Living with chronic illness is a full-time job, a volunteer career all on it's own, but it should only be a part of one's life. A rather large part of me believes that I should be so much more than what I currently am. The inner me, my spirit and soul, often feel irrelevant, meaningless, and unsuccessful. At times it feels as if my only purpose in life is to be a mother, which is the most amazing unexplainable blessing and miracle all on it's own, but is that really all that I can pr should be? I just don't believe that this is the case for me.
Possibly, JoAnn LeMaistre's words explain how I feel best - "She had to come to realize that she need not stop growing as a person because of her illness. She knew that she had to coexist with pain and physical limitations, and not let it always dominate her life or self-definition."
Does or should being sick have the authority to make me feel like nothing? Absolutely, not! So why is it that I sometimes feel inadequate as a person? Why is it that I feel as if my role in society has diminished since being ill and having to focus on setting my health needs as a priority? (After family and God, of course!)
I am confident that I am doing all that I can, to manage my physical health needs, with the exception of expecting or pushing my limits too far at times. But, discovering meaning and purpose in my life, which is critical for my spiritual and emotional health, requires that I explore my inner self in more depth. Here is where it gets very tricky for me, as I have a tendency to be very critical toward myself, harshly judge myself, and unfairly set myself up for failure by trying to reach unreasonable expectations based on my pre-illness self. You would think that I would have learned by now, but I must agree that I can be rather hardheaded and stubborn.
I'm in no way saying that I shouldn't have expectations, dreams, or goals to achieve. Instead, I am saying that I want to view myself differently. I hope to learn how to develop more patience toward myself, more acceptance for myself, better able to forgive myself, and no longer blame myself for things, such as illness, that are outside of my control. In other words, I desire to to see myself through the eyes of God and Jesus. I long for personal grace and truth, based on God's image. According to Dr Henry Cloud, "Grace when it is combined with truth, invites the true self, the "me" as I really am, into relationship." In other words, I intend to discover emotional and spiritual maturity within myself, while coming to terms with my true sense of self.
According to Julien Seifter, "Most authentic growth depends not only on intention and effort but also on opening yourself to what has happened to you and letting experience change you."
See the thing is, I know people who consistently blame me for their problems, criticize my choices, and discount my feelings are toxic to my self-esteem and damage my self-image. I admit that I have not done well at eliminating toxic people from my life. I have also noticed that with chronic illness, as struggles have overwhelmed me at times, my thoughts have betrayed me by adding toxicity to my own perspective of me. I guess this is more apparent to me now, as pain and suffering seem to have a way of bringing my strengths and weaknesses to the surface. Hence, I want God to help me be different, for Him to work inside of me to help me see his vision for me. In Micah Tyler's lyrical words, "I don't want to be stuck in a pattern" anymore.
The truth of the matter is that my life is more difficult than I could have ever imagined, but it also has the capability to be far more richer than I could ever dream. At least that is what I'm counting on and hoping will happen as I strive to grow spiritually and emotionally, alongside my journey with physical illness.
The question is how do I achieve it? How do I use my experiences and knowledge to grow and shine to my greatest ability, in a way that will make God proud and help me feel fulfilled? I believe the first step is to determine who and what adds the most meaning to my life and invest my energy and time in those relationships.
What are those you may ask?
This, I actually can answer quite easily: God, family, self, and teaching/helping others.
I have been investing energy in my physical health with medical interventions and appointments, while also working diligently with my psychologist on better understanding and coping with the impacts of dealing with chronic illness (it's symptoms and impact on my quality of life) on a daily basis. In Julien Seifter's book, it is stated that "A doctor like a psychotherapist can promote a playful loosening of old ways of thinking and feeling and encourage a patient to open her mind to possibilities. A doctor can help a patient grow through time." I have found this to be true for me. My medical team and I continue to adjust medical treatments in an attempt to help my condition become more tolerable, since there is no cure to make it go away. My previous gastroenterologist and my psychologist, have both encouraged me and made me realize that I can still search and expect a higher quality of life, regardless of chronic illness. I just have to remember to be flexible and willing to explore the possibilities, while also being respectful of and listening to my personal health needs.
I am giving all I have to try and continue strengthening and deepening my connections with my family more and more, even though we are already close. This is not always as easy as it sounds, as my health limits the amount of time or type of activity that I can handle. However, it has allowed our time together to be more communication based and passive, which can me amazingly rewarding. The conversations with those I love, well, they have opened my eyes to see, witness, and reiterate just how blessed I am to have them in my life.
