My Journey With:

Hypermobile Ehlers-Danlos Syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Tuesday, January 19, 2016

A Day in The Life: Bipolar Depression and Chronic Pain

As you may know, I've been dealing with a bipolar depressive episode lately. You can read about my recent struggles here and here. If you suspect you have bipolar disorder, you can take a screening quiz with resources here, or to learn more about bipolar, NIMH (National Institute of Mental Health) has a very informative fact sheet about bipolar here.

Me. Sorry about the picture quality
Me. Sorry about the picture quality
Yesterday I decided to write down everything I did, so my readers can get an understanding what  it's like to be disabled with both mental illness and chronic pain.My pain is a lot worse today than it was yesterday. Today I've cried twice already from pain, as my pinched nerve in my neck pain is back, and shooting pain down my right shoulder, arm, and thumb. I plan on going to the doctor for it soon, since it started the first week of December. The fatigue I'm experiencing is incredible, because of my POTS (Postural Orthostatic Tachycardia Syndrome), SAD (Seasonal Affective Disorder), EDS (Ehlers-Danlos Syndrome), and depression. I actually can't get off the couch to go to the bathroom, even talking is hard at times. Right now I'm using every bit of my strength to write this blog. I've been very open about my depression this time. I think it's really important that people with bipolar or depression know that they aren't alone, and others experience the same exact symptoms, even the really scary ones. I want those people to know that they are never alone in this fight. I'm also being so open about my depression because I want people who don't have a mood disorder to understand what monster we're fighting.

This is really hard for me to write, because I am opening up on very personal things, and I realize that some cruel people will think that it's just funny. I'm prepared for that. So, here goes:

7:30 am
     * Take first set of morning meds
     * Strip down and weigh myself, then put clothes back on
7:38 am
     * Back to sleep
12:22 pm
     * Wake up
     * Take second set of morning meds, but only the ones I can take on an empty stomach
     * Get dressed, brush hair, moisturize face
12:54 pm
     * Use my 10,000 lux lightbox, which is the best treatment for SAD
     * Color a little bit in my adult coloring book, but feeling too distracted to color much
1:29 pm
     * Cuddle under blankets on the couch, switching between my Kindle and very old laptop (it still runs Vista)
     * Very upset at the irrational fear that my top row of teeth were going to find out. I have panic attacks over this.
3:15 pm
     * Banana for a late breakfast
4:00 pm
     * Cry for 1st time today over bad memories and self-loathing
4:16 pm
     * Took remaining moring meds (the ones I have to take with food) because I forgot when I ate my banana
4:27 pm
     * Cry for the 2nd time today over sadness and dispare
4:56 pm
     * Cry for the 3rd time today over sadness and self-loathing
4:18 pm
     * Niki and I cuddle each other on the couch, dozing off, waking up, and dozing off again
6:20 pm
     * Stared of in space on the verge of tears until 7:35 pm. I have no memory of that time, my memory goes from Niki on my lap to watching The Office. The time in between that is lost.
7: 35 pm
     * Watching The Office and occasionally messing around on my computer
8:05 pm
     * Dinner (2 pieces whole wheat bread, 2 baked frozen crunchy fish fillets, 1/2 cup baked frozen fried okra, 3 tablespoons ketchup, clementine orange)
8:36 pm
     * From panic attack to bipolar psychosis:
          * Cry for 4th time today because of a panic attack
          * Hallucinated dead fish piled on my desk
          * Convinced I was a hologram and I didn't really exist
          * Cried for 5th time today from fear
12:30 am
     * Washed face, brushed teeth, moisturized face
1:10 am
     * Got out night meds and tomorrow morning's meds for both DH and me
     * Made mistake getting out the meds because it's so hard to think, I gave DH one of my meds he's allergic to, but fortunately he caught the mistake before he swallowed them.
     * DH checked the other meds I got out and found no more problems
1:15 am
     * Took night meds
     * Moisturized face and lips
     * Relaxed with my Kindle in bed
2:30 am
     * Lights out and going to sleep
   
If you'd like to know more about bipolar psychosis, you can learn more here and here, and you can learn about delusions in people with bipolar disorder here.

This was an incredibly hard blog to write, as going public with these symptoms often cause shame. However, I feel a lot less shame than I used to because it's so important to me to spread awareness of bipolar disorder and what it's really like to live with it.

I hope opening up about this will help at least one person. I'm taking a big breath and hitting publish.


Sunday, January 17, 2016

Walls, tears, and masks

"Brand" by April Mansilla
"Brand" by April Mansilla
I feel so alone and scared. I'm not alone, Jim is here in the other room, but inside I feel like I'm cut off from the world behind a wall I can't break through or see through. Behind this wall I'm screaming, and punching it, but it only hurts my hands, there is still no way to get through it or past it. I feel like this depressive episode will never end. It was preceded by a hypomanic episode, and now I'm scared that when this depressive episode leaves then I'll become full on manic. I don't know which I hate more, depression or mania.

Some days I'm afraid reality will unravel and it will just stay that way forever. I'm scared a lot. I feel empty and dark inside, except for the sudden rages of anger and loathing directed at myself. I cry all the time. If I'm not crying from depression and anxiety I'm crying from pain. I wish EDS would leave me alone when I'm battling my bipolar, but it just doesn't work that way.

I'm so cold, and it reminds me of some really bad memories that keep flooding back that I'd much rather stayed way back in the corner of my mind so I don't have to think about it. I don't know what to say to anyone at the moment, except it means a lot that you care. It means a whole lot. 
I'm being much more open with this episode online (not IRL) than ever before, because I want people to know what it's really like to have bipolar. It's not manic pixey funky girl stuff, it's like a heavy, heavy boulder on your chest. They keep adding boulders, but it doesn't kill you, and they just keep adding these heavy boulders. Occasionally they'll take a few off, but it's just a cruel joke, because after that they'll add twice the boulders. You will keep existing this way, the boulders themselves won't kill you, they just make existing hell.

