I was asked the other day if I accept my life, the way it is, with health conditions and all?
The truth is, I don't honestly know if I have or not. Some days I am able to feel content, face the obstacles, and live life in the moment. Other days, I'm agonizing over the pain, misery, and inconvenience of illnesses and life style changes. Many days, I feel like my feeding tube, ileostomy bag, and IV lines are a normal part of me. Nothing to be ashamed of. Resources to improve my quality of life and how I physically feel. But then there are those days when I feel like a mutant, abnormal, like I am becoming artificial. That I am incapable of being normal; Unable to fuel my body with nutrients or hydration like a "normal" person. Unable to even use the bathroom as a "normal" person. Just an awkward science experiment gone wrong.
I know that "normal" is a perception, I understand that MY normal is not required to be like everyone else's normal. I'm thankful that I have a feeding tube and IV lines most days, even when they are an aggravation. They eliminate the pain of trying to eat or drink orally and help me have energy (though still lacking) to be a part of life. I have accustomed, for the most part, to having a colectomy with ileostomy. It's without a doubt less than ideal, but it removed the unexplainable gut wrenching pain that tormented me day after day as a result of colonic inertia. These devices and "accessories" are tolerable. They make life more manageable and increase my ability to actually "live" life. Currently, they are a necessity. I can accept that.
But do I accept my life like this? Do I accept that things may never change? Does acceptance mean that I am inviting illness to stay? Would completely accepting my illness mean that I welcome it to remain with me forever, no longer hoping that it will go away?
According to Wikepedia "Acceptance in human psychology is a person's assent to the reality of a situation, recognizing a process or condition (often a negative or uncomfortable situation) without attempting to change it."
Seriously, I'm not sure that I like this definition. Yes, I can see the reality of living with my conditions. I can recognize how they impact my life, positively and negatively, but how do I not attempt to change them? Does that mean that I shouldn't attempt to find better treatment options? Shouldn't attempt to change the ailments and symptoms that make me feel so awful? Not try to fight for a cure or improved health? I'm not sure if that's even possible. According to that definition, would accepting my illness mean that I'm essentially giving up?
While pondering the question of acceptance, I decided to search a little deeper. I would think that there has to be a way to reach a level of acceptance without giving up hope that things will one day improve. From my reading, I was reminded that there are 5 stages of Grief: Denial, Anger, Fear, Hope, and finally Acceptance. In my past experience, I always linked these five stages with death. But isn't it possible that one would have to journey through each of these levels in order to grieve an unwanted or even chronic disease? I can effortlessly think of times that I have been in denial, angry, fearful, hopeful, and even sometimes accepting of my being sick. Truthfully, I think I seem to bounce back and forth between the stages, trying my hardest to avoid sadness, defeat, frustration, and even depression. Isn't that normal though? Are we expected to be accepting all of the time? I know I accept many aspects of my condition most of the time, probably much more extrinsically than intrinsically. (I do attempt to at least appear that I have everything together, that everything will be alright, that I can handle this, etc. ) How else can I remain strong, and not weak, in the eyes of others?
In order for me to consider complete acceptance, I must first determine what I believe acceptance to truly look and feel like. If you asked me what acceptance is I would most likely describe it as follows:
Acceptance does not necessarily mean I'm giving up or that I keep all of my emotions in check ALL of the time. It does not mean that I will never doubt myself or feel sad. Acceptance to me, does not mean that I'm completely resigned to the fact that my health status is set in stone forever. It does not mean that I have to have a cure or that my illness will eventually disappear. But it also does not hinder my treatment options or limit future possibilities.
What acceptance does mean to me is that I'm in a state of being at peace. Acceptance means that I am aware that this is my reality now, so I have to be ready and prepared to live with the cards I'm dealt. Acceptance would simply mean that I'm OK with where my body and mind are on any given day, that I value what my body CAN accomplish, without focusing my energy on what I wish it could do.
I don't believe that Acceptance is something I can do once and for all. Acceptance lives in the present moment. In order to accept my current health I must discover a way to keep what I am passionate about in my life. It will take time, work, patience, spirit and heart to entirely accept my illness and make a space for it in my life. I will have to be willing to calmly navigate the various paths of all my emotions, not allowing my inner critic to pass or hold harsh judgements against me. Without a doubt, it will be a difficult and challenging road ahead as I must accept not only the positive emotions and experiences, but all of the negative emotions, obstacles, and struggles as well. I strongly believe that there will be times that I do accept my illness, my feeding tube, my ileostomy, my symptoms, my diagnosis, etc.. However, there will also be times that I do not. And I believe that is okay as long as I am able to resurface and seek out help or support when needed.
