I am so angry with my body. I am extremely frustrated at how much deception is occurring as a result of dealing with this damn sickness day after day.
Once in a while my mind and mouth say "Try a little ---- yogurt, milkshake, applesauce, mini muffin, etc. (Mind you, only 1 is attempted during the day and even then usually only a couple of times each week.) They coax me along, "It will be delicious. It shouldn't cause you too much trouble! You won't regret it. What's the worst it can do? You need to keep trying so you get additional nutritional intake and to avoid more damage to you digestive system." Initially, my stomach says "That wasn't too bad. It tasted good. I'm really full but I think I can handle this. Thank you." However, my stomach and mind then turn on me. They mastered deceiving me once again. Out of nowhere, no matter what I'm doing, nausea and pain hit me hard a few hours later, if not earlier. My mind first responds with "It's okay, at least it was good. At least you were able to enjoy a little something. We've got this!" Then disaster hits when side effects continue and intensify. "What were you thinking? How stupid can you be? Why are you going to keep doing this to yourself?!!! You deserve the pain and nausea because it's your fault for trying a little something in the first place." My stomach chimes in with it's attitude of "you will now pay for putting me through this hell. You want to keep playing with me, testing me, well guess what, it's time for you to be punished. I'm going to make you feel as awful as possible. Just remember, you are the one that wanted to take the chance - now you can deal with the consequences." See the deception!! It's unexplainable and disturbing for sure. But that's not all! Physically, I deal with deception as well. My mind wants my body eager and active, but my muscles do not always agree and definitely do not like to cooperate. My muscles and mind work together to tell me that I should be fine if I do this and that. They tell me that it would be fun or nice. They remind me of how much I'm missing and encourage me to be more actively engaged so I don't miss out on life. Sounds great, right? I mean doesn't everyone want to spend time outside, go on vacations, go shopping at the mall, or take scenic walks with their loved ones? Wouldn't activities help the family be closer, make life more enjoyable? So I spend hours, days, or sometimes even weeks to decide if I can be courageous enough to take the chance. "What kind of complication or consequences will I have to undertake? Can I successfully survive the consequences?" Finally, I gain enough confidence and decide to agree to live more. My choice may be as simple as going shopping, attending a movie, or taking a calm relaxing vacation with my family. In the moment, I go all in! I mean, if I'm going to be required to face consequences afterwards, I might as well enjoy the moment to the highest maximum level. My family and I do try to make as many accommodations as we can beforehand. Most of which, I tend to agree with (with the exception of using a scooter). I don't like admitting that I need to take a break, leave early, sit back and watch others have fun, or cancel. If I start something, I will do everything in my power to complete it as expected. I will not look for excuses or express too many complaints. Lots of times, it's my family that sees when I'm physically struggling and reevaluates and/or makes adjustments to our plans. After deceiving my body enough to participate in life, allowing adrenaline and emotions to take control of my actions, my body becomes enraged. My muscles and energy crash on me. Then my body furiously punishes me for days and sometimes even weeks. Leaving my mind to feel deceived as well. Another example of deception is when my mind and body try to deceive others with the outward appearance that I portray. With a smile on my face, I try to convince others that I am fine, that I'm okay, that I am strong enough to handle things, and that my shortcomings do not bring me down. I try to persuade them, regardless of how bad I'm actually feeling, that I have things under control so there is no need for them to worry about me anymore. As previously stated, it's quite apparent that I have become a body of deception as a result of my chronic illness and it's impact on my life physically and mentally. But, I must admit, this body of deception does at least allow me opportunities to feel alive.
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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 With admiration and appreciation, I thank all of the phenomenal doctors that have been a part of my medical team. Inpatient or outpatient, doctors in all areas and specialties have the ability to make a lasting difference and impression in my life as a patient. The experiences that I've had, good and bad, have made me more aware of what I expect, need, desire, and appreciate from my medical providers.
