With Chiari, it’s not uncommon to have flairs in my condition, which can last anywhere from minutes, to hours, to days, or even months. In essence, I can have anywhere from a jab of pain, to being laid up for months, in such pain that I’m incapable of caring for myself, or my child.
This can mean anything from the simplest of self-care tasks, like needing help in the bathroom, to having a “good” moment, and being able to shower alone; but then, moments later, having to have help getting dressed. This is the ugly truth of a flair. And, I’m in one right now.
I’ve been in bed for five days. Five days. Imagine not getting out of your bed, except to go to the bathroom, for five solid days. Not because you’ve got the flu, or because you are feeling lazy, but because you are in too much pain to actually move. Imagine not being able to roll over from the side you have chosen, because it hurts too much to move, even though your hip, leg, ankle, foot, and arm have fallen asleep. This is what it’s like to be in flair.
Five days isn’t my “record,” not by any stretch. But, every time I’m in a flair, I always think, what are things that I “learn” during these times that other people might not really think of? In moments of “up,” the first thing I always do, is write (forgive some typos, if present, this time. Too sick to proofread!). This time, here’s what I’ve been thinking of:
Groups are Full of JERKS
I’ve said this before about some of these support groups. But, when you can’t move, you lay there with your phone in front of your face a lot, and you read. You know what else you do, you beg your body not to do the one thing you want it to do, give up and die when you close your eyes. I’ve not actively intended to harm myself, but I’d be lying if I didn’t hope, in my darkest moments, that my body would quit, so I didn’t have to fight the next day
So, when you read a post that says pretty much what you are thinking, from a suicidal woman, begging for support, and the first thing you read is someone telling that poor woman that her thoughts are “selfish and stupid,” you are shocked at the ignorance of suffering and true pain. If you’ve got nothing supportive to say to people in pain, and you have these thoughts (and ridiculous, privileged opinions on suicide), say nothing. Please. You have no idea who you are talking to, and what state they are truly in.
You have to have a good support system
My husband has been bustling around like a busy bee for the last five days. I’ve barely seen him, between homework, getting the boy ready for school, doing the full kid routine, on top of his own work. But, I’ve not prepared a single item of food or drink for myself. He’s helped me to the bathroom to brush my teeth, helped me to use the restroom, everything.
And, we’ve got neighbors that have essentially whisked my boy away. I’ve not even seen him. This is simultaneously heartbreaking and heartwarming. I’ve been asleep so much that, I just pay attention to texts that they’ve got him, and I don’t worry one bit. I know he’s safe and having fun. What perfect bliss for him, and stress-free recovery for me.
The Mailbox Might as Well be in Japan
My dad asked me if I’d received a package yesterday. Our mailbox is at the end of the driveway. I can’t walk any further than the bathroom, which is IN our bedroom. I tried to walk down the hallway, but couldn’t make it to the kitchen. There’s no way I could make it to the driveway and back.
When you watch your body fail you like that, and you think later that night about all the other failures, that this one stacked upon, it occurs to you that the mailbox is just one of a thousand little bricks that have built up around you. It’s just one more brick in the wall of things that are stopping you from living a normal life. It’s one more thing that you can’t do. It’s one more thing that you have to “build back up to,” one more failure.
The worst part: if you keep seeing it that way, you’ll never come back. So, you have to pretend that’s not what it is. You have to readjust, and wake up tomorrow, being prepared to face the mailbox, if you can. If you can’t, you have to face it the next day. And, it’s the same with every other little brick failure that has come your way. There are thousands of them. The mailbox, the corner, showering on your own. There are just too many to name. This is what fighting chronic illness looks like.
To come…the biggest “failure” of all: I have consented to use a wheelchair at my son’s Autism Speaks walk on Sunday (if I’m well enough to go). I fought tooth and nail against the “first” use of a wheelchair, because I said it was the ONE thing I’d NEVER do. Well, in order to go, I have no choice. My son begged me to be there. I have to put him before me. That’s the priority. I promise to "update" this one.