Fibromyalgia warrior, Amanda Morazzini suffers from Fibromyalgia. Amanda has added her face and story to Faces & Stories of Fibromyalgia. I am so grateful that Amanda has shared this, as each story told raises awareness and helps fellow sufferers.
You can connect with Amanda by following her on Instagram.
Fibromyalgia. A pain that’s indescribable. A pain that tears you down emotionally, mentally, verbally, and physically. A pain that attacks your everyday requirements on so many levels. It’s a pain that makes you want to walk away from your own body. The pain never ceases, never changes, and will never go away. It is widely misunderstood by the medical community causing lack of compassion. My name is Amanda, I am 30 years old and live with my fiancé and two children, ages seven and five. I was diagnosed with Fibromyalgia in the year of 2018.
Here’s my story leading up to Fibromyalgia.
I have been suffering from Ulcerative colitis since 1995.
Being diagnosed at the age of 6 was a confusing and complicated time. The doctors didn’t have a lot, if not any, research on this disease. I was a strong girl growing up and never gave up on myself.
At the age of 14, I had emergency total Colectomy surgery, removing my entire large intestine, also known as a J-pouch. Doctors discovered my intestines were so inflamed, explicating that it could burst at any given time and it could take my life. I was told by the surgeon that it was his surgical discovery, and I would be the first female “guinea pig” patient that he’d perform this surgery on. There was a high risk of not making it out alive due to blood loss and other unknown complications. The surgery took seven hours and it was explained to me on an earlier occasion that I would be in 100 different positions, like a “pretzel.” I woke up paralyzed from my hips down. I spent a month in hospital recovering, regaining my strength, and learning to walk again.
The surgeon explained how difficult the recovery would be, clarifying that my body would be in a series of “re-born” steps. With the help of physical therapy provided by the hospital, it took me about two weeks to learn how to stand on my own and walk a few steps. After being discharged, I spent a full year recovering at home. I had to regain my strength, walk and be fully back to my baseline. Since leaving the hospital, I’ve experienced body pains, chronic back pain, and other symptoms. This has made my everyday life facets difficult.
I learned later in life that I also painfully labored with two split herniated discs in my spine. I managed my pain levels and symptoms as much as I could, and overall tried to live a “normal” life to the best of my knowledge.
Medically speaking, my entire aspect of life changed in 2018. People think surgery can “cure” a disease, but they are terribly mistaken. On August 7th, 2018, I fought my second bowel obstruction due to scar tissue build up, again almost taking my life. This complication will continue to occur without symptom or warning and will eventually need another surgery.
After my hospitalization, I was in a traumatized state. I not only had to put a poker face on for my children, but for myself as well. Fighting a chronic disease is exhausting and never-ending suffering. Months went by and I started to experience unfamiliar widespread body pains. There were so many days that I thought I was going crazy. I explained the symptoms I was experiencing to my doctors but, in my opinion, this went unnoticed. It was extremely exasperating! For years I was treated for pain management due to my budging discs and J-pouch, however in reality, the pain and other symptoms I was struggling with, was in relation to Fibromyalgia. Validation. It is extreme.
If you have a rare disease, please keep advocating for yourself until you find the right doctor. After the diagnosis of Fibromyalgia, I was forced to quit my job as the pain and symptoms were unbearable and unmanageable. I juggle two different chronic illnesses on a day to day basis. My life has changed drastically. I went from a full-time working mother as a certified nurse assistant, to be a full-time spouse and mother. A full-time chronically ill one, focusing on my health. I felt incredibly out of place!
I worked as a CNA for 12 years. Working in the nursing field was all I’d ever known. I still struggle with the acceptance of having had to exchange my scrubs for sweatpants, for my new normal. I miss my job immeasurably. It was truly a rewarding job. I had a special bond with my patients and was known as the highest aid on my floors. I was always in tune with my patient’s feelings as I too understood what it was like to be in a hospital bed. I can comprehend the wave of emotions a patient can go through without studying it in a book. It became personal to me as I always went that extra mile for my patients’ comforts and needs.
