Reality Check

A long overdue social media reality check…

While showing off my new rollator in the family kitchen, my mom carefully asked me how I felt about people outside of my very small inner circle knowing about the state of my health & functioning…and I realized that I’ve been keeping that circle smaller and smaller. As my mysterious medical journey continues to evolve, my symptoms increase, and my functioning decreases, I felt it was a good time to release myself from the desire to appear “normal.” 

(Please join me in laughing at some of these photos and moments, my top way of coping is laughing at the absurdity of it all ❤️)

I was diagnosed with POTS (postural orthoststic tachycardia) & hyper mobility syndrome back in 2019 after many years of struggling. I’ve had good days and bad days since then and lately the bad days have far outweighed the good. With the addition of multiple nerve disorders, PMDD, and increasingly debilitating physical symptoms around my period - I am forced to come to terms with the fact that my medical journey is far from over. 

My years of pushing through symptoms and ignoring new issues have caught up to me and my body is not very subtly letting me know that things need to change. I’ve resisted using mobility aids like my canes or my groovy new rollator because I didn’t have the mental space to deal with the looks or questions about “looking disabled.” As the people who have watched me struggle have pointed out: this is dumb. Anything that helps me move, walk, and exist with any degree more comfort or happiness is well worth the odd stare. 

I want to take a moment to thank the people who have supported me physically, emotionally, financially, and so many other ways. While disability, chronic pain, and illness can be extremely isolating, I have been lucky to have people who have done all they can to understand and help. Thank you for all the compassion shown when I’ve had to cancel plans last minute, for understanding that some days I just can’t, and for allowing me the space to grieve the life I thought I would be living by now. I am sure I have many more appointments, tests, specialists, breakdowns, and complicated feelings ahead of me, but I’m hoping that going forward with more openness will help me face it all with less fear. 

Oh and shoutout to my cats who happily keep me company when I need to stay in bed all day. 

Thank you for taking the time to read 🥰