A New Kind of Normal

Let me start this post off by saying thank you to everyone close to me who has stuck around, supported me, and put up with me during these past eight months. Please know that I am so beyond thankful for you, even though I may suck at showing it. You are the reason I can keep fighting. You are the reasons my days still seem bright and the reasons I still have hope in a stronger tomorrow. 

Life In Slow Motion: Eight Months with Crohn’s Disease

It’s been eight months since I left the Specialists office full of so many thoughts of the unknown. I stood there holding two pieces of paper in my hand that outlined a diagnosis that would change the rest of my life. Two pieces of paper is all it took for my whole world to turn upside down and force me to rethink, reevaluate, and relearn my purpose in life.

When I was first diagnosed with Crohn’s disease I had already had a rough couple months with my health and had not been  feeling well. The diagnosis didn’t change that. In fact, for the first little while I was better than I’d been in months thanks to the ‘miracle drug’, prednisone. It wouldn’t be long until this miracle drug would become the devil in disguise, yet still the better of two evils.

It’s taken a lot for me to be open and transparent about my journey and thoughts in my life. I lead a relatively private life but one thing that keeps me going is knowing that I can still feel something, regardless of the amount of pills it takes to help me function. Writing is my safe haven. The place where I can see in black and white that I can still think (somewhat) and still feel and that I am living and not just existing.

When I was first diagnosed, I didn’t want to tell anyone that I was “officially sick.” I didn’t want to be treated differently than anyone else. I didn’t want anyone’s pity or anyone to think I’m incapable of what I could do before the ‘label’ was placed on me.

I soon realized that the optimism I had to continue functioning how I always have wasn’t realistic anymore and that I was only causing myself more harm.

On one hand, I feel that I have mostly remained my optimistic, sarcastic self over the last eight months. On the other hand, I’m probably officially the jackass on the outside that I’ve always been on the inside.

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It’s hard to begin to put into words the thoughts I have with how frequently they change, but here’s some things to understand if you are caring for someone who suffers from any Chronic illness.

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Chronic illness doesn’t just attack your body, it also takes over your mind.

For as many good things that have happened for my body from the drugs I’ve been given during this journey, I’ve also had countless setbacks. My medication fluctuates so frequently that I become incredibly miserable to be around. I’m too exhausted to do anything productive after work and I’m frequently beyond irritable. Sometimes I even feel like I have absolutely no impulse control with my reactions, which is either rather amusing or incredibly terrifying.

You reach a point where you can’t hold back the emotions any longer and suddenly you’re breaking down at a stoplight on your way home from work. You think you can escape the emotional torture; your disease is purely physical, right? After all, it is what they call the “invisible illness” because on the outside you look “just fine”.

People often say that things will get better and this experience will pass, but you see, the reality is that there really is no escape. There is no light at the end of the tunnel. There is no happy ending. There is no way to make the incurable go away.

You learn to tolerate the physical pain. You have no other option, but it’s the overwhelming emotional burden that makes you feel like someone is suffocating you and you can’t escape that feeling of pure mania as you try to get free. You can sure as Hell try and fight it, but you can never overcome that crushing feeling of being so trapped. How are you supposed to get rid of an emotional asphyxiation when the source of it is never going to go away?

Chronic illness is being locked in with the realities of the unknown

Any day anything could go wrong, or at least more wrong than it already has. It’s so hard not to feel anxious, depressed, or completely lost when all that lies ahead is an open read leading you to another surprise around the corner. You rarely seem to get answers on how to feel better and when you do, the answers are often ones you wish you hadn’t heard any way.

For years I have been treated for manic depression and anxiety. I have overcome childhood abuse, battled with pain killer addictions, and at times thought I had reached the end of what I could handle… Ha, what did I know? Looking back, nothing ever prepared me for the journey these past eight months has taken me on.

Chronic illness causes you to re-evaluate life’s meaning

I have always believed that a product is never perfect, including your personal development. We are constantly learning, growing, exploring, and adapting to society’s changes and challenges. This was no exception. I have spent countless hours analyzing life’s purpose since the official treatments started. I frequently analyze my future and how this roadblock will shape the coming chapters in my life.

When you reset, refocus, and surrender to life you become weak and vulnerable. You become easily influenced. You become friends with bad strangers. You become strangers with good friends. You become sad often and emotionally unstable.

The most beautiful thing about life is you always have a choice for as long as you are breathing in air from this world

Regardless of circumstance, you decide how to respond to what comes your way. You have the choice to either fall apart and become a victim of the circumstance or you can rise high above the fire blazing beneath you that forces you to surrender to what the future holds.

When you realize that you are in control of yourself no matter what happens, you will be able to turn your unfortunate circumstances into stepping stones that will bring yourself to a healthy environment.

You build a support system. You surround yourself with quality people. You learn that it is okay to have a hard day, to have irrational thoughts and fears, because by waking up to another sunrise you made the bold decision that your mind is ready to battle your body for another day.

The one thing every single person suffering from illness wishes for, but rarely gets and that is hope.

It’s hope that one day things will get better. Hope that there will finally be a day when your pain is a zero on that little chart at the doctor’s office. Hope that one day you’ll get a glimpse of what it feels like to be “normal” again.

I know technically living with this means that my genetics are weak and that my body is just purely against me, but somehow I believe this slowly is making me a better version of myself.

I have done a lot of reading of other people’s story with chronic illness. I read countless blogs and question pages just to know that I am not alone. I may be biased, but as I have read other people’s experiences I have grown to believe that chronically ill people – especially young ill people – are some of the most authentic around. Now don’t get me wrong, healthy people are great too. I would give anything to be that person again but when you’re ill, you understand things that you used to take for granted, things other people may still take that way.

You take an extra moment to focus on the sunrise as you twist your blinds open in the morning, feeling blessed to live another day. You take satisfaction in the little successes or milestones you get to experience. You look at life as an opportunity to be embraced, rather than a time slot for existence. You become overwhelmed with every emotion possible. You respect, appreciate, and admire genuine friendships more than you could ever imagine.

Lastly, you arrive at peace with your soul with the understanding of this new kind of normal. You know that you are living another day for a reason and that this moment in time is one you will never get back. You wake up, show up, and you don’t give up. You make a point to make each day have an impact that can’t be forgotten.

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