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
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"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. Music is known to be cathartic for many people for many different reasons. Specific songs that speak to you in a unique and specific way. Songs that you can relate to for a variety of situations and emotions. Maybe there are songs that take you back to a special memory, that help motivate you, or that help you express love, sadness, or anger. I love NF's music from his early albums to his most recent, "The Search". His lyrics are packed full with emotion. Words slung together like a masterpiece. He has composed, rapped, and sung songs that help me process anger, negativity, and frustration. One of his earlier songs, "Paralyzed" helped me when I felt like I was completely numb and irrelevant. Hearing the song was comforting to me and assisted me in moving through some my lowest emotional moments. Below I have shared a few songs from his most recent album. These have been especially impactful and meaningful to me over the past year as I continue trying to maneuver through negativity that resides internally within me.
During the past few months I have been struggling with how to handle anger that I have apparently been suppressing within myself. It's tricky and challenging to face, release, get rid of, let go of this residing internal anger because it's not like normal anger that one may have toward someone else at times. When anger is created within a relationship with others, you can speak your mind, work on correcting the issue, or literally move on by distancing yourself from the person or situation. When you feel angry with yourself, your body, your mind, your illness, well there's not really a way to successfully distance yourself, yelling or arguing doesn't serve a purpose, and in some cases - there is not a way to "fix" to the problem. Currently, most of the anger I feel inside of me comes as a result of how I feel about my chronic illness symptoms and their impact on various aspects of my life. This feeling of anger is focused inwardly toward myself, which makes it harder to process. As we already know, being angry at yourself, especially when it's over a circumstance or situation that you can't change (in my case the impact of chronic illness on my life physically and mentally), there's not much you can do without it becoming counterproductive. Ignoring the anger or pushing it further down will not solve anything. In fact, it is more likely to just build up and then cause me to eventually "combust", explode or implode unexpectedly at the wrong time or place. Keeping the anger within and letting it "build" may allow me to feel better in the short term, but with time it will continue to dig away at me and risk making me feel much worse in the long run. Possibly, the reason that it has become more evident recently. According to Alison Stone (LCSW https://www.wellandgood.com/good-advice/how-to-let-go-anger/) “Anger is our system’s way of alerting us that we’re feeling something that we likely don’t want to be feeling.” No secret there, right? I definitely don't want to feel like I have no control of my body's reactions to illness or deal with the emotional lows that continuous symptoms can have on my temperament. I don't want to feel like a burden at times and don't want to miss out on activities with my family, especially time with my kids. I don't want to depend on a feeding tube for nutrition. I don't want to deal with the financial expenses of chronic illness. I just want to feel "normal", at least sometimes, without the extreme negative consequences that come around every time I attempt to "participate" in life. In the article linked above, Alison continued to explain how some negative emotions can lead to us feeling anger. For example, when we feel "hurt, betrayed, ignored, taken advantage of—anything that evokes vulnerability” anger can appear. “Any excessive negative feeling—fear, distress, shame, rejection—will likely trigger anger.” I have to admit that as simple and elementary as knowing how one is feeling sounds, I still have a difficult time labeling and understanding how and why I feel the way that I do sometimes. When taking time to consider what feelings I have underlying and coinciding with the internal anger that I've been experiencing, I can definitely find examples of feeling hurt and betrayed by my own body (and at times my mind). Being vulnerable is a very sticky and challenging situation for me. I'm pretty sure that personal fears and other negative emotions are also present, and at times purposefully ignored or pushed aside. And well, to be honest, when my energy reserve is dwindling or symptoms are heightened, it doesn't take much for me to get caught and trapped in a negativity spiral of sorts. But, I don't want others to be aware of when this happens, so I often suppress or hide the emotions, and in doing so the cycle continues until emotions can resolve on their own or become overwhelming. How can this be changed? How can I better handle and experience what I'm feeling without letting it bring me down any further? How do I "allow" myself to process anger and other negative emotions when I am the reason for them? When the root of my anger is a result of my illness and undependable body? It's not uncommon or