Music is known to be cathartic for many people for many different reasons. Specific songs that speak to you in a unique and specific way. Songs that you can relate to for a variety of situations and emotions. Maybe there are songs that take you back to a special memory, that help motivate you, or that help you express love, sadness, or anger.
I love NF's music from his early albums to his most recent, "The Search". His lyrics are packed full with emotion. Words slung together like a masterpiece. He has composed, rapped, and sung songs that help me process anger, negativity, and frustration. One of his earlier songs, "Paralyzed" helped me when I felt like I was completely numb and irrelevant. Hearing the song was comforting to me and assisted me in moving through some my lowest emotional moments.
Below I have shared a few songs from his most recent album. These have been especially impactful and meaningful to me over the past year as I continue trying to maneuver through negativity that resides internally within me.
During the past few months I have been struggling with how to handle anger that I have apparently been suppressing within myself. It's tricky and challenging to face, release, get rid of, let go of this residing internal anger because it's not like normal anger that one may have toward someone else at times. When anger is created within a relationship with others, you can speak your mind, work on correcting the issue, or literally move on by distancing yourself from the person or situation. When you feel angry with yourself, your body, your mind, your illness, well there's not really a way to successfully distance yourself, yelling or arguing doesn't serve a purpose, and in some cases - there is not a way to "fix" to the problem.
Currently, most of the anger I feel inside of me comes as a result of how I feel about my chronic illness symptoms and their impact on various aspects of my life. This feeling of anger is focused inwardly toward myself, which makes it harder to process. As we already know, being angry at yourself, especially when it's over a circumstance or situation that you can't change (in my case the impact of chronic illness on my life physically and mentally), there's not much you can do without it becoming counterproductive.
Ignoring the anger or pushing it further down will not solve anything. In fact, it is more likely to just build up and then cause me to eventually "combust", explode or implode unexpectedly at the wrong time or place. Keeping the anger within and letting it "build" may allow me to feel better in the short term, but with time it will continue to dig away at me and risk making me feel much worse in the long run. Possibly, the reason that it has become more evident recently.
According to Alison Stone (LCSW https://www.wellandgood.com/good-advice/how-to-let-go-anger/)
“Anger is our system’s way of alerting us that we’re feeling something that we likely don’t want to be feeling.”
No secret there, right? I definitely don't want to feel like I have no control of my body's reactions to illness or deal with the emotional lows that continuous symptoms can have on my temperament. I don't want to feel like a burden at times and don't want to miss out on activities with my family, especially time with my kids. I don't want to depend on a feeding tube for nutrition. I don't want to deal with the financial expenses of chronic illness. I just want to feel "normal", at least sometimes, without the extreme negative consequences that come around every time I attempt to "participate" in life.
In the article linked above, Alison continued to explain how some negative emotions can lead to us feeling anger. For example, when we feel "hurt, betrayed, ignored, taken advantage of—anything that evokes vulnerability” anger can appear. “Any excessive negative feeling—fear, distress, shame, rejection—will likely trigger anger.”
I have to admit that as simple and elementary as knowing how one is feeling sounds, I still have a difficult time labeling and understanding how and why I feel the way that I do sometimes. When taking time to consider what feelings I have underlying and coinciding with the internal anger that I've been experiencing, I can definitely find examples of feeling hurt and betrayed by my own body (and at times my mind). Being vulnerable is a very sticky and challenging situation for me. I'm pretty sure that personal fears and other negative emotions are also present, and at times purposefully ignored or pushed aside. And well, to be honest, when my energy reserve is dwindling or symptoms are heightened, it doesn't take much for me to get caught and trapped in a negativity spiral of sorts. But, I don't want others to be aware of when this happens, so I often suppress or hide the emotions, and in doing so the cycle continues until emotions can resolve on their own or become overwhelming.
How can this be changed? How can I better handle and experience what I'm feeling without letting it bring me down any further? How do I "allow" myself to process anger and other negative emotions when I am the reason for them? When the root of my anger is a result of my illness and undependable body?
It's not uncommon or unrealistic to feel frustrated or resentful when my body will not cooperate with me. There have been moments of time where I feel like I am at my breaking point, moments when anger festers inside of me. And since I have no way to resolve the situation, since I can't MAKE my symptoms stop, since I can't create more active energy, the uncertainty of my symptoms, the absence of answers or explanations, make me feel angry. I hate my body for making me feel like this. I am also angry because I feel like I’m losing hope when I feel my roughest, which is counterproductive. In response, I get stuck trying to keep everything as positive as possible in the eyes of other, even when part of me feels like totally giving up on ever feeling better.
