Basics for Beating Bad Days

May 3

I have to remind myself sometimes that no matter how well managed my symptoms are or how good I feel at one point in time, I  still have Parkinson’s disease. Which means, all that goodness  could just change at anytime. And it my case, when it changes, my primary symptom dystonia plagues me. And, it hurts. I feel a little silly to admit but sometimes I forget. Whether it hours or days of being in flow, when my dragon companion comes to visit and settles in for what feels like an extended stay, there are a few things that help me make it through the day.

Sleep as Needed

Today was a rough day for me. Rough for me, first and foremost means I sleep late and I sleep a lot. I’m a natural early riser. When I was growing up, my mom would frequently say to my siblings and I, “the early bird catches the worm”. Call it conditioning, habit or preference but I routinely get up without an alarm clock around 4:30 or 5AM. It’s quiet, I can collect my thoughts and make use of my very best energy. On high pain days when my muscles have been overactive and living a life of their own without my consent I tend to sleep in. If you call me at 7, 8 or 9 am and it’s not a nap, it’s safe to assume I’m recovering and am in full rest mode. Today, I officially got up around 10AM.

I’ve gotten better at allowing myself to be restored in this way without judgement but I’m not perfect at it. I found myself mildly annoyed with myself when shortly after getting up and doing a few things I needed to rest again. I gently said outloud to myself, “honor yourself” and then proceeded to nap another 2 hours.

Look Good, Feel Good

I always wear my earrings. My favorite pair were on my nightstand and ready for me after I took my meds and sipped my water. I don't have a mirror in my bedroom and I hadn't gotten out of bed to see myself but I felt pretty already. It's one of the things I have control over and I can do for myself, so I go for it.

On days when I wake up and know that I’m gonna be at lower than a 5 on a scale of 1 to 10 for mobility and energy I already know I’m going to shower or bathe when I can and I’m going to put on clothes that are comfortable, easy to put on and take off. Some of my favorites are biker shorts and a crop top or a two peice set (shorts) or a nightgown. I feel like its nice to choose things that I actually like.

Since its a known rough  day, I go for basic body care and skin care but I still opt for a lil fragrance. Of course wearing pearls and perfume don’t chase the pain away but it makes me feel a little more myself  in otherwise sleepy and agonizing times. I'm also going about all of these things as my body allows. At times I've had to abandon my bath to allow for a dystonic storm to pass. In which case, I robe myself and revist the whole endeavor when possible.

Hydrate & Nourish

Bottled water by the bed for emergencies (small ones, easy to open and not too heavy to maneuver on my own if I'm in distress)

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Sippy cups gifted by bestie 
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Pre-sliced lemons and/or limes

Emergency food :  instant oatmeal, ready made smoothie beverages

Mantras, Movement & Amusement

Prolonged pain can cause me to be sensory sentive so watching tv usually isn't a viable option for me.

music (frequencies, classical, personal playlists)

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podcasts 
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books ( ole skool - sometimes the voice reading an audiobook can be distressing)

going for a walk, doing a  few minutes of yoga or stretching

Mantras: "I am grateful for my breath. I am grateful for mobility and flexibility. I am strong. Thank you." Repeat

“I am ok, I am safe, bears are not chasing me”
Just breathe

Celebrate the Wins and the Wonderful

Disclaimer: Anyone who knows me well would know that I struggled to title this post Basics for Bad Days. My stilo is more like Basics for  Days When I'm feeling less than my best. I struggle with words that have negative connation but it's kind of necessary to call a thing a thing when it comes to long-term chronic illness.

What are your non-negotiables if any on your worst days?

Serina G