unrealistic to feel frustrated or resentful when my body will not cooperate with me. There have been moments of time where I feel like I am at my breaking point, moments when anger festers inside of me. And since I have no way to resolve the situation, since I can't MAKE my symptoms stop, since I can't create more active energy, the uncertainty of my symptoms, the absence of answers or explanations, make me feel angry. I hate my body for making me feel like this. I am also angry because I feel like I’m losing hope when I feel my roughest, which is counterproductive. In response, I get stuck trying to keep everything as positive as possible in the eyes of other, even when part of me feels like totally giving up on ever feeling better. I have recognized and learned that sometimes just saying the words out loud to someone or even to myself, actually saying "I am angry! I feel angry! Why am I angry?" and thinking about it can eventually help relieve some of the tension that builds when keeping it all within. But to do that takes vulnerability, and well, I don't like that idea at all. Being vulnerable requires trust and can be extremely uncomfortable for me. Plus, even if I do want to talk with others, I have a difficult time finding the right words to express my thoughts and feelings. When I can find the words, writing (whether I choose to share it or not) helps. Therapy helps me face my emotions, even when I don't understand what's going on within me, because it provides me a safe place where I'm not being judged or ridiculed and I don't have to worry about saying something "wrong" that will cause new problems to arise. Lastly, music! Listening to music and lyrics that match my mood (singing along with lyrics that state how I feel when I'm alone) can offer me comfort and help release some of the negative emotions, such as anger and sadness. What's on the other side of anger for me? According to http://soulfulmed.com/blog-archive/2017/1/12/whats-on-the-other-side-of-anger, anger "gives us the false illusion that we are in control of the situation." Well, as much as we hate to admit it, there is very little in this life, not just chronic illness, that we have actual control of. The only thing we can do is process our emotions and keep moving forward. As stated in the article, "emotions don’t just go away, especially the unexpressed emotions. Emotions do, however, shift and change shape." Of course my goal when suppressing anger, frustration, fear, sadness, etc is that they will eventually just disappear. That I won't have to deal with them. However, since that is usually just not the case, no matter how hard I try to deny and hide them, maybe reshaping my relationship with this intrinsic anger would be more productive. Anger, while not desired, does have some positive aspects. Anger brings attention to the fact that the inner me thinks something is wrong or that something or someone is interfering with my personal plans and/or life. When I reflect on my anger, it allows me to see that I actually do care about myself in some respect? I'm still here and have an inner light that is trying to persevere and push me forward even when part of me, the part I get angry at, just wants to stop trying. Anger is trying to make me express myself and my emotions, trying to encourage or even forcefully create change. While I may not like the way anger makes me feel, it does help me realize that I desire something more than what I'm currently experiencing. (In my case - better health, more energy, and more respect to mention a few.) And while that may not sound all that important, it's the push that I need to keep running my feeds, running my fluids, seeking healthcare, and allowing myself to take risk for the benefit of happiness with my family. "It’s when we constantly suppress anger that it can start to ooze into our lives like a dark, heavy, sticky tar. Covering everything, drowning out light, suppressing the voice, taking all strength, and numbing all emotions." (Soulful Med link above). Realizing and knowing that this is true is why I am trying so hard to get a grasp on how to better handle my personal anger, especially when it is directed inwardly for things that are outside my control. Part of being human is experiencing the vast variety of emotions life offers, the positive and negative emotions. Therefore, understanding, accepting, and finding healthy ways to express these emotions, instead of spending a lot of energy avoiding the ones we don't like, is beneficial. (I'd love to read how you choose to process negative emotions you experience with chronic illness.) I have become accustomed to the rough choppy waters of living with chronic pain, fatigue, and more due to the uncertainty of day to day life with chronic illness. Waking up feeling awful, is not an unknown reality. Feeling decent enough to attempt living and not just existing, just to pay the cost later or without notice become overcome with symptoms is not unfamiliar either. Obstacles, pretending, making difficult choices, weighing risks over benefits, all are part of my now normal routine. It’s been over 6 years since I’ve been able to depend on my body’s response to experiencing life. Granted there have been some extremely rough waters to navigate. Unexpected swells that sent me rocking, some that have attempted to flip me under or cause me to capsize.