I have recognized and learned that sometimes just saying the words out loud to someone or even to myself, actually saying "I am angry! I feel angry! Why am I angry?" and thinking about it can eventually help relieve some of the tension that builds when keeping it all within. But to do that takes vulnerability, and well, I don't like that idea at all. Being vulnerable requires trust and can be extremely uncomfortable for me. Plus, even if I do want to talk with others, I have a difficult time finding the right words to express my thoughts and feelings. When I can find the words, writing (whether I choose to share it or not) helps. Therapy helps me face my emotions, even when I don't understand what's going on within me, because it provides me a safe place where I'm not being judged or ridiculed and I don't have to worry about saying something "wrong" that will cause new problems to arise. Lastly, music! Listening to music and lyrics that match my mood (singing along with lyrics that state how I feel when I'm alone) can offer me comfort and help release some of the negative emotions, such as anger and sadness.
What's on the other side of anger for me?
According to http://soulfulmed.com/blog-archive/2017/1/12/whats-on-the-other-side-of-anger,
anger "gives us the false illusion that we are in control of the situation." Well, as much as we hate to admit it, there is very little in this life, not just chronic illness, that we have actual control of. The only thing we can do is process our emotions and keep moving forward. As stated in the article, "emotions don’t just go away, especially the unexpressed emotions. Emotions do, however, shift and change shape." Of course my goal when suppressing anger, frustration, fear, sadness, etc is that they will eventually just disappear. That I won't have to deal with them. However, since that is usually just not the case, no matter how hard I try to deny and hide them, maybe reshaping my relationship with this intrinsic anger would be more productive.
Anger, while not desired, does have some positive aspects. Anger brings attention to the fact that the inner me thinks something is wrong or that something or someone is interfering with my personal plans and/or life. When I reflect on my anger, it allows me to see that I actually do care about myself in some respect? I'm still here and have an inner light that is trying to persevere and push me forward even when part of me, the part I get angry at, just wants to stop trying. Anger is trying to make me express myself and my emotions, trying to encourage or even forcefully create change. While I may not like the way anger makes me feel, it does help me realize that I desire something more than what I'm currently experiencing. (In my case - better health, more energy, and more respect to mention a few.) And while that may not sound all that important, it's the push that I need to keep running my feeds, running my fluids, seeking healthcare, and allowing myself to take risk for the benefit of happiness with my family.
"It’s when we constantly suppress anger that it can start to ooze into our lives like a dark, heavy, sticky tar. Covering everything, drowning out light, suppressing the voice, taking all strength, and numbing all emotions." (Soulful Med link above).
Realizing and knowing that this is true is why I am trying so hard to get a grasp on how to better handle my personal anger, especially when it is directed inwardly for things that are outside my control. Part of being human is experiencing the vast variety of emotions life offers, the positive and negative emotions. Therefore, understanding, accepting, and finding healthy ways to express these emotions, instead of spending a lot of energy avoiding the ones we don't like, is beneficial.
(I'd love to read how you choose to process negative emotions you experience with chronic illness.)
I have become accustomed to the rough choppy waters of living with chronic pain, fatigue, and more due to the uncertainty of day to day life with chronic illness. Waking up feeling awful, is not an unknown reality. Feeling decent enough to attempt living and not just existing, just to pay the cost later or without notice become overcome with symptoms is not unfamiliar either. Obstacles, pretending, making difficult choices, weighing risks over benefits, all are part of my now normal routine. It’s been over 6 years since I’ve been able to depend on my body’s response to experiencing life. Granted there have been some extremely rough waters to navigate. Unexpected swells that sent me rocking, some that have attempted to flip me under or cause me to capsize.
During these turbulent conditions I was able to hold on, and while difficult and challenging, even if momentarily knocked down, I was finally able to regain my footing and remain upright. Surviving the unsettled and dangerous waters to slowly drift into calmer waters. Dangers still lurking around, but also able to relax a little and enjoy some of the beauty around me as well. From sunsets to sunrises, warm sun on my skin, a few clouds here and there, and the clean fresh scent reminding me that life was/is still worth living. Stormy sea conditions were still present, and not forgotten, yet were not right on top of me, weren’t pounding on top of me, all of the time. I was actually becoming able to navigate semi-safely, within limits of course, to avoid some of the storms. At times choosing a path that led me to wavy, uncomfortable, choppy waters of short unwanted storms that I knew would eventually be put behind me and a part of my past. Skills and strategies were successfully used to control the impact that the unwanted mini-storms would have on me in the “big picture.”.
