Real Life Diaries: Living with Gastroparesis by Lynda Cheldelin Fell and Melissa Adams Vanhouten, includes personal heartfelt and thoughtful responses to inquisitive questions that other gastroparesis patients, as well as patients with chronic GI illnesses, family members, friends, or even medical professionals may have regarding life with Gastroparesisis and/or other chronic digestive disorders.
The narratives provide readers with an inside view of the impact that chronic illness can have on one's physical, mental, and emotional health as well as their day to day lifestyle and the connections with those around them. Each of the stories are different, unique, and individualized while also sharing insight that others can appreciate and relate to. This book is not intended to diagnose or treat conditions, but rather an opportunity to learn more about some of the various symptoms, treatments, and knowledge that we've learned from our health experiences. The intention of the book is to make others more aware of their condition(s), recognition that they are NOT alone, and share ideas about treatments or procedures that one may choose to discuss with their personal medical team. If you are expecting to read a cure all, happy feel good, happy ending book - this is not the book for you. Instead, this is a realistic look into what patients feel, see, think, hear, fear, and even hope while learning how to live and cope with being chronically ill. Not only will you discover the impact that being sick may have on the patients' personal lives, but in some cases, how it impacts their social and family circle as well. In addition to this book, I have also found the following books to be enlightening, educational, thought-provoking, encouraging, and/or helpful along my health journey. I will add to this list as I read and discover new books that I find to be beneficial. (Clicking on the title will take you to the book's amazon page.) Gastroparesis Healing Diet by Tammy Chang Info regarding healthy eating and recipe advice from nutritionlist and patients. Changes that Heal (Book & Workbook) by Dr. Henry Cloud Book and workbook for deeper understanding in developing and healing yourself emotionally. A Blessing In Disguise by Kristen Fox and Mel Kenaston Blessings in Hidden Places by Kristen Fox and Mel Kenaston Both autobiographical books are from Kristen's personal perspective and experiences. Sadly, she has passed away since publishing her books. Kristen was also an online advocate, writing numerous articles for various sites, one of which was MTV. After the Diagnosis: from Crisis by JoAnn LeMaistre Written by a clinical psychologists, the reader is introduced to the six stages of emotional response to chronic illness that they, as a patient, may experience. The reader is walked through the stages of crisis, isolation, anger, reconstruction, intermittent depression, and finally renewal. Gastroparesis: A Roadmap for Your Journey by Chelsey M McIntyre As a pharmacist and person living with gastroparesis, Chelsey McIntyre shares what she has learned and experienced along her health journey. "Topics covered include foundational material on evaluating information, understanding what is happening to the body, and navigating medications, nutritional supplementation, and alternative therapies." Gastroparesis: My Personal Journey by Patricia L Rosati Autobiographical book about Patricia Rosati's personal experiences with gastroparesis. As a nurse living with gastroparesis, she describes how gastroparesis entered her life and how she managed to accomplish her goals while dealing with symptom management on a daily basis. "From doctors who told me it was all in my head to doctors who took the chance and gave me a new lease on life." After the Diagnosis: Transcending Chronic Illness by Julian Seifter and Betsy Seifter Dr. Julian Seifter was awakened to life with chronic illness when he discovered that he had diabetes. His life changed in many ways as he began seeing and experiencing the patient experience. In this book he "teaches you how to contend not only with the physical problems, the social stigma, and the emotional fallout of illness, but also with the medical establishment. Convinced that a deeper understanding of the spiritual, emotional, and physical challenges will bring not only comfort and support but also better care, he emphasizes truths rarely acknowledged in medical writing." Eight Days by Scott Thompson This book is not about illness itself, but I found it to be spiritually comforting as you journey with the character through thinking back over his life, prior to death. "Life's short when compared to enternity, but eternity is only worth it because of life." 30 Days of Hope for Strength in Chronic Illness by Elizabeth Evans Daily devotionals and prayers about life with chronic illness. Miracles from Heaven by Christy Beam This book, also made into a movie, was a true account written about Christy's and her daughter's experience with Chronic Intestinal Pseudo Obstruction and a form of gastroparesis. She describes not only the physical impact that illness had on her daughter, but also the emotional toll that it had on her and family, the dismissive attitudes from medical staff. The mission and advocating she had to do for her child as a result. But all is not bad, when faith is involved and certain people enter your life. If you have a book that you have found to be effective with coping and/or understanding life with chronic illness, please post in the comments below. I'm always looking for new thoughtful and helpful books to read.
