When you're having a bad day, or a long week--how do you relax, recharge and reset yourself?
My ideal day in? Now that's an interesting topic that has changed over the course of the past 2 1/2 years. Fighting the life-altering disease, Gastroparesis, has changed how I view "ideal days in". If I went back to the time period before I became chronically ill, I would relax at home by spending time with my children. If I had a bad day or an exhausting week, I would recharge my body and mind by playing baseball or basketball outside in the yard with my children, taking a trip to the beach, fishing, and if warm enough swimming. My nights would be spent watching a movie with the family. Now rewind to 2 years ago - shortly after my Gastroparesis diagnosis and feeding tube placement. During this time, I was still dealing with symptoms of nausea and abdominal pain - but otherwise "living" life pretty well. I was able to teach, attend children's sporting events and practices, and take vacations. To relax, I enjoyed spending time outside watching the kids play and/or swim, playing catch, watching movies, and even a little fishing. All of these activities kept me busy, but allowed me to distract myself from my health condition and everyday stresses. On days that were more difficult physically or emotionally, I would curl up on my couch and read a book or take a nap. Now, bouncing back to the past 8 months, my life has drastically changed. My symptoms have increased drastically. I am in constant fatigue from fighting never-ending nausea. My abdominal pains continue, some days worse than others. Now my intestines have decided to join my stomach and not work properly, which is awful and tiring. My nutrition is non-existent as well. I struggle daily to receive any nutrition, even from my tube. Due to lack of nutrition, I have been limited by my Dr. to 5 min only rides on my stationary bike. I have been out on medical leave ever since my last hospitalization at the end of Oct. Not being able to return to work was very depressing until I discovered the best ways to cope with the situation, which will hopefully change before the new school year rolls around. It's strange how things change. Just a few years ago, I looked forward to days/weekends when I could just relax at the house, sleep in, watch movies, and spend time outside with the family. Now, I'm unable to work or play outside, at least until we can figure out how to convince my body to tolerate more nutrition. An outsider, looking into my world, would perceive that I spend all day everyday at "rest". When in actuality, I very seldom rest or better yet, recharge. To keep my mind mentally strong and away from depression, I spend the majority of time on my computer advocating for Gastroparesis awareness and trying to help others in numerous Gastroparesis and Feeding Tube Support Groups. It's crazy how "working" actually helps me "rest" better than "resting" right now. However, this "relaxation" technique does not always work, especially on my "really rough" days. On those days, I curl up on the recliner with a heating pad on my abdomen and Contemporary Christian Music playing through my ear buds. If that doesn't work, I will try taking a long hot bath, while listening to music. Sadly, I sometimes have to just let the tears roll until things improve and then pick up the pieces and try to relax after the worst is over. When my children are home from school, I do my best to spend time with them whether it's watching movies on TV or just talking. If I'm having a "good or decent" day you may find me sitting outside in the sun, attending their ball game, grocery shopping, going to a movie, or even going to a restaurant with them. (Unfortunately, I seem to be having too few of the "good" days and if I'm not careful living a "good day" can consequently quickly change to a rough day.) So as you see, my life has drastically been changed as a result of Gastroparesis. I have had to learn by trial and error how to best relax nowadays. And apparently still have a lot to discover.
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Taking a look into the rear view mirror of our life. We've all been here at one time or another; Looking back to see what we could have done differently in our life. Would it have changed our outcome? Would it have made things easier? The truth is that we never know for sure.
