CRPS and Working: A Personal History

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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

Specimen of Acanthastrea lordhowensis photogra...

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

Wheelchair

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

AAAS brain

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!

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17 responses »

  1. Wow, what an awesome job that must have been. I bet it broke your heart to give it up. I can tell you were very passionate about it. I hope you have found a way to remain connected to that world. I’m sure you have a lot to contribute when you are feeling up to it.

    I’ve been weighing up my options lately. The idea of giving up my job because of my hip pain seems a little nuts. But so does requiring 2-3 months off a year to manage episodes of “accute chronic pain”. My problem is the pain is made worse by sitting and my job, being a desk job, requires a lot of sitting!! My problem now is I’ve got a good employer so I ought to stick to them. It’s a bit risky to change my career (or even my job) right now.

    • It was an amazing career, and it was really hard to let go of it, but I just feel so much better now. I’m still sort of staying away from that world, though, like a rough breakup–it’s still raw enough that being to close without being able to participate hurts. I’m hoping to find something new I can love the same way, but right now I’ve got to focus on my current job: taking care of me! It’s pretty much full-time at this point =-)

      I know they make cool desks on hinges that you can pull up so you can work standing and then push down to work sitting. It might be a good idea to figure out what kind of working positions and schedules it would take to let you avoid the flares, and then figure out if there is equipment you can get to help you keep working. There is a ton of equipment out there for ergonomics and disability/injury help. There may even be government help in puchasing that kind of stuff for you. It could be as simple as the right kind of desk, a broken up schedule that gives you time to do a little moving so you don’t stiffen up, and some time to work from home every day or week so you can lie down and rest your hip. Good employers are hard to find, especially right now, so it makes sense you don’t want to give yours up.

      Does the NZ government take care of you if you just can’t work anymore? When I was worrying about becoming destitute, my psych therapist had me research government support systems so I could find out what was really out there, and develop a backup plan in case my disabiliy didn’t come through. I didn’t need it but it helped to know there are resources out there for the worst case scenario. I was amazed to get into the US Social Security Disability program within months of applying–I was sure I’d have to appeal and get a lawyer and all that, and that can take years. So there seems to be more governmental support for chronic pain conditions now than there were even 10 years ago. That’s probably similar in New Zealand, and you’re likely to be better off since the US lags a bit behind in social services compared to other 1st world countries.

    • I’m so glad you didn’t find it depressing; I was afraid it would be a downer kind of story. I am really not unhappy, even though I do sometimes miss working. I’m doing what I need to do right now, and it’s working for me. =-)

  2. Pingback: Disability and Grief « Attempting Perfection

  3. Pingback: CRPS awareness month « Let's Rock the Ribbons!

  4. Reblogged this on Inspirational Stories and commented:
    This blog post brought me to tears.
    I havent been able to work since I broke my right foot last march 2012… I have it in both feet and now both arms/hands.
    Being 25yrs old,single, and living with your parents,not being able to work..And at the same time, loosing my “best friend” and close friends of 13+yrs,after i broke my foot..play a huge toll on me.
    It’s amazing how quickly your entire life can change..literally in a blink of an eye. I don’t know where I’d be without my parents. They have been my support system,and I am now dependent on them again. But, it could be worse. I could have no one.
    Thank you so much for sharing your story that relates to working.
    I’d do anything to be able to wake up early,go and work a 9hr day…come home,and complain about my hectic day lol. ((I know-sounds crazy)) but it sounds amazing when your stuck in bed for a yr,with no end in sight.

    I really hope you have been able to keep in contact with those you worked with, and connect in some way with your passion((there is always writing! 🙂 How To’s,Manuals,Etc.. For people who work there,so they receive the TLC that you provided!)
    Anyway, I hope you don’t mind that I share your post. It’s very inspiring.
    We will wake up one day,and we will not have CRPS on our mind 24/7! There will be a cure!
    🙂
    I hope all is well!

    *Please check out this post! Along with the rest of the blog!*

    Gentle hugs,
    Heather Lynn

  5. Pingback: Heather Lynn and CRPS | Inspirational Stories

  6. CRPS has been a nightmare. Had foot surgery and ended up in constant unrelenting pain…my employer was totally understanding at first but now they are threatening my job…its like they don’t understand that all of this is an inconvenience to me too not just them. I asked to be put in our lab to be trained to make dentures as being a dental assistant is too much for me now. They said yes at first but now seem to be trying to get rid of me before I can switch. Its a nightmare. My heart goes out to everyone with CRPS. At this point I just don’t know what to do. I feel defeated and worthless. Your story was wonderful, I just hope I can get to a happy ending soon.

    • I am sorry to hear that you are struggling with this. It is so hard to have to fight for your job and cope with CRPS at the same time! Remember that you are protected for 90 nonconsecutive work days per year under the FMLA act. It can also help to write up your physical limitations (what can you do for how long per day and how long at one go without making your pain unbearable or worse the next day? What can’t you do?) and have your doctor verify it. I hope things get easier for you soon!

  7. Thank you so much for sharing your story. I am facing a similar decision and because in my career as an engineer I need to be able to do complex calculations and be able to think quickly….I am finding out through my own stubbornness that I can no longer think that quickly and going out to the job site is not safe or an option anymore….I hope I can get social security disability fairly quickly as it is just me and I have no other support system for income And I have used up all my unemployment benefits.

    • It was a real struggle for me, but several years on now I’m glad I did stop working. In the past year, I actually have starting considering working again, as my own boss in a field I deeply enjoy. I am still working on my activity level, but it is an avenue forward I can see for myself to return to the working world some day.

      I hope you get your SSD quickly and relatively easily. Be as complete as you can be with your application, get as many doctors to stand behind you as possible, and include the effects this thing has on your thinking and anxiety levels and ability to cope with stress–they are all valid too!

  8. Replace foot with hand, and this could be me. I’ve finally determined (after nine months of on/off part time work) that I need to stop for a while and get getter if I can. Thankful for good sick leave/disability plans. I’m trying to figure out my new reality and still hope I might be able to go back to my dream job, but not right now. Thanks for making me feel less alone.

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