This past weekend I remained home while my family went away for a weekend trip to the water park. While I don't like being left behind from vacations, I welcomed a little bit of "me" time. As crazy as it sounds, I'm still trying to physically recover from my outing earlier this month. Well that and the difficulty sleeping due to numerous nightmares each night over the past month or two. My lack of patience and levels of irritability have increased, which to me is a cue that I'm in need of some quiet 1 on 1 reflections.
During my necessary "me" time.... I enjoyed bonding with our new kitten. I attempted to journal and blog - both of which were unsuccessful. After deaccessing my PORT, I took a couple of long relaxing hot baths. I turned up the speaker volume and listened to my favorite songs. For some reason, the above just didn't quench my thirst to feel "normal" enough. I have spent so much time trying to be extra mindful and careful of meeting my medical needs and preventing (if that's even possible) undesirable symptoms. I've tried to stick solely to tube feeds, IV hydration, and only extremely low volumes of liquids. Quite literally, I was and am sick of playing it safe, to only feel discouraged and abnormal. I wanted to feel at least semi-normal. I wanted to take a chance at seeking and maybe even achieving some non-sick normalcy, even if it meant that I would have to face some consequences. However, at the same time, I was well aware that I didn't want to risks stupidity or create any harm. The thing is, I don't know what I am expecting or in search of. I know that there's a large spectrum of normalcy. Not everyone is the same. My normal is not the same as the next person's normal or the next. We all have our own "normal" which constantly evolves with time. Blah blah blah...... But what about when you look within yourself or at yourself from a different perspective and you no longer know what your normal is supposed to be like anymore? What about the times when you feel like a stranger in a stranger's body with a stranger's mindset? How is any of that normal? How do you accept your normalcy, whether it's desired or not, without completely retreating or withdrawing from yourself and others? Because to be quite honest, I'm exhausted from trying to be normal in everyone else's eyes while also trying to make myself understand and accept that my current normal can be ok.
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More recent deaths, both in my physical and online communities, cause me to contemplate how I can better improve the quality of my life. Anyone can become sick or sicker at a moment's notice. We ultimately do not have complete control over our health, no matter how much we may try. Similarly, tragic accidents happen everyday. We can try and take preventative measures, but those measures may or may not be enough to provide us more time with loved ones while we are here on Earth.
Realizing this confirms just how important it is for me to make each day count for something. My goal is to feel as if I am living, not just existing or wasting space, so when it's all said and done I'm not full of regrets. This is easy to say, harder to do, especially when attempts to "live" can cause immense fatigue or drastically increase my symptoms. Achieving an acceptable level of balance that respects all areas of my health (physical, emotional, and mental) while also limiting frustration, minimizing undesirable consequences, and reducing regrets is undoubtedly extremely challenging and even troublesome at times. So what can I do? How can I encourage myself to redefine my life with illness without sacrificing too much of me? Below are my current plans of action... Foster or participate in positive moments to reflect on with the kids Maintain memories by regularly writing in personal journal Work on completing the ALL ABOUT ME journal to be passed down to my kids Create Picture DVD videos for each child from old picture film canisters and memory cards Focus on and appreciate all of life's blessings, no matter how small Fight for the best possible healthcare Spend quality time with kids and family Stay up-to-date with research so I can make best educated choices Help others along health journey by sharing awareness, answering questions, and offering support Cuddle time with Pets Consider how I can continue to grow as a person (hobby, books, writing, online class, etc?) Have courage to live life true to me not others' expectations Take time to make conscious decisions each day that fulfill my personal needs/roles Take reasonable risks while accepting and being patient with myself during the consequences Live life less seriously to enjoy more moments in the moment Respond to myself the same way that I would treat a friend going through something similar Undoubtedly, no matter how devoted I am to the above goals, things will not always turn out the way that I expected or wanted. I will never be able to eliminate or avoid all regrets. Bad decisions will sometimes be made as I'm only human. However, when looking back with 20/20 hindsight, I need to remember why I made the decisions I did and remind myself about what my intentions were at the time. Even if I don't like the end results after some of my actions or choices, if they were made with the right intentions in mind I should not burden myself with any regrets. Living life with chronic illness does not mean life will be full of regrets. Life is what we make of it. I was challenged to write a letter to myself from the future me. Here's my best attempt.