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How do you say goodbye to the person you no longer are?
How do you grieve, find some level of acceptance, and move forward with the person that you have now become, since chronic illness made a presence in your life? I think it's reasonable to understand that chronic illness can and does negatively impact our lives in various ways. It causes, or at least it does me, to question who I am and what role I now have in society. When one unexpectedly becomes chronically ill, there is so much more to handle than just our condition(s). Often we, the patients, are using all of our available energy attempting to treat, or in many cases, tolerate, our symptoms as well as possible. Daily, we face limitations, some of which are visible, and others which are hidden. When chronic illness resides within us, more than just our physical life are tampered with, and unfortunately, in some situations, destroyed. The reality is that many people that live with chronic illnesses are.......
All of which dramatically alter and impact not only our's, but also our loved ones' lifestyles. These undesirable changes can create a LOT of confusion and uncertainty. Our identities, the ones that were familiar, the ones we created, and often the ones we defined ourselves by, suddenly disappear. Our new reality is scarier, stranger, unknown and flooded with uncertainties. Not only are we left suffering and trying to figure out how to best live with our new health conditions, but we are sometimes left emotionally suffering as we try to figure out our new "normal". Waking up one day to a strange body and eventually staring at a stranger in the mirror, one that you no longer recognize, can be agonizing. It's mentally exhausting and disheartening, especially when you can't seem to let go of your former self. How do you decipher your true identity, the one that is suppose to represent us for our entire life? Ideally, I think you would reflect up your talents, knowledge, skills, personality, and ultimately your "being". But what happens when you just see an empty blank slate? When the talents and skills that you once saw in yourself have become obsolete? When all of your most current knowledge seems to dwell on your medical experiences and personal research. Your personality bounces around from one extreme to the next as you try to protect yourself or the ones you love from the horrible symptoms, loneliness, and at times negative thoughts that poison your spirit day after day. Avoidance and distractions become the norm. Withdrawing yourself, so there is no one left to disappoint or feel disappointed by. For me personally, I catch myself trying to withdraw from everyone except my kids. I believe that it's important for us to recognize our tendancy to withdraw or isolate ourselves. Let's be honest, living with chronic illness is already isolating us enough. We don't need to isolate ourselves any further. We need positive personal connections to maintain our "humanness". Sounds easy, right? Hell, I wish that was the case. You see, when dealing with feeling physically awful day after day, facing nearly constant symptoms, missing out on special experiences and opportunities, letting others down with failed plans, and also dealing with negative consequences on account of your actions on a regular basis - your mind begins to be compromised as well. When you lose yourself, lose your identity, and no longer know who you are or what you have to offer, it becomes difficult, seemingly impossible, to communicate, share, encourage, support, or even genuinely connect with others. It's like the way you view yourself slowly begins to erode away. Everything you used to think about yourself is now challenged by your new limitations, placed on you by your own body. Reconsidering who you are deep down inside and having trouble defining yourself to the world can make it even harder to accept the realities of living with chronic illness. You start to feel angry, hopeless, helpless, resentful, damaged and yes, even depressed. Coping can become overwhelming and your new identity just isn’t as helpful or desirable as your old one, or at least that's been what it appears and feels like for me recently. Deep down I know that I am someone. I know that I try to help others when I can. I know that I'm kind and compassionate. I know that I'm a caring and loving parent. I just can't figure out how to redefine or reconnect with myself. I have been sick for over 5 years now. I was sick for a few years before I started losing my identity and self. I was able to hold on to my identity when I believed that I was going to be healed. My mentality or anxiety did NOT cause my illness. But, I can admit that the past couple of years have been a course of ups and downs as I struggle to live with the stress that chronic illness has placed on my daily life. However, I refuse to cave. I am determined to reclaim and identify with a newer version of my identity. One that is respectable, acceptable, and manageable for me. So let the quest continue... ------- If chronic illness has led you down a path of an identity crisis, I would love to hear your story. How did you redefine or reclaim your identity? Feel free to comment below or private message me via the contact form. My life was shattered when I became ill. Not only has constantly being sick since Feb 2013 impacted my daily health, how I feel, or how I function daily with my family, it also negatively impacted my life when it took away my ability to be in the classroom with my students. My GI disorders have shattered my nutritional intake, my patience, my strength, my optimism, my ability to actively participate in life with my kids, my purposeful living, and my meaningful career. It has shattered many aspects of who I am and who I desire to be.