My Faith in God, His Comfort, His Love, His Grace, have gotten me through some extremely difficult circumstances and trials. I am praying that my connection to God will continue to strengthen and that He will use me and my trials as a way to help bring comfort to others through their struggles.
To get to that point, I know I need to find the courage and confidence to step up and press forward in search of His purpose for me. I have to be willing to overcome my fears and hesitations. I must look within, Trust God's plan, and rebuild my inner strength by utilizing the strength that He provides me with. I need to surround myself with people, online or in person, that will enrich my life and challenge me emotionally, mentally, and spiritually while also respecting the health challenges that I'm exposed to daily.
In order to accomplish these goals, I have chosen to read and complete the Changes That Heal book and workbook by Dr. Henry Cloud. I am hoping to be able to attend a few book study sessions to increase my understanding and healing, if my health cooperates, but I have also joined a related online group. Being a part of the online group will help hold me accountable, but even more importantly, will possibly develop an additional support system that can further improve my personal spiritual and emotional growth.
3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 5 For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. 6 If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. 7 And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort. (2 Corinthians 1:3-7 NIV)
*Below are the links to the authors' books that were referenced above.*
Changes that Heal (Book & Workbook) by Dr. Henry Cloud
After the Diagnosis: from Crisis by JoAnn LeMaistre
After the Diagnosis: Transcending Chronic Illness by Julian Seifter and Betsy Seifter
I am striving to LIVE, pursuing ME, in the midst of feeling absolutely awful!
Pushing myself to the limits in a quest to feel ALIVE!
Life has been altered in so many ways. My health placing limitations and additional struggles upon me.
I set forth each day, trying to respect my physical health needs, while also not giving up my emotional and mental ones.
Medicines are changing; me realizing all too well the possibility of feeling worst in order to hopefully find some form of relief in the long term.
Why is it so difficult for others to understand, and easy for them to judge, when they don't realize the circumstances that I live in?
When I attempt to stare down and defeat my fears of just existing, such as reaching out for additional support, why is it my personal goals are used against me, as an opportunity to knock me down, discourage, or add additional fears?
Aren't I worthy enough to rediscover feeling meaningful, valuable, and happiness, in spite of the despair I experience daily as a result of consistent chronic illness?
Am I expected to completely disregard who I am, who I want to be, and just watch each day pass by as I constantly feel nauseated, fatigued, and often in pain?
Is being unable to live a "normal" life as an adult contributing to society, also suppose to limit or prevent me from reaching for spiritual growth and social connections?
I know it will take great effort!
I'm sure my body will revolt.
I know there will be times that I have to decline or back out.
But if the task, no matter how small or short term, is rewarding in the moment, wouldn't it still be worthwhile in helping me regain a sense of me?
When being faced with challenges in your life, regardless of whether they are related to your physical, emotional, mental, or spiritual health, it is not uncommon to feel uncertain about how to proceed in life. You can be given wonderful advice, often advice that you yourself would agree to, but still be left feeling misunderstood, confused, or maybe even lost and alone.
If you are like me, you still have a desire to live life. You want to be active and enjoy moments with those that you love, while also having an inner need to feel as if your life is meaningful and purposeful.
But what do you do when you seem to get stuck? What do you do when illness, it's symptoms, it's limitations, it's impact on life, and even your fears of doubt and uncertainty attempt to hold you back?
After reflecting on my own personal experiences, contemplating advice I've heard and read, while also considering suggestions of support that I offer my friends and loved ones when they are in need, I devised a plan. My main goal is to keep moving forward, by viewing and utilizing the obstacles that I face in life, not as a hindrance, but instead as GROWING POINTS.
So how does one do that? How can the negatives in life lead to new outlooks and positive growth?
Below is a general outline of points that may help improve personal growth. By no means have I mastered any of the following. I am still a work in progress and will continue to be for the remainder of my life. This list is more like a guideline for me.
These reminders will hopefully aide me in helping those I care about, myself, and possibly even others, with the perspective of discovering and obtaining growth in the midst of our illness, pain, or suffering.
Follow your heart, not fear!
Recently, I decided to allow myself to follow my heart and desire of spending quality time with my kids, instead of listening to fears about any possible consequences of my actions. I was limited, excited, nervous and even concerned prior to the trip, but really wanted this experience with my kids. (Last year, I had to remain at home due to my health and promised my kids that I would do everything possible in order to participate this year.)