Today, I am going to share with you what I wish I would have known at the beginning of my Gastroparesis Journey. For those that have already embarked on this journey, you may be able to relate. For those just beginning with their diagnosis, maybe this will help you. Looking back, I wish I had known that there is nothing wrong with me. Having Gastroparesis is NOT a sign of weakness. People from all different walks of life have Gastroparesis. I did nothing to cause it. There's nothing I could have done to prevent it. It's just one of those things that happened. Possibly part of God's plan to get me to where I am today. So why, a little over 2 years ago, was I so ashamed? Why was I afraid to talk to people about it? Why did I try so very hard to hide my illness from other people? Wearing the "I'm ok" and "nothings wrong" face used up so much of my energy, yet I was determined that I had to pretend everything was alright and that I was so strong. I wish I would have known that I was not alone in this battle. I wish I had known that there were helpful online support groups. Feeling alone and isolated, may be part of the reason I put up a fight to hide my illness. When I was diagnosed, I was not aware of support groups and could find very little if any valuable information on the internet. Doctors, especially in my hometown or in the ER , weren't even familiar with Gastroparesis and the best treatments. I didn't have anyone to talk to about what was happening or how I felt. I didn't have anyone that truly grasped what I was dealing with. My family tried to be there for me, and they still do, but they didn't truly understand. It hurt feeling like I was the only one who knew how awful I felt. It hurt feeling like I was not being heard or taken seriously. I was in misery all alone and by myself, but I'd find out later that I didn't have to be. I honestly felt how hopeless one can feel. Even though I personally never considered suicide, I could see how other's have, and that's one scary feeling. I have felt so low and in so much pain that I just wanted it to end, no matter what. I felt like I was such a burden on my family and even my kids and sometimes believed that they would be better off without me. I know that's not true, but it's amazing the things you think and feel when you are fighting a battle alone. I wish I had known that carrying around my backpack with feeding tube didn't change who I was. I was extremely self-conscious about my feeding tube to begin with. I did my best to not wear it in public or try to mask it. I felt gross and like a freak of nature. I had a love hate relationship with my tube, still do at times. I was disgusted with having a tube inserted in my body. I thought that having this tube was disgraceful. I felt less human. But why? Why was I so determined to be "normal"? What is "normal" anyway? Didn't I know that everyone has their own battles and that there is not a perfect "normal" around? I wish from day one of my illness and especially at the point of diagnosis, that I had more coping skills to help me get through each day, each episode, each flare. Knowing how to accept the illness, find comfort in music, relaxation with a long hot bath or using heating pad, relief by talking or writing about my ailments, etc. It would have been nice to have been able to successfully apply these coping skills earlier. In retrospect, as I look in that rear view mirror, there are things that I wish I had known or recognized earlier. But if given the chance to change them now, would I? I don't think I would. I want others to know they are not alone, not less human, not at fault, not weak, and that there are resources available. I want others to be able to find and apply coping skills to decrease their struggles. However, I wouldn't change my past. Why? Because these experiences, thoughts, and feelings helped me become who I am today. They set forth the path that I believe God has intended for me. Feeling isolated, having difficulty finding resources, feeling ashamed or like a freak; they all helped inspire me to help others. If I had not lived through those experiences, I wouldn't have met Melissa. I wouldn't have become involved with advocacy or better yet, never even considered advocacy. I wouldn't have found passion in sharing my story to help others, fight for awareness, or demand more resources and better treatment options. Now, I know that I can be strong without pretending. Strength is shown by sharing my story, by helping others, and being real. Through my struggles I found myself. I found an outlet for my frustations: Advocating via blogging, emailing, Twitter, Facebook, support groups, etc.. Nothing is going to stop me. I have a spark and determination within me. Yes, the debilitating and horrendous symptoms of Gastroparesis may knock me down, may even try to hold me down, but I WILL get back up. Even if it takes a few days or weeks. I will no longer sit in silence! I completely grasp loneliness, and I will do everything in my power so that others don't have to realize that feeling. I will NEVER GIVE UP!! My closing remarks and advice for those newly diagnosed with Gastroparesis, or any other chronic illness is that there is no reason to hide who you really are. You are You, and there's no one ever exactly like You. So be the real You and great things will happen. You are NEVER going to be able to please everyone, or make everyone happy. So be true to yourself and happiness will be discovered. Learn from your experiences, allow them to make you stronger. Remember that you are never alone. Reach out for a helping hand when needed. When possible offer a helping hand to others. Find a way to have your voice heard. Whether it's social media, writing, singing, talking - you have a purpose and you have a message. Use it. You will be amazed how better you will feel mentally and emotionally. You will have difficult days. You will have days you want to give up. And that's ok! Just hold on hope and stand back up. You are a warrior, you are a fighter, you are a crusader - just like me! So, yeah if you're reading my post, I thank you. Your support is appreciated. I don't want to hurt your feelings, but this post isn't about you. Sorry, this post is about a very well-loved, can't imagine my life without, there for me ALL the time, helps me relax, rarely let's me down blessing. What could it be you ask? My Heating Pad!! Today's writing topic, as part of the WEGO HEALTH CHALLENGE is to write a product review.