I never looked at teaching as just a job, career, or paycheck. I knew before entering the profession, that I would not make a great living financially, that I would be underpaid, that I would be spending some of my personal money for classroom materials (didn't realize how much) - but the paycheck was never my motivating factor. TEACHING was. I chose a career in teaching because I truly enjoyed it. Teaching was my dream, passion, mission, and purpose. I was able to completely give my all, because I loved being an educator. As much as I hate being in front of others, talking in front of or even to adults, and being put on the spot, I was always in my comfort zone when teaching my students. The bonds, relationships, lessons learned and taught, laughs, discussions, improvements, student potential, and possible differences made while teaching were more than worth the amount of “work” I put in during the day and brought home at night and on weekends. The testing, I do not miss at all, the paperwork was awful (and argumentatively pointless) at times. The money provided to schools, classrooms, and teachers was a joke, but the actual teaching and student growth witnessed was captivating and extremely worthwhile to me. Were there challenges? Absolutely. Days I wanted to repeat, retry, or skip altogether? Yes. Changes that would have made the educational system better? Sure! Students that I possibly didn't reach as much as I hoped? Yes. I'm far from perfect. But, never would I have ever imagined that my teaching career would all crumble before me and end before I was ready to stop teaching. All because I became unexpectedly and chronically sick!! I can admit that the last 3 years I was actually in the classroom were very difficult due to my health, numerous doctor visits, and constantly feeling ill. I was trying to just get by to make it home and quite literally collapse in pain and fatigue. At the same time, I was lacking the nutrition and energy my body required to actually teach. I was spending too much time creating and writing substitute plans, which unfortunately meant more review or “book/worksheet” based learning from my students, rather than my own preference of lesson plans that I would have taught. My students were missing out on the hands-on activities, projects, and learning experiences as well as not being challenged or going as in-depth that we would have if I was able to be there. I spent many a days too nauseated to make it through a lesson or too lightheaded to move around the room. Days were spent with tears flooding in my eyes as I tried to catch a breath or moment of rest as they rushed through their lunch, while also attempting to prevent my students, colleagues, administration, and parents from seeing the intense pain or sickness that I was dealing with on a daily basis. Days were spent struggling to maintain my composure until a substitute could be found and able to come in to relieve/replace me for the day. Plans were adapted and changed at the last minute, for students and me, as unexpected sick calls mounted in the mornings due to extreme symptoms or impromptu feeding tube problems requiring medical attention. I put so much effort, love, time, and heart into truly getting to know each of my students, discovering ways to connect and reach them to my best ability, while also trying my best to be an inspirational teacher. I felt a sense of pride and fulfillment until this damn illness took over my body and required too much of my energy and time. I was not mentally ready to give up on or pause my dream of teaching. I was not mentally ready to say goodbye or leave it all behind. My world was shattered. My dreams were shattered. My identity and purpose were shattered. And to be honest, in many ways they are still shattered today. Physically, however, I know that I had no choice. I was too sick to be reliable, dependable, or physically stable in the classroom. I tried to be patient with my body. I tried teaching with the pain, nausea, fatigue, and sickness. I attempted tube feeding while teaching. But it just wasn’t enough to succeed or meet my basic expectations for me as a teacher. My students were not getting the education that they deserved, when my schedule and health were so unpredictable and negatively impacted. My body literally could not keep up. I was limited in ways I didn’t realize was possible. I lost the energy to search and discover meaningful ways to make the lessons intriguing, enlightening, exciting, challenging, and memorable for my students. I began having difficulty meeting my expectations and goals for the class, which was unfair to my students. My health required too much of my attention, medical leave and sick days were exhausted, and I was forced physically by my health and literally by my county to resign and go on long-term disability until my health stabilized or improved to a level where I could once again function to meet and exceed the needs of my students. My teaching was no longer significant enough to overcome the obstacles created by my health needs. I was no longer enough to make a lasting difference in my classroom. Instead of motivating and influencing my students, I unintentionally was holding them back from reaching their utmost potential during the school year. I was no longer able to meet