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.