Insomnia Has My Life On Hold

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Here’s a window on what it’s like to live with my disabilities, particularly the sleep disorder aspect:

Other than managing to make it to Friendsgiving, I’ve had a bad four day weekend, healthwise. I’ve missed several fun outings that I actually didn’t even know about. I think I often miss notices and event invitations posted online because I spend too much time sleeping, trying to sleep or scrambling to get things done during waking hours when it’s acceptable to do things. I suspect also that sometimes people stop inviting me because they know I have trouble getting up on time and they don’t want me to feel bad because I often can’t afford to do what they are inviting me to do. Ironically, when I have steady social activities I get better at getting up. I’ve probably spent 75% of the past 100 hours in my bed. My back is a wreck. I was recently assisted with the funds to buy cushiony and supportive bed stuff and I can’t wait, because that will improve my sleep quality and make waking up less painful. Every little bit helps!

For now though, extreme insomnia rages, I’m too exhausted and too old to grit my teeth, caffeinate, stay up and push through after a sleepless night so I eventually nap and then don’t wake up because I’ve fallen into REM sleep. Once there, I have intense dreams that are very real and long. I have quests in my sleep. I solve problems. I have love affairs. I do interesting things. I meet strangers. I speak to demigods and ghosts. I do some of my best writing while unconscious. It’s almost like I’m doing all my living in my sleep.

Lately, I’ve had a lot of what other people would call nightmares, but they rarely upset me. My distress at being attacked by someone sinister or chased by lions or zombies is often lower than one would expect. Usually,  I am merely frustrated and curious. It’s not often that the fear sticks with me after waking. Occasionally, I will dream about something horrific or evil and get stuck between dream and waking almost like sleep paralysis except I know I’m awake. In these cases I find myself fighting going back to sleep because I don’t want to go back into the dream or I will lie there feeling like something terrifying is in my home and I have to get brave to snap the spell. Once I get up, turn on lights, pee, drink water, it’s gone. It doesn’t happen often but I’ll take it over other people’s tales of sleep paralysis any day!

Yesterday I slept until nearly five in the evening. I had a lot of dreams where I was being chased and the consequences were such that I really didn’t want to be caught! I am often able to wake myself up in a bad situation, because I dream lucidly but usually, I can’t stay awake for long.  I was dreaming something really gross and terrifying this morning, I think I was having my guts slowly chewed out by some hideous beast, very graphic, so I woke myself up, but fell back into the dream and had to wake myself up 3 more times.

I finally snapped out of it enough to look at the clock, but it was still 90 minutes before my first alarm and I hadn’t had enough sleep. I was also not awake enough to be decisive and just force myself up, so I nodded off and proceeded to fall into a deep sleep with several rounds of heavy dreaming. I worry that at some point an emergency will happen, like a fire and I will not wake up. I can set 5 or 6 loud alarms but if I am in this deep sleep mode, I don’t wake. I think it’s possible I sleep through the alarms, but more than likely, I wake just enough to turn them off. It helps if my bladder forces me up but for the last week, I guess I’ve been using more fluid than I’ve been flushing through so I am waking whenever the hell my brain is ready to wake up. That’s been anywhere from 3pm to 730 at night.

This wackiness is the main reason I got my disability approved. I’m unreliable because my sleep patterns make it so I can’t commit to any consistent schedule because I am at the mercy of my weird brain. And yes, I have done all the things. This disorder is resistant to sleep hygeine, routine, foods, drugs, etc. It’s related to my PTSD and my MS and it’s exacerbated by chronic pain and fatigue. The only time I’ve ever managed a semi normal schedule is when I was with a couple of men who I liked to call, “sleep dominant” because I felt safe enough to go to bed when they said it was bedtime and actually fall asleep next to them.

I’ve mostly just realized I am just different than everyone else and it doesn’t have to be a big deal. But it is a big deal when I want or need to do something during daylight hours. It’s been hell trying to get things packed and storage moved. When I don’t have help, which is unfortunately, the norm, getting anything done is painfully slow and often expensive. Some weeks are better than others. The winter is harder, especially right after the time change. The sudden deep, dark paralyzes me.

If I have to be up early, there’s always the possibility I won’t wake up. I slept for about 8 hours today. It wasn’t the best sleep but I should start to feel awake in a couple of hours. Unfortunately, I need to be up by 730am at the latest tomorrow. I have a plan. I hope it works. I do not want to miss this appointment!