their individual or classroom needs without destroying my body in the process. The daily transitions and routines became a struggle, full of uncertainty, and choppy for me and most likely the students as well. My body was failing me, and as a result, my career and passion were being stolen right out from under me. Now, I feel lost and empty. There’s a void that I don’t know how to refill. I fought hard to meet expectations during my childhood and educational years as I prepared myself to set out and conquer my goal of teaching. I followed the plan I set, I stayed focused, and I was on the path to achieving my dream of becoming the teacher that I had envisioned for so many years. I was on a successful and meaningful road, making my family and self proud. Living with a career that I strongly believe God had intended for me to live. Helping students see and believe in their individual and unique potentials, regardless of backgrounds or lives outside of the classroom. Incorporating compassion, trust, and a shared respect and love of learning. I had an opportunity to truly make a lasting difference by encouraging my students to visualize how education, dedication, and personal strengths could help pave a future full of possibilities and opportunities to achieve their own goals and dreams. I attempted to help them discover their identity not only as students, but also as leaders and collaborators, in and out of the classroom. I tried to help them see their value as citizens, to inspire them to communicate and work together with anyone and everyone, and guide them to respect and help others, regardless of their circumstances. Teaching was simply ME. It was MY LIFE outside of PARENTING. My DREAM. My PASSION. Now all of that has disappeared! At one time, I was hopeful that it would return, but as time passes the reality of my shattered dreams become clearer and seemingly more unreasonable. I miss teaching so much. It’s honestly heartbreaking to think about. I had all of it in my grasp until I became ill. Now there’s no meaning or purpose outside of parenting. At times, I can accept that since I love my kids and treasure the time I have with them more than anything. MY KIDS ARE MY LIFE! THEY are what is most important to and cherished by me. It’s just that it feels as if a part of me, a part of my purpose in life, my identity has been taken and is now missing. I’ve tried to discover a new purpose to strive for alongside my love and need for parenting. I’ve tried participating in online support groups, helping others live and cope with their chronic illnesses. I try advocating via social media about functional GI disorders such as, but not limited to, gastroparesis and colonic inertia. I’ve tried educating and advocating online about life with chronic illness, feeding tubes, ileostomies, etc. I have tried writing and blogging about my own personal health experiences and allow them to be shared publicly on the internet and in my friend's book. Sometimes, these attempts help me feel useful, but often I am missing the feelings of fulfillment and the intrinsic gratification. They often become repetitive and lack in the joy or feeling of personal achievement that I’m searching for. There is no doubt that I will continue to utilize social media to help others; It's just I'm trying to discover something more satisfying and meaningful to do as well. (Though, I'm not sure I will be successful in doing so.) Recently, I submitted the required documentation and evidence of professional development needed from the past 5 years in hopes of having my current teacher license renewed. My current license is valid until July. I have no intention of returning to the classroom at this moment in time, as I’m keenly aware that my body is not capable. Honestly, I’m unsure if I will ever be able to return to the classroom full time, though I still strive to hold out hope. However, in the meantime, I couldn’t face losing my teaching license as it would mentally and emotionally hurt me too much. It would be a sign of giving up to me, and would mean that I was a failure in regards to my lifelong dream and focus. Therefore, I’m fighting to at least keep a small part of my identity alive within myself, while hopefully protecting me from too much disappointment. Even though some of my dreams have been shattered, I still have so much to be thankful for. My life is not over. Therefore, I must find a way to accept my life even with the shattered pieces. Similar to dot art, up close each dot is just that a dot, just like each act in our life is simply an act. Often when looking at all the dots up close they may represent a mess of random dots with no resemblance of anything. However, when you take a step back, all the dots come together to create a beautiful work of art, sometimes even a masterpiece. Currently, all I see is a collection of random dots with no definitive image. One day, I hope to see them all come together to create something meaningful that will make God and my family proud. Swollen ileostomy stoma with pain searing through my abdomen. Strenuous painful contractions for shit (literally) not coming out. Testing my strength, patience, and perseverance, pushing the maximum scale level 9 or 10 easily from pain, with cold sweats, dizzy spells, and gagging from gastric uprising.