"What’s your favorite health-related product? Share it with your community and tell them why you love it so much and how it has helped you on your patient journey." #HAWMC In all honesty, I should write about my feeding tube and pump, since it's what keeps me living by receiving some sort of nutrition, no matter how small. Though I am very thankful for it, it can also be a hassle. My heating pad, well warming throw, has a more positive relationship. Sunbeam Warming Throw My soft gray warming throw has provided me with a lot of comfort whenever Gastroparesis is pulling me down. Countless days, I have had it wrapped around my abdomen and lower back with heat level on high. The heat from the throw can help me feel cozy and warm when I am tired and withdrawn. More importantly though, the throw can lessen some of the abdominal pain and discomfort. No, it's not perfect and unfortunately it is not magic. It doesn't completely take away the pain, yet can help the muscles relax and help "mute" some of the pain. It is not uncommon to have this trusted throw working against my discomfort for 5 hours or more each and every day. I would be lost without this amazing health product. My warming throw is not perfect, though. If I had my choice, it would be cordless, so I could walk around with it on my abdomen. As it is now, I have to disconnect and take it off (so sad) whenever I need to be away from my recliner. The only other thing I would change, would be to make it get hotter without burning my skin. I have used it so much that my skin has become accustomed to it. While it still provides much needed relief, it just doesn't feel hot anymore. In conclusion, I am very appreciative of the Sunbeam Warming Throw that my husband purchased for me. The heat helps numb some of my abdominal pain and discomfort, while providing much needed cozy comfort. HOPING TO REACH
EVERYONE WITH GASTROPARESIS! ATTEMPTING TO END LONLINESS CAUSED BY GP! LETTING EVERYONE HEAR OUR STORIES, BY USING TWITTER, FACEBOOK, INSPIRE, BLOGS TO NAME A FEW. HOLDING ON FOR BETTER TREATMENTS, OR BETTER YET A CURE!! #HAWMC Challenge:
Bye, bye, bye… Living witsh an illness, you are more likely to face people who don’t understand your daily struggles. Sometimes, these people can be inconsiderate and hurtful. Have you ever wanted to tell them how you really feel, but didn’t feel like you were able to? Now is your chance! Write an open letter to the people who have hurt you. What would you say to them? What lessons would you like them to learn? I have been hurt and dismayed time and time again by ego-tistical doctors. My health is placed in their hands, yet sometimes they fail me. My letter today is directed toward two doctors that I hope I will never have again. Dear Dr. A & B, I am sorry that I ever had the opportunity to meet you. When I saw you this past Autumn you took my condition lightly. You never took the time to listen to my issues and concerns. You walked right into the room and passed judgement on me, never considering the true cause to my pain, nausea, and inability to tolerate tube feeds. You both came in my room preoccupied, literally staying for less than 5 minutes. Dr. A, I met you in the emergency room after my first ever ambulance arrival. I had never had 911 called for me or been on an ambulance. I was in so much pain, even having difficulty breathing or moving. I was already frustrated, after the nurse rolled her eyes at me when I needed help changing to the gown. When you walked in you were told that I had Gastroparesis. When asked, you said that you were familiar with Gastroparesis. The nurse came in with your treatment choice, a GI cocktail. Shortly afterwards you discharged me with a couple prescriptions, both of which are NOT supposed to be taken with Gastroparesis. No thanks there. Not only that, when I was leaving I asked for a copy of my labs. Believe it or not, the had a lab value that was way off. What a joke! After emailing my GI, I was instructed to see my PCP as soon as possible to have the lab retested. Dr. B, I met you 2 days later as inpatient. You walked in my hospital room. Before examining me or listening to me you told me that my pain, nausea, and inability to run tube feeds was a result of stress! REALLY! I could not believe my ears. In fact, I was lost and in tears. I know my body. I know when I am under stress or not. That could not be further from the truth. I was in PAIN, severe pain. I had been 3 days with no tube feeds. And you told me it was because I was stressed. I was blessed that you were only in charge of my care for 1 or 2 days. (My other hospitalists were great.) I can not explain how belittled you both made me feel. I was suffering. I was in so much discomfort that death actually sounded like a good option. You both disappointed me beyond measure. I needed you to provide comfort. It is very difficult for me to trust and feel comfortable with doctors; And you both intensified my reasons for why I hold this distrust toward doctors. Luckily, not all doctors are like you. There are some doctors that listen to my complaints, communicate with me about my needs, and honestly try to help me. Unlike you, there are some doctors that treat patients like real