Health

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.

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.

Before we get started, here's some new LCD Soundsystem for your listening enjoyment... (Awesome, SteveK, your tip about just shrinking the height on the YouTube player works!!!)

Much of my thoughts go like an agile retrospective these days... project management is permeating my thinking patterns.

Good

• I made it to DrupalCon San Francisco, and despite being sick and going late, had a great time, and rested lots so I got better and not sicker while I was there.
• Over the flu. After shaking the death cough, my lungs actually feeling better than they have in over a year and a half. My voice is back which makes me very happy, except my high singing range, but I'm sure that will return with a little more time.
• Work is busy. I feel like I am being effective, and like my hard work over the last year and a half is paying off making things run smoothly, having everyone feel self-actualized, having happy clients, and getting to do the kind of work we enjoy.
• I feel more appreciated and at peace in various aspects of my life than I have in a long time. (Ever?)
• Eating lots of good food; I have gained back about 2.5 of the 8.5 pounds I lost since February. Might not seem like much but I was worried it would be even harder to gain anything back.
• Got a crapload of blood tests done last weekend, and they all came back normal. I was getting lots of bruising, but I can safely assume now that it is just from being a bit malnutritioned, and that some steady Vit C intake will fix me up.
• Also, I went back to the old walk-in clinic I used to go to before I started hunting for a GP...Holy I forgot how much better a couple of the docs there are. 
• I've mostly been sleeping a lot better lately, and sleeping/waking earlier than is normal for me. It's felt very odd, but in a good way. I doubt it will last much longer, but it's been nice.
• I have been feeling more relaxed in general. I like this. I'm pretty sure the people around me like it too.
• I have more spoons lately.
• I've been doing a better job at keeping a balance, taking care of myself, asking for help, not being mad at myself for not feeling well.
• Oh, and my Drupal Voices podcast that was recorded at the conference was posted this week!

Bad

• My stomach is still generally feeling awful, more awful than normal, as has been the case since last summer. (Luckily looks like I'm gonna get a referral to a new, hopefully more helpful, GI doc when walk-in doc is back from vacation.)
• My apartment is getting more construction. It makes me crazy. I am househunting. I don't find moving fun.
• My back and neck have been fucking killing me lately. Too much computer and sickness, not enough yoga and off-computer time.
• I ate moldy soy yogurt today. No biggie, just gross.
• I don't have much Drupal Docs mojo right now.
• I really, really miss several beloved friends who are not here.
• Not sure if this is really a "bad" but I'm not sure going to DrupalCon Copenhagen is really going to be the best thing for me right now.

Do differently next time

• Get annual flu shot. It's just not worth getting the flu (I've had it 4 times in 3 years since moving downtown!)
• Not stand for useless and/or rude doctors.
• Not eat suspicious soy yogurt. (I have made this mistake more than once now.)
• Do more yoga! Do more yoga! Do more yoga! When will I learn?

Yesterday, I was here:

It was lovely. LOVELY. That wasn't the only reason it was a good day though. It was the first day in about 6 weeks that I felt somewhat "normal" (ie. not so exhausted I can't really go out and do anything). I'm not sure exactly what did it, but after a giant sleep and a little dietary tinkering toward the end of the week, all of a sudden, something shifted.

I am still feeling very tentative about feeling better, and spent the day today at home puttering around. Did laundry, made some soup broth (my first time!), talked to my folks on the phone, talked to some friends on the phone, and relaxed. I know I need to keep taking it somewhat easy, and (now that I've admitted defeat) will happily do so if it means continuing to feel better.

I'm hoping the change to spring is companion to a larger shift for me, into a more peaceful, healthier feeling space that I've missed so much. Huh, just writing that I realized it really is spring, yesterday was the spring equinox!

So, here I be. Hoping for more good days than bad this week. Doing my best to just be. And get some semblance of what is important to me back in a more permanent sense. My mom has told me many times that her mom used to say, "act enthusiastic and you'll be enthusiastic!" so will also be focusing on keeping a good mindset, and making small and steady steps towards good.

I'm better than I was a couple weeks ago, but I am not well. Not yet. And the last two weeks, I pushed too hard, and now I'm feeling a bit worse again. It's so hard not to jump back in full on, into life.

I went to counseling this week for the first time in a while, I said I'd been struggling with a lot since getting really sick last month. Mainly, I am terrible about asking for help. And I am terrible at not pushing myself too hard once I start feeling better. I don't want to miss out on things, and I don't want to let people down.

My counselor asked me, so what? What is your greatest fear if you just stopped doing everything, and rested... And in all honesty, the only thing that came to mind, is if I stop doing everything I want and need to do, that I would feel like I don't exist. BAM. Biggest fear in life right there. Scares the bejeezus out of me even thinking about things like that.