Near black outs from the pain and dehydration. Burning hot heating pad continuously against my abdominal and lower left back's skin, leaving marks behind while attempting to dull the inner torturous and horrendous pain. Hot baths, as hot as my skin can handle, to try and soothe my aching muscles from this hidden monster within. Standing and walking are nearly impossible as a result of the strain of pain. Massaging and squeezing the abdominal muscles with my tired worn hands to try and assist find some type of relief, even if only minimal. The conniving monster stretching, punching, slicing my insides, tormenting, shredding and butchering me from within. Literally, that is the best way I know how to describe this sickening, relentless, and persistent clawing pain. My body, stomach, and small intestines revolting, trying to send everything back up with intense waves of nausea and heaving. Assessing and questioning my resiliency throughout the day and night. Where is this particular monster coming from? Why did it choose to reside here, within me, at this time? Is it trying to make a permanent residence, even if immensely unwelcome, or stopping by for an appalling villainous visit? Each day become more and more ghastly, loathsome, and frustrating. I swear that it can't leave soon enough! I can't help but wonder what I did to cause it's arrival or what I can do to kick it out? I attentively and cautiously watch my body's reactions. Are there signs or signals that my body is emitting? Is there an SOS needed for emergency relief? My ileostomy bag, which seemed to stop or cease for a few hours earlier, suddenly began emptying like crazy. Releasing lots of water and gastric juices in large volumes frequently, which is abnormal to me for sure. The good news is that I know this at least provides proof that there is not a complete obstruction. Is it possible that I have a partial obstruction (blockage) in my small intestine or near my ileostomy? I guess there's a chance. If so, I can predict that the monster this will likely be a thief of fluids, but I have a chance to survive on my own. Praying that my body will not go down without fighting, I depend and rely on it to find the means to flood my intestines out. I know that the monster will not give up quickly. It will clasp to the walls, acting as a dam, or maybe even a demon, until eventually one of us finally concedes or surrenders. Realizing the impact of losing essential fluids so quickly, I help supply my veins with my IV hydration fluids. Tempting my fate, trying to deal with this situation on my own instead of reaching out for possibly pointless or unnecessary help. A recurrent question that always leaves me pondering, makes me vulnerable, and often causes me to rebel against my family's well-intended opinions. My ileostomy stoma, surrounded by a tender ring of pain in all directions, with deep muscle spasms, intense cramping, and stalling pain underneath, do not give me hope of relief anytime soon. How long can this monster keep surviving within me? To what will it give? How can I destroy the destruction that it leaves in it's path? I choose not to throw my white flag this time, choose not to call in for reinforcements, because in my mind, what would be the purpose? What could or would they actually be able to do that would end my misery any sooner? I am aware that pain medicines are not an reliable option, at least not ones that can truly mask or end this pain. Why? I know that they can literally make matters even worse or keep the monster lingering around even longer, as they will only slow my digestive system down further. That is definitely not my desire or plan. Fluids, thank goodness for IV fluids, I can run them at home, keeping myself hydrated, which is essential. If it weren't for them - I know that there would be no other choice but to make the dreaded emergency room or doctor visit. My chair, my heating pad, my terms, are greatly preferred to keep me as comfortable as being completely miserable from this severe striking pain can be. I will not risk letting a doctor or nurse minimize or dismiss this hellish pain. I'd rather take my chances alone until I meet my breaking point and feel as if I have nothing, no reserves left to lose or give. This action is not wise, and I definitely do NOT recommend or advise others to follow my path; But for me personally, it's the only path that I could accept for myself at the time. (This was written after seven days of continuous pain. I'm still not feeling "good" by any standards, am still experiencing quite a lot more than my normal level of pain, and keeping my heating pad attached to me, but thankfully small improvements have finally begun to make an appearance. Hopefully, this monster is completely evicted soon!) As my body's driver, I am more familiar with my body than anyone else. I know how it feels when functioning, what my comfort levels are or are not, and understand exactly how smooth or rough the ride can be. I, along with God, determine what's most important in my life, the purposes that I strive for, and the expectations I have regarding my functionality. How I feel and the quality of my journey, may often be more important and essential, than how I actually look or what the “blue book” value an outsider may perceive that I am actually worth.
