I know that I posts more online, whether blogs or other social media platforms, about my illness than many would like read or hear about. I try to post positive comments & pictures, usually family related, as well. The negative ones are not because I want pity or attention, it’s simply because though I am not my illness, my illness is a huge part of my life. How can it not be?? It’s because social media & blogging are an outlet for me, especially since I don’t get out much anymore. Being a private person, I usually don’t share anything at all on my worst days, I don’t go into detail about all of my continuous symptoms or struggles, but at times I do need to get things off of my mind.
Advocating, which I know some are tired of as well, is a POSITIVE act. Since having to resign from teaching due to my health, which is still difficult & painful for me to think about, I struggle with purpose and meaning to my life outside of parenting. Advocating gives me a sense of helping & making a difference, even if it’s small scale. Smiles and laughs caught on camera are positive glimpses, sometimes internal happiness, but not the entire picture.
For example: I spent 2 days with friends across the US in DC last week - both inside. Only 1 of those days (day with legislators) required me to be on my feet for extended amounts of time as we walked between offices. Lots of pictures with smiles, because it WAS a special and monumental time. But, physically it was more demanding than I would let myself believe. Nights were sleepless due to pain & over-exhaustion.
I’ve been home for 1 week and still have not returned to my “baseline”. Up until Monday, my kids were trying to convince me to go to ER or at least see one of my Drs because they were worried about me. I was worried as well, but didn’t have energy or strength to go anywhere & knew that there was nothing that could be done to help. I already have IV fluids regularly at home along with tube feeds & medications. My body just needed lots of patience and rest, still does.
The way my body reacts to what used to be a “simple” day is not caught on camera, is not usually shared, yet is my reality & is extremely frustrating. Keeping my reality bottled up all the time is destructive to mental health. I try to portray positivity, but at times break down and share the negativity of gastroparesis & chronic illness, because if I didn’t I would not remain in a safe state of mind. You don’t have to understand, only those that live with chronic illnesses truly can, but please be respectful & mindful of the need to express negativity at times. I used to try and teach myself to “force positivity” all the time, but found myself sinking deeper in despair. Being “fake” or “wearing a masks” , which I still catch myself doing to prevent others from seeing my pain & how bad I feel, is often much more draining & isolating in the long run and can lead to a more dangerous path for oneself.
Therefore, I apologize if my posts get on your nerves, are negative or sometimes even depressing, but I do not apologize for being real, being human, and looking after me.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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