Dear Current Self, I know that these past 4 ½ years have been physically demanding due to chronic sickness, numerous tests, medication trial and errors, hospital stays and a variety of procedures and surgeries. You have been pulled through the ringer. You’ve experienced unimaginable pain, fatigue, and nausea while also trying to determine how to fuel your body with much needed nutrition and hydration. These memories do not go away. They will continue to reappear as time passes by and your symptomatic illness continues. Just remember that there have been some improvements along the way. These obstacles have brought a lot of confusion, concern, and hurt, but have also made you realize the strength inside yourself that you may have never known existed. (I know, sometimes you feel the exact opposite, especially when the severity of symptoms increase to heightened levels or remain constant for long periods of time.) Those days and nights of screaming and squirming around in intense indescribable pain due to colonic inertia are gone. You are no longer required to take every possible laxative on a daily basis, adding to your discomfort, just to try and find a little speckle of relief. That was taken care of by you and your magnificent GI doctor, because he took the time to actually listen and care about you. How awesome is that! With his help, you’ve also improved hydration with home infusions and have been able to decrease the number of hospitalizations. The purpose of this letter is not to remind you of what is going wrong, just as it’s not to imply that things should have been or should be handled differently. You and your medical team are doing the best you can and what is perceived to be in your best interest during each specific moment in time. For the most part, you have been fortunate to have received some effective and compassionate medical care from doctors and nurses. (Yes, I am also aware that has not always been the case.) Unfortunately, you will always run the risks of having medical providers that do not listen, do not believe you, are unwilling to communicate, don’t appear to care about you as a person and/or do not value your quality of life standards. These unfortunate situations do occur, but, keep in mind the phenomenal medical relationships that you have had with your favorite all-time doctors and nurses and how much of a positive difference having them on your medical team has been for you along this long and difficult health journey. In the future, if you find yourself not feeling valued as a patient or have issues placing your trust in them, stand up for yourself and search for a physician that better meets YOUR needs. You deserve that! I see you trying, trying to stay realistically optimistic even when dealing with shattered plans, piercing physical pain, and relentless nausea (usually hours after oral attempts). I’ve seen you withstand the emotional strains that you have been through as a result of your chronic digestive and nutritional issues. I’ve heard you reach out for help in prayer or songs when part of you wanted to completely let go and leave all of the physical and emotional pain away forever. When you wanted nothing more than to quit on life because the sickness, symptoms, and it’s impact on your life felt too overwhelming to comprehend and face. I’ve witnessed you feeling miserable, unsteady, confused and sad due to the effects of your continuous illness. You’ve tried hiding your health and emotions from others, including yourself, in an attempt to avoid dealing with sickness. The reality is that you can not make the illness go away, avoiding it gets you nowhere. Death, whether from this or something else, is inevitable. You’ve felt the sadness of watching so many young people, some actual friends, die as a result of complications from gastroparesis (23 already in the past 5 months from just one of your support groups. Most of which were unexpected.) So many more are struggling with their health, having a difficult time finding appropriate medical and/or family support, even on hospice or palliative care. With that in mind, you understand the importance of convincing yourself that amongst all of the negativity of your chronic ailments, you also have many positives to strive ahead with and for. That’s the purpose of this letter, to encourage you take the best care of yourself - in all aspects of your life. You can begin by being kind to yourself. Stop criticizing and making unfair judgements against yourself. Your illness was not created by any fault of your own. You have done well at trying to understand and help your body heal, or at least function better. Unforeseen changes have occurred to your body, some of which at times impact your self image. These changes have been essential in keeping you out of the hospital. They have assisted in improving your quality of life, even though you still have a ways to go. Yes, there will be times that you hate how your body feels, and functions as well as it’s appearance; But it’s the only body that you have. God has provided you with this vessel. You may look and even feel like an alien or machine at times - but look at all the good things that come along with your adaptations. You want others to accept your differences? YOU must own them, accept them, and take pride in them yourself. Not sometimes, but ALL the time. Trust that you know when something