My mechanics, or doctors if you will, help me manage and develop possibilities that may help improve how I function. Just like vehicles, I have many different systems that have to work together to be effective. I have various areas to take in consideration, some requiring more attention at time than others. Sometimes the adjustments we make may help, sometimes they will be trial and error, at times the changes may even create new additional problems, but all in all we slowly continue to make small calibrations in hopes of improving my overall condition physically and internally. In the automotive world, different fuels work better for different vehicles and burn the fuel at different rates. So doesn't it make sense that different people work better with different types of nutrition and hydration and similarly different people burn their fuel at different rates as well. Comparable to automobiles... If one places too much physical energy, or battery power, in controlling, maintaining, and meeting everyone else's expectations, they might drain themselves to the point where nothing is left for them to thrive on. In this case, the sole purpose of their life, the heart of the engine, which is to ride through the wind and travel along life's journey, may not be successfully accomplished. Too much energy spent on attempting to meet only medical expectations, without respecting the mental and emotional needs as well, can unfortunately come at the cost of leaving no energy available to enjoy an acceptable quality of life. Similarly, focusing only on one's emotional well-being and physical activities, whether enjoyable or not, without taking care of the medical needs (mechanics), can also create issues, as the body would not have the capability to perform efficiently. Like a defective alternator, our mind often produces symptoms that alert us of potential problems before larger problems begin to arise. It's main job, or purpose, is to make sure that the battery, our energy, remains charged so that like a vehicle, we can function appropriately. However, if we do not carefully monitor and control the energy expenditure it can become completely depleted of energy and will not be able to keep up with the amount required to successfully function and meet even basic needs. This is why it's imperative that we do not ignore our warning signals. Eventually, this can lead to the possibility of being left alone and stranded. Additionally, it can also create a domino effect of "electrical" problems that can ultimately cause a complete breakdown. Batteries, alternators, radios, and other vehicle components, like our bodies, can sometimes fail on their own with no warning or reason. However, there are ways that we can attempt to extend and improve the quantity and quality of our lives. Personally, I am currently trying to return to feeling somewhat comfortable with tolerating my health, like I was prior to my latest infection. It wasn’t perfect by far! I was still dependent on IV support and tube feeds, running on low energy, and dealing with symptoms daily. But, I was also starting to figure out how to function alongside my limitations, which meant that I could also reserve and discover a little energy to enjoy life with my family. When I felt consequences from choices I made, whether it be activities missed to recharge and refuel myself or trying to do too much physically, resulting in wearing myself down, I could at least say that those moments were worth it and acceptable. Currently, I am not always feeling like there is a “worth it” label for the struggles I’m having within my health journey. At times I'm missing the human element, losing my idea of self, and am extremely tired and frustrated because it can feel as if I am running on a hamster wheel, getting nowhere, just wearing myself completely out, for what?? I need and want a different view. I don’t want to be stuck in a wheel of hellish symptoms for nothing but worn out frustration. I don’t believe that I can continue to drive my life around and around a "roundabout". Where and how do I choose the right road to lead me in a tolerable direction? It just seems as if the harder I try, the sooner I lose energy for anything else because all of my energy expenditure is used to keep riding around and around in circles. How do I determine when it's time to take the risk of trying a new road or simply stopping for a break? I’m okay with taking time to recharge my engine, if it means I get some time to explore, move, and live life with my family as a result. I don’t want to drain every bit of energy, potential, and life away to be left with nothing. After a while the jump starts will not work anymore. Eventually, if I don’t appreciate and listen to MY body, all aspects of it, I will become completely useless and hopeless, forgotten and neglected, possibly even thrown in a local scrap yard. What then? Unlike with vehicles, it's not as if I can calmly and confidently walk into a store and buy a new battery or alternator. Furthermore, I can not trade in my body for a brand new one. It's MY responsibility to take care of myself and all of my imperfections, the best way possible, with the help of my family and doctors. Where do I go from here?
What do I envision my future to be like? I can question my medical issues, trivialize, ignore, avoid, or tolerate them, but that isn't all my life is meant to be about. Life is much more complex than just my symptoms. Will I ever physically return to feeling good on most days? Will I ever be able to nourish my body with the nutrition and hydration that it needs on my own, without requiring the use of medical devices, lines, and pumps? I don't know, possibly, but also likely not, but shouldn't that be okay? Does it matter how I fuel my body, as long as it gets fueled? Should I have to keep putting myself through torturous and painful attempts, just to try and be more normal in the eyes of others? It's such a tricky slope. At times, I honestly want to stop everything for a break and to masquerade in normalcy, if even only for a few moments. Of course, it always seems to catch back up to me. The consequences I face can be harsh, physically and emotionally. BUT, at least during those moments it's from my choice and fault. Sometimes, I put way too much effort at following doctor orders and trying to be an "ideal" patient, that I end up losing myself. I'm not saying that I shouldn't listen to or consider what my doctors say, but if it doesn't help or it if creates more pain and problems, then I have to figure out how to be REAL and concentrate on LIVING my life the best I can as ME. No one knows how it feels to live inside of my body better than me - so it's my duty to try my best to listen to what my body tells me. I guess it's kind-of comparable to the automotive world. I mean, for a vehicle to function properly and efficiently, it has to have not only a charged battery, but also an alternator to help keep it running smoothly. Have you ever payed attention at the