If you know anything about me, you know that I love my kids more than life itself. I am a very proud mother and their largest fan by far! This past weekend, my daughter's Babe Ruth All Stars softball team played in the State Tournament.
As expected in June, the sun was radiating with multiple ball games over a 3 day period. My body screamed against me, but I was determined to attend all of her games regardless of how much nausea, pain, or fatigue I had. Was this a reasonable choice? Probably not. My body reminded me each day, just how much it hated me. Yet, my mind and heart actually felt like I was "LIVING" again and not just sitting at home alive. My muscles are hurting all over, but I was "softball mom!" I FINALLY felt valued and was once again a part of my children's lives, whereas at home I sometimes become become lost.
However, this feat was not perfect. Even though I enjoyed the games, I was very sore, was hurting, and dehydrated. Each morning was more difficult for me to even stand up. Trips back to the car after sitting for a game, became longer and longer. Now today, the day after the games I am still paying the consequences and likely will be the rest of this week. But I'm okay with that, because it was worthwhile.
One day I will get a hold of this gastroparesis! I will find some type of treatment that will help me "LIVE" more often and without harsh physical consequences or limitations. I will find a way to "live" more often, than just being "Alive".
Where's my inner warrior?
Where's my strong, courageous, fighter?
Where's my crusader?
My hope is fading,
my symptoms are taking over.
I am fading,
I am slowly slipping away.
Just don't know how much longer
I can survive.
I am here,
I am present,
I keep persevering for my kids
I keep trying for my family.
Unquestioning God's plan & purpose.
Believing change will come
And that I'm here for a reason.
But that's it.
I'm JUST here.
Where's the fun, curious, adventurous me?
Where's the me that loves life?
Where IS my life?
How can I recapture the "real" me?
How can I return to living?
I try to stay strong.
I try to stay positive.
I'ts just so hard
Gastroparesis is robbing my life
As well as some of my friends'.
Day in Day out we give everything!
We use all of our energy.
Just to exist and fight again tomorrow
and the next day and the next?
When will we be heard?
When will we be helped?
This invisible disease has hidden us!
Trapping our true inner self!
Leaving us struggling internally
While NO ONE seems to be searching!
No one willing to help!
When will we be able to escape these walls?
When will WE reappear and LIVE again?
We just want to feel better!
Is that too much to ask?
© 2015 Trisha Bundy ALL RIGHTS RESERVED
Beautiful calm at a distance
Fearless surfers delight and experience
Relaxing to watch and listen to
An escape from reality
Knocking you down again and again
Drowning, holding you under
Unable to breathe
Disabling, not letting you stand up
Exhaustion beyond measure
Ride it out, fight to exist, or just give up and float away?
That's the question we are faced with each and every day!
Living with Gastroparesis is like an ocean.
Easy for those without GP to see just the outward appearance,
while only those living with GP truly understand the battles within.
I am bewildered at how I can experience so much pride and joy, while also feeling like my body is going to completely collapse from nausea, pain, and fatigue. Let me explain..
This year has been an awful year for my health, even though I had high hopes in Dec that this would be the year my health improved and turned around, finally! So far not the case.
Yesterday, was a very important, worthwhile, and valued day for my family, my students, and me. I have not been in the classroom, or even been able to visit my fifth graders since late Oct. Though I was already feeling drained and nauseous, I was also eager to surprise them with a visit. I slowly (because that's how my body works now) made it to the back hall of the school, stopping before I entered to lean against the wall and catch my breath. I had 3 classes to visit, all right there together. I didn't know what to expect from the students, it had been so long since I had seen them. However, the reactions of my Homeroom floored me, the other 2 classes very similar. They were so excited and hurriedly came to flood me with hugs. After all the hugs were given (which meant the world to me), I talked with them for a few minutes, all 3 classes, sharing with them how beautiful and handsome they looked, how I was sorry for only physically being their teacher for a short period of time this year, but how my thoughts had been with them all year long. I shared how bad I had really wanted to improve and return, but just didn't happen that way. I went on to share how very proud I was of them, how their teachers had been keeping me up to date, as well as my daughter (as she was one of their classmates), and how blessed we were with Mrs. Kyle being able to continue being their substitute all year long.
After visiting all 3 classes, I slowly made my way up to the front of the building. I honestly thought and believed I was going to collapse before getting there, but kept fighting forward. My mom was not pleased by the way I looked at all, and though I tried standing and waiting, alongside the other parents, she insisted I sit down until we were able to progress to the auditorium for the 5th grade promotion ceremony. It seemed like hours, though only minutes. I was so exhausted, but tried to put on my strong "have-it-together" composure, and made it to the auditorium. As we were sitting there it was evident how weak and awful I was feeling. My husband, whom had chosen to sit in the back of the auditorium (easy access out to leave) even came to check on me as he could tell I wasn't doing to well. (My mom and I were sitting up front for better pics). We had about 20 mins before the program began, my nausea just continued increasing to the point I felt like I was going to begin heaving, my energy was to the point that I was slooped in my chair in an effort to provide a place to rest my head.
The ceremony was great! My daughter made me so very proud, receiving numerous awards for all of her hard work, dedication, and effort this year - even with all of the challenges at home due to my illness and her tearful heartaches from me not being there to be her teacher this year. My pride was at it's highest, though my physical turmoil was becoming unbearable.
After returning home, I was able to take in the days' events. Thinking about the ceremony, thinking about the visit. I tried to consider if I had been genuine. Thought about the comments that were made to me by the students, other staff members, and parents. For the most part, the questions were fairly simple and routine, with a simple "I'm hanging in", "I'm happy to be here", "Thank you for your prayers", "I'm so proud of your child" offered as my response. However, the comments-especially from the students- just resonated within me, most of which I chose not to follow with a comment - as I was trying my best to stay positive. Many students and a few parents commented on how different I looked, how I didn't look like myself, and how much weight I have lost. A few years ago these comments would have been welcomed and greatly appreciated, yet now, they are a reminder of my horrendous health journey with an invisible illness that no-one seems to understand.