During these turbulent conditions I was able to hold on, and while difficult and challenging, even if momentarily knocked down, I was finally able to regain my footing and remain upright. Surviving the unsettled and dangerous waters to slowly drift into calmer waters. Dangers still lurking around, but also able to relax a little and enjoy some of the beauty around me as well. From sunsets to sunrises, warm sun on my skin, a few clouds here and there, and the clean fresh scent reminding me that life was/is still worth living. Stormy sea conditions were still present, and not forgotten, yet were not right on top of me, weren’t pounding on top of me, all of the time. I was actually becoming able to navigate semi-safely, within limits of course, to avoid some of the storms. At times choosing a path that led me to wavy, uncomfortable, choppy waters of short unwanted storms that I knew would eventually be put behind me and a part of my past. Skills and strategies were successfully used to control the impact that the unwanted mini-storms would have on me in the “big picture.”. However, at times, the paths before me were not as clear. There are times that I have been caught off-guard and seriously unprepared. Recently, I felt that I was on the right track. Not perfect by far, but more acceptable. Bounced around, fatigued, still symptomatic, but choosing certain situations that were more risky to be able to enjoy some views and experiences of life with my family along the way. Mentally striving and alive. Aware that I had to be cautious and careful, not completely smooth sailing, but definitely more manageable. Thinking that finally, with support, I was figuring some things out. I did not have to sit completely still, anchored down 24/7 to remain “safe”. I did not have to completely trade my quality of life for quantity. I could take short rides to explore my surroundings, relax, and authentically smile with a sense of achievement prior to returning to my dock to rest and refuel for a few days. These days or weeks of recovering, resting, refueling, and preparing for future outings were not only acceptable and understood by me, but encouraging and peaceful for the most part because I could visualize and look forward to future outings being a possibility while also retrieving positive memories while recovering. A reminder that the consequences were at least worthwhile. Sickness and limitations were still part of my life, every single day. But listening to myself, recognizing and avoiding most dangers and not expecting too much of myself, helped build more patience when having to ride out the windier wavy waters, whether expected or not, whether when living life or while anchored down. Just as I was gaining confidence and becoming braver, testing my limits more, and taking more risk - even if just for a day or two - a massive storm formed around me. It was as if I was trapped at sea, white caps crashing all around me, out of reach of a safe familiar place to dock. I was left feeling confused, scared, and lost. At times felt as if I had been capsized with raging waves surrounding me. My sense of safety removed, no correct choices before me. It didn’t matter which way I turned or considered treading, every direction had waves crashing hard enough to destroy me. It was almost as if I had to choose which path of destruction I preferred. Did I want to go against everyone else and fight for a new line just to risk my life for a dangerous life-threatening infection, or simply give in and literally become a shell of myself, just dangling in the waters hoping the current wouldn’t overcome me? Partially waiting for me to completely fade away helplessly, completely missing out on the chance to reasonably experience life in spite of everything else. Dangling in fear that I would lose my grip completely. Part of me actually wanting to let go. A larger part of me reaching and grabbing for anything that may help me remain above the surface while feeling as if I were slipping further and further under the water. Bobbling in fear of being stranded alone and empty, no meaning left, just here until I completely disappeared. Wanting and desiring so much more! Knowing that I can’t let negative thoughts, regardless of how realistic they may seem at the time, or my fears take control as the weight of them will without a doubt pull me under. Also knowing that allowing myself to hold onto everything that I’m missing, blaming myself for where I’m at or even for where I am not at, hating parts of me that I don’t understand and are unable to understand or control, would not be beneficial as they too would do nothing except pull me deeper and deeper underwater. Eroding the part of me that wanted to remain. Regardless of my knowledge, when dangling and treading in the cold violent unstable water, it’s easy to try and escape by holding on to anything that surrounds me, positive or negative. Most of the time, I try to reach for things that will keep me hopeful and above water. I know that I don’t want to drown, don’t want to die, and don’t want to give up. I just want relief. I just want to be me, the me that I can respect, share, and enjoy at times. The me that