I thought today I’d talk a little about my experiences with working and having CRPS. First thing you have to know about me is that I am as obstinate as a mule, and I’ve put that to work for me in my career before with positive results. So, my default reaction to something that makes work more difficult, or even threatens my career, is to stubbornly work harder at finding a solution, often exhausting myself in the process. Before CRPS, this tactic had never failed me.
When I sprained my ankle, I was working in my dream career field. I was an aquarist, which basically means I was a
zookeeper for fish (and other aquatic animals). I had attended two additional years of school for this career after my Bachelor’s degree, and had interned at an aquarium in Spain, and then worked in New York City for several years before moving to Guam for a new aquarist job with a greater range of job duties. One of my favorite parts of my aquarist job in Guam was the health care side of fish keeping, in which I had a lot more responsibility since there was no dedicated veterinary staff on site.
Even getting into aquatic animal husbandry was a benefit of some obstinacy on my part: I was a person allergic to the dander of every animal with hair, fur, or feathers. But animals were my passion, and I harnessed my stubbornness and found an animal husbandry career that didn’t aggravate my allergies because the animals were all wet!
So here I was, in an extremely physical job, with a sprained ankle. I was put on “light duty” and kept myself busy doing paperwork, advising or overseeing the people assigned to take care of my assigned animals, taking on extra duties in the laboratory doing water quality testing and measuring treatments, and even ended up helping with billing and stuff for the curator, working in the education department. and doing some program and exhibit design. Initially were some parts of light duty that were interesting or enjoyable, but I missed my job and having to try to direct someone else in doing it was hard. But light duty was supposed to be temporary. And my ankle kept hurting more and more, and I kept returning to the doctors looking for not only an explanation of why the pain was increasing instead of going away, but for treatment for my pain.
The first couple doctors responded by immobilizing my ankle further and giving me painkillers. I went from a wrap to a brace to a walking cast to crutches and a solid cast. I spent almost two months in a wheelchair. The stress of constant, ever-increasing pain made me increasingly susceptible to other stresses. I worried constantly about whether what I was able to do for my employer was enough for me to not lose my position. The pain medications combined with the pain
made it increasingly difficult to calculate, to concentrate, to remember–to keep from breaking down in tears. My supervisor and most of my coworkers were extremely kind and supportive, but the company itself was going through some stressful changes and my ability to cope with the additional stress was minimal. I was on light duty for almost a year. One of my light duty assignments took me out of my department, and I worked as hard as I could, increasing my hours. getting more and more stressed, and in more and more pain. I finally begged my doctor to return me to full active duty, forgoing medical protection of myself to get back into my department under my supervisor’s protection.
What was my home life like during all of this? What home life? I got up, went to work, sometimes there was PT or an appointment, went home, laid down in bed with my computer and TV. If I ate, it was because my sweetie brought me food. He washed all the dishes, did all the cooking and shopping and housecleaning and laundry. I couldn’t even take a shower without him. He’d drive me to work and pick me up to drive me home. Sometimes the old elevator to our 8th floor apartment stopped working. He bought me kneepads and I would cry in our car and then crawl up 8 flights of stairs on my hands and knees while he encouraged me. I had some friends that would pick me up and take me to our weekly game night and then drive me home afterward–that was the only thing I did outside my house that was not work.
When I got diagnosed, the doctor assured me there was no reason why I wouldn’t be able to keep my career. Yet the constant pain, even with the new medications, kept increasing and increasing. I wasn’t managing my pain, I was just doing my best to medicate it away as much as possible and ignore the rest of it. It wasn’t working. And, as things got increasingly stressful at my job, I realized that doing this work was making me worse. It was a difficult decision to make, but I decided I needed to find a less stressful career. I went to work in a laboratory. Not working at all was not an option I was even willing to consider.
Chronic pain makes your brain shrink. I’m not saying this metaphorically, it is a scientifically proven fact that the
human brain in constant pain atrophies away, something like 10% loss in mass–a huge amount! So I had pain, stress from pain, stress from trying to learn a totally new job, stress from what working was doing to my home life and relationship, and brain shrinkage. And yet, I was able to keep up with it for a while. My new boss understood chronic pain and was flexible. I bought a small foam mattress, and would go lie down in my car for my lunch break. I moved to a nearer apartment with just one flight of stairs. I started taking a 2-hour break and going home for lunch. I stopped going to game night–I was just too tired and in too much pain to get out of bed any day I didn’t go to work. Nothing helped enough. I had more and more trouble getting all 40 hours done in a week, and more and more trouble not getting emotional about every little thing. My pain continued to increase.
Finally, I had a big talk with my sweetie. All my friends had been telling me to stop working for quite some time, and we decided we could survive if I quit working, at least for a little while. To be honest, even if we hadn’t had a way to scrape by, I would have had to stop working soon anyway, because I wouldn’t have been able to keep dragging myself out of bed and going to work. It was a miserable decision to have to make, but it was the only choice I had to salvage anything out of my life and keep myself from getting worse.
At first, I thought it would only be temporary. As I settled into my new “job” of seeing doctors, doing various types of therapy, and taking care of myself, I slowly figured out what it took to make life tolerable. To have the energy to get up and at least reheat my own lunch, make sure I get the walking that I need not to keep my position from progressing, and generally to take care of myself. And it finally sank in that it will be a long time, if ever, before I have enough energy left over from simply living with this pain condition and all it entails to be able to work again. Taking care of myself takes a huge amount of work, and even now I don’t do it all–I have my sweetie and others who help me. So I applied for Social Security Disability. And a couple months ago, my application was accepted. While it’s not a lot of money, it’s enough that we can stop using up my sweetie’s emergency fund, and I can pay for my treatments and such. And so I have accepted that my CRPS is a disability. There just is no amount of obstinacy that can indefinitely ignore a chronic pain condition.
Now, just because CRPS is a disability for me and for some other people I know, it doesn’t mean that nobody with CRPS can work. Some people may have a less severe version of the condition, and/or have better success at managing their pain. Some people may be able to work part-time and still maintain a tolerable quality of life. There’s a range amongst CRPS patients, like in many other conditions. What’s important is that the patient is still able to have a life AND work effectively. That’s not possible for me at this time in my life. I hope it is possible again in the future, but for now, my job is taking care of myself, and I’m going to do the very best job of it I can!