Wow! It's been quite a while since I last updated and shared on this blog. I have been so focused on taking care of my personal needs, managing my health and symptoms the best way possible, spending time with my family, and helping my daughter try and figure out what was happening with her health, help her find the right medical team to help find answers and improvements in her health journey. I do intend to try and return to blogging occasionally, as topics or ideas come to mind and my energy and concentration allows. Dealing with mental fog and extreme fatigue sadly prohibits me from finding the right words to express my thoughts and emotions.
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Season of rest for me means physically, emotionally, and mentally trying to enjoy life in the moment, within limitations of course. Pacing myself and listening to my body, which is always challenging with symptoms, fatigue, and physical consequences of the “after effect”. Spending time intentionally recognizing and appreciating blessings around me, no matter how small, while avoiding letting negative experiences get in my mind, replacing distracting worries or concerns for things in the future with what’s important right now.
Self care becomes more of a priority for refueling/refreshing. That’s not to say there will not be bad physical days/symptoms - as undoubtedly they will continue as well as required actions/coping. During this time of rest, I will find reasonable ways to enjoy quality time with my kids, sometimes pushing my limits but minimizing risks in ways that may help reduce too many physical strains without hampering too much of the meaningful experience. I will continue to work on having more patience, grace and forgiveness within myself through God’s eyes instead of others’ judgements or my perception of what others may/may not be thinking. I will focus on what I can control and allow myself to trust that other things will fall into place with time, God’s plan, and help. During this time of rest, I will try to find and accept a central calmness, after being in a survival mode so long. I will intentionally focus on improving my connection with God, attend church on days with tolerable symptoms (continue to attend online if my symptoms are too bad) with intentions of eventually connecting with actual individuals on a more personal level. I am unsure how long I will be in this restful - recharging state. I am not placing any time guidelines, as I believe it will be flexible. I figure that eventually life will either pull me into a more active “growing” state, whether it be due to goals of self-improvement period, helping others/family, illness related issues, symptom control, or hopefully not anytime soon the survival or grief mode. Personally, I understand that these states of mind or modes are “fluid”, they come and go with life and its experiences. I think it’s important that I do recognize them in some fashion though, as it allows me to remember that with the uncertainties and obstacles in life, we don’t have to get “stuck” in one place but can count on more positive times to re-emerge (unfortunately times of sadness/grief/fear etc will as well). My goal is to appreciate and enjoy the positive days the best I can, continue to find ways to grow and better myself, and when I have to go through the tougher times, continue to lean on my Faith and knowledge that God promises and personal experiences prove better days will find their way back to me. 2020 Twenty-twenty An interesting and confusing year, complete with blessings, fears, challenges, and memories of a lifetime. In January a new year was upon us, full of hopes, goals plans and untapped possibilities. February brought us a magnificent super bowl, Mahomes led the Chiefs to an exciting and energetic win. March the world went crazy, Covid 19 began it's terror, instilling concern and panic for many. April remote learning for students, sports halted, virtual medical appts became norm, NASCAR i-racing and stay at home order May Carmen's first two novels written and self-published, toilet paper shortage, eager for Covid to go away June Colby's high school drive-up graduation, NASCAR back in action but without fans, required face mask throughout many states. July another book written and published by Carmen, remote vacation in a mountain cabin, dad got a very playful puppy. Aug new school year, for many once again remote, Colby's freshman year with covid restrictions in college, Carmen writing and classes from home. Sept football partially returned with low to no fans allowed, COVID protocols still required everywhere, Local restaurants and businesses suffering. Oct Halloween canceled for some, World is so strange and at times scary. Covid-19 still causing so much uncertainty and fears. Nov presidential election mayhem, colleges that were in person ending their semesters, Thanksgiving traditions altered to protect one another. Dec Christmas traditions altered once again, I became sick with COVID. Many prayers for family to have a healthy 2021 STAYING....... G ain and/or keep motivated to hang-on by thinking about, considering, & create plans w/ my kids. R emind self that experience tells me it will eventually change/improve some. O riginate plans of what I’d like to do when I begin to feel better, when symptoms are tolerable. U nderstand, learn to better recognize and avoid triggers when possible. N ot everything has a solution, sometimes just have to deal, breathe, live through. D on’t fight too hard, forcing or thinking failure may actually make matters worse. E liminate self-destruction, if self-care or coping strategies aren’t working, don’t let it bring me down. D oing best I can in the moment, so be patient and forgiving to self, stop the blaming of self. During flares and/or low points. Helpful free resource I discovered on twitter to help with relaxation that may be beneficial to others as well. https://t.co/QVGhvEwZLZ?amp=1 The Sacrifice, written by my daughter Carmen, was published on Amazon in May 2020. This is her 2nd fictional novel that has been published. In her latest book, the main character becomes sick and eventually diagnosed with gastroparesis. Carmen does a fantastic job describing the ordeal that someone with gastroparesis may go through prior to, during, and after being