The Backstory

(Note: Some of this first half will be redundant if you're a regular reader.) Somewhere in the midst of being cooped up at home sick for weeks on end this spring, something in me clicked. I stopped caring about not being able to do it all. I don't know if it's so much giving in, or self preservation, or just not needing to beat myself up for things I can't change. Maybe it was survival instinct, or maybe it was being forced to accept the reality of my energy and wellness levels. I'm sure a question my counselor asked me a while back got this all circulating in the back of my mind: "What would happen if you didn't do everything that you want, what then?" My answer at the time: "I feel like if I had to give up doing all these things, that I would cease to exist."

I know, ridiculous. And yet, honest. Of course, if my worst fears came true and I was too sick to do most of the things that make up my current life, somehow I'd adapt. But deep down, I feel like I wouldn't be me without these things.

This particular question had been posed to me during the aftermath flareup of my February evil stomach bug. Prior to getting the flu with cough of doom in April (I know I'm not the only unfortunate soul who got this awful thing and was really ill) and subsequently experiencing two weeks of being more debilitated than I think I'd ever been before. Altogether I lost 8 lbs in 3 months (which was roughly 9% of my bodyweight). This question was posed in the context of going to DrupalCon San Francisco at the end of April, which I was wondering if I should go to at all, even before the cough of doom hit.

After having this question posed to me, I shelved it in the back of my brain, refusing to *really* answer it. As soon as I was starting to feel better, I decided on a whim to fly down to Portland for a long weekend to visit with my cousin, and some other friends there. By the time I woke up the day after arriving, I was feeling really awful, but I chalked it up to a bad sleep at first... By the next day, I was feeling incredibly horrible, and was in no state to fly, but it seemed there wasn't really a way out of it (luckily it was a short flight back home). By the time my uncle had picked me up at the airport and gotten me home, my throat was killing me and I was getting a fever.

And thus commenced the worst flu and cough I think I've ever had. My mom actually ended up coming out and staying with me; I was literally in bed for a solid 10 days, and spent another 5 or so not going anywhere beyond the corner store. My mom went back to Saskatchewan at about that 10 day mark. The 2 week in mark was when I was supposed to go down to SF a few days early, to sight see then go to the Core Dev Summit. At this point I was just starting to feel better, but was still really not well, so I postponed my ticket down a few extra days (with the help of a fellow Drupalcon-goer), as I'd had no voice for about 5 days by then and couldn't even call the airline myself). 

The day before my new departure day, I still didn't feel very well, but I packed anyway. I decided I'd call it in the morning. And to my surprise, I woke up the next day, finally feeling a bit better. So I decided to go for it, I figured I'd go to the airport, and if I still felt ok, I'd check in and get on a plane. And if once I got to SF I felt ok enough, *then* I'd deal with going to the actual conference. One step at a time, even if all I did was rest for a week at the house that I'd rented for a group of us, that'd still be better than not going at all.

With this one step at a time, "anything is enough" mentality, I made my way through the week. I slept in every day, packed some food, and then went to the conference for a few hours. Then I'd come home, nap, have dinner, and hang out at the house with whoever was around. I didn't do a single full day. I didn't go out any of the evenings. I took cabs the entire week instead of riding the streetcar. I didn't really see much of the city, other than the two blocks around the house, and wherever the cabs went.

But did I enjoy myself? Yes.

Did I make myself sicker by going? No.

By the time I left, I felt a ton better than when I'd first gotten there. Despite really only attending a tiny amount of the conference, I managed to catch up with everyone I wanted to at least once. I managed to get to a bit of the Docs sprint and a few BOFs. I got to record a Drupal Voices podcast! I had tons of fun hanging out with my housemates. Sure there were a few moments where I was pretty run down. But overall, it was a positive experience, I didn't feel any worse at the end of it, and I was thrilled I had been able to attend at all, all things considered.

Not doing all of it as intensively as I'd planned to didn't really take as much away from the experience as I'd imagined it would. And I don't think anyone judged me for not being able to do it all. And I think for once, I finally didn't judge myself either.

Despite being nothing like what I had planned, it was all I could have hoped.

Your outlook on life defines how you react to those life changing moments.
Please Note: Those reactions can define your life.

What Has Changed

Maybe the same thing will work for life.

Maybe even though it's nothing like what I had planned, it will be all I could have hoped.

A small epiphany... now only to keep applying the lesson. This could mean a real breakthrough for managing traveling less exhaustingly, for not burning myself out with work, or by doing too many things on weekends. Living at a more sustainable pace. Something with which the "Spoon Overcouncil" would be more aligned. Accepting the help when it's offered, and actually believing that I'm not a burden to those who've offered it. That's something new for me too, asking for help. I was forced to do it to get through this spring. At first it made me feel as awful, burdening, and guilty as it always had. But then, I realized what I didn't want to admit: I *needed* help. And the crazier part, people were offering it because they *wanted* to, and helping me when I needed it was not the huge burden that I'd made it out to be.

On the other hand, people continue to question my choices to do *anything* that's taxing on my body. Entertaining the idea that since May of last year, I really do feel crappy most of the time. And that I always feel crappy when I travel. Some people (nice people, who are just wanting the best for me, admittedly) think that hence I shouldn't do such things. But what would that change? 

If I thought putting my life on hold could help make me better, I'd do it in a heartbeat. But the reality is that there's nothing I can do that will miraculously make me better. Despite feeling like something has been really off balance since last June, no doctor or specialist I've seen has been able to find anything other than my long standing chronic conditions going on. 

To finally have had a very good doctor who is up to date on chronic inflammatory/auto-immune diseases say to me that my system is really oversensitive and out of control, is an odd comfort. To have him explain that having IBS and this kind of chronic illness *does* relate to having flareups of Fibromyalgia and fatigue (which was something that I had been told before, but then had a differing second opinion on) has been vindicating. This doesn't mean that he can necessarily help; though he says he's going to try, I have learned not to have any expectations in this respect.

But all of this, what it changed in me is it gave me the ability to accept what is. That I am going to be tired a lot, that I am going to feel sick a lot, and most of all, that it doesn't mean I have to stop living my life. I don't need to fight it anymore, that's not actually helping anything. I don't need to feel guilty for not doing things, or feel like I'm not trying hard enough. Something about being so sick, and then actually being fairly incapacitated for a couple weeks made this all ok.

If anything, I'm starting to realize what an amazing thing it is that I do as much as I do, when I am contending with levels of wellness that would keep most people at home. I've gotten used to living like this, but it's NOT easy. It's a struggle. And that's why I don't need to make it any harder on myself. But I also am not going to give up. If I feel just like this every day for the rest of my life, I'm not going to let it stop me from enjoying the things I do decide to use my spoons on.

The small victories have started meaning more. The losses have started meaning less.  Frustrating and sad, yes. Unfair and painful, absolutely.  But when the options are slow or not at all, slow doesn't really seem so bad.