The Two Sides to My Daily Life With Chronic Illness

I wake up every morning with shear grit and determination to be my best self, to be a functioning member of society. I self-motivate to complete the tasks I set for myself the night before, knowing the self-gratification will fulfill me and make me whole. I am That Girl.

I wake up every morning, my brain fizzing and consumed with pain. I dread to even turn over to reach out for my medication, knowing the brain fog will soon take over and my day will be dulled with the gruesome side effects of prescription drugs. My head and my body begin their daily battle of knowing what needs to be done, and the frustration of simply not being able to do those things. I look at my list of tasks the wishful girl of last night wrote and drown in my thoughts, knowing they can’t be completed. I am This Girl.

I look at my beautiful daughter’s face and I am excited at our day ahead, all the things we can do, the new experiences we can have, the many things I can teach her and the beautiful memories we can build. I appreciate how very lucky I am to be this little lady’s mom. I know I will provide the best start in life for her and will strive to support her throughout her whole life. I am That Girl.
I look at my beautiful daughter’s face and my stomach churns with the guilt I feel knowing today, as like yesterday, I will have to say no when she reaches her arms out for a carry, I will have to decline the offer to get up and dance to her favorite song, I will struggle to be patient as the pain has taken up all my energy. I am overwhelmed to know I could have been the best mom in the world, but in reality, we have to adapt our lives to suit this condition. I am This Girl. I see my loving partner, the one who dedicates his life to mine, and mine is his. I cherish every moment we have together and every plan we make for now and the future. I am honored to know he chose me to be his wife and the countdown to our wedding day gives me butterflies the closer it gets. The cuddle of support or the hand on my head when I am feeling low means more than I think he will ever know. I am That Girl.
I see my loving partner, the one who dedicates his life to mine and I feel unworthy. I try to be my best self when he walks in the door and have a house filled with positivity and laughter waiting for him after a hard day’s work. However, I can’t. I am at my breaking point by this time, the tears I’ve held in all day so our daughter doesn’t see them come gushing out. I try to put into words how I’m feeling to him, my words are ignored. There is no response. I know my condition is also his condition, what can you say to comfort someone on a daily basis? I am This Girl.
I text my parents to tell them how funny their granddaughter has been. I feel content to know I have given them a child to enjoy during their retirement. The next generation. I watch my parents play with my daughter, pure enjoyment on everyone’s faces. This is what love is. Knowing I have parents who have supported me no matter what, through the good, the bad and the ugly is truly amazing. I am That Girl.

I text my parents that once again, I have struggled with sleep, I am debilitated with pain and I just cannot cope. I see the message has been read with no reply. The reply comes through later, I know they have been considering how to respond, what could you possibly reply with? How can they help? I feel terrible as they come to pick up my daughter, as I can’t parent today. I feel I am taking over their retirement. I feel selfish, I feel useless. I am This Girl.

I call the doctor’s to explain my old symptoms and new ailments. The doctor reads my records and explains of a new drug that can be added to my existing mounting list they believe will give me some relief. I am hopeful this is the one that can help me. I speak to pain management, and they offer me a further referral to another specialist. I see this as the light at the end of the tunnel. I am That Girl.
I call the doctor’s. It’s a doctor I have never seen. They don’t know my medical history, they don’t know my medications, they are completely unsympathetic. I am just a number. It’s that time again, pain management review. They tell me to do exercises — not possible. They tell me to adjust my diet — tried it, didn’t work. They prescribe me another pill. I am doubtful this will do anything other than give me a new side effect to manage. I am This Girl.

I was once a girl so full of energy and ambition. I had so many dreams for my future, I had my life mapped out full of adventures, fulfillment, opportunities and challenges. I was that girl who was up at 5:30 a.m. to go on a run, out on my blades or lifting weights. I was that girl who everyone asked, “Where do you get your energy from?” I am That Girl.

I was once a girl so full of energy and ambition. The plans and dreams I once made are now a distant memory. I grieve for this girl, I miss her. I look back at the girl who was always so full of life and who could take on the world. I look in the mirror and know my energy is zapped, the world will have to wait, getting through the next hour is going to be a chore. I am This Girl.

I love to socialize and meet new people. I love to discuss their lives, ambitions and loves. I love to converse and share stories. I am a people person, I am happy, go-lucky, full of positivity, always presented well and I am someone people enjoy being in the company of. I am That Girl.

I love to socialize and meet new people until the dreaded questions begin. Society has made it normal to ask people their name, quickly followed by what it is you do for a living. A job somehow defines us as human. Now, I have two options: Take the judgment of being unemployed, a housewife, a full-time mom, or begin to explain my story of pain, failed operations and the dreary truth of my life. Either way, people will judge. I shouldn’t care, but I do. People see a girl full of positivity, hair done, makeup done, nails done and can’t believe this is what my life is. Well, this is the girl I want people to see. They do not see the repercussion of this. For days, I will struggle with the consequences of being up and about, being social and living my life. I will feel guilt I took a day or night to do this and now my whole life is on hold for a few days while a recover. I am This Girl.

I love to share my life with others: What I do, who I see, where I go, how my family and I are doing. I feel proud of what I have and the life I live. Sharing my life on social media, with friends and family, or in conversations with new people is simply one of my favorite things. I am living my best life, it is perfect for me and I am overjoyed to share my world. I am That Girl.

I love to share my life with others, but I live with the constant fear everyone will think I am falsifying symptoms, that I exaggerate my condition or even completely make up my pain levels. I am guilty for only sharing the good times, rarely will I share the bad. The fear of people thinking I am lazy, people recommending a treatment, supplement or medication that worked for their cousins, friends or aunt that miraculously cured their condition is mind-numbing. They mean no harm, they probably mean well, there is no magic wand to cure me. Please don’t tell me there is. I am This Girl.

I have absolutely come to terms with my condition, I do have days, hours or sometimes even minutes where I truly appreciate how my pain has changed my life. How I am now so much more empathetic and open-minded.

I have absolutely come to terms with my condition; however, this does not stop the grieving for the girl I once was. Some days are tough, everyone has their battles in life, these are my battles. I am This Girl.

Source:https://themighty.com

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