By Brittany –
It’s been 4 years since I was diagnosed with chronic migraine. Having never experienced a migraine prior to the concussion that caused this chronic neurological disease, to say the last 4 years has been a challenging learning experience is an understatement.
This last month has been particularly challenging, with each day being 8.5 – 9/10 on my pain and subsequent symptom scale. Usually I’m pretty good at hiding my pain, but for weeks it was written all over my body for the whole world to see. People kept saying “I don’t know how you do it!” and normally my response is “I’ve had to learn how to, otherwise I’d have no quality of life.” But over the course of the month, my response changed to “I don’t know how I do it anymore either.”
As I look back on the journey, these were the lessons I’ve learned that kept me going.
1. Being honest about where I was at.
I’ve been here before, and my coping mechanism has been to push through, to hide and to downplay the severity of what I was actually going through. This year was the first time I was alone for the holidays, and that was a big trigger for me. I prepared myself as best as I could, but it was harder than I thought it would be, both mentally and physically. So when people asked how my holidays were, I embraced vulnerability and said “This year was pretty tough” instead of the easy but dishonest answer of “It was good thanks, how about you?”
As I continued to deteriorate over the coming days, I chose to ask for support from family and friends (something that has always been a challenge for me). I also chose to ask for space to conserve what little energy I had. I left the house without makeup because I realized it was ok for the world to see I was hurting. I didn’t downplay what I was going through, and in turn I was overwhelmed by support and compassion.
2. Acknowledging my body out loud.
I get very frustrated with my body quickly, and in turn my own self-talk can be quite negative. I have all of these things that I want to do, that I need to do, and again, my coping mechanism is to push through and deal with the consequences later, but this time I chose a different strategy.
After so many days of being alone, I wanted to partake in New Years Eve festivities, even though my body was in no shape to be around other people. I pushed myself, almost to my breaking point, because I so desperately wanted to be included and be “normal” for a few hours, but as I stood outside in the cold and rain waiting for the streetcar, I came to my senses. I said out loud to myself, “You’re right, this is irresponsible. I shouldn’t be traveling alone in the state I’m in.” I went back upstairs and cried, but I knew that being alone for New Years was better than being stranded somewhere else alone.
Another time, I made a checklist of household tasks that needed done, and this time I broke it down into simple things such as take garbage out, dust coffee table, make coffee, sweep kitchen. I had almost everything done, and was halfway through doing the floors (kitchen done, but I decided to keep going) when my pain flared and fatigue hit me like a freight train. Instead of ignoring it, I said out loud “I hear you. We’re almost done, 5 more minutes and then we’ll rest. Thank you for supporting me.”
I may sound like a crazy person to anyone overhearing me, but verbal acknowledgement to myself has been a very empowering and helpful tool I’ve learned.
3. Maintaining a routine.
Believe it or not, I didn’t miss any work during that last bad spell. Thankfully, I have a job that is very supportive of my health and limitations. There was one day where my doctors said I for sure should have stayed home or went to the hospital (I did eventually wind up going that night) but I got up and went to work so at least I wouldn’t be alone. Getting out of the house and feeling like I could still contribute helped me immensely.
I did my best to eat at the same time each day, drink adequate fluids, take my meds and go to bed at the same time. Painsomnia awoke me around 5:00 am almost every day, so my quality of sleep wasn’t optimal, but I did what I could to maintain and manage it to the best of my ability.
4. Committing to 10 minutes (or more, or less) of intentional movement each day.
Energy can be fleeting. Pain, fatigue, nausea and dizziness can make movement next to impossible at times. There were so many days my body craved movement but didn’t support it, so eventually I gave up and just begrudgingly ignored it without any attempt.
I felt like if I was to do anything less than 20 minutes, what’s the point? I worked on reframing my belief around that, giving myself permission that any movement with intention behind it was good enough. A 5 minute walk to the grocery store, recognizing my breath and support of my legs, is intentional movement. Practicing a 15 minute YouTube yoga video was intentional.
One night I rolled my yoga mat into the dark front entry way of my condo, plugged in my headphones to some soothing music and found myself doing a 25 minute very slow and gentle yoga practice on my back. The next day I couldn’t handle more than 7 minutes, but at least I had the intention to move and listened to my body when it said that wasn’t supporting me in the moment.
Whatever you decide to commit to, make sure it’s something that will support you, but also give yourself permission to rest or skip a day when it doesn’t serve you.
5. Reminding myself this cycle WILL break — it always does — and embracing the good moments.
With this cycle, I found myself in the ER for the first time ever, only because both my doctors were away over the Christmas break. The IV cocktail the ER doctor gave me reduced my pain for about 3 hours, and then I was hit with one of the worst rebound headaches I’d ever experienced. Was it worth it? In those few hours of slight relief, yes.
When I finally got in to see my specialist, we were both desperate. Since nerve blocks never gave more than 20 hours of relief, we decided to try something different. He prescribed an oral steroid that was to be taken very specifically and SHOULD break the cycle. After 1 day on it, I had 10 hours of substantial relief before I was knocked on my ass again. As defeating as it was that I only got 10 hours of relief, I GOT 10 HOURS OF RELIEF!!
And then 2 weeks later, I got 36 hours of relief, from nothing other than having a stressful event finally wrap up. When the migraine returned, I chose gratitude for the relief I had, and days later that gratitude is still carrying me through.
You see, all of these things are what keep me going. There are days where I wake up in the morning in agony, despair and defeat, with no idea of how I’ll make it through another day. But I do, and you can too. One breath at a time.