people and actually care! These authentic doctors were able to take my symptoms and form a real plan on how to improve my condition. What you thought was "nothing" or just "whining" actually kept me hospitalized for an entire week. During those 2 weeks I had no nutrition in my body, just iv fluids. They determined that I had gallstones and an inflamed gallbladder accompanied by a horrible Gastroparesis flare. It was NOT just a stomachache and it was NOT stress. You both failed me and I hope I never have to meet your presence again. If I do, I hope you have a new outlook on how to treat and listen to your patients. Please take a moment to think about how you would like yourself and/or your family members treated by their doctors. And beware! I have become much more vocal about the treatment I deserve. I no longer hesitate. If I think you are taking me as a joke, I will let you and the administrator know. Patients should be treated like real people and not just a chart. Sometimes, just taking a moment to discuss the symptoms with the patient, guides you so much better than just numbers or notes on a chart. I hope that you never have to experience the negativity that I faced under your care. Well, actually I take that back. I hope you do see how lack of respect from your doctor feels. Maybe then you can take a step closer to being a respectable doctor that actually improves their patients' conditions. Today's CHALLENGE: "Make it a great day. Life is full of ups and downs. Sometimes, the type of day we have is out of our control, but other times we can influence how our day is going. Come up with 5 tips for changing your frame of mind when you're having a bad day!" (#HAWMC WEGOHEALTH) Living with any illness, especically an invisible one like Gastroparesis, is tough. You never know what kind of day it's going to be until you wake up. Even then, things can change immediately, for no apparent reason. A couple bites of a cookie, or sliver of whatever your taste buds desire, on a day when you actually feel normal can cause you dire consequences; In just a couple of moments your best day can become one of your absolute worst. Similarly, a nice walk in a park, an essential grocery run, or even a child's ballgame can drain those with Gastroparesis. The majority of the time our day is determined by the day-to-day symptoms and their severity at the time. When symptoms are present, and my day is not a desirable day, there are things that I try to help improve my mood. Unfortunately, they usually only help when symptoms are on the minimal, and if I'm lucky the moderate days. 5 TIPS FOR MENTALLY IMPROVING MY DAY 1. Prayers I do not expect immediate answers to my prayers. However, praying does provide some relief. Knowing that God understands that I am not angry about my pain or discomfort is important. My prayers usually include pleas to help others, as well as myself, have the strength to endure the troubles that we are facing. I know that everything happens for a reason and that God has a plan and path for my life. I pray that he will help us follow his plan, discover our purpose, and have the strength to achieve it. 2. MUSIC Listening to music is on activity that I try to improve my mood on during down moments/days. The music doesn't improve my symptoms; However, it does help me gain the much needed strength to face and endure my symptoms. Music helps me remain a fighter and not give up on myself. I listen to a variety of music, but during my difficult times I always find comfort from my Contemporary Christian Music playlist. Some of my favorite artists are Josh Wilson, Matthew West, Tenth Avenue North, Chris Tomlin, Mercy Me, and Plumb. 3. Online Communication There are a few different ways that I find comfort online. Lots of times I am back and forth between them at the same time. All help me refocus my mind and attention off of my body. 1) Talking with online friends via my support group. Sharing my worries while helping them with theirs. 2) Selectively chatting with a special friend or two. Knowing that I am being heard but not being judged. Sometimes their uplifting words or change of subject can help. 3) Twitter - Advocating, Sharing, and Reading others posts are enjoyable to me. It doesn't take much energy at all, but I feel like I am at least doing something productive. If the mood is right, I may even research Gastroparesis and treatment options to see if there's anything new to help others like me. 4) Blogging helps me discover more about my self. Many times I have a difficult time beginning an entry, yet eventually get lost in my words. My innermost feelings and thoughts sometimes evolve into words on a page. While helping myself, I share these blogs in hopes that they will help someone else as well. 4. Family I can't even explain the support, strength, and positivity that I gain from my family, especially my kids. When I am suffering or in a low point, my kids are always there for me. Sometimes they offer jokes, backrubs, special hugs, prayers, heating pads, etc all in an effort to help me feel better. I would love to say that they are able to take away my pain, nausea, fatigue, and other symptoms; unfortunately that's not the case. However, they can help improve my mood and remind me why it's essential that I don't give up. They help me see the importance of continuing my fight. My children are my light, they are my reason for living, and I love them for their unconditional love and support. 5. Sleep
