When chronic illness first appeared in my life, I went through a period of grief. Not only were awful debilitating symptoms and uncertainties plaguing me, but guilt overcame me as I began to feel like a burden and failure to my family. Life had changed. The activities that I once enjoyed, looked forward to, and partook in drastically changed. I was constantly feeling like I was a disappointment for not being present or able to do the things I loved, having to cancel out of events, or staying at home while they actively lived their life.
As time moved on, my illness and symptoms continued, but my family and I were able to reassess and redefine what qualified as important quality time together. Sure, I still feel sad about and miss the me that I used to be and regret some of the activities that I miss, but there are other activities that are more conducive to my health and more accepting of my limitations. (Yes, I still take chances at times, pushing my luck, and testing my boundaries, but have learned to better listen to my body's needs so consequences are more manageable and less harsh.)
So what are some of the treasured times with my family, especially my children?
We enjoy watching Netflix series together, sometimes binge watching style, watching sporting events on television, and are at-home (and occasional theater) movie buffs.
My kids (17 &15) and I also enjoy going out for afternoon one-on-one drives. We have enjoyed going out driving on occasion, with the sole purpose of trying to get me lost, and then together figuring out how to return home. GPS on the cell phone has admittedly come in handy a few times. These times are limited, but treasured. In order to take a drive, I have to be having a low nausea, low pain day with a decent night's rest the night before. There have been times when the planned drive had to be canceled or ended early. Besides a few unexpected "events" like my feeding tube becoming disconnected or most recently my ileostomy springing a leak, these outings have been pleasurable. Must admit I am blessed with how understanding my kids are.
Over the past few years, my kids and I have also returned to playing games together. Some of our favorites include CLUE, CRAZY 8, UNO, JENGA, ZOMBIE-OPOLY, SORRY, and video games such as NASCAR. We also have meaningful as well as silly conversations.
Vacations are sparse and much less active, requiring mostly just relaxation at the hotel or cabin for me. If they are going somewhere more physically exhausting, I will either remain at home or if nearby, hang out at the hotel.
I would love to hear ways that others living with chronic illness enjoy life with their loved ones?
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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