Wednesday, July 24, 2013

Hypnagogic Sleep & Dreams

While reading the book Left for Dead by Pete Nelson, I discovered the following section of the book on how your body is affected when you don't get enough REM sleep. According to my last sleep study, only 7% of my sleep was REM sleep. I very rarely get restorative, restful sleep. I have never heard of hypnagogic sleep/dreams before reading this book, but it explains very closely (just a bit more severe than mine, obviously!) how my sleep feels to me. 

The book, Left for Dead, was about the sinking of the USS Indianapolis on July 30, 1945. Book description from Amazon.com: "Just after midnight on July 30, 1945, the USS Indianapolis was torpedoed by a Japanese submarine. The ship sank in 14 minutes. More than 1,000 men were thrown into shark-infested waters. Those who survived the fiery sinking—some injured, many without life jackets—struggled to stay afloat in shark-infested waters as they waited for rescue. But the United States Navy did not even know they were missing. The Navy needed a scapegoat for this disaster. So it court-martialed the captain for “hazarding” his ship. The survivors of theIndianapolis knew that their captain was not to blame. For 50 years they worked to clear his name, even after his untimely death. But the navy would not budge—until an 11-year-old boy named Hunter Scott entered the picture. His history fair project on the Indianapolis soon became a crusade to restore the captain’s good name and the honor of the men who served under him."

Lack of REM sleep/Hypnagogic Sleep and Dreams

"Many of the men went 'out of their heads,' to varying degrees, for varying lengths of time, from simple sleep deprivation. Hallucinations, compelling fantasies, obsessive thoughts, uncontrollable fears and emotions, delirium, hopelessness and despair are all expressions of psychic damage, and during sleep is the time when the psyche heals and repairs itself by dreaming. Without sleep, microscopic psychic injuries can rub and chafe and become infected too. 
"It's not just any kind of sleep that the mind needs to repair itself. The deepest sleep we experience, perhaps a dozen times a night, is called Rapid Eye Movement, or REM, sleep. It's also the time when our muscles become totally relaxed, to the point where we can no longer move. REM sleep is absolutely essential to our well-being. In a pioneering study of REM sleep done at Stanford University, rats were deprived of REM sleep when they were placed on an overturned flowerpot in the middle of a bucket of water. The rat being studied could balance on the pot as long as it had muscle tone, even fall asleep, but as soon as it entered REM and lost muscle tone, it fell off the pot and into the water. After a few days, the formerly docile laboratory rats turned into hyperaggressive, psychotic rats that fought with one another and bit the lab workers who were trying to handle them. What happened to the men in the water was similar to what happened to those rats. The men wearing life jackets who tried to sleep found that as soon as they lost muscle tone, their faces would fall forward into the water, waking them up and depriving them of REM sleep.
"When men could doze off (and never for more than a few minutes at a time) they experienced a much lighter, less restorative kind of sleep called hypnagogic sleep. Whereas REM sleep brings with it dreams unrelated to current experience or daily life, hypnagogic dreams at the onset of sleep take place in the borderland between sleep and wakefulness, and correspond more closely to recent events in the subject's life, fusing reality and fantasy. Hypnagogic dreams tend to be primarily visual in quality, hallucinations that seem, to the dreamer, to be quite well organized and internally coherent, bizarre fantasies that nevertheless make perfect sense somehow. They are also dreams we feel we can participate in rather than simply observe. hypnagogic dreams also tend to express a heightened awareness of the body's position or condition, dreams where, for example, if your arm has fallen asleep in bed, you might dream your hand has become encased in concrete and you can't lift it. (Nelson, 79-80)."
Book excerpt from Left for Dead, by Pete Nelson.

Saturday, July 6, 2013

RIP Sgt. Daniel Somers

For information about his suicide, please visit here.

Veteran Daniel Somers came home from Iraq and was diagnosed with fibromyalgia, along with traumatic brain injury, PTSD, Gulf War Syndrome, and other health problems. He committed suicide on June 10, 2013.

From the above link:
"My body has become nothing but a cage, a source of pain and constant problems. The illness I have has caused me pain that not even the strongest medicines could dull, and there is no cure," Somers wrote in his note.
"All day, every day a screaming agony in every nerve ending in my body. It is nothing short of torture. My mind is a wasteland, filled with visions of incredible horror, unceasing depression, and crippling anxiety."
It's so sad that these conditions have not been researched further, but I'm thankful they are paying more attention to them. So much is unknown, so it's so hard to treat the patients!

That quote struck me hard. I feel that way every single day. I've always been bright, with my head always in books... But now I can't focus on anything. I had to drop out of college, 3 semesters away from my BA in Sociology (to do patient advocacy, preferably). I've spent the past three years living in my parents' house, unable to work or go back to school. I'm losing my mind!

I really hope this will help bring attention to conditions that they don't know how to treat correctly...