Everyday as I read post on Facebook, read messages on Inspire, read other's blogs, and read "tweets" I am reminded of how many unique, compassionate, and strong people I truly know. The majority of these brave warriors I have never met in person, and most likely never will. However, our connections, our discussions, our prayers, our tears, our frustrations, our support for each other is so much greater and more in-depth than with our other "in-person" friends. It doesn't matter if they have Gastroparesis, Crohn's , Colitis, or some other chronic digestive disorder, we truly understand each other. And understanding is sometimes all that we desire. These connections, these friendships, are more meaningful than most even realize. We can truly "see" each other's invisible battles and help each other fight through them. We don't have to hide. We don't have to put on a mask. We don't have to pretend to be feeling well. We don't have to pretend to have control over our condition. We can be "real" again. We can openly share our troubles and gain strength from others while at the same time giving hope to one another. We can be honest about what is bothering us (medically, physically, emotionally, etc) because we know someone is truly listening, someone that can relate. We can cry and laugh together over situations that others can't even imagine. We can share and receive the best possible advice. We can work together to bring awareness publicly. I never truly grasped this until recently. As a part of our advocacy group (Gastroparesis: Fighting for Change) we started sharing our stories via email, letters, and openly on the internet. (Yes, this frightened me more than anyone will ever know.) I knew it was for a great cause. I admit the public, including medical providers and researchers, needs to be aware of Gastroparesis, so hesitantly I began sharing my story. Now most, especially those that are not affected, are probably sick and tired of reading my post. But that's alright. What I didn't know was how much it would help me and others like me. Melissa and her idea of this advocacy group found me at a point when I was in despair. I had begun giving up hope. I was depressed and felt alone in my suffering. I knew my family wanted to understand, they just couldn't. I knew my family wanted to help me, they just couldn't. And knowing how helpless they felt just made me feel more helpless and alone. That's when I was asked to join the newly forming advocacy group, which at that point had no name. I was weary and skeptical, but at that point figured why not? Now, just a few months later, I see the blessing. I see the rainbow in my darkest storm. God has set me on a path, which I am trying my best to understand and follow. Being a part of the advocacy group led me to sharing my inner most battles with Gastroparesis for anybody in the world to read. At first, there was too much fear for me to grasp. But now, I am enlightened. I am empowered. I am a peace. Yes, I still have my struggles with Gastroparesis. Yes, I still feel awful. I am nauseous and fatigued to levels that only other GPers can understand. Yes, I hurt. Yes, I still want to eat but instead am struggling to receive adequate nutrition in my feeding tube. But you know what - that's ok! We all have our battles and we will eventually overcome them. I may not have all the answers. I may not like my options. But I can't sit back and drown in misery over the unknowns or the things that are out of my control. I have to do my best to "live", however it may be, until new treatments become available. I will not let Gastroparesis win, and neither should you. I hear constantly how strong I am and how I am a ray of hope. I hear about how stories like mine and other GP friends have helped inspire others. I have received messages about how reading my story provided strength at a time when they were considering ending their life. I have been told that reading about the faith I have has improved their faith. That if I can still stand strong after what I've been through, then so can they. You know what? My strength has not come solely from within. I have gained a lot of strength from God. What's ironic is the same people, people surviving with Gastroparesis and other invisible illnesses, are the ones that inspire me. You are the ones who provide me strength with your posts and stories. You are the ones whose struggles, push me to fight even harder for awareness. I am not strong alone. I am just as weak, torn, and frustrated as many of you. But we have to stick together. As a team, we are no longer alone! As a team, we can help each other up! As a team, we can fight for a cure! As a team, we can win! Quitting is not an option! If you feel weak, reach out and we'll catch you! We will not let you fall. Just reach out, please. You're a warrior! Keep up the great fight! ` |
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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