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.

If I May

Since it's gotten nicer and nicer outside, and the sun has given me more happiness than I've had in quite some time, I'm in a super excited and silly place. There are so many people wearing flip flops and dresses in the city, so many smiling couples and pups out with families in this awesome weather. It seems as though the fresh breeze is carrying bits of happy around and letting it fall on us just when we each really need it. And it's about damn time.

After the bombing last month during our beloved Boston Marathon, there's been a stillness in the city. People have been unsure of how relaxed to let themselves become. Though we've given a sigh of relief after suspects were caught or killed, we still hurt for what happened... and many people question the tragedy. There are tons of unreliable sources spewing what they think we should believe through the sharing of their websites and photographs. It's maddening. I think we deserve some beautiful freaking weather, and a fresh season.

But there is one absolutely terrifying thing about this month.

May is National Irritable Bowel Disease Awareness Month. That's actually wonderful- far from terrifying. But it's the month that I, along with countless others, was initially diagnosed with Crohn's Disease. The change of seasons can wreak havoc on an autoimmune disease, and many people start to flare when the weather gets nicer. It's a crap shoot, but it's our job to try and find things to be happy about everyday. If we don't, we run the risk of getting sick and becoming super miserable. The positive vibes you give yourself are in direct correlation with how good you feel.

If you've got blood running through your veins, you've got the opportunity to make your time on this planet worth something. Even if you're sick. Especially if you're sick.

Make a plan.
Show your teeth.
Grab happiness by the nape of it's neck, and make it your own.

Sometimes even a well-deserved, gorgeous new start is scary. The truth is, people with a lifetime sickness never stop working. Ever. Being on your toes is something that becomes second nature, but can hurt... so we've got to make sure that we're well-rounded in our activity, knowledgeable of our conditions, and willing to sacrifice a lot of things that mean very much to us. At least, for the next few months anyway, we can fight, fight, fight with our toes in the sand and our faces in the sunlight.

You can turn a shitty situation into an opportunity to help others. And to help yourself.
Every moment is what you make it. 

Don't ever let a doctor tell you otherwise.

Mind Full-Ness

Growing into adulthood is a lot harder than I thought it would be. So is deciding just how to use my energy as I do so. There are a shit ton of things in our lives that take a great deal of time and umph, but the key is knowing when to let those situations get you worked up, and when to blow them off the way you would a final exam that you're exempt from after acing the course all semester.
I am imagining that to be a pretty great feeling, but I mostly always blew the course off all semester and wound up cramming for a final that I wasn't at all ready for. 
Getting back to my point, I am studying mindfulness. 


Mindfulness is a concept in Buddhist Meditation that's been applied to psychiatry in Western medicine. It brings a kind of nonelaborative, nonjudgmental, present-centered awareness in which each thought, feeling, or sensation that arises in the attentional field is acknowledged and accepted as it is. [Thanks, Wikipedia.] I have been talking with my therapist lately about keeping my spirits at a stabilized place, higher than they've been during my recent health complications. Having an awareness of what's happening to you without freaking out can actually help you to get through what ails you in a wonderful way. Having mindfulness of problems means understanding them, and moving on to what can be done to better your reaction to those problems. This will allow you to rest a little easier. I'm recognizing what needs to be stressed about, and what really doesn't. And I'm tackling those things one at a time.

I have oodles of help from my number one healer.


What I am finding tough, is having so many things to recognize. I'm full to the brim with worry about my condition. I assume that after being sick for such a long time, any person will start to think that their body will always crap out on them. Crap. Ha. Still, knowing what you feel will help you start to recognize what will change those feelings for the better. So I guess I'll just keep the silly factor up until I can break down the list of worries one by one and tackle them individually. My mind's full- but that doesn't mean that I can't start breaking down the big woes.

Like figuring out what to get my Shaman for the holidays that will make up for all of that incredible bedside manner.


I'm pretty aware of the need to start a job hunt.