has meaning and purpose, can be proud of and at ease with. The me that can create positive memories with my children and family. The me that exists beyond my illness and symptoms. Time and time again, I know that there are only a few things that help me survive during these times, which helps keep me afloat when everything else seems to be hastily dragging me under. They are not immediate “cures”, they don’t offer me complete safety at the moment, but they help me through moments, or if fortunate, days at a time. Medically, and mentally, my current medical team, especially Dr K and Dr S help me stay afloat if I let down my guard and allow them. Spiritually, my faith keeps me going. Part of me still believes that everything happens for a reason. I know that God is present, and even though I may never understand what His plan is or why, I'm confident He has a plan and is always by my side. When His plan for me is over, then so will my earthly life. My family, especially my children, are monumental in keeping me afloat. THEY are what I think about when I’m at my lowest, thinking about how much they mean to me, how much I love them, how I don’t want to do anything that will cause them additional worry or pain than I’ve already caused them. Rethinking (and at times rereading or looking through photos) of the wonderful memories that we have shared together as well as the horrible ones that I have been able to overcome with their assistance (even if they have no idea of how critical they have been at pulling me through). But I don’t just think about the past, because sometimes, as positive as it can be, it can also be a reminder of times I miss so much. I try to balance my emotions by also thinking ahead to the future. While also tricky at times because it’s easy to get sidetracked with what I can’t or won’t be able to do anymore, I try to focus my eyes on the present and future possibilities of life with them. A desire to be here for each of them currently, experiencing life with them and through their eyes and accomplishments, as well as wanting to be here to witness their careers and hopefully have an opportunity to one day be a meaningful part of my future grandchildren’s lives as well, if I can make it that far. My children are my life and I am willing to survive any obstacle for them, no matter how difficult or painful it is on me. (Other things such as music can be a helpful distraction momentarily, helping me reground myself, deafen negative thoughts, and refocus on what’s really most important to me.) Honestly, IF it wasn’t for how much I love my kids and how proud I am of the people that they are and are becoming, if it weren’t for them wanting and needing me to be a part of their life (regardless of how I feel), I don’t know that I would even bother trying anything anymore. They accept me and love me for who I am, even if/when I don’t. Storms from chronic illness and life may knock me back and test my strength and will, but God, my family, and a couple of caring doctors are my lifelines if I just trust them and myself enough to reach out and hold on until calmer, more serene tranquil days can arrive. (I just pray hard that I don’t cause additional weight or strain on their lives in the process or meantime.) It's difficult to communicate to others, including to our families and ourselves, that there is no fix or cure for this awful disease, at least not yet. Depending on your individual cause, improvement may be found when the reason (other illness) is effectively managed. For the rest of us, at the moment anyway, it is all symptom treatment and management. Medicines to treat, or minimize, some symptoms that can in return create horrible side effects. Medicines to treat the side effects that were created by the medicines we were taking in hopes of alleviating symptoms. Surgery interventions that make us face a risk of making our illness worse in the off chance that it may possibly help use improve. I admit, I get frustrated with myself and others at times because I'm doing everything that I'm supposed to do, yet still sick. I know that too many of you can relate.
Everyday, I deal with troublesome symptoms. I used to be an active mother and teacher, a career I absolutely loved, but unfortunately had to eventually resign from due to my health. The evening of February 16, 2013 I went to bed as a "normal" 35 year old and woke up the following morning to an unexpected life of chronic illness. One where food was no longer a pleasure, but instead a nightmare of pain, nausea, and vomiting. I spent months unable to eat anything at all, in and out of ERs and doctor offices dehydrated, in pain, and in need for someone to listen to and actually willing to help me. However, I was unable to find any answers or relief with the exception of IV fluids, usually accompanied with blame for allowing myself to become dehydrated. According to them, I just needed to drink more water, what they didn't understand was I couldn't take in anything without drastic debilitating symptoms. It took numerous different doctors and two hospitals before I FINALLY found someone that understood the reality and severity of my health issues, took my condition