But my day did not end here, it continued on to my daughter's final softball game of the season. I could not let her down, regardless of how bad I felt! I had to pull it together and be there for her. The game was a good one, concentration a bit difficult for me, dizzy spells and heavy eyes interfering for me, but I was there. And that in itself was extremely important. I was unbalanced when it was time to stand up and return to our car, but my chair offered a "cane-like" presence and other cars were great at keeping me upright. I made it to the car successfully and was able to offer my daughter encouragement and celebratory comments.
Finally, we were able to return home. A Shower, that I had to sit down and regain energy for prior to. Then bedtime after hugs. No way could I keep my body up, even for just a few minutes. I was a wobbly mess to reckon with. Drifted off to sleep immediately.
After a great night of sleep, I woke up mentally refreshed possibly, but symptoms galore. My body literally felt like it had been run over by a train. All of my muscles hurt so bad, nausea intense, and no energy whatsoever. Multiple times I had to stop and save this article, just so I could get some rest and return to writing later. My body is depleted and will need time to recoup. A hot bath was attempted and even relaxing at the moment, but unfortunately was a let down in the long run. As my muscles, lack of energy, and GP symptoms continued.
Would I do it all over again? Absolutely!!! Without a doubt.
Yesterday was very special in so many ways and emotionally needed. As a teacher, it was great seeing my students and adding closure to this school year. As a mother, I was able to participate in watching my little girl, become a beautiful young lady, walking out of elementary school to begin a new journey through middle school. I was also able to witness her final game this season. Days like this, memories being made with the kids, are what keep me going. This was a day full of pride and worthy of all my energy.
Rating on 1-10 scale?
10 for Values of Family and Teaching- Very Special & Memorable day!
2 for Physical Health (As the day progressed, I continued to get weaker and feel worse, no matter how much enjoyment I was finding. I pushed my body to the point of nearly passing out/collapsing, not only once but a couple of times. I didn't care how I was being physically impacted at all - I was all about meeting my other values regardless of the consequences.)
Today I sit contemplating, which path is the right path?
Do I struggle to fight and live with harsh consequences following?
Do I try and listen to my body, missing out on living life?
Is there a balance that can be found between the two?
If so, where is that balance?
I just don't know anymore!
Gastroparesis has been kicking me all around physically and emotionally.
I try to do what is right for my family, which may or may not include what is best for me.
1) I enjoy my daughter's softball games, making sure I'm there each time. Though sometimes extremely uncomfortable from pain, nausea, fatigue. I try to hide how I feel at these games as much as possible. However, this past game that wasn't the case. I literally felt like I was going to pass out, not from heat, likely from dehydration.
I thought I had it under control, made it to the bathroom for a cold wet papertowel and heaving, to return and cheer her own. It was an amazing game, probably the best of the season. However, when the game was over she didn't want to talk about how well the team or she did. She didn't want to talk about winning 14-5. She didn't want to talk about the big plays she made at first, her powerful hitting, or her amazing pitching during the last inning.
She wanted to talk about me. She was worried and concerned about me. I felt so guilty. I had failed at hiding how I felt. (Unfortunately, failing at hiding feelings from family a lot lately.) She was supposed to be super excited about the game, yet I was stealing that emotion away from her, causing heartache instead. Why? Why could I not hide it better. Why could she not see how much pride I had for her and how she played? Why could she not see the joy I have when watching her play? Why does my illness have to impact her, and the rest of my family's joy?
2) School ends this week for my kids - hooray!! I am looking forward to spending more time with them at home. I don't know how often I will go swimming with them, if at all. Which saddens me, since I LOVE swimming. The sun and heat just don't seem to agree with my body needs. Hopefully, I can make it out there on a cloudy day or later in the evening. We'll see. Once again, I will be left torn. Do I push myself at the expense of becoming sick or having to cut their swimming short? Or stay at home so they can play and have fun until they are worn out?
3) Vacations. A vacation is already planned for my husband and kids. They are going camping for a few nights with trips to the amusement park. I knew better than to attempt this trip, though I LOVE CAMPING (haven't been in years). I knew that I wouldn't be comfortable and that an amusement park is too much for me to handle right now. The kids and my husband understand that as well. Still it hurts, I won't deny. I really want to be there. I want to enjoy time with them and create these fun and exciting memories. Instead, I am left at home alone. It's saddening, but the best choice for all involved.
4) Bedtimes have become early in my house. Many nights I am in bed before the kids, usually quite early. I try to compromise with my youngest daughter, as she seems to be the most impacted. I try to make sure that I watch one, sometimes two, episodes of Full House with her each night as we cuddle on the couch. Unfortunately, there are a few days that I have let her down. It was evident, as sadness spilled through her eyes, but never does she complain. Last night, I didn't think I would be able to make it. To her surprise, after my bedtime routine, I returned. She was so delighted, her eyes lit up with a spark of happiness.
5) Attending movies is another event that I must decline, most of the time. I have tried a few times, when having a decent day, but got caught with intense nausea or pain, stuck with no comfort to be found. Instead, I choose to stay home. My youngest sometimes decides to stay home as well, which hurts me, but also touches my heart. The last time she stayed home, we played UNO and other card games - which actually ended up being some nice quality time together. Now if I could just find more quality time activities to participate in with my kids.
Does Gastroparesis or other chronic illnesses impact your quality of life?
How do you decide which path is the best?
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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