I’m going to take care of LiLi, my cat’s stuff first, I’m going to take a warm shower, but not wash my hair, eat a bunch of comfort food leftovers so I’m full and sleepy, absolutely no caffeine, no TV or anything stimulating, and I’m going to take some sleepy inducing meds. Not going to start or pick up any projects. Going to do my best to be in bed, lights off, listening to nature sounds or a podcast with a monotone speaker by midnight. Wish I had some milk, but I have another 10 days before I have grocery funds. *fingers crossed* Even if I don’t get enough sleep, I just want to wake up in time because I’m doing something I’m excited about tomorrow!

I wish you good sleep and productive waking hours!

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Did Someone Request A Bedtime Story?

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Once upon a time there was a little girl with pink hair. I know, I know, you are thinking her name starts with an A or a V, but you would be wrong. You’re thinking of a grownup with delightful childlike qualities. This story is about a little girl, remember? ANYWAY! The little girl’s name was LuLu.

LuLu was a most adorable child. Her face was round. Her eyes were wide, blue and ringed with marvelously thick lashes. She had incorrigible dimples! She wore her rosey hair high in two soft puffs tied with rainbow ribbons. Always hoping to find a nice, splashy puddle, LuLu never went outside without her lavender overcoat and her favorite leopard print galoshes.

LuLu liked to go outside, but it didn’t happen very often. She was too sleepy. Everytime she even thought about going outside she would burp loudly and start to nod off. While other little girls tried to go to sleep and failed, she wanted to stay awake but couldn’t keep her lids up. Sometimes, LuLu even fell asleep while holding her mouth open for her mother, who helped her brush her teeth every night, “Lulu,”she would scold as she flossed the little bits of meat from between the bicuspids on the inner row, clucking, “Tsk. You shouldn’t eat so much, especially so close to bed. You are eating us out of house and home! We can’t keep a cook and the school says you won’t be able to come back if you can’t learn to control yourself.”

LuLu snapped back to consciousness with a snort and spit out her toothpaste.

But Mama! I love school! And I excel at naptime!

“LuLu, none of the other students can take a nap with you! According to their parents, most of them can’t sleep at night either. We are having quite a time smoothing things over. We may have to homeschool you. IF we can find a tutor who is willing. Really, LuLu, I don’t know what we are going to do with you.”

LuLu pouted. She was even more adorable when she pouted. Her pink pom poms drooped. “But Mom.”

Her mother extended an arm, handing LuLu her pajamas. They had a funny print on them; crocodiles with bowler hats, penguins doing penguiny things, robots eating ice cream cones and of course, rainbows!

LuLu gave her mother a goodnight kiss and let herself be tucked in tightly. The light was turned out and she heard the latch click, firmly securing the door. Her mother told her this was for her own good. LuLu sometimes walked in her sleep and wandered off looking for food in the middle of the night. Through the heavy wood she heard her mother sigh, “I know you try to get along with others, LuLu, but your classmates are all terrified of you!”

I know, Mother.” LuLu answered solemnly, while in the dark she smiled, all four rows softly luminescent, “But I can’t help it. They are delicious!”


*I scribbled this out quickly, for my friend, A, also known as Victoria Victrola, who also suffers from insomnia ,because she requested a bedtime story. She didn’t specify if she wanted one to make her sleepy or to keep her awake. Oh well. This is a silly little tale, so I hope that does the trick.

Azul

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There may be more to this someday, but I think I am pretty happy with just four lines.
Blue is generally something I associate more with happiness than depressions.

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AZULE

Are you blue?
The bluest sky I ever knew, and twice as true
I watch the galaxies go by spinning at your feet
I marvel when the stars bend down to kiss your cheek.
-LM

The Holding

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This little paragraph has been sitting around for awhile as you can see. I wrote along with the previous post for something that inevitably I didn’t use it in. Also, like the previous piece, it feels as if it could work in poem format. I’m not sure I am ready to do that though. It could certainly be read with the cadence of a poem so I think I shall mark it as both, for now, And reserve the right to do something else with it one day. I did like the idea.
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Found on Pintrest. I think this is called, Final Resting Place by Miro Johannes


I sit, not silent as the grave, for I am the grave. I am cavernous earth waiting to cradle your flesh, bones and finally your dust. I have lessons for your soul. I have messages from your ancestors and your ancestors’ ancestors! I prepare to listen to the weeping, the remembering and then, the forgetting. I wait to sing you into the great unknowing with the silent music that only angels, oaks and stone markers dance to in their perfect stillness. I sit waiting to hold you. Waiting to bear witness. Waiting to absorb your story into all the stories that have come before.
 