seriously, and admitted me for the first of many hospitalizations. Even today, I still fear meeting new doctors as a result of some of the negative, degrading, and hopeless experiences I have been through. Thankfully, through determination and God's grace, I currently have an awesome medical team of doctors that authentically care about me, my quality of life, and that I can actually feel comfortable with trusting. At this time, the majority of my nutrition literally enters my small intestines through my GJ feeding tube I've had since 2013 and then exits my small intestines through the ileostomy that I've had since 2016, when I had my colon removed due to colonic inertia. Due to chronic dehydration, I have had a few PICC lines and PORTS. Both are types of central lines that are threaded through a vein to the entrance of the heart, but differ in the location they are placed and how they are accessed. I, personally, have a PICC right now to infuse Lactated Ringers at home throughout the week and for a couple of iron infusions when I am anemic. (Other people may use central lines for things such as saline hydration, TPN, antibiotics, and/or chemo.) Having central lines can most definitely be beneficial but also come at a great risk for central line blood infections and sepsis. I have been hospitalized numerous times for infections that required removal of my line, broad course antibiotics while inpatient at hospital for at least a week, sometimes longer, and then having a new line placed. I have had friends, likely you have as well, that died as a result of central line bloodstream infections. It is a scary risk, but necessary for some in order to have any kind of quality of life. Daily I deal with pain, nausea, and fatigue. The majority of all of my health problems can be labeled as chronic GI motility disorders, (recently being rebranded as Disorders of Gut-Brain Interaction by Dr Drossman and the Rome Foundation). The Research Enhancement Act is a bi-partisan bill that we are currently trying to have co-sponsored and passed in the House of Representatives. It is also known as H.R. 3396. If passed, it can help increase research and awareness for GI motility disorders including but not limited to gastroparesis, colonic inertia, GERD, achalasia, and pseudo-obstruction. Even if our problems are not cured in the immediate future, better awareness, more effective treatment options, and improved understandings of the causes and impact of these illnesses on our lives and our family's lives can. Our successful #DCgreen2019 Gastroparesis March on Washington patient rally, our Facebook live Virtual March on Washington event, and our attendance and participation in legislature meetings with IFFGD (International Foundation for GI Motility Disorders) at their Hill Day event show that together we can, and will, make our voices heard to make a difference. In closing, I want to encourage each of you to never give up. Keep advocating for yourself and/or your loved ones. Find a doctor that is right for you. If you're not getting answers or aren't satisfied with the care that you are receiving, keep searching. You know your body best. When plagued with chronic illness we learn very quickly how important it is to actually create a medical team, one that knows and understands us and wants to work WITH us on devising the most effective plan for our personal best quality of life. Communication, empathy, and compassionate care are all beneficial along with medical knowledge. Learn from your experiences, allow them to make you stronger. Remember you are NEVER alone. You will have difficult days, we all do. You may have days that you feel like giving up, I know I have. And that's okay! If you need to take it one day, one hour, or heck even one minute at a time - do so. B-R-E-A-T-H-E. Reach out for a supportive hand or a sympathetic ear when needed. Nothing is wrong with that. There's a whole community of people that care for you and are here for you, whether it's family and friends nearby, ones you connect with online, or both. I promise you are not alone. On more tolerable days, if possible, offer helping hands or ears to others. It doesn't matter if it's in person, by mail, over the internet, or by phone. Small actions can make a positive difference in someone else's day or even life, just like they can for you. Find a way to have your voice heard. Whether it's by social media, writing, talking, attending conferences or events, contacting your legislators, or something else - you have a purpose and you have a message that can make a difference. You may even discover that sharing your experiences helps you feel better mentally and emotionally. To me it helps bring the feeling of purpose and meaning to my life. I know that I have not written quite as often over the past few months, or to be honest, last year as a whole. It's not that I didn't want to, in fact I really felt the need to share and process the mental anguish that I have been dealing with as a result of my physical illness, medicine side effects, trust issues, and complete exhaustion. I just have not been able to find the right words to accurately express my thoughts and experiences.
