I am beyond tired and exhausted! I'm not going to lie.
I'm sick of being sick. I'm sick of being in pain and so nauseous all of the time! Gastroparesis is beginning to kick my tail, physically and emotionally. I want to LIVE my life with my kids, but seem to be just here to observe and witness their lives. Don't get me wrong, I am grateful and blessed for the opportunity to see my kids happy and healthy! I would just love to return to LIVING WITH them and not beside them.
This damn disease has started to break me. I have found myself pulling away from support groups. I still check in and out, but not connecting, reading, or posting as much as I once was. I still care dearly for the members and friends that I have met as a result of the Facebook groups. I still return to offer advice, support, ray of hope, and sometimes ask for advice or prayer myself. But not as often.
Why? I ask myself this question daily. Maybe it's to protect my heart from losing others to death - there have been so many recently. Maybe it's to distant myself from hearing how so many are suffering like me, many much worse. Maybe it's to somehow "pretend" that Gastroparesis can improve and that I will be cured - though I understand more and more each day that this is unlikely through medicine alone. I try to leave my worries about healing in God's hands.
To be honest, I don't know why I am spending less time in these groups. It very well could be that I am spending so much energy and time advocating on Twitter and other places, that I just don't have the energy to connect regularly on Facebook. I spend so much time, every day, trying to connect and spread awareness to those that may be able to help us! Twitter is less personal, but the connections are widely dispersed and appreciated. I hold hope that something as simple as a ReTweet from hospital, doctor, researcher, fellow GPer, etc.. can eventually hit a gold mine and improve the outlook for all that suffer with Gastroparesis.
I have become an open book, when usually very shy. I share my personal stories with the world, in the off chance that someone will read it and be inspired and help us fight for better treatments and one day a cure to Gastroparesis. I don't hide the ugly part of this disease. I put it all out there so that other GPers can know that they are not alone, but also so medical providers and the general public can visualize the quality of life that we are struggling with daily.
I'm not going to lie. Sometimes I feel like throwing my hands up, curling up on my recliner with a heating pad or in a hot bath, and just struggle in silence. I find myself feeling like giving up more and more. It would be so much easier. But I can't! There are too many suffering like me, many more severe, many younger - even young kids. I have to do what I can, to help get our message out. Researchers, Drs, Pharmaceuticals, and the public HAVE to learn how awful Gastroparesis is, how it impairs our lives, and the urgency of finding better treatment options, or better yet a cure. Giving up may be an option, it may even seem to be the best road to take at times, but I know in my heart that I can't take that route. I'm a fighter and will continue fighting for others as well as myself.
I have met some amazing people as a result of this illness. When I am at my lowest, someone always steps up and inspires me to continue the fight for awareness. Sometimes it's as simple as a Retweet/Comment from a friend or someone completely unexpected. Today, it was a video created about Gastroparesis from someone that doesn't even have GP. Mr. McKim accepted the challenge of learning how debilitating this disease can be and chose to join our awareness movement with an amazing informational video.
Like it or not, when dealing day in and day out with a chronic illness (In my case, Gastroparesis.) one learns very quickly what the people around them are truly like.
People that I looked at as "friends" are no where to be found. Very few of them care to contact me, even by FB messaging. Very few choose to "like" or more importantly read what I posts. Cute pictures or corny jokes are seen and shared by many, but serious articles or even awareness videos are ignored. If it's not the cheery, happy me - my "so called" friends just disappear. I try to persuade myself that it's because they don't want to bother me or because they don't know what to say, but a simple little "How are you? or Thinking of you" FB message or email goes a long ways. The truth is - they are not my "true" friends, they're just nice people I came to know across my life journeys.
My truest friends are very limited, and that's okay with me. It's better to have a few close "real" friends, than many that are "just there when times are good" friends. Having a chronic illness has definitely made me rethink and ponder over the relationships/friendships that I have. I honestly have found out the true colors of so many. Now that I see the "real" them, I don't have to pretend anymore. I don't have to worry about offending or hurting anyone's feelings, as they will probably never read my postings anyway.
I am very appreciative of the new friends I've met along this crazy ride. Connected by fate, possibly. Knowing I can say anything and they are there to support me. If I am quiet and not posting during the day, they are checking on me to make sure I'm ok. If I need someone to vent to, they are always there, as I am for them. What's ironic is that I am closer with a few friends I met recently online, than I am with the ones I've spent years and years of my life with.