is not right, trust that you know what your body and mind needs better than anyone else, and trust that you will reach out for help when you need it. You may hear or see that some people accuse you and others of sharing your health stories for sympathy. If this is ever the case, don’t pay it any mind as apparently they do not know you or your heart. You know with all of your being, that you don’t want to be the center of attention. You could care less if anyone outside your small circle of family and friends knows your name or individual story. Sharing your story with others comes at a risk. It’s outside your comfort zone, but that’s okay, just stay focused on why you do it - to help others that are facing similar struggles and increase awareness so better treatments and more research can become available, if not for you, for the younger generations. Follow your heart that’s all that really matters. If you listen to your heart, God will guide you in the right direction. Self-worth and purpose is essential to maintain when dealing with illness day in and day out. Some days you are going to withdraw yourself, hide behind a “mask”, want to be invisible, or appear “normal” - and all of that is okay. It’s perfectly fine to take it day by day or moment by moment. You have permission to authentically share your journey one day and the next be completely silent if that’s what your mind and/or body needs. You are not expected to be strong, courageous, and happy all day every single day. You are allowed to experience any and all emotions. The key is to maintain a healthy way of coping with a variety of emotions and all of their levels of severity. You have already discovered how beneficial writing and blogging is for you. Keep in mind that new ways of coping may appear along your journey as well. My advice to you is to live the rest of your life to the best degree possible. Not everyday is going to be a decent day. There are going to be bad days when you struggle. There are going to be days, possibly more than you anticipate or want, that are dark, scary, sick, and painful. There are going to be days when you hate yourself or feel as if you are alone and drowning. There are likely going to be even more days that you are weak, frustrated, defeated, and extremely fatigued. I’m sure that there will be days that you are hopeless and fighting with all of your might just to survive the present moment. Most likely there will be days when you feel like giving up, when you are unable to see anything but dreary days ahead again. You’ve been there before, and guess what, you are still here! You have persevered or managed to endure all of the challenges and obstacles that have come before you. Whether it was just taking one breath at a time, screaming/crying through tremendous pain, withstanding incomprehensible nausea, or educating others, you always find a way to keep moving forward. Sometimes it was by singing along with your favorite song lyrics, taking long hot soaks in the tub, listening to encouraging words from loved ones and friends, or simply laughing at the craziness or insanity of it all. Why? Because you realize that not everyday will be horrible. There will be days that may not be perfect, but manageable enough to push through and actually LIVE. There will be good days and even magnificent days ahead as long as you keep holding on. At times your days may feel as if they are constantly full of thunderstorm after thunderstorm. Yet, every storm will eventually calm at least for a little while, the rains will let up, skies will brighten, rainbows of blessings will even be visible between some storms. These brighter days are the moments that you must take advantage of, must live for, and must remember. The calmer days, even if they are damper than you’d prefer or drizzlin’ with pain, nausea, or other symptoms, need to be LIVED. These moments, when lived, will become extremely important to your mind and heart. You have to keep living, not just existing, but actually living! You need to continue to take reasonable risks, just not too risky, of having fun and creating memories with your kids and family. There is a reason that you are here, and I can guarantee that the reason is not to just sit back and let life pass you by while waiting to feel better. Fight to enjoy the “better” days, even if it takes days of preparation or recovery. At the same time, be mindful of what your body is telling you. (I know - it’s a very thin and shady line - and unfortunately, you will not always make the right decisions. Oh well, that’s life, right?) Will you have to make sacrifices? Of coarse! But you don’t have to always sacrifice YOU! Will you have consequences to pay? Yes! Only you can determine what’s worthwhile at the time. Will there be limitations? Absolutely. Energy, health, and strength will all play a part everyday.. Will your actions complicate or make symptoms worse? Likely at times, but what if not always? Just remember these few key points….. You and your life are not defined by your illness or emotions. I know that they play an undeniable part in your day. Lots of times your emotions become more complex to handle because they are the result of physically feeling horribly sick. I know that they help make you who you are. But not them alone! Your dreams, intentions, heart, goals, outlook on life, and faith make you who you are as