I'm praying for all of Sgt. Daniel Somers' family and friends. I cannot imagine what you are going through, and that's exactly why I'm still here. I'm scared that things will get to that point for me... Thank you for releasing his note to help bring attention to this!

Sgt. Daniel Somers was a veteran of the Iraq war and completed over 400 combat missions. It's so sad that such a distinguished man and his family had to go through this. I feel the need to link to his suicide note, as it was published with his family's permission.

Stories like this are EXACTLY the reason I want to become a patient advocate and help others who suffer from pain conditions or other conditions that are so hard for healthy people to understand. When I was 14 and diagnosed with fibromyalgia, or 16 and told I was permanently disabled by my doctor, I wish I had someone to talk to that -actually- understood fibromyalgia. I want to help people like that.

Sunday, June 30, 2013

Teas that help fight night terrors & an update!

Hi everyone!

I'm back from staying with my best friend/'sister' and her family in St. Louis for two and a half weeks. I left the morning after the anniversary of my mom's death. I just couldn't handle being in my house... She passed away in our living room, so I can't even sit in there usually.

While I was in St. Louis, my best friend (who used to work for Teavana), introduced me to two different teas from Tea Forté -- Lemon Vervain (also known as Lemon Verbena) and Lemon Lavender. Both of these teas have really helped me sleep!

According to WebMD, Lemon Vervain/Lemon Verbena can help with:
Lemon verbena is a plant. The leaves and the flowering tops are used to make medicine.
Lemon verbena is used for digestive disorders including indigestion, gas, colic,diarrhea, and constipation. It is also used for agitation, joint pain, trouble sleeping (insomnia), asthma, colds, fever, hemorrhoids, varicose veins, skin conditions, and chills.
In foods and manufacturing, lemon verbena is used as an ingredient in herbal teas, as a fragrance in perfumes, and as an ingredient in alcoholic beverages. 
How does it work? 
Lemon verbena contains a substance that might kill mites and bacteria.
It truly has been letting me sleep much better than I have in a long time! Both teas are loose, so you will need a tea infuser or something similar.

If you are planning on trying the tea out (25 servings for $8!), please send me a DM on Twitter or leave a comment here. If you use a referral, we both get a $5 credit to the site! Each account can only recruit 5 people (to limit how much people can make through referrals), but I could really use the credits, since disability still hasn't come through and my dad's work is moving from Illinois to Ohio, so he's trying to find a new job.

Please let me know if you've tried these teas and if they've helped you! I'd much rather drink a cup or two of tea at night rather than take medication -- and I know that this feeling is shared by many spoonies.

In other news, I broke 2,000 followers! I'm in shock! My significant other, Kolton, sent me the link to the BBC article on The Spoon Theory by the ever-so-lovely Christine Miserandino (@bydls), the woman who runs ButYouDontLookSick.com, only moments after it was posted! It seems I broke the story on Twitter -- I've had so many RTs! Thank you all so much for helping me spread the word about The Spoon Theory. As someone who has an invisible illness, The Spoon Theory has helped me explain to my teachers in high school and college about what it is like to live with one.

I'm planning on beginning to start blogging regularly again! Hopefully I can stick to it this time, lol!

Love you all!
SpoonieJen

Wednesday, March 20, 2013

How much longer can I keep trying to pull myself back together again?

Just emailed this to Kolton. Too tired and in way too much pain to edit.


I
 awoke next to the bedroom fire again. My lower half was still wrapped up in a towel, and I was sitting on the edge of one damask-covered chair, bent over at the waist, with my torso draped across a stack of pillows on another damask-covered chair. All I could see was my feet, and someone was applying ointment to my back. It was Marthe, her rough strength clearly distinguishable from Matthew's cool touches. 

"Matthew?" I croaked, swivellimng my head to the side to look for him.
His face appeared. "Yes, my darling?"
"Where did the pain go?"
"It's magic," he said, attempting a lopsided grin for my benefit.
"Morphine," I said slowly, remembering the list of drugs he'd given to Marthe.
"That's what I said. Everyone who has been in pain knows that morphine and magic are the same. Now that you're awake, we're going to wrap you up." blahblah

[Note: Book I'm currently reading and what that is from is 'A Discovery of Witches' by Deborah Harkness)

Basically, she's injured badly and needs recovery from this really bad, physically traumatic thing. The thing about the magic is just the book -- it's on witches and such. 

It made me snap. Then go hysterical. Now numb with a migraine.

Peppy freaked the hell out. He ignored hot toast for 15 minutes, choosing instead to sit with me (knowing about the toast the entire time, exploring it to check what it is and still not eating it because he was this upset over me)

I haven't slept in 24 hours. Blah. Want to crash and hard...