Thankfully, my family has been wonderful! Their true colors appeared as well. They are here, unconditional love flowing, caring enough to take me to medical appointments, sometimes 3 times in a week. They have come together as a team to help me receive the best possible medical care I can.
Yet another death in our Gastroparesis Community. She was young and should have been full of life, only 30 years old. I did not have the pleasure of knowing her, yet many of my friends did. So heartbreaking and morale sinking. We keep fighting every single day to bring awareness to our disease, no matter how bad we feel, we still keep fighting. It's scary. I know that Gastroparesis doesn't kill by itself; however complications such as malnutrition, dehydration, organ failure, line/tube infections, etc are created from Gastroparesis. I can't help but feel defeated.
Yet another medical provider telling me that I am not getting enough nutrition, too dehydrated, and lack of energy needs to be corrected. She believes that I need IVs to "reboot" my system. I personally don't have the energy to sit in an ER dept for HOURS face the reality that they will not want to give me fluids. I see my PCP next week, so we shall see if fluids are suggested/offered or if I continue on the "wait and see" approach a little longer.
Yet another medication issue. Finding a pharmacy that could compound it was extremely difficult. Finally found a place about 45 min away from my house and can pick it up later this week. That's ridiculous! Driving 45 min to pick up a prescription and 45 min back home.
Yet another day of fighting my symptoms, fighting with every ounce of strength, just to survive the day and return to bed in hopes of rejuvination.
How is it possible to disappear or fade right before others' eyes, especially when I try to offer so much hope to others?
The past few weeks have been horrendous for me. Constant fatigue, abdominal pain, and nausea. Yet, I kept trying to help others see that we can fight together and help each other out. I urge and persuade others to join our fight daily and convince them to never give up - when I myself want to give up at times. Why is it so easy to give advice to others, offer comfort, and give a purpose for moving forward - when I am just like them, struggling to survive?
Emotionally, I have been very torn lately. I love the members in my online support group, but have questioned rather or not I need to stay. I have considered leaving the groups, just to protect my own heart. It is heartbreaking to hear story after story about how Gastroparesis impacts their lives physically or emotionally with lack of support from their families, friends, and in some cases their medical team. It is devastating to hear of members dying as a result of complications from this disease or children that are suffering along with us. I feel their pain in the depths of my soul, as I too suffer with the day in and day out reality of GP. I feel so very fortunate to have a great support team of family, friends, and medical providers.
Yet, even with the sadness I feel reading their stories - I am able to see a ray of hope. Why? Because the comments and stickers that follow are so genuine, positive, and encouraging. It's truly amazing! Even when we are having a difficult day, we are able to build someone else up. We are able to inspire each other, with the very words we need to hear ourselves.
I don't understand why that happens, but it does. And the friendships formed as a result are amazing. There is no way to put into words how meaningful these friendships can become. Especially, when you are able to connect not only over Gastroparesis symptoms, but life in and of itself. There is no way possible that others dear to us can truly grasp what we are experiencing, so finding others who can relate, is a gold mine. So when it comes down to it - I have to take the risk of heartache and sadness, as these very people, these friends, are the ones able to catch me and hold me up when I am falling to pieces. These moments are the fuel to keep me fighting for all afflicted with Gastroparesis.
My family is great, don't get me wrong, but there are times when I have to "pretend" or "hide" how I feel as to not upset them. I know they mean well, I truly do, but I feel so guilty when they are saddened because of me. I don't want them to worry about me, I will be alright, eventually. Some days are better than others, but I will survive and fight- mainly because of my kids and them. The sadness in their eyes and the tears shed on my account, are not what I want to see when I look at my kids, husband, or parents. I need them strong. I need them hopeful. Their strength lifts me up. So therefore, I too, have to portray strength and faith.
So how am I disappearing in plain sight?
The weak and broken me eventually disappears, if only for a short time, as I pretend to be strong and have it all together in my family's eyes. At the same time, hanging it all out to dry with my friends online as we share our stories and encourage each other, also helps the worn and torn me disappear into hiding for a while.
From there the hopeful and powerful spirit in me emerges to continue this fight and continue advocating to help improve our physical health and well being. Gastroparesis will NOT win! We WILL make Gastroparesis disappear right before our eyes one day. Hopefully sooner than later.
Gastroparesis is a debilitating disease that negatively impacts our lives. With the help of friends and our families we created a YOUTUBE video to help spread awareness! I hope you will take the time to watch this video with inspiring music from Rachel Platten. See what exactly we are fighting to regain! You may be surprised.
Gastroparesis Fight https://youtu.be/ezWsFDll_Vw via @YouTube
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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