During 2018, I tried to persevere through my low moods, discouraging seemingly unbearable days, fears, and sadness for the sake of my children and family. I tried hard to focus my attention on the "more tolerable" days and the creation of positive memories on those days, to help me survive the unfavorable and undesirable days. I attempted to be present with my kids and family as much as I could, accept and respect my body's limitations, and pursue the highest quality of life that I could, regardless of the side effects I would face later. (And yes, they have been and continue to be brutal and last for days.) But what is the point of being alive if I don't allow myself the opportunity to live and experience moments with my family? During 2018, I lost touch with an important part of me. I spent months feeling numb and lost, but during the foggy moments I still tried to remain true to my goals and intentions. Yes, it was incredibly hard and at times I wanted to quit, wanted to give up, wanted to disappear - but the love from God and my family, as well as some a few close confidants, didn't allow me to drown. They remained by my side and gave me the encouragement to hang on just one more day, to strive for the beautiful moments in life, and to relive the meaningful and special memories in my mind when days seemed too dark or painful to continue. The final month of 2018 ended up being a realistic summary for my entire year. Health issues. Mental worries. Emotional lows. Physical and emotional exhaustion. The feeling of living in a daze. Injuries, from falls, that I was determined to handle on my own. Ignoring medical needs momentarily as I tried to "figure it out" or "allow it to fix itself" on my own. Challenging and taking risks outside my comfort zone, in search of treasured memories with loved ones. And days of consequences that made me rethink and appreciate the meaning behind each of my chosen actions. I ended 2018 with my kids, husband, and dad at a football game. My youngest kids are high school students, avid sports fans, and have attended numerous ball games with their father and grandfather. However, I decided to attend this game with them. It was the very first time that I have ever been with them to a football game. Was it easy? Definitely not! I was beyond exhausted. I was nauseated. My body ached all over. My heating pad was necessary at the hotel. I humbled myself and agreed to riding in a wheelchair from the parking lot to our seats. With the exception of the game we remained and rested at the hotel. (Which admittedly was more than worthwhile, because it helped me reserve that much needed energy to sit at the game and bring in 2019 with them by my side!) Due to my feeding tube splitting and leaking, I had to go a few days without running my tube feeds - which added additional strain to my body. My IV fluids were infused in the hotel room and during the car ride. My body definitely hated me, my mind questioned and partially criticized me, while my mind, spirit, and heart were full of love and pride! My life is not ideal, that is for sure, but miracles still surround me, and for that I am most grateful. 2018 has had its ups and downs, achievements & letdowns, laugh & tears. Every year will. Emotionally & physically I have been challenged, but through it all God & family have remained steady. My goal for 2018, will continue throughout 2019; Striving through difficult days with the memories created during the more tolerable ones. One thing I’ve learned through my experiences, through saying goodbye to friends & loved ones that have rejoined Christ in Heaven, is that life is too short and treasured memories are too important to waste. (Even if I have to deal with terrible physical consequences afterwards.) Our online GP support group said goodbye to 50 young souls in just 2018 alone, 50, and that does not include any of our friends that passed on prior to 2018. I'm sure that there are probably others that we are not aware of. A friend I was close to in high school and another school classmate ended their lives at the age of 39 and 40 a few months ago. Family members and family friends have passed away this year, some of which were unexpectedly, due to illness and/or accidents. No one is promised tomorrow. Happy New Year everyone! I'm sure that we all will have hard and difficult days during 2019, but may we also be blessed with so many more enjoyable ones to share with our loved ones and friends. I recently discovered a new artist, Stine Bramsen. When listening to her music, two of her songs, which I have included below, really caught my attention. I know in reality that the her lyrics and messages are suppose to be different from my interpretations. I am aware that she is singing about relationships and the challenges that can occur. However, the way I personally relate to these songs, are not in regards to a romantic relationship with another person. Instead, they make me think about the relationship I have with my own body and chronic illness. You see, to me, her song "Not Giving Up" is an encouraging voice to my own personal health challenges. It represents the way I feel. It reminds me of how a conversation between my inner spirit and illness may go. No matter how hard I try, I can't get away from my body. My body, sometimes physically from chronic illness symptoms, sometimes mentally from being exhausted of coping and dealing with chronic illness on a daily basic, creates pain that I want to escape, but can't. My body, physically and at times mentally, can be, and often is, my body's worst enemy. My body is ALWAYS trying to fool me. It tells me that it's hungry, needs nutrition, needs hydration, but when I attempt to provide it with what it needs, my body betrays me. Instead of just using the nutrition to help me, it creates crippling abdominal pain, bloating, nausea, and at times heaving or vomiting. My mind also fools me, persuading myself that this bite or swallow will have a different, more