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.
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!!
A 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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