Even though I would only be able be at the park for a short amount of time, I knew that I had to rent a scooter. I dreaded renting a scooter, but it was expected by my family, required for me to physically be able to join them, and actually essential in order to actually enjoy the environment. I am so glad that I bit my pride and prioritized living in the moment over avoiding possible judgement from strangers. Even with the scooter and the minimal time in attendance, I was still worn out physically. This was likely due to the ride there & standing in line for 30 min waiting for the park to open. (Thankfully, it was a cool evening and the park wasn't open during the day while they prepared for the fun Halloween festivities. We had get there early to be sure that a scooter would be available.) My family made it welcoming by not being ashamed or resentful of my limitations and clearly vocalized that they didn't care and it didn't matter what anyone else thought.
The kids made the choice not to ride any rides, since I was with them, but instead decided to just experience the Halloween festivities. Cruising around the the park alongside them with monsters, ghouls, and eerie green fog was definitely entertaining! My kids' eagerness and excitement was contagious, so with their encouragement, I elected to enter 2 or 3 of the Halloween mazes. Due to fatigue, I remained on the scooter while they went through the other Halloween attractions. When waiting, I watched the other amusement park guests being scared by the zombies and monsters walking throughout the park, and talked with my husband. Due to my strength, we only stayed at the park for about 2 hours, but I haven’t laughed so hard in years.
Returning to the car was extremely hard and taxing on me, even though we were parked close to the gate. Pain, stiffness, & fatigue made it challenging to get comfortable when returning to the camping cabin (Thankfully, I prepared by bring my heating pad!) Saturday, was an easy calm day at the cabin - too sore and fatigued to move around - but filled with such delight to be away from my house and relaxing with my family. They stayed at the cabin with me for most of the day watching football, cooking out, coloring, talking, etc before they returned back to the park to enjoy another night of spooky fun. I did not return the second night, but that was absolutely fine with me.
Overcoming my fear, achieving my goal, pursuing my interest, and living in the moment, was exhilarating. I could have easily focused on what I couldn’t do, how fast by body fatigued, what I missed, etc —- but this time my spirit chose to focus on the love and heart’s desire for quality of life. The smiling, laughing, joy, happiness, connection with family, and even sore muscles (including cheeks from all of the smiles and laughter), made the experience everything I needed, wanted, and more! Witnessing their joy while feeling my heart beam - nothing else mattered.
Did I still get sick on my trip? Yes
Was pain obsolete? Not at all. It was still very present.
Was sleep or lack of still an issue? Yes.
Nausea? Yes, though I minimized it as much as possible by limiting intake a couple days prior to the trip and while away.
Was the trip easy on my body? Absolutely not, it took days to rebound to my "normal" fatigue levels. But emotionally, it was more than worthwhile.
Most importantly, I experienced a glimpse of life’s beauty, quality family time, happiness, & more of God’s blessings. I am so blessed and thankful for the encouragement from God, my family, & my doctor to help make this opportunity possible in my heart & mind. Hopefully, we will be able to repeat this vacation next October. In the meantime, I can guarantee that it will remain a cherished and treasured memory forever.
Quotes from After the Diagnosis by Julian Seifter:
"Travel, movement, and risks are ways to stay alive, to flex muscles, to feel more whole."
"Testing the extremes may have been a way of locating the right balance."
Maybe, it's the heart of an athlete and sports enthusiast within me. Maybe it's the idea of competition, teamwork, and give all you have mentality. Maybe it's a mysterious internal motivating factor. I don't know. What I do know is that living with chronic illness can be challenging in all facets of life.
In the chronic illness community, one often hears about the war that our bodies are fighting. Messages of how to remain strong, courageous, and brave as we fight each battle, some worse than others. You may be a "spoonie" or managing with an insignificant "battery", but you are a warrior. Things may be difficult or seem impossible, but if you keep fighting hard enough you can overcome. You just have to be strong and keep persevering. Or at least that's the way it sounds, right? Is that the impression that these comments are meant to give?
The problem is, that while the above sounds positive and optomistic, it can also be perceived as damaging. When symptoms and illness have your health and spirit spiraling, even plummeting, I believe it's only natural to begin doubting your strength and reserves. Are the most challenging moments a result of not trying hard enough, are you too weak, not resilient enough? Are you hindered from improved health because you are too broken to be repaired, not significant enough, or simply just a failure?
