April 27 Fighting ER visit after another blackout Wed. night with blood pressure drop and HR jumping. Heavy head, weak, lightheaded, no urine for almost 24 hrs. Mom’s words resonating in my mind. Fear and concern on her face. “Are you giving up? You are playing with your life! You are too strong & have too much to live for! Are you just going to sit there & wait until it's too late! You’re so pale, look at the color of your skin. We need to get you some fluids, now! Why are you being so stubborn? Please let's go get some fluids! Don’t give up! Think about your kids, they need you.” Part of me wants to keep fighting, keep moving forward, the other part of me is just too discouraged and tired. But what did I have to lose? I didn't want her or rest of my family to be upset or scared. Just so exhausted. Was scared that I would be dismissed or even turned away because we all know how ERs can be. I wouldn't be able to emotionally or physically handle hours of waiting just to be denied help or mocked. I knew that I didn't have the energy to fight my case. I just wanted and needed help without friction. I needed to feel better. Thurs morning I caved, they won. Luckily everything worked in my favor. Excellent ER visit overall after getting out of waiting room. Great care, friendly, nausea control and 3 bags of fluid. Antibiotic (macrobid) for bladder infection. Accidentally learned, by mom’s slip up, that husband was concerned that I'm going to give up and stop fighting, he's worried of how weak and frail I appeared physically and how down I was emotionally. Apparently he called my mom for backup, because he knew she'd successfully convince me to seek care from ER. Glen, Mike (my amazing home nurse), & my GI worked in the background to put plan for home fluids in action by Tues. Will I make it until then without more fluids? ER team is not so sure. But we shall see. Insurance is still denying my nausea medicine. Still feeling weak & miserable. Sun night/Mon similar symptoms of light-headed & near blackouts have begun to repeat again. Hoping fluids tomorrow at home via PORT will turn things around. If not I'll have to seriously reconsider what in the world to do. How can I survive if I can't regain some control or relief from these symptoms? My mood improves until symptoms get difficult and more severe, when I'm unable to stop or even just decrease the severity of the symptoms, that's when my mood plummets. If I could just find a way to keep myself away from the edge with effective symptom management, I would be safer and less likely to fall off the dangerous cliff. Thankfully not in physical pain. Just completely drained and beyond exhausted. Nausea out of control when without patch but side effects with it are horrible as well. Lightheaded spells bad once again today (Mon) Though tired I decided to help family by warming up dinner. Nothing extravagant. However while standing over stove I became weak and everything went blurry heart racing, requiring me to sit down before fainting. Kids had to finish fixing it for me. Tried again to help daughter by scraping spaghetti squash but once again had to sit due to weakness and near fainting. Nausea horrendous. Escaped to bedroom and collapsed on the floor to cry. Wishing all the tears hidden inside me would just flow and provide me with some sort of relief. Crying escaped, few tears shed. I needed more time alone, to cry it out, regain some sense of self. Dad’s unexpected but welcomed visit interrupted so of course I had to attempt, which proved to be unsuccessful, to regain composure of my emotions. Geez I am so worn and weary! I try to keep positive, I try to stay strong but my body is failing me again and again. I honestly don't think I can survive much longer like this. I'm broken and literally don't have the energy to hold everything together anymore. My family saw me break and even they don't know what to say. I don't know what to do about it but it's killing me to be so useless and witness my family feel so helpless. I am so blessed and thankful to have an amazing support team including family and medical providers to fight for me when I can't, I just don't know what they see anymore. I see a stranger that's weak frail discouraged exhausted & losing. I’m unable to see me. What do they see? I love that they care so much, but why? What do I offer or provide them with in return? Am I worthy of their assistance & efforts, or am I just a lost cause that should let it all just be? No more fighting, no more pushing, no more trying, just let whatever's gonna be, be. Is that what I want? Do I want to give up and risk it all? When I'm down in the trenches due to unresolved symptoms sometimes I wonder should we all just throw our hands up in the air, cover me up, and say done. But then there’s the little light that shines within, regardless of how dim. God placed it there, that I am for sure, to help me now and then. It brightens as I see the faces of