Friday, August 24, 2012

Guest Post: Alyssa's Story

Here it is, the blog we've been waiting for (pun intended)! So excited to feature Alyssa, author of Love For Mutant Guts - which is such an awesome name, if we do say so ourselves. Hope you enjoy her post as much as we do!


Most of you are too familiar with waiting. Waiting months to see doctors who show up hours after your appointment time; waiting to see if a new treatment will turn your life around; and most agonizing of all, waiting for the day you can forget about your broken body and just feel normal.

I would like to share some ideas for passing the time and thoughts on my questionable choices because I know how awful waiting can be, and I am willing to bet that some of you have fallen into similar patterns. When you are sick and just waiting to feel better, your family and friends will not understand what you are going through. They just can’t. That is why, dear friends, we must unleash our inner thoughts to strangers who have also felt broken.

Back before a few new conditions arose and I was “just” dealing with severe Crohn’s disease, I had a knack for making good use of waiting time. I did schoolwork and read books in waiting rooms, hospital beds, and even in the bathroom as I waited for my guts to cooperate enough for me to venture out. Nurses and doctors frequently complimented my dedication, but it was all normal for me. I couldn’t move around much, so I figured I might as well read until I got too tired or dopey. My mind thrives on intellectual challenges, but my perfectionism turns my beloved books and schoolwork into stressors. I always felt like I should try to catch up with my extremely intelligent friends, most of whom got consistently better grades while reading more extracurricular books than I ever could. Friends, I can tell you with the utmost confidence that worrying about catching up is a foolish pursuit.

Take life at your own pace. I hate to break it to you, but you can’t catch up. All you can do is make mindful choices to make the most of each day. Sometimes illness makes us feel like life is passing us by. Joint pain and malnutrition may slow us down and make us feel hopelessly different from our healthy peers, misbehaving guts may drive friends away when we frequently cancel plans, but the emotional impact of chronic illness seems to primarily stem from the fear that our suffering will seize complete control over our lives. We may lose a lot of control, but really good friends will understand and adapt to our limitations, and we can change the course of our lives by learning how to cope with our health issues instead of just wishing things would change. I am still learning, but I have come a long way thanks to the support of a few kind friends and a whole bunch of people with IBD and ostomies.

Back when I had a full set of organs, I waited for treatments to potentially help me achieve remission, school became extremely difficult, but my optimism stayed intact because I didn’t give myself much time to think about anything but my academic goals, and I honestly kept thinking I was only a few months away from feeling great. It turns out I was making a few mistakes. I highly recommend using your time wisely, but I don’t recommend my previous strategy of working to the point of exhaustion. Apparently there is such a thing as too much dedication to schoolwork, and such focused ambition can easily turn destructive when physical trouble demands dramatic lifestyle changes. Depending on your circumstances, you might have to be open to the possibility of finding new hobbies, academic paths and career options. Time away from school or work can be a blessing in disguise for people who end up finding occupations they truly love. While you’re waiting for life to change, you just might be able to figure out some new ways to feel truly fulfilled.

Pain and fatigue are a constant force limiting my physical and mental abilities. I have lost control over so many aspects of my life, and I am here to tell you that no matter how elusive they may seem, hope and joy are within your reach. Sometimes we just have to drag ourselves through rough days and dream of brighter times ahead. In the meantime, here are a few suggestions for passing the time:

Be a couch potato sometimes if you wish your brain had an “off” switch and it hurts to move.
I watch comedies when I need a distraction and I don’t want to think at all. Since I’m a political science student who doesn’t know much about the world, I also watch documentaries when I feel like learning. They’re also great distractions from my frustration, and I end up with all sorts of random knowledge. I get teased about this habit, but that’s okay. I think everyone can agree that nature shows can be nice for stress relief, but I also watch the occasional show about environmental destruction or human rights abuses. Avoid those if you’re already depressed.

Exercise: start small and respect your limits
Movement can be good, but within reason. If you’re really sick, stretching and walking might be the extent of your workouts. Apparently you should stop before you get dizzy and nauseous. If I’m in enough pain, I’m completely unmotivated to move. As soon as I’m feeling a little better, I tend go out and disrespect my limits. We can all agree that a bit of exercise is great for stress relief, but staying hydrated and maintaining a good electrolyte balance are more difficult with gut issues. If you work out to the point of needing serious recovery time, try not to feel too bad about your condition. When we’re waiting for our bodies to get stronger, it’s easy to get frustrated. I try to remind myself that I have to start somewhere.

Practice gratitude: spend some time thinking about your blessings.
Practicing gratitude is different than convincing yourself that your emotions and suffering are invalid just because other people seem to face more difficult circumstances. My mother tells me that just because there are starving refugee children in Africa, that doesn’t mean I’m not allowed to be upset about my condition. I get annoyed with myself for feeling frustrated, impatient, and hopeless because I figure I have no right to be sad. Other people who deal with different challenges have the right to be upset with their lives, but I should be satisfied with my blessings and accept my problems. I currently have very little advice for you if you fall into similar thought patterns. My friends are still trying to break me of this terrible habit. 
I can tell you that hearing stories to illustrate the point that “it could be worse” is dreadfully unhelpful. Don’t let others make you feel guilty for feeling awkward and miserable when you’re struggling with transitions and waiting for life to change. It’s easier said than done, but just ignore the “could be worse” stories and change topic of conversation. After hearing similar comments for years, I still don’t know how to gracefully respond to “At least you have all your limbs,” or “At least you don’t have cancer.” 

Improve bathroom time: IBD flares demand a  lot of time near a toilet, so you might as well find ways to make it less lousy.
It’s an embarrassing topic that is seldom discussed, but some of us have spent an insane amount of time waiting to get away from our bathrooms. Thanks to my rebellious intestines, I used to live in there for at least a few hours every day. Being stuck in that little room while your body turns itself inside out is not fun. I spent a lot of time doubled over with cramping, but I was conscious enough to get bored sometimes. I had books and magazines that had short stories and segments that involved less brainpower, but I also kept a bit of schoolwork in the bathroom. During particularly restricted times, I watched movies on my laptop and kept a little nest of pillows and blankets in near the toilet so I could get a bit of rest between bouts of misery. Eventually I found the perfect brands of various goodies that helped alleviate socially unmentionable skin issues and discovered that heating pads can help with abdominal cramping. Every time I figured out a new trick to make the bathroom more welcoming, I was so delighted. If you’re spending too much time stuck in the bathroom, talk to people about their tricks for feeling better. You won’t regret those awkward discussions!

Life is better with good company: find some gutsy buddies, read some blogs, and learn from others.
I may be a gimpy weirdo, but gosh darnit, I can still brighten someone’s day. I can reassure my fellow gut buddies that they are not alone, and I can participate in the IBD and ostomy communities. I encourage you to do the same regardless of your current condition. We are in this together, dear friends. Let’s do what we can to help each other out. Whether you’re so sad you can hardly stand it, a little cranky about being sick and different, or generally feeling okay, your contributions to every conversation with fellow gutsy buddies are more valued than you will ever know.


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