So back to the original question. Have I reached the ultimate level of ACCEPTANCE?
I guess my response depends on what acceptance means to you and on which day you ask;
Because my answer will likely fluctuate between YES, NO, and MAYBE SO.
© 2015-2017 Trisha Bundy ALL RIGHTS RESERVED
Psychotherapy? You have seen it on TV, watched it on movies, read about it in books, and most likely have heard about it from people surrounding you. It's likely that your friends, family, co-workers, and medical providers have said a thing or two about therapy as well- maybe even suggested it! In fact, you most likely already have your own personal beliefs.
You probably already know everything there is to know about psychotherapy, right?
Isn't therapy for the mentally ill? If people learn that I have a psychologist will they think that I'm "crazy" or that I'm too weak to handle my own life? Shouldn't I be able to solve my own problems? It will just be a waste of time. It's not like I am sad or depressed all of the time. If my doctor suggests that I seek therapy, then they are simply implying that my illness must be "all in my head." Does any of this sound familiar?
I mean, what's the purpose of a psychologist anyway?
Why pay someone else to listen to me vent when I could talk with my friends or family for free. All a psychologist is going to do is write down everything I say and then blame my problems on childhood experiences, stress, or maybe even my imagination. They don't know me, they don't care about me, and they surely don't understand the battles that I am going through.
Well you know what?
If you agree with what I've said thus far, I promise you that you are not alone. I was in the exact same thought mode until I finally "gave up" and followed the advice of one of my doctors. Initially, I was heartbroken because I trusted my primary doctor. I thought he cared about me and wanted to help me. Him suggesting I attend psychotherapy felt like a stab in the back. I had been struggling with my illness for a few years, unable to eat or drink without pain and nausea, unable to actively participate in everything I'd like to, and now he was giving up on me? Because I wasn't healed yet, he must have believed it was all being manifested "in my head."
(Just to clarify, my Dr did not believe it was in my head. He just felt that having a therapist to talk to may help me deal with understanding my life with chronic illness. He encouraged me to reach out because he actually DID CARE about me.)
So what was I to do?
After much consideration, I gave in. I reluctantly went to see this psychologist (I'll refer him as Dr.P) just to prove that I wasn't crazy and that I could survive just fine on my own without therapy. There was nothing wrong with me mentally, I was sick PHYSICALLY. How could he help me? He wasn't going to make my digestive system start functioning again, he wasn't going to help me get rid of my feeding tube, he couldn't make me "well" again. I thought, maybe if I went and convinced Dr. P that I didn't need his help, that I was strong enough to handle things by myself, then my other doctors would stop suggesting therapy and come up with an effective treatment to heal me.
So how did it go?
Interestingly enough, I was admittedly stubborn. I went to the first few visits trying to prove that I did not need to be there. I proudly shared my coping skills and how they helped me, explained my illness thoroughly. I discussed how I survived and regrouped from a depressing time all on my own by finding new friends that could relate to my struggles and re-discovering purpose in my life by participating in an online advocacy group. I stated how blogging helped me learn more about myself while also spreading awareness to anyone else that chose to read my post. After our first visit, I felt powerful. I didn't break down, I didn't appear weak, I was in control, and I was going to make it clear that therapy was not needed. I informed him about my concerns over what would be documented in my medical record. I did not want to be judged by future medical providers. I was fearful that being in therapy would mark my record and make it hard for me to be taken seriously from my future doctors, especially ER & hospital doctors. I was even brave enough to email him my a copy of my personal medical story that I had written and other information regarding Gastroparesis, just to make it clear that I was perfectly fine, just sick. My thinking was that if I had to be there, the least I could do was educate him on life with my illness. I honestly didn't know if he would even read what I sent, not sure if I even expected him to read any of it, but I felt empowered standing up for myself. The next couple of appointments were very similar. Slowly and cautiously I began to let my guard down. I was surprised and impressed to discover that he actually did take the time to not only read what I had sent, but appeared to show interest in what I shared, and truly listened to me and what I had to say during our appointments. Eventually, I began to trust him. Now I feel comfortable enough to open up with him completely, which is extremely important if I want to continue to learn more about myself and how to best cope with the emotions that are created from life with a chronic illness.
Do I feel that seeing Dr. P is beneficial?
Absolutely! I know that my illness is real. But I also know that the emotions that occur as a result can be difficult to process. I am more than just my illness. Yes, my life is impacted and limited by my illnesses more than I would like to admit, more than I would like to accept. However, learning how to better manage my personal disappointments and emotions is definitely beneficial.
