Finding balance with chronic illness

Is it time for one of Lyssa’s semiannual life posts? I guess so! I blogged previously about what set off the major symptom flare I went through from late 2020 through 2021. And in this post I alluded to the fact that that self-analysis helped me identify what sets major symptom flares off. Basically, it’s pretty much the simple formula of too much work and/or too much stress. It’s something that I kind of already knew, the problem is that I had not correctly quantified how much is too much. I was consistently overestimating what a balanced workload looked like for me, and even when I would adjust and decrease that workload, I was still overestimating and not decreasing enough.

So, to give you an example: some of my chronic illnesses (specifically fibromyalgia and POTS) can show improvement with exercise. However, others (specifically CFS/ME) can be triggered if you push too hard with the exercise. My doctor recommended swimming as a low-impact exercise that can be helpful for fibromyalgia and POTS, but without the option of a trainer who was versed with my chronic illnesses (there wasn’t one available in my area), I had to do trial-and-error for how much to exercise. So what happened was that I consistently overestimated. My desire was to jump in the pool and start swimming around like a fish, because I have always loved swimming and that’s what I used to do when I was a kid. But by just doing what I wanted to do, I didn’t receive any benefit from the exercise. Instead, I set off a major flare that aggravated my symptoms.

It took two separate incidences of overexertion leading to a crash leading to needing to take a several-month-break before I finally found a program that worked. I combined advice from a CFS/ME blog with an exercise program for seniors with arthritis. That meant swallowing my pride, because this isn’t what I want to be doing when I’m only in my thirties. But I finally had to realize that if I ever want to get any better, this is how it’s going to have to be. Things can’t be the way I want. They’re just going to be the way they are.

Yeah, starting out at five minutes a day twice a week was not what I wanted. The first time I went, when I got out another lady in the pool apologized because thought she’d crowded me out or somehow annoyed me, because I’d been there for such a short amount of time. And yeah, that’s kind of embarrassing. But I told her I was chronically ill and that I had to start out in tiny increments, and she gave me a big thumbs up and told me, “Good for you for trying.”

And you know what? Even though those tiny increments seemed pathetic, they worked. I felt amazingly better after I was done, every single time. The first time, my leg muscles ached since it’d been so long since I’d exercised, but it was just the normal ache you get, like when you ride your bike or something. And I didn’t crash after. I didn’t get a pain flare. I didn’t get a fatigue flare. That mythical “I feel a lot better” that exercise was supposed to provide? It did! I couldn’t do normal-person amounts. I couldn’t do the amount I wanted to. But even though five minutes sounds like nothing, it was the right amount for me. I still don’t know how much I’ll be able to build up to, but any benefit at all is worth it.

So how does that apply to writing? As with exercise, I have to limit myself to baby amounts. And the amount that I’ve found works for me is writing no more than twice a week, and not two days in a row. It means not writing more than around a thousand words at a time. That means my word count per week is not going to be more than 2000.

This is something I’m struggling with mentally. Like with my desire to jump in the pool and just swim, I don’t want to write such small amounts. I want to write more than that.

And I’m going to be honest with you all, and please don’t take this the wrong way. Yes, of course I’m frustrated with this tiny amount because I know there are people who are eagerly awaiting the last book, and I feel guilty—so, so guilty—for making you wait so long. And I am very frustrated with myself knowing that I started this series in 2015 and that teens who read the book in 2015 are not teens anymore and a lot of them probably aren’t going to be invested in the series anymore and won’t read the ending. And I’m very frustrated with myself knowing I’ve disappointed people.

But at this point, even more than my frustration on behalf of my readers… I am so sick of this mother freaking book you do not understand. The thought that I have been working on this book for this long, and it’s still not done, and I can’t even guarantee it’s going to be done this year?? The thought that I am going to be living through this hell for another twelve months, or more? It makes me want to scream.

So the past few weeks, I started letting myself think some dangerous thoughts. Those thoughts were: “I know I need to pace myself until I feel better, but I can’t pace myself if I want to finish this book. My sister’s wedding is in May, and I don’t want this thing hanging over my head at her wedding. I know what I need to do in order to feel better, but I’ll finish this book first. I’ll just grind on it, get it finished, and then from now on I’ll be good.”

And I kept hearing this voice in my head saying that I needed to not do this. That I needed to do what I knew would be the healthy pace for me through the rest of this book, not after. Even if that means it’s not done by my sister’s wedding. Even if that means it’s not done this year. I have to learn to enjoy my life even with something “hanging over my head.” That I need to stop seeing things as “hanging over my head,” and just work at a healthy pace for what I know works for my body, and learn to sit with the discomfort of unfinished tasks until it stops being uncomfortable.

And did I listen to that voice? Lmao. Of course not. So over the last two weeks, my butt has been grinding like I used to in the old days.

These messages I’ve sent a few of my friends this week will give you a glimpse at my state of mind after three days straight of writing around 3000 words per day.

Text message: "Writing is hell. Don't f***ing do it. It's a trap. It's not fun. I f***ing hate it. I wish I'd never done it. I regret every choice I've ever made in my life. This book is never going to be finished, this series is never going to be finished, I am never going to be free"Text message: "I keep trying to really chip away at it because I want it done this year but I know because it's so long that it's going to need a lengthy editing process and [my sister]'s wedding is in May and I know it's going to kill me. But I just can't manage more than maybe 2000 a week and I am really exhausted now from having written yesterday."Text message: "So I don't think it's going to be this year and the thought of that just makes me want to jump out a window. Like, I want it gone. I don't want this to be my life for TWO more years, I don't even want this to be my life for ONE more year."Text message: "I can't see myself ever wanting to write again after this. I'm sure once it's done and I take a break I will feel differently, but this is just awful. My mom was like 'let's talk it out' and I told her the whole rest of the plot and she said it all sounded really good, made sense, followed logically, etc, but I am physically exhausted after that, and knowing I have to *write* all of it... And I've got the fatigue crankies where you just cry for no other reason than exhaustion."If that isn’t a wakeup call.

So after I cried out my fatigue crankies, I decided to take a break and do some knitting while listening to a podcast I’d been meaning to listen to for a while. It was an interview with Mandy Meehan, a YouTuber who also lives with chronic illness. And one thing she said? “Discipline is doing the things we know we need to do even if we don’t feel like it.” In her case, this meant taking care of herself, pacing herself, resting, and not overcommitting herself. Saying no to busyness. Knowing her limits and sticking to them, even if she didn’t feel like it.

Ah, yes. The things I knew already, I just didn’t feel like doing.

It’s a slow, frustrating process. But I’m getting there. I can at least say that I know my limits now. It’s just a matter of sticking to them.

One World is coming, guys, I promise. It really is coming. I haven’t forgotten you. And I won’t quit writing, even if I threaten to when I’m hysterical with exhaustion. 🤣

Leave a comment

Your email address will not be published. Required fields are marked *

Prev Post Next Post