Awake: A Dream About Sleep

Over the years I’ve noticed doctors, bloggers, vloggers, mamas, grandmamas, pop-pops and even your cousin Cliff sing the praises of getting adequate sleep. They say that adequate sleep can lead to all or some of the following: glowing skin, improved brain function and memory, reduced stress and a better mood. And, that's just the beginning.

I’d like that. All of it! Please sign me up for as much as in stock. 

One night while not sleeping but desperately wanting to, I simply took deep breaths, waiting for my muscles to relax enough for the pain to stop. I imagined what it might be like if humans could go to Costco sized warehouses to pick up their nightly rest. At sleep centers, you get your sleep for the night but they also have sleep accessories available for purchase. If it goes with sleep, they’ve got it. Linens, duvet covers, pillows, memory foam mattress toppers, essential oil diffusers and even soft cozy pajamas. This place is literally a dream. So one Wednesday evening after a few sleepless nights, I hurry in to get the goods.  Here’s how it goes: 

Me: I show my ID card and enter the warehouse and wait in line at the Sleep Allocation Counter. When it’s my turn I greet the clerk. Hi, how’s your evening going?

Sleep Stock Clerk: Good! My shift is almost over. How can I help?

Me: Yeah, I’m glad I got here before you guys closed. I’d like as much sleep as you have in stock. I’m planning to do some serious catching up. God knows I could use it.

Sleep Stock Clerk: Looks at me, and shares the information that appeared on her screen. System says we’re all out of nighttime sleep. 

Me: My heart sinks a little and my eyes widen. I don’t say anything. I wasn’t prepared for this but I already know I’ll take whatever I can get.

Sleep Stock Clerk: She does some clicking on the keyboard and says, well, we do have about 2 hours this evening from 8pm to 9:59pm. She pauses, does some more clicking around, then looks at me and says, I see there was some sleep from 2:47A until 5:13A that was put back on the shelf, I could give you that if you want to take it.

Me: Thinking, I didn’t come here for some used subpar sleep. I wanted the good stuff! A nice 10p-5a slot would be heavenly. Confused, I ask, "how is that possible? I see your colleague over there with plenty. He’s handing out 7- 13 hour long slots of sleep to that long line of people over there and their pets like its air! I didn’t even know you guys handled pet sleep here."

Sleep Stock Clerk: Looks over to see what's going on. She replies, Oh, I see what you mean. Let me check to see what's going on,

Me: I politely say thank you! (I'm hoping that there’s been  a mixup and I wait for my adequate supply of sleep) 

Sleep Stock Clerk: Sorry Miss, what I mentioned earlier is all we have for you. All sleep is administered on a case by case basis.

Me: Reluctantly, I reply “I’ll take both sleep sessions please”

Sleep Stock Clerk: Well Miss, there’s a note in the system here that says I can only give you one of the sessions.

Me: I sigh with dissappointment but quickly make my decision. Ok, I’ll take the 8-10PM.

Sleep Stock Clerk: Are you sure? It’s currently 7:23PM. And it’s until 9:59 not 10PM, she said, correcting me. We’re required to to inform everyone that there no are exchanges or extensions if you miss your slot or any portion of it. Also, there is no additional time alloted for settling down.

Me: Dissappointed and increasingly more tired. I don’t have much energy for asking more questions so I try making a mental comparison of the sleep I could get for the night. Either I could get 1hr and 59 minutes of  sleep right now or 2 hours and 26 minutes of sleep in a little more than 5 hours from now. I lean in, lower my voice  a bit, and reading the clerk's nametag I say Aurora, I’m willing to pay extra if you could check the reserves or maybe pull a little from next Saturday’s sleep allocation for me.  I’d really appreciate it if you could help me out here. The last few nights I’ve come in there was nothing available and I was told you’d be getting a new allocations of sleep this afternoon. That’s why I asked for as much as I could get  all at once."

 I tried not to show my desperation but it was too late.

Sleep Stock Clerk: Aurora was not moved. I’m sure gets these kind of offers from insomniacs all the time. “Miss, as I mentioned earlier you may have either the 8P - 9:59P or the 2:47A - 5:13A slot.” She looked at me expectantly. 

Me: Looking at the big digital clock above the clerk’s counter, it’s was 7:31. I have one more thing to ask so I politely say to the clerk, I have just one last question if you don’t mind.

Sleep Stock Clerk: Aurora who’s accommodating disposition is shifting towards annoyed, answers “Yes, ma’am”

Me: Ignoring the fact that she just ma’amed me, I say, “So if I were to take the later session which would give me 26 minutes more sleep what would I do in the meantime?”

Sleep Stock Clerk: I am sorry Ma’am. We cannot help with that. We only distribute and regulate sleep here. Will you be making a choice this evening? There are others in line behind you and we will be closing soon.

Me: trying to buy myself more time Ok, I’ll take 2 extra firm king sized pillows  from the Cloud collection and …

Sleep Stock Clerk: Impatiently waiting at this point 

Me: ahhh, a standard size memory foam pillow from the Dream collection, those are really nice. Do you have the weighted blanket from the Slumber line? If so I’ll take that too. It’s been out of stock

Sleep Stock Clerk: And your sleep for tonight, ma’am…? 

Help! What choice would you make? Also, does anything keep you up at night?

Well, I’m done writing for tonight. I found this little idea that came to mind laughable. And it’s served me well as a distraction. It’s currently 1:21AM in real life for me and I had every intention of going to bed hours ago. I knew I was tired around 8:30.  I settled down and was ready to count sheep and let sleep come over me by 9. It’s hours later and I’m feeling physically worn out from the involuntary muscle spasms that vary in intensity, My eyelids are heavy but the muscles in my feet and legs are still pulling. I am very used to the ebb and flow of this life that I live. It requires a radical acceptance of the fact that I am not in control. It requires a deep understanding that I am not to fight against what my body dictates moment by moment but I am to flow alongside it. I am to be patient and know that my time to rest will come.

Sweet dreams.

Basics for Beating Bad Days

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) 

• Sippy cups gifted by bestie 

• 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) 

• podcasts 

• 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?