However, at times, the paths before me were not as clear. There are times that I have been caught off-guard and seriously unprepared. Recently, I felt that I was on the right track. Not perfect by far, but more acceptable. Bounced around, fatigued, still symptomatic, but choosing certain situations that were more risky to be able to enjoy some views and experiences of life with my family along the way. Mentally striving and alive. Aware that I had to be cautious and careful, not completely smooth sailing, but definitely more manageable. Thinking that finally, with support, I was figuring some things out. I did not have to sit completely still, anchored down 24/7 to remain “safe”. I did not have to completely trade my quality of life for quantity. I could take short rides to explore my surroundings, relax, and authentically smile with a sense of achievement prior to returning to my dock to rest and refuel for a few days. These days or weeks of recovering, resting, refueling, and preparing for future outings were not only acceptable and understood by me, but encouraging and peaceful for the most part because I could visualize and look forward to future outings being a possibility while also retrieving positive memories while recovering. A reminder that the consequences were at least worthwhile. Sickness and limitations were still part of my life, every single day. But listening to myself, recognizing and avoiding most dangers and not expecting too much of myself, helped build more patience when having to ride out the windier wavy waters, whether expected or not, whether when living life or while anchored down.
Just as I was gaining confidence and becoming braver, testing my limits more, and taking more risk - even if just for a day or two - a massive storm formed around me. It was as if I was trapped at sea, white caps crashing all around me, out of reach of a safe familiar place to dock. I was left feeling confused, scared, and lost. At times felt as if I had been capsized with raging waves surrounding me. My sense of safety removed, no correct choices before me. It didn’t matter which way I turned or considered treading, every direction had waves crashing hard enough to destroy me. It was almost as if I had to choose which path of destruction I preferred. Did I want to go against everyone else and fight for a new line just to risk my life for a dangerous life-threatening infection, or simply give in and literally become a shell of myself, just dangling in the waters hoping the current wouldn’t overcome me? Partially waiting for me to completely fade away helplessly, completely missing out on the chance to reasonably experience life in spite of everything else.
Dangling in fear that I would lose my grip completely. Part of me actually wanting to let go. A larger part of me reaching and grabbing for anything that may help me remain above the surface while feeling as if I were slipping further and further under the water. Bobbling in fear of being stranded alone and empty, no meaning left, just here until I completely disappeared. Wanting and desiring so much more! Knowing that I can’t let negative thoughts, regardless of how realistic they may seem at the time, or my fears take control as the weight of them will without a doubt pull me under. Also knowing that allowing myself to hold onto everything that I’m missing, blaming myself for where I’m at or even for where I am not at, hating parts of me that I don’t understand and are unable to understand or control, would not be beneficial as they too would do nothing except pull me deeper and deeper underwater. Eroding the part of me that wanted to remain. Regardless of my knowledge, when dangling and treading in the cold violent unstable water, it’s easy to try and escape by holding on to anything that surrounds me, positive or negative.
Most of the time, I try to reach for things that will keep me hopeful and above water. I know that I don’t want to drown, don’t want to die, and don’t want to give up. I just want relief. I just want to be me, the me that I can respect, share, and enjoy at times. The me that has meaning and purpose, can be proud of and at ease with. The me that can create positive memories with my children and family. The me that exists beyond my illness and symptoms. Time and time again, I know that there are only a few things that help me survive during these times, which helps keep me afloat when everything else seems to be hastily dragging me under. They are not immediate “cures”, they don’t offer me complete safety at the moment, but they help me through moments, or if fortunate, days at a time. Medically, and mentally, my current medical team, especially Dr K and Dr S help me stay afloat if I let down my guard and allow them. Spiritually, my faith keeps me going. Part of me still believes that everything happens for a reason. I know that God is present, and even though I may never understand what His plan is or why, I'm confident He has a plan and is always by my side. When His plan for me is over, then so will my earthly life.
My family, especially my children, are monumental in keeping me afloat. THEY are what I think about when I’m at my lowest, thinking about how much they mean to me, how much I love them, how I don’t want to do anything that will cause them additional worry or pain than I’ve already caused them. Rethinking (and at times rereading or looking through photos) of the wonderful memories that we have shared together as well as the horrible ones that I have been able to overcome with their assistance (even if they have no idea of how critical they have been at pulling me through). But I don’t just think about the past, because sometimes, as positive as it can be, it can also be a reminder of times I miss so much. I try to balance my emotions by also thinking ahead to the future. While also tricky at times because it’s easy to get sidetracked with what I can’t or won’t be able to do anymore, I try to focus my eyes on the present and future possibilities of life with them. A desire to be here for each of them currently, experiencing life with them and through their eyes and accomplishments, as well as wanting to be here to witness their careers and hopefully have an opportunity to one day be a meaningful part of my future grandchildren’s lives as well, if I can make it that far. My children are my life and I am willing to survive any obstacle for them, no matter how difficult or painful it is on me. (Other things such as music can be a helpful distraction momentarily, helping me reground myself, deafen negative thoughts, and refocus on what’s really most important to me.) Honestly, IF it wasn’t for how much I love my kids and how proud I am of the people that they are and are becoming, if it weren’t for them wanting and needing me to be a part of their life (regardless of how I feel), I don’t know that I would even bother trying anything anymore. They accept me and love me for who I am, even if/when I don’t.