But I am so exhausted, after just two weeks (admittedly full-on weeks) back at it. This week, my stomach has been feeling worse again... and last night I started getting a bit of a sore throat, so I think I am fighting off this stupid cold everyone has on top of it. I just want so much to feel better. Moo.

O ME! O life!... of the questions of these recurring;
Of the endless trains of the faithless—of cities fill'd with the foolish;
Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?)
Of eyes that vainly crave the light—of the objects mean—of the struggle ever renew'd;
Of the poor results of all—of the plodding and sordid crowds I see around me;
Of the empty and useless years of the rest—with the rest me intertwined;
The question, O me! so sad, recurring—What good amid these, O me, O life?

Answer.

That you are here—that life exists, and identity;
That the powerful play goes on, and you will contribute a verse.

  - Whitman

People ask me all the time why I can't do certain things. People who know me; who've known me for ages. People who mean well.

Why can't I come out to socialize in the evening on a day when I worked at the office?
Why did I drive to work today instead of taking the bus?
Why do I have to work from home most of the time (why is that any different than going to the office)?
Why is travelling so hard?
Why can't I walk all the way across downtown?
Why can't I stay up late one night on occasion?
Why....?

I've never found a way to explain this to people so it makes sense to them. Other than saying, I don't have as much energy as a "normal" person. My counselor has asked me a few times why I think people just don't get that, and the only thing I can think of, is that it's because I seem so cheery, I don't look like I feel terrible all the time. But that is just because when I feel terrible, I stay home. And I try to keep a good attitude, regardless. But it's not representative of what I live with.

But I just read something Zak sent me - a simple analogy using toothpicks, and that's it. THAT'S EXACTLY IT. I looked up the "Spoon Theory" that's mentioned at the end, and it's a longer, more detailed version of the same concept, and if you've ever asked me any of those questions, or want to understand what I live with, please do read this (start at the heading "But you don't look sick" and update: no I don't have MS, it's just a way to look at chronic illness). It's a bit long, but it's the best description I've ever read. That is exactly what my life is like.

And right now, I have about 2 spoons (or toothpicks) per day. I can do dishes, and make food. And that's it. I can go out for coffee with a friend, and do a little work from home. But that's it. If I do laundry, that uses up both of them for the day. Same for grocery shopping. Going to the office uses 6 if I take the bus. Yes, 6. 2 for being at work, 2 for taking the bus, 2 for packing food and unpacking/cleaning after. 1 day at the office means I am exhausted for 3 days.

I have been running a deficit of spoons since I got sick last month. And a weekend isn't long enough to get back in the black. That was the sickest I think I've ever been. It was scary. The friends who were really keeping tabs on me and who knew how bad it was were scared for me. And I want to be well again so much that I've been acting like if I just do normal things, normal life will return. But that's not working. I really need to scale it back a TON.

And I don't know what that looks like. But I know I need to figure it out damn fast, or else this is going to drag on and I will be forced to face my fears in a not so nice way. I am so afraid of having to face what is really at stake here.

Years ago when I was doing my undergrad at SFU, one of the doctors at the walk-in clinic there recommended a book to me called When the Body Says No. I went out and bought this book, and after flipping through it felt really offended at the recommendation. The book is about the physiological effects of stress, mainly in relation to how undealt with stress can result in chronic illnesses, auto-immune diseases, cancer, etc. I though the doctor was implying that I wasn't handling stress well, and it was making me sick. And whatever elements of truth that may have had, I found it incredibly offensive, largely because she didn't propose any solutions as far as what could help decrease the severity of my chronic health problems. So I put the book away on my shelf, and there it has sat for the past several years...yet surviving many book culls (for the sake of bookshelf sustainability).

This week, though not entirely recovered from the after effects of the flu I got a month ago, for all intents and purposes, I returned to normal life. Work, going into the office a couple days, going out to social/work events three nights in a row. I was feeling half decent at the start of the week, and I knew I was pushing it too hard the last few days. I knew better, especially after just getting back to things, but I just wasn't willing to sit out any of the stuff that was going on. So I just accepted that I would probably spend the weekend resting, and pushed through.

I had so much adrenaline coarsing through me by midweek that between that and the worst hayfever I've had in years (thanks to the early spring alder pollen), I was having trouble sleeping most of the week, and woke up this morning (at 7am thanks to the intense sunbeams) with a stomach ache and feelling pretty shaky, a breakout on my chin and and my gums all tender. That's the ugly truth of it. It's painfully obvious when I've overdone it. No question about it, my body doesn't mess around, it's just like THAT'S TOO MUCH, and I'm out for the count. And then for whatever reason, I remembered the book. When the body says no, indeed.

