As I was in the middle of a nasty pain spike, I started thinking about what it feels like to have New Daily Persistent Headache (NDPH). I was using my Ketamine spray, which after a few sprays spaced close together can make me extra introspective, and that’s when this metaphor hit me.
When going through my day, I find that my pain levels will vary, sometimes a little and sometimes off the charts. I’ll get up in the morning and be at my baseline, which now is a 4, and start the day. So I’m ready to cruise and I head to the kitchen for breakfast. But here comes my first challenge: the sun. I have lots of windows in my kitchen and as soon as I get there, BAM, I have to downshift and slow things down. I’ve just been whacked with a bright light trigger that has me running for my shades. Luckily, I manage to handle this trigger before it causes a pain spike. I’m now back in cruise mode, continuing to drive in 4th gear and minding my own business.
This is how I approach my days: staying positive and moving forward. As we all know, best laid plans are sometimes just that, and the next roadblock is right around the corner. It can be weather, light, noise, smells, temperature, pressure, concentrating too hard at work, you name it. And that’s when I have to downshift again and slow myself down. I might even have to put it in park to give myself some down time to rest and recover before I can get back on the ‘road’ and start cruising again.
Unfortunately, this scenario can happen multiple times a day. Some of us have rescue meds that are effective and some of us do not. But the one gear I will not use is reverse. Going backwards is not an option. Yes, I do understand that we may feel that way at times, but the only direction should still always be forward and if you can manage to get out of 1st gear and into 2nd, 3rd or 4th, you’re winning.
We all have different experiences with NDPH and how we deal with it. Are there days we can’t get on the road? Absolutely. But you can get back up and cruise again. Downshifting is not a negative, it’s called self-care. I encourage all of us to find how we can cruise and give ourselves grace whenever we need to downshift so we can keep moving forward.
What metaphors do you use to think and communicate about your NDPH? Please send them to info@NDPHaware.org and we can continue this conversation.