This One Is For The Caretakers
As a kid it was my parents who held me as I screamed and cried in pain for hours on end until I would vomit and the migraine would leave me like a demon that had just been cast out. Then my grandparents would take over for another day or two while my parents went back to work and I recovered from what seemed like a collision with a Mac Truck. The migraines were sporadic, sometimes coming 1 or 2 times a month or sparing me for 6-9 months in between. My family kept up with the latest in Migraine treatments and also took me to a Chiropractor, a family friend, when it was evident that my neck and shoulders were extremely tense with each bout. Even today, as a 32-year-old woman, there are times when I need help and I stay with my parents to take the burden off of my boyfriend for a few days. My Mom will constantly ask me what she can do… and then ask me again 10 minutes later, like something had changed. She feels helpless. I wish I could give her a small task to satisfy her maternal instincts, but just having someone around can be good medicine.
Unfortunately, I did not “grow out” of my headaches. As I entered the professional world, I learned early to hoard my sick time and allocate vacation days to cover what I might need for “Migraine Maintenance.” Certain coworkers can recognize the tell-tale signs on my face when another migraine is about to hit. Two and half years ago, the migraines turned from occasional to chronic very suddenly. It disrupted my work life to the extent that I would send a daily email to my team letting them know if I was functional enough to make to the office that day. Some of my clients have been the best supporters, sending me articles or giving me doctor referrals. About 4 months ago, I made the decision with my doctor to go out on disability in order to try new therapies. My boss, my coworkers, my clients and my employer have been incredibly supportive. As I work hard to return soon, I recognize this network of people in my life also serve as Caretakers because they have given me the ability to focus on taking care of myself.
Recently one of my close friends said to me “It’s so hard to be your friend. I just want you to be better!” That was the most honest sentiment I’ve heard since the migraines became chronic. I have perfect intentions of going to a party or spending the weekend at the lake or enjoying a winery trip. But when the pain sidelines me, it’s better to sit out than to push it and end up miserable. I feel guilty cancelling at the last minute, but my friends understand and it makes the times we spend together much sweeter for me. They send me wacky “migraine cures,” take me grocery shopping or pick up meds, and have taken their turns at babysitting me. And even when I go into hiding during a really bad attack, I don’t need to apologize because they know I’m doing the best that I can.
But the Caretaker that suffers the most, is my partner. About 8 months after we started dating my headaches became chronic. In the beginning we assumed we would find the reason and life would eventually return to normal. Now we realize that this is the new normal and I have to manage the pain and the symptoms the best I can to live as full a life as possible. He is my patient advocate by coming to every major doctor’s visit with me, searching the web for the newest treatments, and even calling me during the day to make sure I make it out of bed to an appointment. He pushes me to do the work at making life better. Going to the gym after two years of debilitating headaches seemed like an impossible feat, but his encouragement got me on a regular schedule and I feel stronger for it. When I recently began to lose my hair due to what we think is medication related issue, he embraced it and said I could rock a short haircut if it came down to it.
This road has definitely not been easy on him. I can’t imagine how frustrating it is when I try a new medication or go to a new doctor and hit another road block. Does he secretly want the fun-loving girl he met who could be spontaneous and stay up half the night instead of the girlfriend who needs to have a contingency plan in case she needs to go to the ER? Of course and so do I! It can’t be easy when it’s been 2 weeks of a non-stop migraine and he’s tired of hearing me complain that my head hurts when we’ve tried every tool in the box. He’s my Superman, but he alone can’t fix me (even though he wishes he could). So I try to keep the negativity to a minimum and reach out to others for help when I can. Most people ask me how I’m doing, but those who really understand the situation ask how he’s doing and that is just as important.
I know I’m lucky. I’m lucky to have family, friends, co-workers, and a boyfriend who support me in my journey. Without them I could easily be depressed and stuck. They give me the fuel to continuously seek out new options and to find healthy ways to cope. The Caretakers can easily get overlooked, overtired and resentful. So here’s to the Caretakers who go above and beyond, this one’s for you!