After much sacrifice, I knew in my heart that I needed to close that chapter of my life. Without truly realizing that it only opened more doors for me as a person, mother and spouse. I have an opportunity to justly focus on myself and my health. I am blessed to be able to get that time watching my children grow and learn. Being involved with every activity or triumph. Cherishing every moment, whether it’s on the couch or out and about. It was an overwhelming, unfamiliar feeling.
So, new disease. New life. New doctors. New triggers, medications, symptoms, and ‘what if’s?’. I began dissecting every possible material there was on Fibromyalgia. This gave me relief in knowing “this IS real.”. “This is not all in my head.”. Sleep, stress and exercise. I can manage that. No problem. But could I? How do you exercise when your baseline pain levels are at an eight? How do you successfully sleep for the full eight hours, when you struggle with your primary chronic illness causing you to wake up and go to the bathroom throughout the night? Meanwhile getting a feel of the fibro, you picked up insomnia and the PTSD is taking your breath away, causing an even more numbing feeling.
How can you cope with stress when you’re sleep deprived, eight hours of sleep or not, and your brain fog disrupts your daily to weekly schedule? Getting setbacks over time, causing more stress and overwhelming pressure to stay on track. Raising two children with no support system in place and experiencing debilitating pain levels, along with other symptoms that make me feel unfunctional to even speak a full sentence. It is almost impossible. Having a third person looking in, for want of a better description, it feels like I was hit by an eighteen-wheeler, giving me paralyzing pain. My daughter beholding me in constant pain has been a very difficult challenge that I wasn’t ready to go through, being only 30 years old.
I will laugh and joke about the pain because that’s all I can do. I was angry, disordered, and ashamed, but you cannot get sucked into that depression. When explaining my experiences with Fibromyalgia to my doctors or other people, I’d explain that I am not depressed but dealing with Fibromyalgia symptoms is depressing. There is a difference.
Self-motivation is something I learned from my first diagnosis at six years old. The pep talks were much needed after the fibro diagnosis. I was dealt an unfair hand in life, yes, but that doesn’t mean I have to fold. The way I found a comfortable and doable plan, was by gathering my matters, largest to smallest, and fulfilling my demanding goals.
I have struggled with PTSD since I was six years old. It was time to start therapy sessions. Personally, I was never one for therapy but let’s be optimistic. I have found services that offer therapy in your home. Due to my anxiety and pain, it became extremely difficult to commit to weekly sessions and having your therapist come to you, is a done deal. At least in my eyes and circumstances. It’s hard enough finding time to meet doctor’s in your tight agendas, it’s a completely different story physically doing it. So yes, in home therapy suits me.
Escaping reality is necessary. You need to talk about chronic illnesses. Our stories deserve to be told. We deserve to give our bodies respect and heal our past trauma’s, both mentally and physically. I picked up some hobbies that helped calm my anxieties in a relaxing manner. These are painting, crocheting, and pool therapy. I began strict nightly routines when going to bed. Warm bath, essential oils and creams. Having a diffuser with essential oils on throughout the day is peaceful, in my opinion. Downloading a free app for nature and ‘white noise’ sounds is too. I love the raindrops playing at night. Having a routine is decisive.
Dealing with separate illnesses, my doctors agreed that being on medications was causing me more harm than good. I’m highly sensitive to medications and so have been focusing on lowering my stress levels and gaining my sleep routines without being medicated. You need to train your mind when to turn off and when to turn on. I listen to my body and know my limits. There are times when I’m unsure which symptoms are from which illness, as the symptoms are so similar. Having said that, it can get frustrating at times, but I try not let it get the best of me.
I will not allow myself to wallow in the gravity of the negative sides while living with these illnesses. I will fight for my own life and make it a good story. That is what people need to focus on when struggling with chronic illnesses. Your illnesses do not define you. It’s how you manage them that does. Throughout my life I have remained positive that tomorrow is another day. Tomorrow is another fight. You fight. You cry. You scream. You curse. You force yourself to get up and put one foot in front of the other. Use your struggles as your motivation. Love and trust your journey. Remember to love yourself too.