diagnosed. While Eden, the main character, learns more about what's going on with her medically and how to best deal with it, she is faced with additional (non-medical) life problems as well. Through it all she tries to rely on family and friendship, while also learning more about herself. THE SACRIFICE is a fictional, creative, and emotional read. While much of the book is realistic, including the gastroparesis descriptions, there are also some unexpected twists and an element of supernatural in this book as well. Carmen’s description and details throughout the book are so vivid that it’s easy for the reader to believe they are actually there among the characters, I know I did. About her writing, Carmen states, "I never thought that I would be the one to write books while I was still a kid. But here I am with my second novel. I have always enjoyed writing for the most part, but during the past few months, I am truly starting to realize that I have a passion for writing. When I was just nine years old, my life completely changed. My mom was diagnosed with gastroparesis. I didn’t know what to do, or how I could help her, when she was always feeling horrible and in the hospital. With family by my side, I learned a lot throughout that year, and continue to learn more things each day. At times, I’ve felt like everything was pouring down on me, but didn’t really know how to handle it all. I eventually learned how to open up to my family and lean more on my faith. My goal is to use my writing and experiences, along with creativity, to spread messages of encouragement to others. I was inspired to write THE SACRIFICE because it describes the struggles teenagers can have when living with or trying to survive chronic illness and family challenges. The disease, gastroparesis, that I included in this book is the same disease that my mom has been living with. I may not have the disease, and I may not be able to feel the pain that my mom does, but I see the pain that she goes through every day in my life, and that gives me the ability to relate to it. This book is fictional and has some unexpected twists, but also expresses to the reader that you can make it through whatever troubles you are going through and you should embrace what life gives you. I hope that everyone who reads this book learns something from it as well." Summary of THE SACRIFICE: “Eden is a seventeen-year-old girl that is enjoying her last summer before senior year, but an unexpected curveball gets thrown at her with a life-changing disease. Her twin brother, Bennett, and best friend, Carter, stay by her side, but once a tragedy happens, she begins to feel the pain that she never imagined having. One letter ends up being the mystery that she wishes she never opened up. Will she be able to find closure, or will she give up on everything that she's ever worked for?” You can purchase your ebook or paperback copy of THE SACRIFICE from Amazon now!! https://www.amazon.com/dp/B0892DJV6G/ref=cm_sw_r_tw_dp_U_x_12-0EbYPCRE Carmen’s first book, UNBREAKABLE, is also available on Amazon. Advocacy to me means being vulnerable enough to share my personal health experiences and journeys in an effort to have meaningful and hopefully beneficial impact. While learning and maneuvering through symptoms, appointments, frustrations, tests, medical procedures, emotional falls, successes, etc, I still have an opportunity to help someone else. Who knows, possibly even learn something to help myself. Advocacy is a way to help hold on to some sort of hope for better tomorrow, if not for me, at least for future generations.
Advocating provides me an opportunity to help others by offering support to those that are searching for someone they can relate to and understands what they are going through. It allows me to share knowledge about my illness and spread awareness on social media and publicly. I can participate in advocacy projects and campaigns, volunteer with helping to plan, manage, promote, etc, which sometimes adds a sense of value and purpose to my life. For me, the majority of my advocacy takes place on my computer from my couch. Timing is flexible. Recently, however, my mind has not been connected with advocacy. Don't get me wrong, I still share things that others create once in a while, participate in surveys, respond to a message/question sent my way, etc.. . Maybe it's because I'm so "burned out" from dealing with my personal issues or having to spend way too much energy trying to deal with my own struggles, that I have nothing left to give right now. Hopefully, the new plan between my doctor and I will help improve these current symptoms. My concentration, mind fog, lightheaded spells along with "normal" issues have been a big distraction and problem, not only with advocacy, but life in general. I just feel so frustrated and exhausted, physically and mentally, right now. But that's ok, just means I need to spend extra time focusing on my self-care for a while. "Difficulty creates the opportunity for self-reflection and compassion." - Suzanolori Parks The year of 2020 has been a memorable one for sure. For the rest of our lives, we will remember this year as the year of the Covid-19 pandemic. We will remember being told to "shelter at home" and "social distance" at least 6 feet away from others, though physical distancing would have been a more accurate term. We will remember the closing of movie theaters, malls, parks, and beaches. We will remember that churches were required to close their doors and hold services online instead and all sports were cancelled. We will remember how we were instructed to remain home and not meet up in groups outside of our household. We will remember how colleges and schools were closed and students sent home for online distance learning instead; funerals and weddings postphoned or forced to be held virtually or without attendees. We will remember how a lot of businesses and restaurants had to modify the way they functioned. We'll remember hearing that employees who could work from home were told to do so. We will remember dentists, eye doctors, and even medical clinics closing to help decrease infection risks, to help "flatten the curve", and to save on necessary medical supplies (PPE, masks, gloves, face shields, etc) that were below adequate quantities in hospital settings. We'll remember