well. Reflect on your emotions and desires. Whether by writing, blogging, mindfulness, or talking with others - be open to communicating how you feel and why you feel that way. Respect your emotions, all of them, Positive, negative, happy, sad, fright, guilt and all of the inbetweens. ALL of them matter because ALL of them make you who you are. Don’t ignore them. Don’t push them to the side. Embrace them and let them help you grow. Allow them to help you be the best you possible, allow them to strengthen your relationships, including within yourself, and allow them to keep you humble and genuine. BREATHE - It’s okay if that’s all you can manage at the moment, hour, day, or week. When you catch yourself in a negative frame of mind use that as a clue to rethink and redirect your thinking. Label the emotion and then ask yourself what you can do to make it less painful or more manageable? You are quick to encourage others, it’s okay to encourage yourself as well. Surround yourself with people that are there for you, people willing to provide you the encouragement you need when you are at your lowest. It doesn’t matter if they encourage you in person, online, or over the phone - as long as you have people that care about you and that you feel comfortable enough to turn to when times are most challenging, people that can bring you out of the darkness by reminding you of your strength, faith, and value. Have a purpose for each day, whether it’s in the form of self-care, fun, or simply helping others. Find a way to keep the purpose fresh in your mind to look back on when you question why you are trying so hard, why you are still existing, and why you matter. I suggests that you take a moment each day to jot down your key purpose for that day. (Possibly on a calendar, so it’s visible.) Sometimes your sole purpose for the day may be resting, recouping, or attending necessary medical appointments. Other days it may be observing your child’s ballgame or being present at a school function. Another may be comforting a loved one that’s going through a difficult time themselves, helping with homework, or running errands. But the point is, that you can and will do something meaningful each and every day! You’re not worthless, regardless if you feel so during the seemingly endless bad days, weeks, or months.. You have and can continue to make a difference in the lives of others, you just have to protect and take care of yourself along the way. You must be careful to pace yourself and not try to overextend yourself. The quality of relationships and experiences are far more important than the quantity. CHOOSE which activities are the worthwhile to you and your family. The purpose of your day does not have to last all day long - it can be short in duration, possibly lasting only an hour, yet still be meaningful or even essential. Search and Strive for true happiness - not just satisfaction. Take the time and initiative to ENJOY life and create treasured memories with family whenever the opportunity and mood becomes you. Sometimes you have to be willing to tackle the consequences later to discover the joy, happiness, and experience in the moment. Continue to express Faith with appreciation and express authentic gratitude for all that goes right. Trust that everything has a purpose and a positive side. Find peace with your decisions, choices, and yes, even mistakes!!! Accept that your illness impacts your life in more ways than you’d ever like to admit and without a doubt more than you ever want it to be, BUT there are still ways to enjoy life and make it meaningful and purposeful . YOU CAN HANDLE THIS!! You WILL do this! You WILL push the limits, you WILL fall, but you will also GET BACK UP. When it comes down to it, we can’t change yesterday and are not promised tomorrow. All we have is TODAY, so make each day count. Your parents, kids, and even yourself are not going to get any younger. Time is not going to stop while you try to feel better. You are going to have to “bite the bullet” and fight to remain ALIVE not only physically, but emotionally, and mentally as well. You're going to have to communicate and work alongside your medical team, including new ones, in determining and creating your healthcare treatment plans. If you successfully remain determined and stay on the correct track then you will be rewarded. Every time that you witness the joy in your children’s voices and eyes, attend graduations and weddings with tears of pride, observe the miracle and feel the little fingers of your future grandchildren, are reminded of loving memories shared with loved ones across the years, and feel the magnitude of love from God, your family, and even friends and students that you’ve had the opportunity to come to know along the way, you will realize exactly why……….. YOU NEVER GIVE UP and why YOU KEEP FIGHTING! Thank you for having faith in me! From the future version of yourself Living with chronic illness can be extremely frustrating and complex. All of the sudden, life no longer appears the same. It takes on a completely new view. Simple things that were taken for granted are now appreciated more than ever. Not only do you have to adjust to life style changes, but your outlook on life in general may change as well. At times it may even feel like you are no longer you, almost as if you are a character in someone else's story. Regardless of who you