Storms from chronic illness and life may knock me back and test my strength and will, but God, my family, and a couple of caring doctors are my lifelines if I just trust them and myself enough to reach out and hold on until calmer, more serene tranquil days can arrive. (I just pray hard that I don’t cause additional weight or strain on their lives in the process or meantime.)
At the end of July, I was hospitalized once again for a central line bloodstream infection. I had a PICC line at the time so I could stay hydrated. My regimen was to infuse 1.5 liters of IV Lactated Ringers 3-4 times a week. Out of the blue, on July 26 and 27th, I started having severe muscles spasms throughout my body, rigors that had my body shaking uncontrollably, and intense chills that sweatshirt, heating blanket, and heating pad couldn't even touch.
The first time this happened on Friday night was scary, as every time I've had these symptoms, I've ended up hospitalized for central line blood infections. I tried to avoid and find excuses of what else may have been to blame for how I was feeling, as an infection and another hospitalization was the last thing that I wanted. When it happened again on Saturday night, I knew the possibility of an infection was becoming evident, so I reached out to my GI doctor. Sunday, I finally gave in and visited the dreaded emergency department.
As I explained my symptoms, I felt absolutely horrible. I made them aware that previous central line infections have been the source of these awful symptoms in the past. In addition, I went ahead and let them know that both my GI and I felt as if blood cultures needed to be drawn. They followed the suggestion and also took additional labs, which led to chest x-rays and a CTa.
Because of my previous infections, they felt it best to keep me overnight in the observation unit. The admitting doctor expressed how confident she was that I did NOT have an infection this time. She thought it was probably just a little virus, as I was not running a temperature and not in distress while there. I responded to her by telling her that I hope she was right, but from my experience, it was likely going to be an infection.
The following morning, I learned that my cultures were indeed positive for klebsiella, both from the line itself and from the peripheral (arm) draws. A hospitalization and PICC removal was in my future, along with a difficult decision.
Due to my susceptibility of infections, my hospitalist, the infectious disease team, and my personal gastroenterologist all felt that not replacing a central line would be in my best interests. Having a new line was more life threatening at the current time that battling dehydration daily. This time, I had no rebuttal as my body and mind is tired of fighting infections. My family and I agreed that I would attempt to be creative and find a new way of receiving hydration.
Unfortunately, my body is not as cooperative as it needs to be. We started implementing more fluids in the hospital by flushing 200 mL of saline 3 times a day through my g-tube. EPIC FAIL as nausea, heaving, and abdominal pain was too much. Then we tried it through the J tube, which was better, but still too problematic. The first flush of the day was manageable, the other 2 were not. After those attempts, we decided to try unflavored pedialyte on a slow drip through my J tube overnight. We set the pump for 20 mL/hr of pedialyte for 10 hours (200 mL total) and during the day continued to run my Peptamen AF formula at a rate of 35 mL/hour. This has been tolerable for the most part, though I have had to adapt the times a little and still have to figure out how to convince my body to accept more formula and fluids as I'm currently only receiving a max of 500 - 600 calories a day and much less than 1.5 Liters of fluids, which is the ideal and recommended amount.
What does this mean? Basically, I am staying dehydrated around the clock, but thankfully not enough to require a hospital visit. I feel lightheaded, weak, nauseated, crampy, everyday and am having issues with headaches/migraines, dizzy spells, breathlessness at times, and tachycardia episodes. Regardless of how I feel, I'm having to make myself feel worse by pushing the level I can tolerate so I don't become too dehydrated or malnourished. My medical team and I have to keep a watchful eye on how my body is tolerating the decrease and lack of fluid volume. On a positive note, my body can at least remain free from another central line infection for the time being.
Gastroparesis is a chronic invisible illness that impacts every aspect of our lives.
We may appear "fine" on the outside, but what we deal with every day on the inside is NOT.
Gastroparesis doesn't discriminate by age or size. Some will lose a lot of weight, some actually gain.
A change in one's food diet may help improve symptoms for some, some are able to get by on liquid and/or pureed diets, and others require tubes and lines to receive their hydration and nutrition.
We struggle to find better treatments and improvements in our quality of lives.
We advocate for change, because we don't want others to have to endure what we have.
We form online friendships that become very dear to us. Our connections help us support one another during most challenging times, celebrate achievements, and unite to make a difference.
We are saddened with each green candle as we miss the ones that pass away, fear the loss of additional friends in the near future, and worry about our own path as we experience similar health stories of those we lose. Advocacy helps keep their memories and spirit alive in our hearts.
Special thank you to Melissa Adams Vanhouten, Shanna Harjo, Corina Castillo, and all of the Gastoparesis: Fighting for Change Advocates that helped with creating and sharing these and many more collages, memes, and personal stories for awareness this past month as well as other times throughout the year.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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