I think I might try and read it finally and see if there's anything useful. I feel like I have such an adversarial relationship with my body a lot of the time... But on the other hand, fighting it certainly doesn't help. It's obvious that I make choices that hinder rather than help the situation. But I've always felt like if I just rested as much as I needed to, I wouldn't go out and do much of what makes me happy. I still do think there's a more effective middle ground, but I'm not willing to put my physical health as the first priority every time. I was forced to do that last month, because I got so sick from the damage from the virus I caught that I had no other choice, it had to be done. But the cost: no social life, being stuck in my apartment, not working as much, hardly doing any Drupalling... that makes me miserable.

Anyway, obviously regardless of this being something I've lived with for almost my whole life, I haven't found the right balance yet...if that even exists. And I have never found anyone in either the traditional or alternative medicine worlds who's been willing and, more importantly, able to help me. I've run the gamut of specialists, various GP's, naturopaths, and a fleeting attempt with Chinese Medicine, and they never know what to do with me. Traditional/Western doctors don't even try. I've never found one who dared persist and try and help me with managing my chronic illness and other associated health problems. They just shrug and say things like, "I don't know what to do". And that's sad and unfair, but it's reality.

The alternative practitioners are well meaning, but have generally made me much sicker than usual because they can't really understand how sensitive my body is. After spending so much time and energy trying to get help and make progress, inevitably, the futility sets in and I resign myself to being the only person who can do anything to make the situation manageable.

So I just...manage.

I go to counseling when it's too hard for my brain. I go to the massage therapist when it's too much for my body. I talk to my bestest friends and family when it's too much for my heart. These people are the only ones who've helped me in a significant way, not because they've made me less sick, but because they help me cope. And that's all the help I've really had.

Reduce stress. Sleep. Eat. Do yoga. Write. Talk. Don't try and do this alone. Cope. Live.

So about that sick. I said Tuesday that things were pretty bad, but Wednesday they got worse. I ended up at the doctor's again, as it had gotten so bad that I was feeling too lightheaded to really do anything. That was the most scared I've been for my health in as long as I can remember. I got a really good doctor (surprisingly) at the walk in clinic Wednesday evening and he figured that my intestines had become pretty inflamed as a result of the virus I'd had, and that's why I wasn't really digesting anything properly anymore, and also why I had become so tired/weak.

He prescribed me a medication, Lomotil (which is actually kind of interesting, it's a opiate based narcotic...ya crazy), and 3 days of a diet of potatoes, rice, and chicken broth. The medication made a big difference, as soon as it kicked in, my stomach cramps really eased off, and things slowed down. And as a bonus (at least I think I'd call it a bonus), the stuff seemed to make me slightly buzzed. Being someone who's never been fond of any substances (alcohol, pot, etc.) it's been a strange and interesting experience. I imagine it's what pot does for most people (relaxed and a little out-of-it). That was more significant the first couple days, and I seem to have gotten used to it now.

So that definitely improved how my stomach was doing, but my energy is still the pits. I was feeling a bit better yesterday, but today I felt like passing out when I went grocery shopping (only two blocks away) and have been shaky most of the day.

I'm really glad I had the sense (or moreso, the sense talked into me) not to try and go to Portland today. As much as it would have been lovely to see people, and to stay with nice gals who would have taken good care of me, I was definitely not up for traveling. I'm not sure why I felt worse today, but I'm hoping having eaten a bit of protein finally today now that I'm off the mush diet, and a few more calories overall will help, and tomorrow I'll be a little better again.

This might be the worst I've been for an extended time, it's about a month since I picked up the virus initially, and though I had a few days in the middle where I started feeling better, it's been slow as heck recovering from the aftereffects. I'm really thankful to the friends who have helped me out and come by to visit; being stuck at home has gotten pretty old. Oh how I long for my usual icky feelings where I still have enough energy to do fun things like go to work and get groceries. Sigh. (Yes, I am wallowing a bit. Whaccha gonna do about it?)

At least I got some time to work on my blogs yesterday when I was feeling up for it, and hopefully will feel well enough the next few days at least to work from home a bit. It's hard taking real sick days when you actually like your job, especially if you're a project manager, and want to be on top of what's going on all the time.

But as long as I keep slowly getting back to "normal" I'll just be patient and go with it, this was way too scary to push things. It's been a serious reality check of how bad things can get when you have a pre-existing condition that gets exacerbated by a virus attacking the same part of your system (which admittedly was already a bit under stress when I got the bug). I suspect it's going to be a little while before I really feel like myself again, but I am just trying to stay positive and have faith that my body can and will heal as long a I keep giving it what it needs.

And I can't say it enough, how thankful I am for the support I've been given. I am usually incredibly stubborn about my independence, but at this point, I will take all the help and good vibes anyone wants to give me.

And now, after all that seriousness, from the Hot 1" Action show, here's my BUTTONS!!!

(Blue bird w/"ihaveacrushonyou"; His Holiness making devil horns; heart in a toilet, green fox, blue fish, rooster, boy with head cut off, alien/bug by Malcolm; heart collage, alient guy, Johnny Cash, "spread eagle" in a jar, and last but certainly not least crows by Rachael!)