were when your illness began, all of a sudden you begin to become an "expert" about yourself and your condition. New knowledge about every aspect of your illness (illnesses) becomes a part of your everyday language; diagnosis criteria, medical terminology, symptom descriptions and explanations, diagnostic testing, treatment possibilities, coping strategies, etc all become familiar common day to day discussions. Additionally, the relationships you have are often altered. Some friendships are lost as new ones are created. Some connections are strengthened where as others diminish. And that's ok, because you are no longer identical to the person you were before your illness. Sometimes the paths we are traveling do not coincide with the paths that others are traveling. This is not always an easy concept to accept, but with time you will be able to determine the people that are necessary to accompany you along your health journey. Through experiences you will be able to discover which relationships provide you with the encouragement and support that you need. Be patient and remember that you're not the only one that is facing a change in their life. Everyone has their own circumstances to navigate. Everyone's experience will differ, even if the medical journey has many similarities. The dynamics of friendships, families, medical teams, and colleagues as well as individual personalities all play a part. I could go on and on all day describing the way that my personal relationships have changed. Today, however, I want to focus on how the relationships that I have with medical professionals and my communication with them has been influenced by my illness. During my childhood and early adult years I did not put a lot of thought in characterizing nurses and doctors. Basically, if I needed a flu shot, had an injury that needed to be looked at, was dealing with a cold, or sick with a "common" virus that was being passed around, I could simply find a doctor to visit. It really didn't matter to me which nurse or doctor I saw. There was a blanket trust that they would know what was wrong, share with me how to treat it, and then send me home to recover and feel better. I did not understand the importance or value of remaining with a specific doctor or taking the time to create a bond. During this time any nurse and any doctor could meet my needs, whether they had seen me before or not. But now that's not true. When plagued with a chronic illness you learn really fast how important it is to actually create a medical "team". A team that knows you and understands you. A team that will work with you to devise a "game" plan. Communication, empathy, and compassionate care all become necessary, along with their medical knowledge and expertise. It's no longer a quick in and out, routine, easy fix. The relationship with your physicians and nurses matter now. You can no longer survive with just "any" doctor. The type of relationship formed can be extremely powerful, possibly even a game changer or life saver. Unfortunately, assembling an effective medical team that meets your personal needs is not as easy as it sounds. Personalities can clash and the type of care that you each expect and envision can differ greatly. A single doctor and/or nurse can completely ruin your perspective, can be dismissive, discouraging, and make you feel as a failure or lost cause. On the other hand, a single doctor and/or nurse can be the light on your darkest days. They can offer encouragement and provide you with hope for the future just by taking the time to show that they care about you as a person, not just a case number. I am fortunate to have a medical team that I trust, respect, and am comfortable with. In my heart, I truly feel as if they are here to help me along my health journey. They may not have all of the answers, they may not hold a key to the cure, BUT they ensure me and show me with the actions they display toward me, that they will not give up on me. I believe that they will continue to help me search for improvements regarding my health. They listen to me and actually seem to be invested in figuring out how we can work together to make my life with illness more tolerable. Sometimes, I'm in awe at how proficient and knowledgeable they have become at understanding me. When you realize that you are surrounded by doctors and a nurse that can uncover the truth about how you feel (even when you're trying to be strong and brave), then you also realize how comforting it feels to know that you are in great hands. Unfortunately, not every doctor or nurse fits this criteria. In fact, it can be a rarity when dealing with chronic illnesses. However, my current medical team is phenomenal! I can not deny that I feel blessed with the care that I currently receive. I appreciate and value my medical team more than they will ever know, though I do attempt to express my gratitude with them. I may still have plenty of health struggles, but I am relieved knowing that my best interests are being looked after, at least for now. Even with a phenomenal medical team, I still have challenges. If you've read my previous blogs, it's no secret that I have a difficult time being completely open about my symptoms and how I feel. All too often, I hide how awful I feel and have trouble expressing the true severity. My family and medical team are well aware that I tend to downplay my