Keeping It Together

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By Antonietta Mannarino

What’s it like for a person with a chronic illness to manage everyday life and her medical needs while keeping it together? It sometimes looks like a bloody mess…literally.

I love staying fit and healthy, so I make that a priority. That means moving every day. In my case, I weight train because I love it. I also like going on hikes. But don’t get me wrong, these activities only happen if I have the energy (and motivation). Most days, I do. But I’m human, and I have also learned to listen to my body and put my pride aside on days when my body is telling me to rest. I’ve become an expert in listening and tuning in to my body for signals when things are off. 

I was born with a blood disorder that requires me to receive blood transfusions every three weeks. The first couple and a half decades of my life were rough because research was still ongoing, and I had to stick my stomach with a little needle every night so I could infuse medication throughout the night and get rid of the excess iron that would build up with the numerous blood transfusions I would receive. I also was going through life stages such as puberty, going to college, then University, and living a high-stress life that was masked by too much control, too much discipline, high standards, and an ego that pushed my physical limits at times. This was the result of living through a chronic illness-induced trauma. Sure enough, the stress began imploding on me. I started experiencing panic attacks that I could not control, more difficult times during my hospital appointments, and my energy and self-confidence plummeted. Things had to change.

I’m happy to share that things have changed…for the better. I now pop a pill daily that does the same job that a needle in my stomach did every night. And I know how to listen to my body. I also know when I am overwhelmed and need to ask for help. But living with a chronic illness can be intense at times. It’s a full-time job. I need to be on top of my numerous medical appointments and medications. I need to keep healthy by exercising, eating right, and retraining my brain on a daily basis to rewrite old, needless stories that I once believed and held me back. These items are always on my to-do list every day, and when it gets challenging, you can be sure that I seek out my support. 

Do I have off days? Hell ya. I have my “stay-at-home-on-the-couch-because-I-have-no-energy-or-motivation-to-do-anything”! But they are seldom because I work on preventative care, so they don’t happen often. That’s what I can control in a healthy way–I can control what I eat, how hydrated I stay, how often I move or exercise, what I choose to think and dwell on or not, to take my medication, seek social support, seek help, and rest. God, yes. Rest!

That part about choosing to think and dwell on things or not? That’s a big one. Trust me. The mind is so powerful that your body will follow whatever your mind believes, whether it’s true or not. If I start thinking about how I’ll have no energy today, you can be sure that I’ll be moping throughout the day. The gym will be a struggle, and getting work done will look impossible. If I even think for a second that the nurses won’t find my veins today to start my transfusion, guess what? I’ll be poked 2 to 4 times. It happens time and time again. My brain makes it happen. So, I have to work on it daily to think of powerful, energetic, motivating thoughts. The power of the mind is a whole blog on its own. 

I do get those “meh” days where I’ll eat right, get a good night’s sleep, and try to keep positive, but I still feel like I want to seclude myself under blankets. The weight of it all can feel so tremendous. Do I have a simple solution? I wish. Sometimes, I just have to go through the motions of the day until I wake up the next morning. I have to kick my arse out of the door to go to the gym or outside. I have to numb my brain and just do my errands and work. I have to suck it up. That’s the truth. We can do all the right things, but knowing that the responsibilities of having a chronic illness will always be there is a weight to remember every day. For that, I say, let me breathe, let me be. If I cannot do anything more, I will just be with it. If I try to control my emotions, they will eventually implode on me (learned from experience). So, let me feel what I am feeling. If I feel like crying, I don’t hold back. If I feel angry, I try to take it out during my physical sessions of weight training or even walking. If I feel sad, I sometimes sit with it and wonder where it’s stemming from. I usually can pinpoint it, and this gives me some relief and a sense of empowerment. “Oh! That’s why I’m feeling down”. As I said, sometimes the solution to keeping it together is accepting and going along with these chaotic moments. 

It’s not always going to be a clear-cut, paved road. Sometimes, I’ll find myself in the muck. The reminder is, “One foot in front of the other and I will get out of this muck. The clear path will come again.” I’ll have great days, okay days, “meh” days, and terrible days. That is life. It’s how you manage and navigate them while you are in them. 

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