Sometimes I forget how challenging it is to live with a
chronic illness. It really is a full-time job.
Life in the before time (BT) - the time before I became
disabled - was so... different! Life in BT was grand (In hindsight! Of course,
there were challenges even then!). I adapted to
change nearly flawlessly (I thought!); I could be and was impulsive; I could
take off at a moment's notice on weekends when T was with his dad; I could go
out dancing with friends as often as I wanted; jogging was freeing; regular
road trips were mandatory. BT was filled with love and joy and laughter and
fun.
Those things are harder to come by these days, in the now
time (NT). The thought of even a short car ride means preparing my pillows,
ensuring I have my tappers, timing meds and having extra on hand, and ensuring
that the vertigo is in the background. Even the simple things mean planning. I
haven't gone away for a weekend in years... I KNOW that I can usually sleep in
my bed, with all of its modifications, but other beds are definitely not
something I look forward to anymore. Jogging, dancing, road trips - those are
fond BT memories. Opportunities to be impulsive and not suffer rebound effects
for days or weeks are few and far between. Love, joy, laughter, and fun are
still present in the NT, but they do feel different. Leaving my house in the NT,
with all of my tools, is reminiscent of the time with T was an infant and it
took an hour to pack up all of his gear for a trip to the store!
Most of my daytime hours now are spent just living. It isn’t
until I come up against the desire to do a normal activity like washing my
hair, which requires no thought or planning for most people, that the fact that
I am living with chronic illness really hits home. For me, washing my hair isn’t as
simple as jumping in the shower. Washing my hair triggers vertigo no matter how
I try – in the shower, sitting, standing, leaning over the sink, short hair,
long hair, etc. I’m working with my physical therapist to hone in on the hows
and whys, but in the meantime, the vertigo and anxiety cycles cause me to
extend the time between hair washings to an unbearable length. Clean hair
equals positivity and feeling good in my world. The longer I go between hair
washings, the grosser my hair, and I, feel.
For those who have never experienced vertigo, even after a
wild night on the town and copious amounts of alcohol, be extremely grateful!
It is such an awful feeling. The world spins, nausea hits hard, and you’re
fighting to sit still while struggling to not throw up.
I’m not a New Year’s goal-setting person. I’m more of a Theme and Intention person. My theme for 2024 is Light-hearted, Playful Curiosity. One of my intentions is: I live in a vital and healthy body. For me, feeling healthy and vital includes having clean hair. With that in mind, I'm leaving behind frustration, sadness, and fear. I decided to bring the spirit of curiosity into my quest for clean hair. I decided to experiment - to think like a scientist and approach my experimentation methodically while maintaining a mindset of curiosity. My experimentation will be guided by the Scientific Method (Question, Research, Hypothesis, Experiment, Data Analysis, Conclusion, and Communication), not in a rigid way, but in a playful way. I’ll test different dry shampoos, no-rinse shampoos, body positions, tools, etc. I am staying curious, researching, and experimenting as often as I can. Fingers crossed the experimentation will yield the result I want! In the spirit of play, I was watching a Friends episode in which Phoebe sang, The Shower Song. Phoebe always makes me giggle!
What are you releasing and leaving behind from 2023? What
are you carrying into 2024? What theme will guide your year? I’d love to know!