symptoms a lot. The majority of the time, I remain quiet in an effort to remain positive and to keep from annoying or bothering. What they may not know, is that I have never been as open with anyone, especially doctors, as I have been the past couple of years. I'm still on uncharted waters. I really want to be completely honest as soon as issues arise, but emotionally I second guess myself. Before messaging or calling them, I spend hours, days, and sometimes even weeks trying to determine if it's worthy of bothering them. I'm not trying to be stubborn, but instead wanting to demonstrate my respect by not wasting any of their time. I value their support so much that I do not want to chance pushing them away, irritating them, or becoming known as a constant complainer. I try my best to make sure that I keep them updated, it's just that sometimes I'm not as quick or as clear as I should be. If I'm going to contact my health team, I want to be sure that it's important - not something that I should be able to correct on my own and not something that will improve on it's own if given enough time. My doctors, home nurse, and family members have done everything in their power to encourage me and persuade me to be completely open and not hide or minimize my struggles. In an effort to better communicate, I must first determine how to distinguish the difference between updating/sharing concerns (which is desirable) and complaining (which I want to avoid entirely). I believe that updating and keeping my doctors informed is essential in order to make progress and improve my quality of life. If they ask, I do always try to answer as honestly as possible. I acknowledge that I need to reach out if a new issue arises, if I'm feverish or experiencing chills, or if the severity of my symptoms intensify for days after days and are not improving with our current treatment plan. Updating can be necessary if there's a possible treatment plan or adjustment that can be made to improve my current condition. On the other hand, complaining would be best described as a nuisance nag with no action or treatment expected in return. I feel confident that I do a great job at not complaining to others, for the most part, but can likely do a much better job at updating. I also admit that many times I hesitate or procrastinate too long, but it is always with my best intentions and out of complete respect for my medical team. In conclusion, many aspects of your life can change when living with chronic illness. Your relationships with family, friends, self, and even medical professionals are certainly going to change. Your power lies in how can you make these changes work in your best interests. What can you do to ensure that you are surrounded by the care and support that you need and deserve? My current goal is to allow my family and medical team to learn how they can better help me. In order for this to occur, I'm going to have to be brave enough to let down my guard some more and become a better communicator. How has Illness impacted my parenting?
In conclusion, I recognize that I can still be and still am the caring loving mother that my children need. My role as mother has not disappeared or decreased due to illness. Instead it has been altered in ways that I never expected. Worries, concerns, visions, participation, protecting, teaching, and loving my children are still very present - yet how I perceive the effectiveness of my parenting skills varies greatly, depending on my health situation and how I feel. Regardless of my illness and my lack of being as active as I desire - my children will still receive everything they need and more from me as their mother. For every example of what they are “missing” as a result of my illness, there’s a replacement of something else they have learned or experienced about life instead. My deepest goal is to raise children that…… -Experience and understand the true meaning of love and family, -Recognize God’s blessings, comfort, and everlasting promises -Develop empathy & kindness towards others regardless of their differences (visible or not) -Are dedicated, motivated, and willing to strive for their dreams, even when obstacles get in the way -Care about their personal needs (in an unselfish way) so they can take better care of their families -Are willing to stand up and advocate for themselves (and others when needed) -Feel the pride and love that I have for each of them --Are Healthy, Respectful, Respectable, Wise, Happy, & Successful in all that they choose to do in life - Are aware of and never forget how important they are in my life and how much l love them. Why is complete honesty about my health, especially to my medical team, easier said than done? I tell myself before each appointment, call, or email that I'm going to be completely honest and transparent, yet I continue to have difficulty relaying a true & accurate message when new health issues arise and/or current ones continue. Without meaning to, I often downplay severity of symptoms and situations by either softening the situation behind a smile, lacking descriptive details, or attempting to be positive and optimistic about what I am experiencing. I honestly try to be genuine and transparent during my appointments but often find it difficult to express my thoughts and symptoms to the full degree that I'm experiencing them. Why is that, one may ask?
