Getting into the doctor and making it through a visit can feel like a marathon that I haven’t trained for. When diving into my current and most recent symptom lists and treatment plans, it can become exhausting and repetitive. Having an extra pair of listening ears, either one of my parents or my husband, can be extremely helpful and beneficial. Not only can they help express to my health care team what they witness, but they also are able to help me process what was said during the appointment afterwards.
I don't choose to “opt-out” of life. My approach to living life in spite of illness just looks different that what it used to and different than what "normal" people would expect. I don't always understand or comprehend how I am feeling or why I am having certain symptoms, and am aware that it can seem twice as hard for an outsider to comprehend, as well as for the me to accurately explain.
At times I do become quiet and withdrawn, but that's not always a bad thing. Sometimes, I’m being quiet because it is my true self, I'm not a talkative person by nature. I have always been more on the shy and reserved side. Other times, I may be quiet because I’m feeling miserable and don’t know how to, or can’t, verbalize what I’m actually feeling at the moment. It can often be hard for me to explain or answer a simple and common question, such as "How are you?" or “Is everything alright?” It’s just easier to give a simple ok or yes and brush it off than trying to adequately express my thoughts and symptoms. Often when I’m not feeling well, I choose to shrink back into my own world. This can be for different reasons. Sometimes it’s simply the best way to distract myself from the pain I’m feeling. However, I have learned from experience that hiding or withdrawing isn’t always the best practice, but sometimes it's the only coping strategy left to result too, especially when my other coping strategies aren't working effectively. I admit that I often avoid seeking help from other people, instead I try to depend on my faith, my individual strength, and my other coping mechanisms. Other times, I have no choice or run out of options. My continued symptoms, especially if constantly severe, may force me to rely on others and their aid, even though I try to avoid it if at all possible.
I don’t like to let people down and when I get the impression that I do, or from my perspective I think that I have let someone down, I feel terrible, especially if it's been happening often. An occasional let down here or there is tolerable and acceptable, I don't expect to feel decent every day. I'm aware that bad days are destined to occur from time to time, for me quite regular. At times, I do find myself battling the "Fear of Missing Out" mindset, especially in regards to unique experiences with my children. I know that it's just a matter of time before their age and their personal life, is going to interfere, limit, or remove the possibility of having the opportunity again.
Sometimes, I might need to spend time alone to re-energize, but when it’s due to a health flare, it’s not an enjoyable experience. Some of the activities I would normally do when spending time alone — reading, writing, watching tv, listening to music — are downright impossible when I’m feeling my absolute worst. As a result, the solitary hours can seem painful and endless.
I have learned to hang on tight to decent moments and treasured time with family, no matter how simple, as they are what helps me survive the sick times and remain hopeful for tomorrow. I've learned that there is nothing wrong with taking one day at a time. In fact, sometimes I have to focus on just an hour or few minutes at a time, and that's alright.
It’s important for me to have a small circle of people that I can depend on, that I can count on.
It can be easy to feel like a mess, maybe even a burden to those around me. It's also not abnormal for me to cope with difficult situations or try to be a protector (of self and/or others) by simply putting up a wall, or pulling up my drawbridge. (Earlier blog about that can be read HERE). Yet, when I truly take a moment to consider the trusted loved ones and caring people that I choose to surround myself by, I soon realize that they don't feel burdened or disappointed, but rather are just concerned and want to help.
In short, surviving and living with chronic illness is not impossible. There are positive moments and blessings along the way and a new appreciation for life that's often taken for granted can be gained.
"Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind." - Bernard M. Baruch