Today, I want to personally and publically thank some of the most incredible doctors that I have worked with along my medical journey. Even though I would like to share their actual names, respecting their privacy is more important. Dear Dr Spectacular, Thank you for being my doctor Over the years, you've learned who I am. My health journey has been better, with you being a part of it. I appreciate your trust and perseverance. Through your actions and encouragement, you've kept me from giving up. Thank you for being by my side, Calling me out, when you knew I was downplaying my situation or symptoms. Thank you for choosing to listen with caring and compassionate attentiveness, For questioning me and having open dialogue to gain more clarity, For communicating with my family and other medical providers when necessary. Thank you for being REAL, empathetic, cautious and never intimidating, For your honesty and for the mutual respect we've shared. Thank you for helping me to remain optimistic, especially when my health is most challenging, And for your willingness to keep searching for the most effective treatment plan. Thank you for taking time during our appointments, never making me feel rushed, And for seeing me as a person, not just as a patient case. Thank you for always being prepared, with alternate back up plans available and ready. Thank you for understanding ME, remembering previous encounters, & not just following my chart. Thank you for encouraging me to communicate between appointments, And for quickly responding to my updates and questions, even if I was unsure about sharing. Thank you for taking me seriously, not writing me off or blaming me when an easy solution was nowhere to be found. Thank you for ensuring that I've always felt safe, respected, and heard when under your care. Thank you for taking the risks to invest your time and attention to my health needs, For tolerating my silence, shortcomings, and attempts to avoid "bothering" you. Thank you for the countless times you've reassured me that I was never a bother, For your confidence, kindness, knowledge, curiosity, and eagerness to assist me. Thank you for having the ability to see through me to the reality of my health's impact on daily life. With the utmost gratitude, I express my appreciation for you. I thank you for the positive impact you have made in my life, For always being patient with me, while also looking out for my best interests. We may not have all of the answers or solutions, but I thank you immensely for the improvements we have accomplished. Thank you for being a spectacular doctor! 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 often do you sit back and contemplate which direction your life is heading? Is it on the course that you imagined or dreamed of? Most likely there are dreams of yours that have been ignored, set aside, or possibly some that you are still striving to achieve.
Today, a friend directed me to a powerful video message. It was extremely thought provoking and inspiring, similar to a few other motivational speeches and songs that I've listened to recently. When times are difficult, it's so easy to sit back and try to "wait" it out or hide. But how often do we actually "FIGHT" for what we want, persevere with relentless drive for the dreams we envision, use our power of our mind to change our circumstances? While listening to the video, I tried to look within my heart and soul. I'm not going to lie - I experienced a myriad of emotions. Part of me became sad because I honestly felt as if I was giving everything I had and more to make my dream of being an inspirational teacher come true. I pushed myself through sickness and pain, spent endless hours searching and planning for meaningful classroom lessons and experiences, laid my heart out to reach and connect with students that didn't see the potential that resided inside of them. I LOVED teaching with a PASSION - it was, without a doubt, a dream come true. A career that I enjoyed and that made me feel prideful. I honestly felt like I was making a positive impact on the lives of others, thought I was using the talents that I was blessed with to live a life full of purpose. I was sure that I was taking the path GOD intended me to follow. When I became sick, I admittedly didn't listen to my body's personal needs. My body and my health, were not my priority. Teaching and being an active parent were much more important to me. I literally continued teaching, working, and staying on the go with my kids. While feeling worn down and sick I continued to stay busy with all of their school related and extracurricular activities as well as all the "motherly" duties I expected of myself. I even took classes online at night for a few years so I could earn my Master's and better provide for my family. Regardless of what my body was trying to tell me, I was strong minded, strong willed, and gave everything I had to live the life that I envisioned as a mother and teacher. I was determined to not let anyone or anything (including my own body) destroy my desire for teaching. I did not bother to consider or listen to the advice that my family kept expressing. Instead, I kept fighting and kept pursuing my dreams until my body ultimately crashed. I did not value my needs, because to me that felt as if it would be selfish, expressing weakness, and was just not a priority. In retrospect, and as an outsider looking in, I realize that to give my best, I need to be at my best. And that can only happen when I fulfill my personal needs, namely my health. Ignoring my health needs and symptoms will not make them disappear. I've tried that thinking over and over again and all it does is lead me to more