I’ve been diagnosed with Achalasia since 2013, but I had been dealing with chronic pain and fatigue long before that. It’s been a rocky path, and though I don’t always want to admit it, it has shaped my whole life.
In 2017, after a hernia repair surgery, I developed severe nerve pain, which I still struggle with on a daily basis and with little to no relief. When this new pain started to flare, I didn’t know how to deal. I’d fought so hard to be where I was and suddenly I was crippled in my everyday life. It seemed so impossible to face because for the briefest of moments I had felt almost normal.
On a particularly bad day, after a doctor told me I hadn’t been in pain long enough for him to treat me, I wrote this. I struggled for weeks trying to perfect the words and then I tried recording it. I always had the intention to share it, but being honest on this level still frightens me.
So, here it is –
This video was recorded over two years ago, I attempted to record it with better quality video, but it didn’t translate the original did, so I apologize for the quality and hope you’ll take a moment to listen.
“When a flare hatches, it doesn’t just take your body down, it takes everything down. It is sudden because for a while you were okay. Maybe not good, but you felt okay. You were going out at night, working during the day, and you seemed to be going at a pace that matched those you were surrounded by. Of course, there was still the fatigue. You still knew that you were sick, but it didn’t show.
A flare is a flare—it comes out of nowhere with little warning. It’s a week where you’re too exhausted after work to do more than eat and it swells into a weekend demanding that you rest, sleep, and cancel plans. It’s how even after the rest you aren’t recovered. The other symptoms come back. You lose your appetite. You can’t eat. Your throat starts to hurt and the migraines come back.
What’s worse is that you feel loss. You had been okay; you’d been surviving. And now this? You’re starting to question if you can survive, if maybe you shouldn’t have taken these chances, if maybe you should have just stayed safe inside. Was this the smartest thing to do? You knew. You always knew that you were still sick.
It’s a flare. It’s a week, a month, maybe even a year. It isn’t all of the time. You remind yourself. You are strong, but maybe just not in the way that everyone else is. You won’t be able to eat this week, but you will later. You remember that the memory of pain fades. Because while it’s worse than you remember, you remember that you forget. That eventually the way this sickness twists you will be recalled a little less sharp. There’s a beauty in that—and a beast.
You could give up. That sounds easy. Be still and do nothing at all, stop trying to live. It is tempting to just stop fighting. You don’t. You won’t. There is still so much you have left to do. So much you want to do. You may be sick, but the sickness isn’t you. You’ll get along. You’ll take it slow and then push too hard and then you’ll fall. But, as slow as it might be, you’ll get up. The memory of pain fades and that you aren’t so sad about today.”
| MishyMe | 