I’m checking back in after a bit of an absence. I haven’t garnered a huge following yet, so it’s unlikely anyone noticed I was missing. However, I had gotten back in the habit of writing, so I noticed its absence.
To be honest, I have been doing quite a bit of writing lately. It’s just that the writing I have been doing hasn’t been a satisfying substitution for my blog writing. Last month, I completed the initial paperwork for Social Security Disability. It is a lengthy process and I can see now why people either put it off or give up on it. The process involved completing detailed online questionnaires about my personal, medical, and work history. To complete all of these forms, I spent a lot of time organizing the last two years of doctor’s appointments and medical records, and the last 15 years of work history. I hit submit and breathed a sigh of relief thinking I was done. About a week later, I received in the mail an even lengthier set of forms assessing my functioning, work history (again), and “headaches.”
Collecting the relevant information was hard enough, but the most mentally – and emotionally – draining part was answering questions about a typical day, how my illness has affected my ability to work, and how it has changed my social activities and hobbies. I was also asked to describe how I feel before, during, and after a “headache.” I keep putting headache in quotes because that is their phrase. Throughout my application, I kindly corrected them and explained that I have chronic migraine, a neurological disorder of which headache is just one symptom. I do this not to antagonize, but it is just one more opportunity to educate. You see Social Security doesn’t list migraine as its own category of disability even though it is now the second largest cause of disability worldwide.
Back to the questionnaires, though. These questions asked me to rip a band-aid off wounds I have been trying really hard to heal for over a year. Take for example this open-ended and overwhelming question, “What were you able to do before your illnesses, injuries, or conditions that you can’t do now?” How do I even begin to answer that? My life has changed so dramatically in the last 18 months that I’m not sure I can even remember everything I used to do that I can’t do now. If I could, my response would likely go on for pages. So I gave a sampling.
I explained much of what I’ve described to you in earlier posts. I don’t eat the same foods. My diet has been restricted to avoid common and not-so-common triggers. This makes eating outside the home challenging and eating in general stressful. I can’t support myself. I don’t have mental or physical stamina to be a consistent and dependable employee. I stepped out of my career right after finishing my PhD and that has been immensely disappointing. I don’t travel to new places or to visit friends, because sleeping in a new place can trigger a migraine attack. The physical process of travel itself – flying or long car rides – can expose me to triggers. I’m not as physically active as I was. Paddling is one of my favorite things to do, but I haven’t used my kayak in two years. When I lived in Boston I attended concerts, theater, and sporting events, but most of these types of events would be impossible now without triggering a full-blown attack because of lights and sounds. I can’t read physical or e-books. The eye movements either trigger migraine or worsen symptoms. I now rely on audiobooks.
I described how chronic migraine has changed my life and my personality. I was always more of a planner and introvert by nature, but now I have no choice. There is no such thing as a spontaneous meeting with a friend or a last-minute weekend adventure. I need time to review menus or maps, and time to make sure I have on hand all of my medications, supplements, devices, and any other migraine-related needs. From the time I wake up to the time I go to sleep, I am assessing controllable triggers and doing a cost-benefit analysis of any activity. I was also careful to explain that so many of my triggers are unknown or out of my control.
… and that was just the first question. I spent the better part of the last three weeks going through these questions, answering honestly, and doing bits at a time so as not to get too overwhelmed. Now I wait to see what the next step brings. I’m thankful that I know others who have forged this path ahead of me and shared their knowledge and experience. I’m also very thankful that I have my family’s help and support while I wait out this lengthy process.