my kids, nephews, and nieces as well as the rest of my family. This glimmering light somehow keeps me inching forward until eventually I find my way out of the darkness. I get what I need to do, what I want to do and what I feel like doing and well those thoughts do not always agree. And though they may waiver, I'm not sure I have or will ever have the most favorable answer. One thing I’ve noticed - dark life ending thoughts enter my mind when I am physically down, completely dehydrated and physically exhausted for days after days. However, when fluids are replaced and hydration improves even though physically tired and exhausted I feel more hopeful and positive. My family and Mike remind me that everytime I get so dehydrated that it takes a week or longer to rebound. They emphasize how these spells of dehydration take a lot from my body, become dangerous, and take time to resolve which is why we need to stay on top of keeping them managed. With this I agree. Upon improvements, even very slight ones, I become embarrassed that I would allow myself to become so weak and so lost. It’s a back and forth battle, seemingly based on my symptoms and most recently fluids. This battle is wearing me down, I openly tell my family that I’m tired of fighting it, I want to feel better but feel that the more I try the further away I am, but sitting back and just letting it be isn’t helping either (For instance, the ER hesitation last week). I just don’t know what to do, think, or say anymore. I can’t truly explain to my GI how bad things get when symptoms and hydration issues rear their ugliest sides. When symptoms/hydration are controlled, my mind is at ease. My scary thoughts are nowhere near when I’m hydrated, having decent days, low symptom days, or just tired - they only appear when I’m struggling to survive on fumes day after day with no improvements or in this case no fluids and debilitating nausea. I am not depressed about my illness. I become depressed and feel worthless when my body gets to the point that it literally can no longer function, can’t stand without feeling faint, can’t lift my head or arms due to fatigue, and can’t do anything to help myself. May 6, Finally feeling better hydrated! Dad invited me to go sit with him for lunch, at first I hesitated not sure if I felt energized enough, but then decided I would. Enjoyed time with him, even though I ended up sick from trying to drink something orally. Definitely worthwhile time & ok knowing that eventually the physical discomfort would pass since it was a result of my trying, that I can accept. Exhaustion from attending movie with family for Mother’s Day, exhaustion acceptable and manageable because it was a meaningful day with fatigue simply a result of enjoying the day. Tomorrow will require extra rest, which I’m totally okay with, and fluids coming Tuesday which should help the once again appearance of light-headed spells. Tired but still attended Carmen's softball game last night. Exhaustion hit while there but I survived.. Sleepless night due to exhaustion and pain which kept me in bed “recovering” until 11 am but I’m ok. --------------------------------- After thought: Is doing nothing when broken, miserably sick & exhausted the same as giving up? I have not gotten to the point of intentionally hurting myself, thoughts about life ending may be considered, but absolutely no action or plan. However, looking back on the harsh ride recently and wanting to do nothing at all, just wanted to wait it out even though I knew I needed medical help, was that behavior a reflection of my weak state, fear of rejection, lack of energy to think rationally, or me just so exhausted physically & mentally that I was actually giving up? Mixture possibly? It bewilders me how much brighter the days seem, how much more meaningful life is, when I'm hydrated and having decent moments. Able to accept lifestyle changes, even pain & nausea when related to my attempts/actions. Able to brace through the storm with patience & hope. But when the fluids have escaped, dehydration manifest, nausea constant & severe, body too drained nutritionally to lift my head - I've become inclined to quit. To give up. No longer caring if I survive. Relying entirely on my faith, family, and even medical team to step in and carry me. Willing to disappear entirely just to end the suffering. Unable to see the purpose of waiting to see if tomorrow is better. Hoping, after a positive weekend (with manageable downfalls but lovely memories) that I can remember these special and meaningful moments to avoid future cliff dives. As today, I hold high value for my life. A life that I ultimately WANT TO LIVE with love, gratitude, purpose, and appreciation for all that I am and all the people I'm blessed to have as part of my life.
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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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