2024 Edit of this post: Republishing the post from 2019 below, which I revisited recently while doing some blog revamping. While rereading this, I was so struck by how normal my way of operating was to me at the time…a time when I thought I was doing fairly well. Just a few months after I wrote everything below, I learned that the amount of ibuprofen I was taking (which seems unreal now) was impacting my kidney health. Eventually, this led me to quit the job that I was working at the time, and it totally broke my heart.
Fast forward to today? My innate need for a nap and the way I feel about talking/writing about the details of my pain haven’t changed. However, in my current season, I have some days I get through on only supplements, without taking an abortive med, or any Tylenol at all. And if I do have a busier/rough day, sometimes 500mg of Tylenol/ “only one” is enough to keep severe pain at bay. Apparent in the fact that I was taking so much immediately upon waking, I know for a fact that imagining this to be the case felt near impossible at the time I wrote the following words. Follow up blog- post to come, but for now, as you’ll see I hoped for below, I am grateful to have had these words to look back on and measure progress over the years. Enjoy.
What It Really Felt Like in 2019
I don’t want to write about this topic. Looking my pain in the face and confronting the reality of the impact it has on my life is almost too much to bear. Also, I just think it’s kinda boring. But, I’m doing it. I’m going to write about my current reality…. for 3 reasons:
- To create a tangible source to serve as a benchmark to measure future progress (which I wish I had for years past).
- To serve as a future reminder for myself of what I am capable of enduring
- Finally- for me to have somewhere to send people when I am asked what having Chronic Migraine really feels like (the inevitable follow up question)
I’ve had many seasons in my life when the only honest answer I could give was “pretty severe pain most of the time”, (meaning above a 5 or 6 pain level) besides maybe 1-2 days a week when I managed to bring it to low grade by major bumming and a lot of sleep. I’m so grateful to say that my current state is nearly opposite; experiencing severe pain 1-2 days a week, while for all other days my pain is generally low-grade.
What does this mean exactly? This is where this post will probably become not-very-exciting for anyone not living in the realm of chronic pain….but here it is.
I’ll start with the work week, when my primary goal is to get through working part-time and attempting to maintain/attend a few social activities. On a perfect day, after having slept 8.5-9 hrs at night, I’ll wake up and immediately take 1200mg of ibuprofen (if I wait even one hour it is significantly less effective). From then on, as long as I stick to my diet of essentially eating fat and protein, I have about 4hrs of experiencing a pain level of 2-3. When the time comes that my pain begins to creep higher than that, generally around 12:30 or 1pm, I face a choice to either 1) take another dose of 1200mg of ibuprofen and/or Tylenol to keep my pain from becoming severe, or 2) attempt to take an hour nap to do the same. My preferred choice is to sleep….and if I had the ability to sleep as long as I need, when I need to, this would be great. Sometimes I do, but also sometimes, I fail, and end up needing to take more medication anyways. If this happens after I’ve already taken a high amount of ibuprofen for the week, I’ll take my nausea med (that oddly helps pain) or Benadryl (rarely) to knock myself out for a later nap in order for my pain to still be low-grade by the time I have to go to sleep (in which case I sometimes still do not nap long, and enter a full on zombie state).
And the weekends? Well, it entirely depends on how social/normal/human I want to be. Generally, because of the amount I have to take to get through the week, I spend weekends trying not to take anything besides my preventative meds. This generally means a lot of 1-2 (sometimes 3) hour quick social activities in between rest/napping. However, if I have a wedding or a birthday or some other social event I just want to fully participate in (which is kind of often) I just say screw it and, again, take a load of Ibuprofen/Tylenol to get me through the night…in which case I spend most of the remainder of the weekend hermit-ting. These days are also when I strive to get some serious exercise in, which is entirely another story.
So, needless to say, it’s COMPLICATED. The amount of sleep I get or number of medications I take or amount of humidity in the air or amount of activity in my day or kind of food I put on my plate are all critical components in figuring out the puzzle. In addition to this, I am constantly uncovering new factors and, on most days, it is much too exhausting to pinpoint exactly what’s at play. With hopes to ditch medication all together and become a lot more active, I still feel I have a long road ahead of me. However, I can say it’s 100000% easier for me to put the pieces together today than it was for me to put them together eight years, or even one year ago, especially in the midst of my suffering. For that reason, I end this post with hope in my heart that, just maybe, this means the future days will continue to bring clarity (and if that’s not the case, Lord, give me grace for those days, too).
Oofda.