The View From Here

Last week, I got sick. Not the kind of chronically sick that I've written about in the past, but a small flu-like infection. This sort of thing isn't an afterthought for a healthy person. Which is how I initially approached the situation- as a healthy person. Because I am now, right? Wronnnng. I've been feeling so great for so long, that I had totally forgotten that the body of a person with an autoimmune disease can take much longer to heal than one without. This isn't to say that every little cold would turn into a three-month infection- I don't want to scare any sickies here- but prolonged fighting for those of us with chronic illnesses isn't uncommon at all. 

I took some doses of Sudafed and drank copious amounts of juice, but when things didn't get better in a hurry I, for the life of me, couldn't understand why.

I guess I've been busy since I went into Crohn's remission last July. I started school this year. I have multiple jobs now, and still do freelance design. I see friends often and hang out with my dog in the park. This is the year I turn 30, and I want to cram in so much of what I simply couldn't in the last few. It seems though, that I'm always running from one thing to the next. When you've got the kind of disease that comes and goes without warning, you take advantage of your healthier time as best you can. You just do. Unfortunately, attempting to make up for the moments you may have lost could turn into your becoming reckless about your body in it's current state and just bring your ass right back to the hospital that you spent countless hours planning your escape from.

I haven't written a Stale Cabbage post in four months. Recognizing a serious health issue is easy when it's your number one job, every single day, for years. When I was sick, I wanted to share my experiences with people who were lonely and scared, who wanted to know more about their sick partners or friends ailing bodies but were too afraid to do it in person. I wanted to create a network of support for sillies who just didn't want to believe that their lives were different. 

And then I got better.

I didn't want to pay any more attention to the thing that stole my life. But as I sit here again, laughing and crying, feeling the pull back to what my situation really is- uncertain, enraging, impossible to map out- I feel it's only necessary to keep myself from turning it away. There's a constant haunting in me to keep in mind that at any moment, I could lose everything all over again. Balancing that fear along with the idea that experience, responsibility for myself that not everyone can understand, and the happiness that brings will lead to healing, is exhausting, and excruciating. Because I'll never really know how long I have until it's time to put the armor back on. 

My reasons for going into detail about how difficult this part is are the same as they've been for every other post I've given. If you are trying to balance a normal life with the fear and actual loathing of a chronic illness, I applaud you. Your fearlessness in continuing to live with each heavy thought is brilliant. Remission is a wonderful, and absolutely beautiful thing. But it is also a heart-wrenching and brutal part of our diseases. Please remember to breathe. Remember to stop beating yourself up about what you can't do yet, and start raising your glass for the things you can [Even when that glass is fulla Pedialyte].Take your time, knowing with full faith that you'll not only be able to regain your self when the storm is over, but you'll become something truly unstoppable in being mindful of the beast you now know. Because your time isn't limited- it's just on a different kind of clock.

So sit the fuck down and relax. You've earned it.

When Recovery is a Bad Word

You know that last post I wrote about refraining from apologies? I suppose it's not so easy to skirt feelings of guilt for being sick for an extended period of time, after all. Keep finding reasons to praise yourself for your most healing moments though, even when you feel you're defending them.

There are always those around you who assume that because you announce your experiences with online friends, that the inside scoop is shared. That your "whole truth" is exposed.

It isn't. Sometimes, in extreme cases- if you're VERY good with a camera- you may even be able to pass these tougher times on as lovely, when they hurt more than the holes in your colon. 

I believe that during two periods in the cycle that is a flare of a chronic illness, you learn who the closest ones to you really are. This isn't to say that people who aren't wiping your ass don't care-- they just may not have the capacity to understand just how many times [or why] you can't stop shitting* your pants. Here are some pointers for those who are recovering from long-term illness and can't stop wondering when they'll feel normal again in all kinds relationships, and how to enjoy getting there.

*Shit being every tiny emotional, financial, spiritual, crisis, among too many others to list here.

Even SPECIALISTS struggle with this. Stumbling upon a strong community of sick or healing people is one of the most valuable things that can come about in the life of someone with a chronic illness.

Finding solid friends with fiercely relentless appetites for understanding can safe your life. Have you had eyes rolled at you, been hurt by it, and then realized that the eye-roller hadn't had more than a ten minute conversation with you in the last year? Me too. This is one of those pieces of advice that I'll highlight, italicize, AND place in bold: Don't apologize for doing things that make you happy after spending ANY amount of time thinking you were dying. 

DO be honest with the people you've let in about what's important to you, and try your best to vocalize the confusion you're feeling about countless lost opportunities, about spacing out on important things like meetings or social do's & don't's, or how to go about managing things that you haven't in a very long time... like money or time management. These are things that most people don't have to think about twice in their day-to-day routine. 
It's very okay that you do. 

Work.
Ugh, am I right? Some sickies with full-time jobs struggle with absences and tardiness pretty regularly. If you've gotten involved with the type of employer that doesn't listen to your needs, get your booty to your local SSA office as fast as you can, and make an appointment with a representative to talk about your rights as a sick person. 

Romantic Relationships.
I'm still working this one out. Let's dog ear this part, shall we? Just be as honest as possible, and go to therapy while you're sick so you don't fuck it up any worse than your sickness will. Your partner might not be able to handle things, and leave.

Friendships.
Ooh, you could make a bestie with a family member who's got the same illness you do, that's worked out pretty wonderfully for me. And where would you be able to find someone like that?? In your disease support community!! <3 This next part is going to sting, and I've gone here before if you've ever read any previous posts, but: It is probable that you will lose a large number of people close to you when you get sick. Think of it this way- if a pal became VERY involved with training for say... a marathon, and you just couldn't grasp what was so special about missing out on parties, ditching regular nights out with the gang, or waking up at the butt-crack of dawn to train for something [they felt] they neeeeeeded to, would you be right there with them in the snow? No. So don't be hurt by your chums not jumping on board with your mandatory marathon. 

I'm tired. I think this post is done.
[Because I'm late now. I can't manage my time well. Read up on what else medical PTSD will keep you foggy about- and don't apologize for needing to]. #sorrynotsorry.