This past weekend I remained home while my family went away for a weekend trip to the water park. While I don't like being left behind from vacations, I welcomed a little bit of "me" time. As crazy as it sounds, I'm still trying to physically recover from my outing earlier this month. Well that and the difficulty sleeping due to numerous nightmares each night over the past month or two. My lack of patience and levels of irritability have increased, which to me is a cue that I'm in need of some quiet 1 on 1 reflections.
During my necessary "me" time....
I enjoyed bonding with our new kitten.
I attempted to journal and blog - both of which were unsuccessful.
After deaccessing my PORT, I took a couple of long relaxing hot baths.
I turned up the speaker volume and listened to my favorite songs.
For some reason, the above just didn't quench my thirst to feel "normal" enough. I have spent so much time trying to be extra mindful and careful of meeting my medical needs and preventing (if that's even possible) undesirable symptoms. I've tried to stick solely to tube feeds, IV hydration, and only extremely low volumes of liquids. Quite literally, I was and am sick of playing it safe, to only feel discouraged and abnormal.
I wanted to feel at least semi-normal. I wanted to take a chance at seeking and maybe even achieving some non-sick normalcy, even if it meant that I would have to face some consequences. However, at the same time, I was well aware that I didn't want to risks stupidity or create any harm.
The thing is, I don't know what I am expecting or in search of. I know that there's a large spectrum of normalcy. Not everyone is the same. My normal is not the same as the next person's normal or the next. We all have our own "normal" which constantly evolves with time. Blah blah blah......
But what about when you look within yourself or at yourself from a different perspective and you no longer know what your normal is supposed to be like anymore? What about the times when you feel like a stranger in a stranger's body with a stranger's mindset? How is any of that normal? How do you accept your normalcy, whether it's desired or not, without completely retreating or withdrawing from yourself and others?
Because to be quite honest, I'm exhausted from trying to be normal in everyone else's eyes while also trying to make myself understand and accept that my current normal can be ok.
More recent deaths, both in my physical and online communities, cause me to contemplate how I can better improve the quality of my life. Anyone can become sick or sicker at a moment's notice. We ultimately do not have complete control over our health, no matter how much we may try. Similarly, tragic accidents happen everyday. We can try and take preventative measures, but those measures may or may not be enough to provide us more time with loved ones while we are here on Earth.
Realizing this confirms just how important it is for me to make each day count for something. My goal is to feel as if I am living, not just existing or wasting space, so when it's all said and done I'm not full of regrets. This is easy to say, harder to do, especially when attempts to "live" can cause immense fatigue or drastically increase my symptoms. Achieving an acceptable level of balance that respects all areas of my health (physical, emotional, and mental) while also limiting frustration, minimizing undesirable consequences, and reducing regrets is undoubtedly extremely challenging and even troublesome at times.
So what can I do?
How can I encourage myself to redefine my life with illness without sacrificing too much of me?
Below are my current plans of action...
Foster or participate in positive moments to reflect on with the kids
Maintain memories by regularly writing in personal journal
Work on completing the ALL ABOUT ME journal to be passed down to my kids
Create Picture DVD videos for each child from old picture film canisters and memory cards
Focus on and appreciate all of life's blessings, no matter how small
Fight for the best possible healthcare
Spend quality time with kids and family
Stay up-to-date with research so I can make best educated choices
Help others along health journey by sharing awareness, answering questions, and offering support
Cuddle time with Pets
Consider how I can continue to grow as a person (hobby, books, writing, online class, etc?)
Have courage to live life true to me not others' expectations
Take time to make conscious decisions each day that fulfill my personal needs/roles
Take reasonable risks while accepting and being patient with myself during the consequences
Live life less seriously to enjoy more moments in the moment
Respond to myself the same way that I would treat a friend going through something similar
Undoubtedly, no matter how devoted I am to the above goals, things will not always turn out the way that I expected or wanted. I will never be able to eliminate or avoid all regrets. Bad decisions will sometimes be made as I'm only human. However, when looking back with 20/20 hindsight, I need to remember why I made the decisions I did and remind myself about what my intentions were at the time. Even if I don't like the end results after some of my actions or choices, if they were made with the right intentions in mind I should not burden myself with any regrets.
Living life with chronic illness does not mean life will be full of regrets. Life is what we make of it.
In medieval times, the labyrinth symbolized a hard path to God with a clearly defined center (God) and one entrance (birth). (https://en.wikipedia.org/wiki/Labyrinth)
As I sit here today, reminiscing on the past week with my family, I can relate to and visualize me maneuvering through a combination of intricate and complicated paths. Determining which paths are worth traveling and which are not worth the risk can be difficult. So much of our life, whether plagued with chronic illness or not, is left up to chance. No one knows what the future holds. No one knows how or when the road will end abruptly or twist in another direction. All we can do sometimes, is hold our breath and continue forward the best way we know how, which is exactly what I did this past week.
My dad, husband, kids and I headed off for a meaningful low-key vacation. Besides having a destination in mind, we allowed the trip to unfold naturally. We knew that traveling would be physically tough on my body and that I would need to spend the majority of my time at the hotel. That being so, we stopped half-way there and half-way home to spend the night and rest. We also reserved rooms right in middle of the downtown action, allowing my family to come and go as they pleased, in walking distance from all of the restaurants and attractions. This also provided me an opportunity to rest or infuse my IV fluids without feeling guilty or left-out. In addition, I was able to relax on the garden bench right outside our hotel while watching the pedestrians walk up and down the street, and close enough that I could walk across the street to sit with my family at dinner. I was even able to make it inside the multi-level mall, where my family pushed me around in a wheelchair. At first, I didn't want to resort to using a wheelchair, but I accepted that it was not only reasonable, but necessary, if I wanted to see the mall in it's entirety.
Mentally, this vacation was definitely worthwhile. Timeless and treasured memories were created with my dad and kids, I was able to actually meet and chat with a very dear friend and her family, and I survived! Physically, well that's a different story. While my muscles were fatigued, I was so engrossed with what I was doing or wanting to do that I ignored or simply lost track of what my body was telling me. Even though I was only away from the actual hotel for a max of a couple of hours total each day, my muscles were maxed out in no time at all. Each night, I was in bed before sunset, however, I had very little sleep due to muscle tightness and spasms. Each morning, I was in worse shape than the day before, but was mentally strong enough and interested enough to use my "masks" and not let on to others how much I was physically struggling. On the 2nd night there, I literally spent the majority of the night praying to God that this trip would be successful and that I would survive without any medical attention. (At this point, I already felt as if I was walking a thin and dangerous line with my health.) Thankfully, God heard my prayers and carried me through the next couple of days, never leaving me stranded.
All in all my family and I were blessed with an amazing vacation together that we will remember forever. Our family planned as wisely as we could, minimized the risks as much as possible, and maximized our quality of time together. Did I still have symptoms to deal with? Yes, especially fatigue and nausea. Did I have much pain? Muscular pain, yes, stomach or intestinal pain, not so much being that I strictly limited my intake to fluids only and even that was kept at a very bare minimum. (In the days prior to leaving, I had absolutely nothing to eat or drink to help "prepare" my body with an attempt to "prevent" any symptoms.) While my body has massively paid physical consequences from this low-key, yet highly meaningful vacation, I absolutely have no regrets. I'm not sure how long it will take for me to fully recover, but I'm willing to be patient with my body. How could I not be after successfully accomplishing a great feat during this section of my chronic illness labyrinth?
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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