Dr. P has never belittled me or pressured me to reveal more than I was ready to. He met me where I was. As much as I'd love for him to tell me what to do, how to feel better, the best route of action, etc - that's not what happens. He patiently guides me to investigate my own thoughts, feelings, and fears. He listens without judgement, truly listens. I appreciate how he actually hears what I'm saying, converses with me, understands me even when I don't, is able to repeat or summarize my thoughts (usually in ways that make more sense than the way I said them), and even asks difficult thought provoking questions. He never writes, criticizes, downplays, or makes me feel as if I'm being interrogated. I value the way he communicates with me, never making me feel intimidated. Yes, I can and do talk with my family and closest friends. But it's not the same. My family doesn't truly understand how I feel and I'm not sure that I honestly want them to. Talking with my closest friends, who happen to have similar health journeys, is always helpful but I hate to burden them when they are already fighting their own health battles. With my psychologist, I don't have to protect someone else's thoughts or feelings. I don't have to worry about hurting someone I love or making them worry about me. I can be myself, without pretending or putting up a fake front. With his help, I can unleash feelings that I don't even realize I am hiding, talk them out, understand the reasoning to why I may have those feelings, and determine how to effectively sort through them. Never once have I felt judged for what I've said or felt.
It's common for people dealing with chronic illness's to feel insufficient, sad, angry, frustrated, useless, guilty, and scared sometimes. It's normal for us to feel like we are less, that we have lost our purpose, that we are a disappointment or burden to our families. It is also normal for us to be much more critical of ourselves than others are of us. Having a chronic illness is a difficult journey to accept, our "old" lives are no longer the normal that we once knew. Instead we have a new normal that we have to learn how to navigate. It may not be easy, personally I'm still working on navigating my path, but it is possible. Having a psychologist will not immediately solve all of your problems. They will not cure your physical illness. You will not leave all of your appointments feeling happy and carefree, especially if you are able to be openly honest. If therapy is effective and productive, you will have emotional moments. And that's okay! I have realized that seeking out help is not a sign of weakness. Quite the contrary, it takes a lot of courage and strength. Therapy is not a quick fix, there's not an easy answer. It actually takes a lot of work. Dr. P is excellent at guiding me through metacognition, wonderful at facilitating my search for inner peace and acceptance, intriguing me with deep thought-provoking questions, but I have to put in just as much effort, if not more. Together, we have discovered that writing is an effective way for me to express myself. Each week I have an assignment or two to complete, which typically involves me writing on a topic that we will then analyze together. The task is usually challenging, but without a doubt, very worthwhile.
If I am able to gain the skills to accept my "new" life as well as become more patient and understanding with myself during the horrendous symptomatic days, then I would consider therapy a success. Keeping my mindset and spirits positive can be a very demanding and troublesome task, especially when I feel so awful and miss out on special life events. If I am able to eventually achieve inner peace and the ability to keep fighting with the never give up mentality, no matter how difficult my health journey is, then wouldn't you agree that therapy was beneficial?
Would I recommend psychotherapy?
Yes! I honestly believe that therapy can be a lifesaver if you find the right provider for you. Not all psychologist are the same. They all have their different methods, different specialties, different perspectives, and unique personalities. In order for therapy to be beneficial, you must find someone that you feel comfortable with and can trust. If you are uncomfortable or intimidated by your psychologist, find another one. Psychologist are trained experts. They possess the knowledge and education to recognize and reveal personal thought patterns. But ultimately the success of therapy is dependent on a positive partnership. You must be willing to interact and collaborate with your psychologist with mutual respect and honesty, while also attempting to complete all "homework" assignments. It's not easy, that's for sure.
In conclusion, please don't let your misconceptions about psychotherapy hinder you. I almost made that mistake. Seeking help from a psychologist is not a sign of weakness, is not a sign that you are crazy, does not signify that you are giving up, and does not mean that your illness is "all in your head." Therapy can be a great resource if you are able to find the right doctor for you and give it a true chance. Therapy can help you rediscover how to live with your chronic illness, how to survive, and how to stay afloat during life's most tortuous storms.
Earlier this week, while looking for educational articles about living with chronic illnesses, I ran across an article that made me absolutely furious! I know that not all articles online are positive or accurate, especially when they are about conditions or diseases that are misunderstood and unfamiliar. Part of my mission is to sort through and share the articles that provide new research information or suggested treatment options that may help others as well as myself. Sure there are times when the range of severity may not be well described. Times when symptoms and their impact on one's quality of life are downplayed, when treatment options shared don't help the harsher cases, etc. When these articles are found, I often express my appreciation to them for sharing information regarding Gastroparesis, while also encouraging them to include more complicated or severe cases as well.
