What do you think of when you consider the word "risk"? Does your mind automatically think of taking risks in positive or negative terms, or do you think of it as neutral?
What about in regards to taking risks when living with chronic illness? Does the meaning of risk taking take on a different connotation or change in some way?
In my mind, I visualize risks taking as being dependent on the circumstances at hand. I am aware that everything that I think, say, and do can be considered risky since everything can have good and bad outcomes.
Some risks are minimal with all results being decent. However, some risks can have extreme consequences, requiring me to take time to carefully weigh both sides of my options. I understand that life is unpredictable and is full of uncertainties, but I still attempt to reduce the threats and dangers, at least the ones I perceive manageable in the moment.
Currently, my risks tend to include:
When I take the time to recall risks that I have taken in the past, am currently taking, or see myself possibly taking in the near future - I recognize that some results are quite undesirable yet may also be worthwhile in the long run. Sometimes the results may be a complete mystery. Regardless, being human, I think that it's only natural to hesitate when trying to manage my risk responsibly.
The physical, social, and emotional impact that someone experiences while living with the challenges of having a chronic illness can be extremely overwhelming. In my case, physically dealing with persistent nausea, a range of abdominal discomfort to severe pain (depending on oral attempts and rate or duration of tube feeds), and fatigue take a toll on my body. My tube feeds and IV hydration require me to be connected to bags and poles for the majority of each day, though I do feel very fortunate to have them in place because they really do help. As exhausting as the physical symptoms are, they can also impact my social and emotional responses. Continuously feeling bad is hard enough, but, when I have to make a decision that is likely to make me feel worse, regardless of which choice I make, well that starts to be taxing on the social and emotional aspects of my life. Receiving adequate nutrition can be extremely challenging.
How do I tell my body that increasing feeds, increasing what or how much liquids I drink, or attempting to eat something (anything) is in my best interest when it creates pain and nausea? Similarly, how do I deny my body the nutrition, food, or liquids that my body needs and sometimes craves, while attempting to decrease my symptoms and misery, when it creates additional issues such as lack of energy, fatigue, and social isolation? The best answer, or at least what I'm trying to do, is find a balance, take turns based on how I'm feeling, test my boundaries as safely/carefully as possible, and accept that my body may have to face some related consequences which hopefully are not too severe.
Accept, there's that word that we all have to dance around and think about. What is acceptance in relation to chronic illness? How do I decide what I can, could, or should accept in respects to my illness? (An earlier blog I wrote regarding my thoughts on reaching Acceptance can be read here.)
I believe when someone is living with a chronic illness, it's important to reach a level of acceptance. It is necessary to understand and discover a way to find peace in one's self. However, I feel as if acceptance is forever evolving, something we have to continuously work on and consider, something that we have to continue working toward achieving. What we accept with chronic illness changes day by day and by the condition of our body and spirit in the moment. Acceptance is not the same as giving up or being complacent, instead, it's a sign that you are okay being you, even with illness, and that you will make the best of the situation.
I also believe that acceptance is not the same for everybody. What I'm able to accept as far as my health condition and the limitations it creates, the treatments I'm willing to undergo, and the way I view the appliances I have to use (such as the feeding tube, IV PORT, and ileostomy) may or may not be accepted by another patient with similar needs. In addition, acceptance can vary as time progresses. For instance, I honestly believed that I had reached a point of acceptance for some of my issues. Unfortunately, I'm finding myself confused upon realization that I'm currently challenged with trying to accept the very things that I had previously accepted (or so I thought).
Personally, I think that I must have accepted my feeding tube, lack of eating meals, and feeling sick daily when I could view it as a temporary situation, when I still had hope that it would eventually disappear, and saw the possibility that I could be healed. However, instead of getting better with time, the possibility of my health issues becoming permanent is sinking in and making me second guess what I should or shouldn't accept. Currently, I am trying to decipher how to cope long term with the effects and changes that my illness has on my overall life day after day. I'm currently trying to reach a comfortable and achievable level of acceptance with my illness and all that accompanies it, while also holding onto the idea that my condition can still improve if the right treatment plan is found and put in place.
Since I've accepted the realization that I'm no longer the same person that I used to be, I am no longer hindered by grief over the loss of my prior self. Admittedly, I do still find it difficult to accept a part of me that I may never completely regain, good health, but I am also aware that my eyes have been opened to a world that I never truly understood. I have grown as a person, learned more about general health, body systems, and medical jargon than I ever imagined. I have also learned the value of having close family, a compassionate and caring medical team, and "true" friends. I may have had to face some of my weaknesses some honestly very scary times, but I have also discovered some strengths within myself that I didn't even know existed. My patience, self-esteem, and drive to continue forward has been tested in multiple ways over the past few years, but as so many other people with chronic illness have to do, I am learning to be resilient. Coping with the ongoing effects of chronic illness requires me to constantly redefine who I am and stand strong in my Faith, molded by the reality experienced as a result of my illness. All chronic conditions have the potential to take on a "life of their own", can make one feel powerless over their life, hopeless from the lack of control over one's illness and/or symptoms, and quite possibly isolated as a result of not only their illness but sometimes over the limited choices ahead of them.
Functional GI disorders, such as gastroparesis and colonic inertia, are often misunderstood and unpredictable. This can be very frustrating to the patient as well as their doctors. We can all expect that there will be challenges and setbacks, some significant and possibly even overwhelming at times, but that does not always mean we are prepared for the lack of options, treatments, or answers that sometimes occur. When diagnostic testing requires you to put your body through tortuous hell with the understanding that it may not open up any new treatment options, you can't help but question how necessary the tests really are. I don't think anyone would want to voluntarily exacerbate the most troubling symptoms they experience just for the heck of it, but often that's exactly what we have do if we want a chance at discovering some answers and/or solutions.
How can I teach myself to simply accept some of the horrible testing I have to undergo, accept the lack of options available to help me feel better, and allow myself to accept feeling sick the majority of the time without giving up on myself or my medical team too early?
The persistence of symptoms makes it difficult for me to ignore, explain, and accept. Resisting or rebelling to accept the reality of my condition can cause me to push myself beyond what my body can handle, creating more exhaustion in the aftermath while I attempt to recover from my choices. Consequently, if I accept too much, I may unintentionally limit myself from reaching the best improvements possible. However, when it's all said and done, the best I can do is accept what I can in the moment and let the rest fall into place, then reevaluate the next time I begin to feel as if I'm struggling with acceptance.
A couple of months ago, my insurance decided that I no longer needed a Home Health nurse to come out once a week to de-access and re-access my central line. (I have a central line, Bard PowerPort to receive IV fluids 5 times a week.) At first this news was not only surprising, but kind of scary. As a result, a Home Nurse came out twice to teach my step-daughter how to carryout the switch instead. Talk about nervous! I was confident that she would be able to learn the process, but couldn't help but fear how long it would take her, the increased risk of already elated risk for line infections. Would we be able to successfully change the huber needle and dressing under the directed sterile conditions? So far, she has been fantastic at accessing my PORT weekly, without any complications.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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