how many healthcare workers, truckers, and grocery clerks worked hectic schedules to meet the needs of others, while putting themselves at additional risks. Nursing homes and hospitals not allowing visitors, their patients being isolated and alone will also be a too hard to forget memory. And I can guarantee that people will remember the lack of toilet paper, hand sanitizer, hand soap, and even meats in the grocery store. The daily news about Covid-19 was disheartening, frightening, and at times overwhelming while our communities tried to adjust to all the changes this virus was unexpectedly creating in our lives. However, even amongst the sickness, negativity, uncertainty, and fear there there will also be positive memories shared along the way. Some parents were able to spend additional quality time with their children, some families actually had time to eat together at the table again, people who were always on the go were able to sit back and relax a little more than normal. Life slowed down for many, books were read, Netflix and other TV services utilized, favorite series/movies were binge-watched, walks and bike rides in nature increased, communities came together in support of those on the front-lines, new hobbies were discovered, and house chores that had been put off time and time again were finally completed. Personally, I found it interesting when reflecting on the impacts this virus had on my family. Yes, we were worried, concerned, and fearful about the severity and destruction that this virus was causing in the the world, in our country, state, and town. We definitely felt increased anxiety from this health crisis. However, our day to day schedule was not thrown out of sorts like some. The major change in our household consisted of my kids being at home completing school work, instead of at school. My daughter wrote her first fictional chapter book, which is being published, and is already writing her next book. My son had time to discover additional college scholarships to apply for. More meals (and desserts) were cooked at home, while less trips were taken to the grocery store in an effort to reduce the risk of us being infected. We also stayed away from other family members outside our house in hopes of ensuring noone became infected with Covid-19. Instead, we focused on talking with my parents and other family members on the phone or over facetime. When we did happen to see my parents, we kept our visits at a distance and outside. Doctor appointments being altered was another change for me, like many other patients. Instead of in-person clinic visits, I had phone call visits with my psychologist and a virtual online visit with my gastroenterologist. Both telemedicine styles felt strange, but were still effective. Surprisingly, I also noticed that the way I perceived myself during this pandemic was kinder and more understanding than how I often viewed myself prior to the virus. I figure this is because I felt like I was more connected with the world, not insignificant like I sometimes believed, as everyone was expected to remain at home as much as possible to help save lives. I felt like I had "permission" to live my "chronic illness life" because it resembled what "normal healthier" people were doing as well right now. (Yes, I know I don't need permission to respect my limitations and do what's best for my body.) Which brings me to my intentions of what I'd like to keep and carry with me after the pandemic is over. Instead of returning to minimizing my worth and value, I want to grow from this experience. Four goals come to my mind that may help me achieve this personal growth: 1) Continue recognizing and appreciating the blessings that surround me. Enjoy moments, make memories, and don't take for granted the time I have with my family. 2) Always walk in faith. Everything happens for a reason. We're never alone. God's in control, not us. Stop wasting precious time and energy fighting things that are out of my control. 3) Add variety to my days. Illness may limit me in what I can do or where I can go, but that doesn't mean that my days have to be meaningless or empty. I need to ensure that I make time to participate in different activities during the day. Some examples of tasks I can look forward are....
4) Improve Self-Compassion by having a less judgemental and critical inner voice. Replacing my negative thoughts with more kindness, understanding, and forgiveness will be my ultimate goal. I believe that I was already making some progress in this area with the help of my psychologist, but definitely still have room for further growth. I know that I am human, am imperfect, and that everyone will experience difficulties in life, it's inevitable. I am going to continue trying to be more mindful of my thoughts and feelings in the moment, and accept them without senseless judgement. I haven't mastered this mindset yet, even with years of attempting to, but I'm not giving up. This will certainly be a struggle for me at times, maybe more than I like to admit, but it is worthwhile because I am worthy. In order for me to be successful, I am going to have to allow my vulnerabilities to surface. I will have to face and acknowledge the emotions I experience, including the physically and emotionally painful ones, allow myself time to actual feel them without avoiding or running away from them (yikes!), and then eventually, hopefully release the negative hold they have on me. As I've heard before, "life is messy", but in reality the messiness and beauty we experience is something that connects us all together. Everyone will encounter hardships and challenges during their journey in life, and though we may feel lost, isolated, forgotten, or alone, these feelings are not uncommon or unnatural. Message: The Covid-19 pandemic will live forever in our minds, and will likely be around to haunt us for quite a while. Many aspects of this virus and it's impact on our lives are out of our control. For those of us that are always searching for the purpose, let's try to hold on tight to the positive personal and community growth which can be possible and present as well. |
Trisha BundyA proud mother, educator, Gastroparesis & GI Motility Disorder Advocate, Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
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