camouflage & robbed

Have you ever felt a time where you just felt you had no control over anything anymore? Not talking about where you lose control over one area and you have to compensate by making sure something else goes your way, but just your whole life is just crumbling piece by piece? You are just stuck with no where to turn.

Everything generally started with the release of Five Feet Apart. I entered an enlightenment period in which I felt I had to re-learn everything about the disease I had since I was 10 months old. I was becoming more aware of the seriousness of what I had and growing out of the naive world I was living in. The movie brought awareness not only to society, but to one of it’s own patients.

I then moved on to the CF memoir “Salt in My Soul: An Unfinished Life”. No one has said it better than Mallory when she wrote “I was sheltered as a child from the brutality of CF, from the likelihood of dying young, from the statistics and stories that say it all” and “I did not have any friends with CF growing up, and thus had no concept of the rollercoaster of illness patients ride, at varying velocities”. I had no idea what was about to come.

The weekend of my 26th birthday I all of a sudden had no appetite and was constantly nauseous, even more so when I tried to eat something. Eating an apple was a struggle some days. Here goes my roller coaster. I had to go through a cycle of many tests and after 2 months we came to gastroparesis. A condition where the stomach does not empty or digest as it should so it leads to feelings of being full after small amounts of food. I was robbed of my typical appetite and the comfort of being able to eat. Now the anxiety to eat is left in its place. Will this meal make me nauseous to my stomach or not? The result was weight loss.

My breathing became a little abnormal. My chest would be tight and my lungs would hurt. After 26 years, here goes my first round of actual CF flare ups. I was coughing up more than usual and was just not myself. I was weak. I was tired. I was achey. I was run down. I was easily out of breath. Just another thing I couldn’t control no matter how hard I tried. I was robbed of being able to take the stairs. I was robbed of being able to have a relaxing breath.

I would talk to others about how I was feeling and what I was dealing with. I was expressing how I wasn’t me and would get comments about how I needed coffee…the stairs get everybody winded…I’m just getting older; I never felt understood. It was one of those times where only someone else with a chronic illness would understand. I was listening to Selena Gomez’s song ‘Camouflage’ and the lyrics explained it all. “I got so much shit to say but I can’t help feeling like camouflage”. Sometimes I wonder how much detail to go into? I want to get awareness out there, but when someone is giving off the vibe they don’t understand, is it worth the fight, especially when I already feel so weak? It was if I was robbed of the chance to spread awareness of my chronic illness.

I would have doctor appointments where my lung function and weight didn’t reflect what was going on. They slowly started taking me seriously as I was never one to complain or call the clinic 5 times a week. However, after a month of antibiotics I was still not well. What the hell is going on? This isn’t myself at all.

Then the ultimate robbery. A home break in. I was at work and was overcome with a weak sensation and needed to go home. My supervisor drove me home with my coworker tagging along in my car. We arrived to my house as a burglary was in process. My body was no longer mine, and now my home. I was broken. I didn’t want to deal with anything anymore. I lost all control and just beaten down.

I had a follow up appointment before my first weekend hospital stay. My lung function dropped 8% in a week. The doctors finally took me seriously and felt even more positive that hospital was the next step. All I can think is how this is not my body. Selena was spot on once again in her lyric “you were mine just yesterday, now I have no idea who you are. It’s like you’re camouflage”. It is as if my body is betraying me. What is the coping mechanism for this? I don’t know who I am anymore.

As I write this currently still in the hospital, I am trying to figure out how to make my comeback. There is still a journey to get back to normal. Logically I know as time goes on things will get better. I will get medicine, we will get a security alarm for the house. But at the same time there is the unknown that scares me. The question of is this my new normal in terms of health or bump in the road?

I want to feel in control again. I want to do the activities I used to without any hindrance. I want to be visible and understood. I don’t want to be robbed of my independence and sanity again.

I want to be me.