various vehicles that surround you throughout each day? Ever considered the story that they tell? Some appear to be perfect with all the bells and whistles, but have only experienced the same predictable routes day after day to maintain their pristine image. Other cars appearing to be perfect, may actually run like crap, if they even crank up at all, simply because the owner failed to take care of the soul of the car. Instead, too much time, attention, and effort may have been placed on their visual appearance or internal mechanics were avoided or ignored. On the other hand, there are some vehicles missing bumpers, with dents and dings on the outside. Maybe even spots of rust. The interior may have holes in the seat cushions or cracks in a window. Likely, many of the "extras" that are desirable, but not essential, may not be present, but the vehicle runs like a charm. The purpose of the vehicle is still successfully achieved in the eyes of the driver. Then of course, there are some vehicles that are somewhere in the middle. They started out like every other vehicle, shiny and new with zero miles of experience. They function well for the most part, but may need more attention or support along the way. Maybe a tune up has been required more often than most, maybe some recalls requiring corrections, tires or other materials possibly replaced, a defective radio or aggravating imperfections ignored, an engine rebuilt, or so on. However, the SOUL of the vehicle is strengthened and treasured for the many memories that it has been a part of and for the positive experiences it has helped provide. I envision myself as being in the "middle" category. My personal body being like a vehicle that is no where near perfect, requires more adjustments and tune-ups than I'd prefer, but also is full of valuable memories it's helped create along my journeys. Spills on the floor from unexpected mishaps, scratches on the exterior from bumps and accidents along the way, replacement parts for areas that experience malfunctions, and creative alterations to maximize performance. Memories of traveling with and visiting loved ones, special events like graduations, marriages, new babies, and vacations appreciated. A vehicle filled with sounds of singing, crying, laughter, worry, and yes even disagreements, but also the comfort of knowing that whatever the outside looks like, whatever negativity my body has experienced, that I have survived and remained true with all of the memorable history and all of my soul. My body, a vehicle that may not be the most dependable or beautiful one on the road, a vehicle that other's can't comprehend or understand how it functions, (including me at times), but a vehicle that keeps on traveling in search of more positive and memorable adventures with my family. A vehicle that maybe one day will discover the secrets behind how to make it work more effectively and reliably on the inside or, who knows, maybe one day my vehicle will be revitalized, better than ever anticipated. Therefore, my current focus is not only on my outward appearance, but most importantly, on my overall functionability. Some days will be a bumpier ride than others, some much more daunting, but thankfully there will also be some days that I'm able to cruise along in the wind. Shawn Mendes just released a new song that I can relate to. His heartfelt and emotional song, "In My Blood" is so on point. Our contexts or experiences that lead to the feeling of giving up may be different, but it still pulls at my emotions. Everyone, sometime in their life, has felt like giving up. Whether it be because of anxiety from relationship mishaps, financial distress, personal conflicts, health, or a mixture of all the above, the thought of giving up seems to find a way to creep into our lives one way or another. I admit there are times that I have felt like giving up. Some more serious than others. Sometimes I've wanted to quit physically, sometimes emotionally, sometimes I have wanted to quit the whole damn situation. Sometimes, I simply want to give up on my search for improvements. I want to give up trying to explain or figure out a way to feel better. I want to give up playing with trial and error treatments and medications. I want to give up rolling around a damn pole or carrying formula around on my back. I want to give up playing the wait and see game. I want to GIVE UP because of these freaking painful and relentless symptoms that haunt me day after day. I want to give up because I'm frustrated from trying to help my body with needed nutrition, only for it to lead to a flare of sickening and intensifying symptoms. I feel like giving up because I feel selfish for trying so hard to feel better, when my sole focus should be on my kids. I feel like giving up because I'm tired of pretending to be strong. I feel like giving up because I fail at finding the right words to adequately describe how I feel. Sometimes, I want to give up instead of trying to connect with others. I want to give up because my health can make me so undependable and unpredictable. I want to give up because it can make me feel useless. I feel like giving up when I am forced to passively watch life's moments pass by. I feel like giving up when I continuously have to battle ridiculous fatigue for attempting to participate in life. I feel like giving up when tears start flowing due to feeling broken, like today. Feeling numb and dazed can make me feel like giving up as well. Hell, I want to give up for having the idea of wanting to give up. I want to give up because I can't seem to be me, even if I'm not sure who I'm suppose to be anymore. Giving up sounds so easy, but damn, it adds fuel to the next fire!! It makes me ANGRY after I feel like giving up. Angry, ashamed, and disappointed with myself for letting it cross my mind, even if only for a brief moment. When I speak of giving up, it doesn't necessarily mean I'm giving up on actual life itself. It may be giving up for a particular moment in time and then eventually reverting back to a more optimistic or more productive outlook. The key is that I may FEEL like giving up sometimes, but I DON'T GIVE UP. I CAN'T GIVE UP! I have too much to live for, to strive for, and owe it to God and my kids to keep giving my all, regardless what obstacles I face. Guess that's why I absolutely love Shawn's message and his lyrics....... "Keep telling me that it gets better. Does it ever? Help me. It's like the walls are caving in. Sometimes I feel like giving up, no medicine is strong enough." "Sometimes I just feel like giving up, but I just can't. It isn't in my blood. It isn't in my blood." Surviving life with chronic digestive illness is definitely not a desirable or easy task. To spend a few hours outside of the house, I’ll escape with a close family member, because they are appreciated, valued, and safe. They are aware of my illnesses and know the normal signs to watch for in case I need assistance or need to go home early, often before I'm ready to admit it.