issues. Unfortunately, some of that ideology came from medical "professionals" (such as doctors and nurses) that minimized my concerns and the impact it was having on my personal life, when I did finally reach the point to actually ask for help/assistance. As I reminisce now, I'm not sure what to think. Could things have turned out differently if I'd taken different actions? Did I inadvertently cause self-destruction? Did I take my health and time with family for granted? Was I missing something? Even though I was living with purpose and drive for what I wanted in life, was there something else that GOD had in mind for me? I don't know the answers to these questions. Have I made mistakes in my life that make me wonder what if? Sure, everyone does. Was life peachy clean? No, but I knew what I wanted to do and I did whatever it took to be successful as a mother and teacher. At least that's what I thought I was doing. Now, look at me. Illness has overcome me. I don't want to be a "victim" but I also don't want to make my situation worse. I still have a difficult time listening to what my body needs, but attempt to make my health a higher priority. My dreams of making a difference in the classroom has ended - at least for now. My role as a mother has been altered. Activities, hobbies, and interests that I once enjoyed are not possible at this time. In the beginning, I was persistent that illness was not going to interfere with my personal life. Wow! That was a joke - the harder I fought for normalcy the worse my health declined. For the past 4 years, I have tried to determine what the right balance for my life is. How can I fight with mind, heart, and body to accomplish my dreams without causing more damage? How do I determine which dreams are worth pursuing and which are too costly or too far out of reach for my reality? Life is not meant to be easy. We are meant to be great - not average, but you have to be willing to put forth the work and heart to make it a reality. But how? I understand that we grow during our most difficult battles. I'm aware that there is so much left for me to learn about life, but which aspects are the most essential to fulfill in my lifetime? So much time has already been wasted - so how do I make the most of what time I have left? Which dreams are worth pursuing? When one dream conflicts with another - what do you do? When giving 120% in one area requires me to compromise or give up on a different one because I can't envision a path that would effectively meet or surpass all of them, what then? How do I ensure that my choices are respecting my personal needs while servicing others to my full potential? I am aware that not all of my decisions can be easy, that the most difficult decisions are the riskiest yet also have the capability of being the most worthwhile. God is the only one that can see the future, so sometimes we have to take a leap of faith - and that's fine- but when life and health is so fragile - how do you determine which choices will lead to the most desired results? When health is an issue, where do you draw the line between making healthy choices and taking the risk of chasing dreams? (Just something to think about.) Deep slow breaths, in through my nose, out through my lips.
In --- and ---- out... In--- and ----out - as I prepare myself for the dreaded but necessary trip to the grocery store. I look over the list of items that I need to purchase. Meal options for the next 7 days have been planned out in advance so we have everything we need for the upcoming week. Since I'm unsure of what each day holds, I've selected a variety of meals, the majority of which are simple enough that the kids can handle it without my help or with only verbal assistance. I've taken the time to rewrite and categorize the items on my list, so they are basically in the order that we will get to them as we shop. This outing, like all of my other outings, are too much to handle on my own. My energy and stamina limited and unpredictable, changing in a moment's notice. This is an errand that Diamond , and sometimes Carmen, assist me with. We've learned by trial and error that grocery shopping first thing Friday or Saturday morning, 8-9ish, is the best on my body. It's not busy, in fact the store is basically empty of customers at this time. As I ride along in the passenger seat of the car, I look out of the windows contemplating what I will choose to do today. Will I challenge my body and walk the store? Will I listen to my body and drive the motorized scooter? Will I decide to protect my physical needs or safeguard my mental perspective? In my mind I flip back and forth, back and forth, unsure of what's in my best interests. Hmmmm!!! Which side is most essential for me today? I can easily ramble off the positives and negatives for each selection - some sensible, reasonable, and logical, others possibly insignificant, but all profound just the same. Experience has shown me that when I'm stubborn and decide to walk, I regret the decision a few minutes later. Pride keeps me moving regardless of how weak or lightheaded I feel. I will continue to push forward and face the consequences at the present time and for the following days as well. Headaches, wrinkled fingers, blurry vision, unsteadiness, internal shivers, and fatigue are just a few symptoms that often present themselves. Luckily I have IV fluids awaiting me when I return home. (Another reason I have selected Fri or Sat to go to the grocery store.) My family often gets annoyed with me when I choose this option, 1) because of the visible signs they witness and 2) because of the time and struggle it takes to recover. I on the other hand feel pride for sticking it out and being more "normal" at least for an hour or so, but left feeling disappointed and irritated when I realize that nothing has changed, that my body isn't better, and the physical price I have to repay. Utilizing the electric scooter for the time I'm at the grocery store is undoubtedly the wiser option to meet my physical needs. It makes my daughters worry less, it makes us all feel like I'm "safer" , it protects my limited energy and strength, and lessens the amount of time and degree of exhaustion that I will have to endure when I return home. BUT it requires me to face the fact that I'm sick! It's just another example of how I have lost my independence. It's a reminder that my body is weaker and more fragile than the elderly that are able to run circles around me. While riding the scooter makes me feel better physically, prevents the severity of symptoms that follow the outing, and decreases the amount of time that it actually takes to complete the grocery trip, it hurts my spirit. Emotionally, it makes me feel inadequate, makes me look lazy, makes me question my need, makes me consider what others are thinking and/or saying. I know that it shouldn't. I understand that the reason they have the scooters in the first place is for people that need to use them. I'm aware that others don't know what my body has been and continues to go through - just as I don't know their personal story or what they are actually thinking (if they even are) about me. I know that I can't control others' opinions and that what they think doesn't necessarily dictate the truth of the matter. BUT admitting that I need help once again, that my body can't handle something else once again, that tools and/or machines are required for me to function ONCE AGAIN is disheartening. What am I becoming? As we approach our nearby Food Lion, my mind ponders about why I am so determined to go grocery shopping in the first place? What is my ultimate goal? I remind myself that I want to feel needed. I need to fulfill my desire to be a productive member of my family. Grocery shopping gives me a pertinent reason to get out of the house and helps me feel more successful as a mother. If I actually go shopping, I can ensure that my family has something at least semi-healthy to eat during the week. Why do I elect to choose the dreaded grocery shopping as my weekly "chore" anyway? Isn't there something else that I could do to satisfy my thirst for a "normal" life? Something that I might even enjoy or that may be less draining on my body. If so, I have no idea of what that could possibly be. Grocery shopping is necessary and can not be avoided or postponed but for so long. I reassure myself that it is "normal" to do things that you dislike or hate to meet the needs of those you care the most about. It's "normal" for mothers to make compromises for their children. Apprehensively, I trudge toward the storefront's door. What will my fate be today? Closing my eyes I stop to take a breath and slowly breathe.. in ------ and ----- out in ------ and ----- out If only for a slight moment, I finally feel like a "normal" mom, completing a "normal" task, with a "normal" annoyance.... Gradually I reopen my eyes to my reality and the choices I have before me. Which part of me will be victorious today? Will I successfully accept my body's physical needs, listen to my family's concerned pleas, and ultimately ignore all of my self-doubts and fears? Or, will I stubbornly tread through the seemingly endless grocery store aisles in an effort to demand some independence for myself? The decision may appear trivial or petty to many, but when your life has been turned upside down from illness, when everything seems to be spiraling out of your control, it's only natural to grasp on to whatever control you can have, no matter how small or minuscule the issue or task may be. 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. Regardless of how we feel about our lives, there are always others that judge us. Sometimes the opinions of others will be neutral or positive, however, there are also times that everyone will be categorized or judged negatively. There will be times that others thoughts and opinions about me will be accurate, times when others’ judgements are misguided or wrong, and even times when I’m perceiving their thoughts with my own self-conscience. On the surface, I can say that others’ thoughts and opinions are just that, their thoughts and opinions. I may care what they think, but at the same time, it doesn’t (or shouldn’t) really matter deep down. People don’t completely understand each other. We’re only human. Just as I don’t know everything that someone else does, thinks, or believes - I have to remember that others’ don’t truly know me behind the scenes either. We all experience life differently, we all have our own journey of challenges and dreams, we all have our own personal character traits and personality, we all have a history that’s unique, all of which can influence how we not only view ourselves and loved ones, but strangers as well. Saying that, I know that I shouldn’t let others have the power to define who I am or make me doubt and question my worth. What should be most important is that I’m living up to my personal values and beliefs the best I can. Unfortunately, it’s not always that simple to remember. In the moment, others’ thoughts about me can cause so many different emotions such as pride, joy, relief, guilt, sadness, anger, pity, frustration, hopelessness, and pain. Just like everyone has different roles in my life, their opinions of me also impact my life differently. My reaction may differ because of who they are, the situation it occurs within, or how I’m personally feeling at that time.