HOWEVER, this article I came across was completely different. It was written by an ER nurse, one that describes himself as having years of experience dealing with chronic illnesses. The purpose of his article was not to describe an illness or even offer treatment suggestions. Instead, he was writing about his experience in the ER setting. Stating how weekends aren't as busy as people would expect, simply because it was the weekend, and well patients tend to wait until Monday before being seen. There's nothing wrong with a "Life in the ER" description, right? But it didn't stop there. He went on to explain how messed up the ER is, how people that shouldn't be there are coming to the ER instead of seeing their personal drs, how drs are sending their patients to the ER because the next available appointments are months away, and how inpatient some of the patients are. Well, I think we all can agree that the ER can be a very long and chaotic wait. Most of the article was harsh, I mean if he hated working in the ER so much, why is he a nurse there? But one sentence really set me off and made me livid!
He stated ""Next to her there’s someone who never thought it would be a good idea to take care of themselves throwing up into a bag that we provided them – the vicious cycle of gastroparesis and narcotic abuse." You've got to be kidding me, right? Here is someone that works in the medical field with the responsibility of taking care of patients, regardless of their situations, and he finds it upon himself to openly judge an illness publically! Comments like this just reinforce why it's so difficult for patients, including myself, to make visits to the ER. Why we fear that we will not be taken seriously or treated effectively. Why many of us would rather sit at home and suffer or even die, than force ourselves to seek out medical care in the emergency setting. I know that not all nurses or doctors share this attitude or lack of sentiment, but still, we have all either experienced first-hand or heard of others experiences with being mocked or ignored by the very people that are suppose to be there to help us. Any way, I could not just sit there and let this article be posted and read by others without speaking my opinion. So once again, I reached out to some of my friends. TOGETHER, we made it a point to not only express our dismay over the article but also to educate him on the reality of Gastroparesis. To let him know how hurtful, judgmental, and inaccurate his broad statement about Gastroparesis were.
This was my response to him:
"I find myself distraught and furious after reading your article. We are all aware that there are people that misuse the ER but there are also legitimate patients that are left with no other choice. But to sit back and judge others, especially those with debilitating illnesses and symptoms is unprofessional. Comments like yours are what's wrong with the medical system today. Gastroparesis is a horrendous disease that greatly impacts patients' lives. The symptoms can become extremely serious and life threatening if not controlled and yes, it is an emergency sometimes. Relentless vomiting, inability to eat/drink, severe unfathomable pain, dizziness, unimaginable nausea all are common symptoms for patients with Gastroparesis. These symptoms can lead to severe dehydration, electrolyte disturbances, blood pressure spikes/drops, tachycardia, blood sugar drops, malnutrition, etc.. Many people with Gastroparesis have other digestive motility issues as well, such as colonic inertia or pseudo-obstruction, which can cause their intestines to rupture and even become septic. It is not uncommon for Gastroparesis patients to have feeding tubes, PICC lines, PORTS, or even ostomies - which makes their medical treatment even more difficult to treat and reinforces the necessity of emergency care at times. The list goes on! Granted, every case may not be this severe every time, but who are you to question if it is or not? And then to have the audacity to say ""Next to her there’s someone who never thought it would be a good idea to take care of themselves throwing up into a bag that we provided them – the vicious cycle of gastroparesis and narcotic abuse." Not everyone that has Gastroparesis uses narcotics - in fact many have to suffer through the pain without pain medications because we know that they can make the situation worse. Additionally, are you implying that Gastroparesis patients don't take care of themselves? Really? Who would say such a thing about people they don't even know? There are many ways that people can end up with Gastroparesis - some may be idiopathic (unknown reasons), some as a result of damage to the vagus nerve because of prior surgeries, post-viral, diabetes, etc... Honestly, I think you need to do your research before bashing patients. "
After receiving our "educational" comments, he thankfully chose to remove his article from his webpage and facebook page. Though an apology would have been nice, his removal of the article was definitely appreciated.
So here's the point! Beware! We are tired of being judged, misunderstood, ignored, and looked down upon. We did not choose this life; But we do LIVE this life! We will not back down. We will continue to stand up for our friends, family members, and even ourselves. We WILL be heard. We will expect to be respected. We will continue to fight for awareness, even if it's just one person at a time.