Getting into the doctor and making it through a visit can feel like a marathon that I haven’t trained for. When diving into my current and most recent symptom lists and treatment plans, it can become exhausting and repetitive. Having an extra pair of listening ears, either one of my parents or my husband, can be extremely helpful and beneficial. Not only can they help express to my health care team what they witness, but they also are able to help me process what was said during the appointment afterwards. I don't choose to “opt-out” of life. My approach to living life in spite of illness just looks different that what it used to and different than what "normal" people would expect. I don't always understand or comprehend how I am feeling or why I am having certain symptoms, and am aware that it can seem twice as hard for an outsider to comprehend, as well as for the me to accurately explain. At times I do become quiet and withdrawn, but that's not always a bad thing. Sometimes, I’m being quiet because it is my true self, I'm not a talkative person by nature. I have always been more on the shy and reserved side. Other times, I may be quiet because I’m feeling miserable and don’t know how to, or can’t, verbalize what I’m actually feeling at the moment. It can often be hard for me to explain or answer a simple and common question, such as "How are you?" or “Is everything alright?” It’s just easier to give a simple ok or yes and brush it off than trying to adequately express my thoughts and symptoms. Often when I’m not feeling well, I choose to shrink back into my own world. This can be for different reasons. Sometimes it’s simply the best way to distract myself from the pain I’m feeling. However, I have learned from experience that hiding or withdrawing isn’t always the best practice, but sometimes it's the only coping strategy left to result too, especially when my other coping strategies aren't working effectively. I admit that I often avoid seeking help from other people, instead I try to depend on my faith, my individual strength, and my other coping mechanisms. Other times, I have no choice or run out of options. My continued symptoms, especially if constantly severe, may force me to rely on others and their aid, even though I try to avoid it if at all possible. I don’t like to let people down and when I get the impression that I do, or from my perspective I think that I have let someone down, I feel terrible, especially if it's been happening often. An occasional let down here or there is tolerable and acceptable, I don't expect to feel decent every day. I'm aware that bad days are destined to occur from time to time, for me quite regular. At times, I do find myself battling the "Fear of Missing Out" mindset, especially in regards to unique experiences with my children. I know that it's just a matter of time before their age and their personal life, is going to interfere, limit, or remove the possibility of having the opportunity again. Sometimes, I might need to spend time alone to re-energize, but when it’s due to a health flare, it’s not an enjoyable experience. Some of the activities I would normally do when spending time alone — reading, writing, watching tv, listening to music — are downright impossible when I’m feeling my absolute worst. As a result, the solitary hours can seem painful and endless. I have learned to hang on tight to decent moments and treasured time with family, no matter how simple, as they are what helps me survive the sick times and remain hopeful for tomorrow. I've learned that there is nothing wrong with taking one day at a time. In fact, sometimes I have to focus on just an hour or few minutes at a time, and that's alright. It’s important for me to have a small circle of people that I can depend on, that I can count on. It can be easy to feel like a mess, maybe even a burden to those around me. It's also not abnormal for me to cope with difficult situations or try to be a protector (of self and/or others) by simply putting up a wall, or pulling up my drawbridge. (Earlier blog about that can be read HERE). Yet, when I truly take a moment to consider the trusted loved ones and caring people that I choose to surround myself by, I soon realize that they don't feel burdened or disappointed, but rather are just concerned and want to help. In short, surviving and living with chronic illness is not impossible. There are positive moments and blessings along the way and a new appreciation for life that's often taken for granted can be gained. "Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind." - Bernard M. Baruch |
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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