– LM 2013

Waiting to Become

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Photo I took in Caspar, California 11-13-2013 

I wrote this piece, initially as prose and it sat around for a bit because I thought I was going to incorporate it into another piece, but ultimately, it didn’t fit. Looking at it now that I am finally posting it, I realized it might work better as a poem. As I wrote it, I was thinking of describing something abstract, not personal, not a relationship. I don’t think I meant to do it, but it definitely holds pieces of a relationship that had me in limbo, one  where the person I was with very good at mimicking being a good listener. They had honesty problems. And perhaps the most painful bit was that they painted a picture of the person they wanted me to be rather than seeing who I was. I ended the relationship around this time, but it kept resurrecting itself. I didn’t truly end for at least another year. Recently, I found out this person, whom I haven’t spoken to in two years, is still making up stories about me. I don’t ever want to feel like this again,

WAITING TO BECOME

You think
That it’s my voice
You’ve been hearing,
But
I am only silence

I am potential

I fill in the cracks with my darkness
Soft as raven’s breath
The deep maw of quiet
Broken and whole

You dream me
Walking and talking
All the while I sit
Invisibly
Perched
On the very tip of your tongue.

I wait
I wait for you
To speak me into being

I wait
For your fear
To ebb
For your love
To flow
Bringing me in
On the tide of your reality.

Then
I will no longer be
Remote as the moon
Or close
As your very next heart beat

I will stand free
I will be more than a whisper
More than shadow
More than white light

I have been
Only what you made of me
You painted me
On your expansive canvas
Too often your art is a lie

It is harder for you
To name my truth
So, I may be waiting
A long, long time.

Meanwhile,
I sit
All silence
While you convince yourself
You have heard
Every word

I wrap myself
In the muddy snows of quiet

And I wait

-LM 2013-2017

Conversations With Coffee: Compliments

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Coffee: You Rock
Me:*blushes* Aw. You Rock!
Coffee: You Rock.
Me: You are delicious and YOU Rock!
Coffee: You Rock.
Me: Thanks. I am so zippy now. Mmmmm. YOU totally rock!
Coffee: You Rock.
Me: You may be a coffee of few words, but you sure do pick them well!

-LM 11/2014

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* I used to go to this cafe when I lived in Vallejo. It was called, Good Day Cafe. They had fantastic waffles, the people who worked there were so nice. All of the coffee mugs had these positive affirmations and sayings on them. If they got chipped they sometimes sold the mugs at a discount in their little gift area. Last time I went there I noticed most of the mugs were just plain white. I guess it got expensive to replace the other mugs when they broke.

Fall Back

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Limbo Samatha Louise Photography

Credit according to Pintrest: Limbo by Samantha Louise Photography

Fall Back

4 AM
Really 5 AM
Time change
Falling backward
Time for a change

I am just now
Putting sheets on my bed
I want to fall in
I want to sleep
But my body isn’t ready
It’s humming
like bees

I feel
needles and blades
running inside my skin
my breath is trapped in a cage
I can’t crack it open
Without the jaws of life

I am a fire waiting
For a wisp
Of oxygen

I was an unwanted child
Told I was chosen
Oh what a cruel lie
So many liars
So many lies
But that was the first

I am a question
Asked over and over
Fighting to be heard
Until it surrenders
Masked by the din
Overwritten by louder stories

I should be dead
I should have been dead
Over and over again
But death didnt want me either
I am in so many ways
Redundant
A miracle
A joke

409 AM
I stopped spreading the blankets
Because I was shaking
Because of the razor blades
Under my skin
I must be smooth
as porcelain
I must be fine from the pain
But I cannot stand
For this moment
And probably not the next

I wanted so little
From this day facing me
But all I see ahead
With 415 approaching
is a small pile of ash and bone
The start of a migraine
A remembrance of sky
A skein of yarn
The color of a child’s disappointment

Over there is the roiling sea
I’m about to sink under
Black and thick as a body bag
I was so close to the shore
Please don’t let me sink
I tried to be a foghorn
But it came out a whisper
So you probably won’t hear me

Its 430 AM
530 really
Time change
Time for a change
Fall back

I’m falling backwards
Needing emergency oxygen
I’m afraid the fire
Is about
to go out

-LM
2017