I no longer know what to say
No longer know what to think.
day after day
Pushing me to
my absolute brink.
I feel so exhausted
No energy left in me to fight.
my body has conspired
Left me in darkness
searching for answers
Lost and hidden from light
As life continues to pass me by.
My body aches
From continuous strain
My body battles again
My life I grieve
As I keep telling myself
to simply just Breathe.
Each step forward
Matched with suffering.
Each bright moment
Followed with crying.
Feeling out of control
Wanting to just give up,
Knowing that's not the answer
I try to keep up.
So here I stay
© 2015-2017 Trisha Bundy ALL RIGHTS RESERVED
A "Me" weekend may be exactly what my body, mind, and soul needed. Initially, I was upset about having to stay behind while my family went on a fun-filled vacation. It was a difficult decision, but with the state I'm in health-wise, it was the only reasonable decision. I would have loved nothing more than to have been healthy enough to spend quality time with them on their trip, but it was just not possible this time.
Instead of being sad, feeling down, or guilty I decided to use the time to listen to my inner spirit. I took a vacation of my own, right here in the comfort of my house. To start the homebound journey off in high spirits, I joined some of my online friends on a Fantasy Cruise. With superpowers, positivity, no illnesses, and no worries we set sail on a grand adventure full of silliness and laughter where all dreams could come true and everything was possible! We learned more about each other, outside of the Gastroparesis realm. This creative adventure was a fantastic reminder that we are more than our disease, much more.
Saturday was a "ME" day! Determined to rediscover my optimism and rebuild my inner strength, I relaxed. I allowed myself to be "sick". I didn't have to pretend to feel better than I was. I didn't have to portray strength, patience, or calmness. I could be exactly however I felt, as I didn't have to answer to anyone, didn't have to fight to hold myself together, didn't have to consider how my actions would impact my family's plans, didn't have to worry about anyone - not even myself. I was allowed time to be emotional if needed, whether it be anger, frustration, sadness, silly, etc. It didn't matter! I didn't have to "suck it up" or "try harder". I was on vacation from being the "Best Me Possible". I was free to just be!
So how did it all work out? There were ups and downs. My plan was not perfect, but that's okay. I played my favorite music, mostly contemporary Christian, wide open - even singing outloud at times. Don't laugh, or do, it's ok because no one had to hear my singing voice. Ha! I played around on the computer a little. Spent time writing, hence this blog. I was brave enough to attempt increasing oral intake, specifically some Italian Ice, Frozen Mocha, and even a little Chicken Broth. Unfortunately, none settled on my stomach at all. Luckily, I was able to drain the Ice and Mocha rather effortlessly from my G tube to find relief. The chicken broth made me truly sick, lying on the kitchen floor with pain, nausea, and near blacking out. But it was worth it!! And since I was on my "vacation" I could moan, cry, complain all I wanted. Or just lay in silence! It was completely up to me. I didn't have to consider how others would feel or respond. I didn't have to worry about who would see me crouched on the floor or what they would think or say. Eventually it passed and I was able to return to the living room with lesson learned - NO MORE SOUP BROTH! My nights were sleepless, my body was tortuous, BUT I SURVIVED! I didn't hold back my anguish but I also didn't lose my mindset. I had no need to think about how I was feeling, or how it was impacting my life, as I was able to just experience the moment (no matter how rough) and then keep moving on to the next moment - which eventually was more pleasant.
Without planning in advance, I was even able to get out of the house for a few minutes with my mom on Friday just to grab some ice and talk, then with my dad on Sat. I enjoyed our time talking and when my discomfort and exhaustion began settling in, they brought me back home. I didn't have to ask them or explain the situation to them. I wasn't upset, it was just another moment in life. MY Life! I was able to enjoy our time together, why bother with being upset about the quanity of time, I was blessed to have had some quality time together? If by some chance I had been upset or mad with my body, it would have been totally alright!!
So the question is why can't I live in this carefree state more often? Why am I always so critical of myself?
Don't get me wrong, I love my family more than life itself. I love my husband and love my kids, want to vacation with them, want to experience life with them day after day, and miss them greatly when they are away. It's just that I love them so much that I spend so much energy trying to "be better" or "appear better." I spend energy that I don't always have just to "be present" during the time they are around, energy spent "acting" like everything is okay or going to be okay. Energy spent trying to decide if attempting to eat or drink something, will create a shadow on their day or impede their plans. Sometimes I think I spend too much time being the "me" that my family needs and expects, the me that I envision, the "me" that doesn't disappoint, and the "me" that is in control that I forget how to just be ME!
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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