A possible reason is because I have shared many of the symptoms over and over and over again with my medical team. How many ways can you say that your nauseated or fatigued? No matter how hard I try, it would be impossible to convince anyone that's not experiencing it the true impact that the severity of my symptoms have on my day to day functioning and quality of life. Most people feel miserable with being nauseated for a couple of hours or a day, I know I was prior to becoming ill. But now, it's a constant daily struggle and has been for 3 1/2 YEARS! My "good" day with nausea is likely comparable to a bad nauseous spell that I had 4+ years ago. I hear and see people complain about the stomach bug that's going around, how they were up all night nauseous, how they can't take anymore of the abdominal pain that began that morning, how weak they feel from not being able to eat for one entire day, etc. And I sympathize and empathize with them because I know the feeling, only mine is persistent and has lasted for years, not a day or two. It doesn't get better, it hasn't gotten better. It seems as though, with the exception of removing the pain due to my gallbladder and colon (which I have NO REGRETS about), that my issues especially regarding my strength, energy, nausea, and abdominal pain with oral intake only continue to get worse. Maybe part of the problem is that I don't believe that I could completely make them understand anyway, so what's the point? Sometimes, I just get tired of repeating myself. I've explained or shared so many of the same symptoms so many times over the years that I'm kind of immune to the words I guess. The severity level on the spectrum may fluctuate, but even when my "normal" symptoms are at the highest levels, I feel as if I am complaining over something petty or insignificant. I have, and I'm pretty sure so many others that deal with chronic digestive illnesses like me have as well, seen the expressions and heard the comments minimizing how destructive our symptoms are from our colleagues, friends, family, and even at times medical providers. "Everyone has tummy aches sometimes." "Yeah, I remember when I ate too much at the buffet the other night and I felt bloated and nauseous. I just took a Pepcid and in a couple of hours it settled down. Maybe you should try that?" "If you'd just stop thinking about it and return to the real world, you'd feel better and forget about your stomach hurting or being nauseated." "I'm tired too, but I keep going. I don't let it stop me. I just grab a coffee and I'll go to bed earlier tonight to make up for it." What they don't realize is that though their statements may be true in the lives of some people, that's not the case for me or many of the people I've met from online support groups. If you don't live this life, it's hard to fathom it, and statements like the one's above (even if said with good intentions) sound critical to my ears and can make me feel like I'm being ridiculed. So why does that matter? One may suggest to ignore the comments or forget what someone else said, right? Well, it's not that simple. Because when I start to say something about the nausea, bloating, pain, or fatigue - in the back of my mind I can't help but think about how the words are going to be perceived. I begin doubting myself. doubting being understood, and therefore doubting the possibility of any relief being found. There are times that I'm around people who are sincerely interested in hearing exactly how I'm feeling, want to know all the details, and need to hear them so they can best assist me. Usually, this group consists of my closest family members, doctors, and nurses. Whereas my family may desire to know the whole truth, it's just not feasible or necessary all of the time. Sometimes I have to keep some things hidden from them as it's for their own good. They can't worry about me all the time! I have to make sure that they hold on to faith that I'm okay, or going to be okay. Because ultimately I want to be okay. I also don't need them trying to persuade me to reach out for help over every little thing. I know that they love me, but sometimes I have to deal with things on my own. I have to learn to live with feeling bad and then let them know when symptoms begin to intensify or spiral out of control. My medical team on the other hand, especially my GI, home nurse, and therapist, need to be aware of anything and everything when they ask questions. I need to be completely open with them about how I'm feeling, what's not working, my health concerns, and even sometimes my health fears. And though I want to, it's just not always possible. Maybe it's because I want to be better instead of expressing discouragement. I have to remain "strong" in the eyes of others (and self), which means that no matter how horrible I feel, I must remain in control of my emotions. If I end up crying or become upset when sharing my health complaints with my medical providers, I increase my risk of not being taken seriously. Instead of focusing on the actual problems, my doctor's attention may divert to anxiety and depression treatment, even if my tears are just an expression of my frustration from wanting desperately to feel better. That risk is not worth taking, so I sometimes have to distance myself and my words from my emotions. For this to happen, I believe that I become quiet, vague, and indifferent to the symptoms that I'm describing. I need to ensure that I'm hopeful (even if I'm losing hope), pleasant, and calm as I don't need to chance becoming incorrectly labeled, dismissed, or overlooked. Is this reasonable and wise? On the mind standpoint yes, though on the medical