Family: The opinions or thoughts that my family have about me are very important. I need for them to understand some of what I’m going through, it’s helpful when they are familiar or concerned enough with my situation as they can help me manage life better (even if I try to revolt, deny, or refuse to listen to them.) However, I don’t want them overly concerned or worried about me. I try my best (though not always feasible or effective) to remain optimistic and “ok”. I know that I’m not completely responsible for how or what they think, but I do attempt to have a little control by limiting and downplaying how much I let them know. Their opinions can influence me quite a bit. When negative comments are made, either consciously or accidentally, it hurts a lot and admittedly decreases my mood and confidence. I don’t want to embarrass them with my issues and am not always open to hearing reminders of what I should or shouldn’t do or what I do or do not have (ex/ med equipment) regardless if their comments are true or false. Current Healthcare Team: Similar to my family, my medical team’s thoughts/opinions are extremely important to me as well and carry a high level of importance. I feel responsible in making sure that my doctors, nurses, etc.. understand the reality of how I’m feeling, what is medically happening with my health, and at times the impact my health is having on my quality of life. I feel that it’s essential for us to have open communication and mutual respect in order to best meet my medical needs. However, for this to happen, I also try to be considerate in not wasting their time or abusing our lines of communication. I find that I feel the need to be careful and monitor how I explain things as I don’t want them to consider me a whiner or complainer, but do need them to “see” what’s happening so they have a better opportunity at helping improve my health, Sometimes I also feel the need to downplay the situation as either I “should” be able to handle more of this on my own or I want to avoid a response that I really don’t want to hear. BOTH my family and my current health team have key roles in how I react to my life. Their words and actions can be encouraging, motivating, comforting, and grounding or they can be like daggers in my heart, disheartening, frustrating, or bone crushing. I prefer them to be realistic, understanding, and honest. I am alright with hopeful comments as long as they don’t go overboard with them or are not attempting to build false hope for themselves or me. Some friends and/or familiar acquaintances are aware of my health issues and understand at least part of what I am dealing with. This category can include other (non-routine) health providers, past colleagues, friends from the past, or people met via online support groups. Personally, I want them to think positively and highly about me. I feel the need to “prove” why I’m unable to work, why I can’t participate in certain activities, attend some events, or why I need their help- but I also know that it’s impossible and takes too much energy or time. I want them to believe that I am strong and patient, that I’m optimistic and not a quitter. I attempt to stress my desire to live life, so they don’t think I’m just boring, lazy, or depressed. I have been finding myself trying to push away, distance, or ignore them, as avoidance is so much easier than dealing with how to communicate and present myself around the people in this category.
What about strangers and people I know that are unfamiliar with my health issues opinions of me? I should not let the opinions of people in this category bother me too much, as I know that they don’t know anything about me and will likely never see me again. I try not to let strangers’ thoughts impact my actions or decisions. Genuine positive feedback from anyone, including people that I don’t know, is alright. Unfortunately, I’m not always successful with ignoring the negative comments, facial expressions, etc that I face. For example, riding on the scooter at the grocery store. Each time that I am honest with myself about needing to utilize a scooter while grocery shopping, I have to overcome my fear of how others will look at me. Sometimes, I try to make excuses of why I shouldn’t ride one, but my family (especially my daughters) encourage me. They tell me that I shouldn’t be worried about it, that they don’t care what others think and I shouldn’t either. I’ve learned that riding the scooter is necessary right now if I’m going to allow myself to help grocery shop as otherwise I get too winded, tired, or lightheaded. For the most part, people don’t pay me any mind - at least not in a visual way. However, there’s always one or two that give me dirty looks, like I’m being disrespectful, lazy, etc and the looks and attitudes that they give are very hurtful. The judgements remain with me for the remainder of the grocery trip and usually the rest of the day. Additionally, they make me more apprehensive about using a scooter the next time. I try to psych myself, prepare myself ahead of time, with what I will say if someone looks negatively at me while using the scooter - however, in the moment I usually grow silent (too chicken I guess) and choose not to say anything. I feel as though I should be strong enough to educate them on invisible illnesses and why I am in need of the scooter - but it’s hard to justify myself when I’m already self conscious about riding the scooter. Riding the scooter is essential for helping me feel useful once again within my family, but it worries me that someone else may need it even more than I do, which decreases my confidence in doing what’s in the best interest of my health. In short, be kind, be nice, and be supportive. Don't judge others as no one knows what it's like to walk in the other one's life. If they are like me, they are already judging themselves and perceiving other's possible judgements at the harshest degree. |
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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