I know for a fact that that is NOT the case. We are all destined to move forward in life, all of us. Healthy or not, we will all eventually exhaust our time on Earth at one time or another. For those with chronic illness, some will learn to cope or deal with their illness and it's impact on their life better than others. Some will suffer more either physically, emotionally, or mentally. Some will masks their inner most feelings. Some will pretend or attempt to forget what they are dealing with. Others will try to overachieve with the goal of covering up or hiding the impact that illness has on their lives.
My question is, does our outlook always have to be compared to a win/lose scenario? I know that some of the most beautiful-souls, faithful, caring, and determined people I know have already left our earthly home. It was not because they were weak or didn't try. It was not because they "lost" the war. For whatever reason, it was just their time.
On the same notion, I am aware that some people give all that they can give and times just become too difficult for them to handle. Sadly, some have chosen to take their own lives in hopes of ending the suffering and pain that tormented them day after day. But was it because they were cowards or not strong enough? I don't think so. Instead, I think sometimes, regardless of whether it's accurate or not, people act in the moment out of desperation for a break from their reality, over possible guilt for burdening their loved ones, or loneliness from feeling isolated and withdrawn from society. Being sick all of the time can definitely weigh heavily on one's heart, soul, and perception of life. But, it does not mean that they were selfish or gave up. Is it possible that a different vantage point, an empathetic ear to talk to, a network of supportive loved ones and doctors, or clearer and more reasonable expectations (set by themselves or others) could help some remain hopeful during the most dreadful of days?
The fact is no one knows exactly what someone else is going through. Hell, sometimes the person themselves don't even know. Being told to stay strong when someone is struggling, or to keep fighting while they're trying their absolute hardest, may help some hold on. It may give them a little encouragement. However, it may unintentionally hurt others, making them contemplate their own personal characteristics and how they measure up. (One just has to be mindful of how their comments may be interpreted.)
I'm not gonna lie, my health and thoughts have taken me to some really dark and scary places. I have tried to remain strong, tried to be a faithful warrior, looked at health battles as either wins or losses. I have at times felt shameful, guilty, and weak. At those times, it was hard to look forward to the next day. It was difficult to comprehend how I could keep fighting so hard, with all I had in me. I saw myself as undeserving or inadequate. In some ways I felt like throwing in the towel or giving up, if for nothing else than to protect my family from being impacted or limited by my illness and continued shortcomings. At those moments, I could care less if I was being brave or strong. I felt feeble and powerless. I kept asking myself, what could I do to try harder or be stronger? How could I regain control of my body? What was I not doing well enough? Why was I failing at improving?
Did I have to look at it from that angle, with the idea of constantly winning or losing a battle or war? Is it really an all or nothing situation? Is being brave or courageous in the eyes of others, going to remove fear or uncertainties? Does questioning your future health and worth, mean that you are a coward or quitter? I don't think that has to be the case, at least not in my present state of mind.
The chaos of life is just that - LIFE!
So if not a warrior fighting in a chronic illness war, then what is it? How can we explain this thing called life? How can we describe it or compare it to something similar that is not so cut and dry between two different ends of the spectrum?
What can help ME accept the good and bad that comes with living day in and day out with illness? How can I view my life in a way that is inclusive for all of the wonderful and positive things in life, while also eliminating the severity of negativity during the most challenging times?
In the past I have sometimes compared my health journey to a road trip or roller coaster, with all of the ups, downs, twist and turns. Full of laughter and thrills, but also uncertainties of what is yet to come. I have viewed myself as a crusader, striving for God's purpose, regardless of what trials I'm faced with. (Yes, I realize that crusaders fall into the "war-like" thinking, but not in my context.) I have also compared life to weather, with periods of storms followed by rainbows.
While these metaphors can be useful, I just don't seem to think that they always do justice in describing the experiences I live. Road trips, roller coasters, and the weather all have something in common; They often underestimate the influence that events, other people, and prior experiences have on my life as a whole. They often remove the element of control that I have. A road trip may end at a designated destination, a roller coaster would drop me off in the exact same place that I began, and the weather, well it's just a continuous cycle without a desired outcome.
I want to challenge myself to be able to view all of life's rewards while avoiding seeing the negatives and struggles as losses. Instead, my goal is to look at the tough times as events that help me gain new knowledge, experience, and growth. I want to be able to describe my health journey in way that respects everything and everyone that has already, is currently, and will eventually help me arrive at my ultimate destination - a mother striving for internal and spiritual growth with a meaningful purpose.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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