The Light at the End of the Tunnel: Returning to Work
In my article in which I revealed that I am participating in a new CGRP clinical trial, I implied that the last few weeks have been very eventful. In fact, they have been some of the most eventful of my entire life.
Impulsively, I decided to apply for a job.
Resigning from a five year job
I had to quit my full time, very stressful position with the city parks and recreation department in January 2013. Desperate to get my migraine situation under control (I'd been chronic daily since my pregnancy with Zo), in the two years prior I had visited a hospital renowned for its quality of care; took FMLA time to have a hysterectomy; received three unsuccessful rounds of Botox; re-tried a number of preventatives; and submitted to physical therapy.
Finally, I simply could no longer fulfill the requirements of my job. I missed too many shifts, and when I tried to force myself to go and work through it, I would end up having to curl up on the floor in the dark break room or leave halfway through, sometimes even vomiting in the parking lot. There were other factors but my health was the primary one, and I resigned after five years of service. John and I had thought I would take some time to rest and recuperate and then look for a less stressful job in the fall.
Applying for disability
We were a bit overly optimistic. With the financial difficulties mounting as a result of becoming a one-income family, my migraine disease actually seemed to get worse, which I would not have thought possible. Fall came and went and we decided that it made sense for me to apply for disability benefits since working was out of the question. I was approved on my first try, and John and I began developing our Migraine365 project and I devoted myself to the girls, whom I hadn't seen nearly enough of while working evenings for parks and rec.
I continued to blog, did a lot of research, and got to know many members of the online migraine community. Around this time, H first contacted me about the Amgen clinical trial, and with that I regained some of my life. I began volunteering at the local history museum, joined the advisory board of my daughter's theatre group, and was even in a play myself.
Finding work from home opportunities
Working still seemed an impossibility when I began the second study. However, I was able to work from home, assisting with the local online news journal John helped create. I coordinated ad space, copy edited, published obituaries, and wrote a few pieces myself. Then I was added to the amazing team of patient advocates on Migraine.com. When the second study ended I had those terrifying couple of months when I was so much worse, but with the start of the new year my migraine situation leveled out and I was back to functioning much like I had between the two studies. I call it almost not chronic.
Answering a help wanted ad
Then, our local library contacted me about running a help wanted ad. I arranged all the details, typed up the invoice and uploaded the image, and as I read the job description my heart started to pound. Library page. Shelving, twenty hours per week. I placed the ad and when John returned I asked him what he thought. Was I ready? Could I handle a real job outside the house, with real hours and a real boss? There would be real paychecks, which was a definite plus. The look on John's face told me all I needed to know. I emailed the administrative assistant again and told her I planned to apply for the page position. That very night, I filled out the application. Thankfully, no resume was needed. I submitted everything the next day. I didn't give myself time to think or hesitate or second guess.
The next week I was called to come in for an interview.
Bringing up migraine during the interview
There were three people on the other side of the table in the conference room, and while I was nervous, I also felt completely at ease, believing no one could be more qualified than I to shelve books at a library. I was forthright both on my application and in my interview about having been disabled, and explained that while I am much improved, migraine is still a huge part of my life. I said I felt that in a quiet library environment with few responsibilities other than to learn the Dewey Decimal System and remember the alphabet, I should do just fine. The interview went so well that I was giddy when I left and for hours afterward.
I got the job.
Migraine showing up at the new job
So far, I have had four morning shifts. The day before the first, I had a severe migraine. Getting ready for work I felt nauseated and hot, my head swimming. I only made it through half of my very first day. The worst case scenario, my worst nightmare, and that is how Medusa (what I call my migraine disease) plays its game. Any changes, even positive ones, especially if other factors are involved like weather and sleep disturbance, can bring on an attack, and for me, usually a severe one.
As I was trained by a handsome young guy and we shelved mysteries and giggled at some of the cheesy titles (Kill Two Birds and Get Stoned) I began to feel worse and filled him in on my situation. I refilled my water and took more medication. After another hour, I told him I needed to just go sit. The building was so hot. My whole body rolled with nausea, my skin prickled, my head pain was tempered some by the medication I'd taken but it constantly made its presence known, pushing against the backs of my eyes as I struggled to read the small letters on the spines of the hardback fiction we were working on, the sun pouring through the huge windows.
Packing up early
Once in the break room, I knew it was over. I hoped the whole job wasn't over, but that shift certainly had to be, or I'd end up vomiting right there, or passing out, and I really thought the ER was a possibility either way. My direct supervisor wasn't around, but everyone was extremely nice as I tearfully packed up my things and stumbled out into the chilly air. I live only six blocks from the library. I dumped all my things on the floor, grabbed an ice pack and a Phenergan suppository (can't exactly use that at work), and collapsed in a devastated but relieved heap on my cool, comfortable bed. I sent my supervisor a mortified, apologetic text with tears streaming down my burning cheeks (she prefers texts too, how lucky). Her response was very kind. I proceeded to sleep for 18 hours.
Taking it one day at a time
The next day, firmly in the dry mouth and brain fog of postdrome, I thought about how lucky it was that I had been offered the new study right at the same time I was offered the job. My former neurologist was still refusing to prescribe Imitrex, and I was running very low on my hoarded supply. Even so, I won't receive the study medication for another month. I was going to have to push through somehow, one day at a time.
And so, that's what I'm doing. My next shift after I'd had to leave, the people I interacted with were both kind and tactful. I shelved kids' nonfiction, fiction, and picture books. I read the PDF of the employee manual and signed more forms. I took my cart up on the elevator and shelved romance and science fiction. I drank a lot of water and kept ahead of the encroaching migraine hangover type headache. The building is definitely hot, so that night I purchased some moisture-wicking lightweight shirts and capri pants. Each day it gets a little easier, though I never would have predicted that simply standing, bending, and reaching would be so hard on my body.
Here to stay
But I can do this. It was the right time, and it is the right job. I actually have a job. The impact on my self-worth and mood is already apparent. It is going to be a lot of adjustment for the whole family; twenty hours per week doesn't sound like much, but it is five days of four hour shifts. I am right on the verge of no longer being chronic; I am definitely no longer disabled and didn't re-apply at the three year point. There always was a light at the end of the tunnel, a tunnel paved with community support, clinical trials, and a lot of ups and downs. And I have reached that light. Facing it, yes, I need to wear my TheraSpecs. But I'm here. And I intend to stay.
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