side I'm sure that it can be counterproductive as it may make diagnosis and treatment more difficult when the degree of my symptoms are not clearly understood or recognized. Furthermore, my resistance to sharing the most accurate image of how my health is going may reside in the fact that I ultimately do want to be better. I want to eat, I want to participate in activities, I want to be healthier, and I want to live instead of just existing. However, I'm not sure how achievable that is now. Being completely open and honest makes me vulnerable. Do I really want to have my fears of illness confirmed? Do I need to take the chance of being told that I have to just deal since there's no other viable treatment options? I am aware of the importance of being straightforward about my health, but avoidance just seems easier and kinder than facing reality. I'm not sure how much more negativity I can take, not sure how many more trial and error treatments I want to pursue, and to be quite frank, I'm uncertain how much more I can handle with this illness. If there's nothing else that can be done, if I am running out of opportunities for better health, then should I even continue trying? Am I truly worthy to receive effective help or assistance anyway? I mean, I am just 1 person in this world full of millions and millions of other people that desire better health and healing as well. The majority of which are much more prominent and beneficial to society than I am. I don't know, maybe I am just being stubborn with all these attempts to improve when I should just deal with it and accept that sickness is the path that I am intended to travel. Instead of grumbling about how rotten I feel, I need to adjust my thinking. Instead of thinking about how sick, fatigued, or weak I feel daily, I need to focus on being content with all the positive things that are going on around me. But once again, these words and ideas or much easier said than done! Cruising along in life with beauty all around. A few minor storms rocking the boat, yet followed by calm waters and rainbows. Comfortable, relaxed, and under the impression that all in life is surmountable. That there is nothing that is unattainable if you give your absolute best and bask in the joys of life. But then unexpectedly mayhem arrives. A horrifying atrocious storm that leads you into a path of destruction. Turbulent ferocious waves slamming this way and that. Finally, a moment of tranquility. Hope slowly building, trying to salvage what survived, feeling like control has been regained when WHAM! Capsized! Confusion sets in! Caught completely off guard! Where in the world did that come from? Was there any way that I could have outmaneuvered or avoided this destructive, disastrous squall before irrevocable damage was accrued. How can I prevail and ensure that my purpose is achieved - when flooding waters are engulfing me, overwhelming me, making me feel as if passively decaying from my earthly vessel? Left considering if vanishing to my creator would be easier for my family and me. Would they not discover closure and rebound after sorrow to find life more enjoyable when not surrounded by my sick, stagnant, and dormant body? The waves continue colliding and demolishing my body's spirit and health. Ambushing me, drowning me, submerging me under raging waters. Will the storms and tortuous waves ever subside? Will I, the captain of my vessel, ever be able to survive the wreckage I'm immersed with? Or will I disappear completely, a castaway left at sea, an outcast of society? Slammed again and again. Tossed around, seasick, dizzy, and unsteady on my feet. Is it because I'm not worthy? Do I not deserve assistance? Is recovery even possible any more or is it just an illusion? An illusion that I believed to see because my hope was so immense, but not really there. Or maybe it's just too far away that the rescue from illness may be possible, to someone else, yet is too far away to be of any benefit or assistance to me and my fate. Regardless of the constant rocking from the continued waves, my weary eyes and feeble body envision my entire world. I identify the unconditional love that awaits me and awaken with an appreciation for life with my family. I'm reminded that God has a purpose that I have apparently not fulfilled yet. I vividly escape into dreams of witnessing and experiencing life's upcoming adventures with my children. I embrace my desires to hold my kids' hands and comfort them when life is hard while also looking forward to celebrating their personal accomplishments and dreams they undoubtedly will achieve. Admittedly, life is bleak and treacherous at times, but somehow we can't give up! We must continue to grasp ahold when our life seems to be falling to shambles, regardless of how vast the storm. We must keep our minds focused on the future and ones we love. We must maintain faith that God will keep us grounded. If we allow Him to, he will rescue us from despair by surrounding us with blessings, love, and support. We just can't let go! I have to remind myself that I can NEVER EVER GIVE UP! Eventually, the storms and raging waters will subside and when they do, it will be magnificent! Disclaimer: This list in not all-inclusive There are various other facts and experiences that I chose not to share today. The statements below are based on what I have encountered during my personal health journey. Other patients may have stories that are similar, less dramatic, more severe, or completely different than mine.
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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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