & over when your hands are in shooting pain), a lot of rest and a vocational rehabilitation plan, I was making progress. Unfortunately, the pain wasn’t completely gone.
The first year was awful. I couldn’t drive, cook, use a computer or many other things. Even though I got a special keyboard and standup desk, my time online was limited. I planned to start freelance writing and this is essentially how I first began working from home. I had no real choice – the kind of work I had done before was not going to fit with my physical needs – voice activation software was in its infancy and didn’t work with complex UNIX commands.
Meanwhile, it gets worse. At the same time, I was suffering from a series of urinary tract infections and some painful after-effects. I was diagnosed with something not quite understood at the time (one of those catch-all diagnoses): interstitial cystitis. What that translated to was shooting pain in the bladder when I tried to activate ab muscles to sit or when I tried to have sex.
It took five years to get over the pain from both of these conditions – in the wrists, shoulders, neck and pelvic area. Little did I know then that muscular and nerve damage in my pelvic area would refer mini-contractions to my uterus causing early contractions while pregnant. Little did I know I was a prime candidate for the stretched and trapped pelvic nerves that occurred during pregnancy and delivery and led to my current problem.
During those five years, I learned how to keep myself occupied while in pain. I learned what kinds of medications, treatments and tests I coulld and couldn’t tolerate. I learned to adapt how I worked, sat, drove, ate, drank, lived. I went through a divorce and a subsequent lawsuit with my ex. I resorted to a totally vegan and water diet because anything else inflamed my urethra. I learned how to tell my friends “sorry, I can’t make it tonight… I’m in too much pain.” Nobody quite understood.
In many ways, I am much luckier now than I was then. Sure, I’m in chronic pain and the pain is much more severe. But I can work, I have a wonderful daughter and a supportive husband. And I have an online community of amazing people who I know I can count on to be there for me every day.
I’ve been in pain before, but not like this.