----


Why does this bother me so much? Because pain relief is not a real concept to me. There is no relief. Ever. It doesn't matter the drugs or whatever I'm on, I'm still in physical discomfort from my different ailments. The pain hasn't let up in over ten years. I'm so tired...

Kolton and I are in a bad spot relationship wise because I cannot accept that this pain is there. I can't heal. I'm just broken. I can't put the pieces back together again and I don't know if I ever will be able to. I haven't since they broke, and that was a long, long time ago. Hell, that was before I hit puberty. Jesus.

This is the types of mornings where I question everything. I'm in a really dark place and I know my thundercloud will blow away, but until then, I'm in a bad state. My poor rat, he was huffing and puffing he was so upset he couldn't calm me. He's used to being able to calm me down when I start to actually physically cry, at the very least. I was just flat out hysterical for the first time in his memory -- I got him in July last year and the past couple of times this has happened I haven't been near the rat.

The garbage trucks are making a ton of racket. 

I want to scream. I honestly just might do so.

Monday, September 3, 2012

Pessimistic about being optimistic?

I'm sorry I haven't really blogged. I feel like I apologize every time I write a post (I probably do, lol). Life just never seems to stop being so... hectic. I'm still in mourning and the smallest things set me off. My depression and anxiety have been especially bad, including my night terrors. I seem to be constantly sick, as in fevers, chills, butterfly rashes, itchiness (everywhere!), and nausea and/or throwing up. I sleep all the time. Plus I'm getting multiple migraines daily. Ugh.

Peppy around 1.5 months old~ So cute!
I guess it's just one of those things. I need to go get an MRI done of my right hand and then see the rheumatologist again. It's just so difficult to schedule those types of appointments when I can't drive. My goal for the next year is to get off the heavy meds so I can begin driving again... I mean, if I can drive, I can go to school, work, see friends... The possibilities are endless. Instead I sit at home, do yoga (if I can), watch TV/Netflix/Hulu, and sleep. I see Kolton about once a week, sometimes twice.

In happier news, I have a pet rat! His name is Peppy and he lives next to my couch. Right now he's moving around newspaper and shredding it while chittering loudly. Chittering for rats is like when cats purr. Our two month anniversary was yesterday~ I'm guessing he's about 3 months, maybe 2.5 months old. He is a male dumbo rat. He makes me so very happy. He keeps me sane, haha. It actually really helps, having the responsibility of taking care of him. We kind of take care of each other in a way.

I didn't sleep much last night. I fell asleep right after dinner and then woke up around 1:30 AM. It's now 8:08 AM and I haven't slept since waking up. I think it's going to rain... My legs are aching something fierce.

I'm really trying to be more optimistic and more ... happier? I want to be happy. It's just so damn hard. I'm happy when I'm with Kolton, who I'm supposed to see today~! I'm happy when I can actually relax some and am not in major pain, but that is so rare these past few years. 

I feel so stuck.

Love you all~ Hope to hear from you guys soon!

xoxo,
Jen




Monday, June 11, 2012

RIP Mom

Last night at 8:30 PM my mom passed away. I'm so numb. I don't know what to do. I kept trying to fix things, but she went into a coma so quickly... I just didn't get the chance to finish things...

I'm so upset. I just don't know what to do.

The obituary is going to be posted in the Herald (Chicago -- will link on Twitter) on Tuesday. Wake is on Thursday, Funeral is on Friday.

My mom asked me to sing at her wake or funeral before she went into coma.

Blah...

Tuesday, November 8, 2011

Physical Therapy

Somehow I have made it to my third week of physical therapy! It still exhausts me, but I know I'm getting stronger -- even if it is slowly. After each session I come home and pass out. I never realize how tired I am until I sit down. I'm usually asleep within 10 minutes of getting home.

Today I might paint. I don't know why I want to, but I do. I haven't painted seriously in several years now. I don't know what I want to paint, but I can feel what I want to paint, as odd as that sounds.

Writing is difficult. Lately I have been feeling so very uncertain. It's as though my mind blanks out every time I try to express myself. I haven't been talking to anyone and I've been sleeping constantly (which is mainly due to the physical therapy). Perhaps it's the new medications, but I just don't know.

I'm terrified of this winter. Chicago winters are always rough, but this year is supposed to be worse than last year, which was a rough winter. I'm so nervous... My lupus has been acting up badly, especially as it gets colder at night. My cane wrist and shoulders are driving me crazy, along with my ankles. I mean, a LOT of my joints ache, but not like these. It's overwhelming.

All I have done these past three weeks is sleep, and all I want to do is sleep more. My depression has been getting darker and stormier. At my last doctor's visit I cried a lot and told him I want off the medications that aren't helping. But how can we tell...? I'm gaining weight again from the medicine. I haven't been eating a lot -- although I was before. It's odd. I've always been bigger, but I have never really wanted to eat a lot.

I feel hopeless.