tolerable result, until I actually follow through. Then BAM! Consequences arise. Not to mention how little I can actually handle physically, before relentless exhaustion overcomes me. How the hell do you trust a body that is constantly deceiving you? But, I have to stay. I can't trade my body in for a new one. The scars of my chronic illness are all over me, internally and externally. Scars from numerous surgeries and procedures. Scars from painful and negative medical experiences, hurtful judgmental comments, medical appointments gone bad, medication related side effects. Scars from missed opportunities with my kids whom I love immensely, and the loss of identity from leaving a career that meant so much to me. Scars that remind me of the path my body and health have led me down, scars that have an impact on how I view myself. I can't deny - there are times, low challenging and terrifying times, when I want to be completely be done with my body. Times that I have contemplated how I can end the pain because it just won't stop! Nobody cuts or harms me the way that my health has. Illness just won't give up on destroying how I feel. At the same time, part of me is resilient and won't give up either. My soul is not giving up, it fights to put illness in it's place. I strive for better physical health, while also respecting my need to feel ALIVE, to feel like I am living and not just existing. My heart and voice are pushing me, not letting me give up on myself. Because of my family (especially my kids) and God, I keep living. I'm trying to let go of the grip pain has on me, let go of the bad memories, let go of the guilt that illness has made me feel, let go of the power that disappointments from being sick has made me feel, let go of the negative impacts being ill has had on my life and the way I view myself. I'm attempting to learn how to let go of the things that I can not change or control, while not giving up on ME. I am appreciative of others that have not given up on me, and that have in return helped me to not give up on myself either, even if my illness itself will not give up and disappear. I thank my loved ones and the caring doctors that have been an essential part of my journey. Unfortunately, not everyone has been encouraging, understanding, or supportive. There are people, some that know nothing about me, and some that were responsible for helping me, that bring me down with their irresponsible judgements. Admittedly, I too, have passed harsh judgement on myself. Most of the time I can forget and forgive those that pass judgement because I know that they don't know what life behind my front door looks like; but the hurt of being judged still appears and is still unnecessary. Even more so, the heartache of people in the chronic illness community, being denied help or dismissed from medical doctors or nurses that lack compassion or willingness to truly listen is inexcusable; Which brings me to the other song I found today by Stine Bramsen, "Don't Judge Me." Cruelty and judgments, even when deceivingly done behind my back, hit hard. Not only does it devalue or minimize the impact of my illness, but it also sends me down a misguided path of shock and despair. Just because one does not have the capability of feeling my pain, feeling my nausea, living the negative consequences of my illness, or witnessing the decisions and choices that I make (disregarding the costs that I will have to accept later in exchange), does not give them the right to judge. Trust me, I would have no reason to pretend or exaggerate. There are no gains that would make it worthwhile. Why would I choose a life of torture? I can't undo the painful truth of how horrible my body feels, I can't undo the honest truth about how much pain food causes, I can't undo how much fatigue I experience, I can't undo the amount of nausea and lack of sleep that I endure. I can't undo the reality of my health. I can't undo the harm that some judgments have on my spirit. As Stine's beautiful and powerful lyrics say, "I can't undo the painful truth, I can't undo, God knows I wish I could. Don't judge me, cause I can't have, I can't have your blame on me, cause you were not there, you were not there; so don't judge me, I can't take it anymore." Sometimes, I "need to hide my pain away" to try to reclaim and live life. It doesn't mean that I am not hurting. Sometimes, when smiles and laughs are seen by you, inside I feel like I'm crumbling apart or that my insides are about to explode at any moment from pain, or feel like I will soon begin heaving by the aromas around me or intense nausea, but I choose to hide it in order to help those I love enjoy moments with me. I sometimes hide my miserable symptoms to strive for something meaningful and cherished in my life. I choose to hide my symptoms, to protect others from worrying about me, or in attempt to protect my own mentality and spirit, if only for a few moments. So unless you live with this illness, you will never know how life-changing and terrible this illness can be on one's life. "You'll never know how I hurt inside. You'll never know how I've cried and cried and cried." Unless you live with the daily pain and consequences of chronic illness, don't judge me or others. "I don't deserve you hate on me." Neither do they. Trust me, those closest to me, know that "I am hard enough on me" already. I already downplay and minimize the symptoms I experience more than I should. I judge myself harshly by what I can't accomplish but desire so much to do. I judge myself for what I miss out of in life (especially when it comes to my kids), for what I have had to give up (like my career). I judge myself critically for why I am not better yet. I judge myself unkindly for judging myself on things that are outside of my realm, outside of my control. So please don't judge me, I can't take your judgement or blame anymore. |
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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