And through it all I fake smile and fake laugh so well that no one who sees me, unless I tell them otherwise, can see through that mask. I've been hiding it so many years I don't even know how to not wear a mask anymore, and it feels unsafe to take it off. So much of my life a mood episode meant I'd be emotionally and verbally abused while I'm at my weakest. So out of necessity I became really good at hiding behind that mask. Now I need help, but I'm just too terrified to let someone really see me (other than Jim) that I can't help but fake laugh. Fake smiles and fake laughter is so easy a part to play that eventually it's just too scary to let anyone see you IRL (and online to an extent) as I really am: alone, cold, depressed, self-loathing, defeated, numb, and crying.

Wednesday, January 13, 2016

The Sound of Silence (Original Version from 1964)

"The Sound of Silence" 

Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

In restless dreams I walked alone
Narrow streets of cobblestone
'Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence

And in the naked light I saw
Ten thousand people maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never shared
No one dared
Disturb the sound of silence

"Fools," said I, "you do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you"
But my words like silent raindrops fell
And echoed in the wells of silence

And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said "The words of the prophets are written on the subway walls
And tenement halls
And whispered in the sound of silence"

Written by Paul Simon

Performed by Simon and Garfunkel



Tuesday, January 5, 2016

My Raw Feelings and Experiences With Bipolar Disorder

I had a hypomanic episode in November, which by late November or early December it turned into a depressive episode. I've been depressed for quite some time. It's only been a few weeks, but it seems like years. Sometimes I'm numb inside, other times I'm drowning in an unbearable dark sadness. I'm having panic attacks a lot, and when my pain is bad it gives me more anxiety than normal, and even more panic attacks. I feel so utterly alone inside. I don't like being awake and conscious. I feel like the world around me is happening like usual and I'm an invisible lost person standing in the thick of it, shouting and waving my arms, while understanding but not understanding how everyone else goes about so normal. DH has been wonderful to me. Some days he's the only person on Earth I'm not irritated with.

Some people don't realize that irritation is also a symptom of depression. A bipolar person being irritable to you when they're depressed doesn't necessarily mean you did anything wrong, and it doesn't necessarily mean they are really angry with you. When you're bipolar and in an episode your world view can get so messed up that it's like looking through a kaleidoscope. It's just as hard for the bipolar person to know how they'll feel in 10 minutes as it is for you to know. If we could control our moods, we would, as no one wants to suffer the roller coaster bipolar disorder takes them on.


I have chosen to be on Geodon for the past eight years, which is an atypical antipsychotic. Most bipolar people I've met have been on an atypical antipsychotic because it also helps stabilize bipolar moods, even though it was invented to help with psychosis in schizophrenia. It also fights bipolar psychosis, something that is still frowned upon for speaking out about. Geodon has the least side effects of all of the atypical antipsychotics. It is weight neutral and has a lower chance of causing diabetes and metabolic syndrome than the other atypical antipsychotics. However it can cause QT prolongation (a heart rhythm problem), and must be taken with a full meal. The chances of QT prolongation increase when taken with certain medications, like benedryl. I've used other medications that controlled certain aspects of my bipolar better, but the side effects were unbearable. Geodon doesn't do a lot for my hallucinations, but it seems to be pretty good at keeping mania and hypomania away. Of course sometimes I'll still get manic (I have bipolar 1) or hypomanic. My medicines don't seem to do as well for my depression. I don't want to go off my anti-depressant, Cymbalta, because it also fights fibromyalgia pain. I'm on Lamictal as a mood stabilizer and for my seizures. Trileptal, another mood stabilizer that I've found helps, also fights seizures, but there are more side effects and you can't take muscle relaxers with it. I also don't know if it will have my seizures under control, and I don't want to mess with my Lamictal now that I finally do have them under control. So, honestly, I have no idea what to do. I see my doctor this week, so I'll obviously be talking to her about it.

People want to hear about these romanticized versions of bipolar, ones that don't exist in real life. Yes, most people with bipolar are gifted artistically, but there is so, so much more to it than that. Bipolar isn't a romantic disorder of intense feelings and a quirky personality. Bipolar is when you find yourself hugging your knees on the floor of the bottom of your closet, because you don't want anyone to hear how loud you are crying. Bipolar is when you max out your credit cards in a month. Bipolar is seeing demons run at you, faces coming out of the wall, and seeing huge bugs everywhere that aren't really there. Bipolar is driving 100 mph down the interstate racing some rednecks you've never met. Bipolar is pain, both mental and physical. Bipolar is when you go to an important function, and you either make a fool out of yourself because you're manic, or you cry through it all because you're depressed. Bipolar is knowing you may never be able to breastfeed because all psychotropic medications are secreted into breast milk. Bipolar is knowing that after giving birth you're at high risk for postpartum psychosis, which is extremely dangerous. Bipolar is not being able to make friends because other people can tell there's something different about you. Bipolar is being told by your mom you "look like a r*tarded person" because you have no facial affect (don't show facial expressions) when you get very, very depressed. Bipolar is constantly having one suicide plan and a back up one, just in case, even when you're doing great and have no plans to die. Bipolar is being asked in public in a loud singsongy voice "Now Amy...did you take your meds today?" Bipolar is knowing all your relatives are talking about you in a bad way for something you can't help. Bipolar means not being taken seriously by doctors because once they hear that diagnosis they attribute every single symptom you have to bipolar and look no further. Bipolar is rapid large amounts of weight gain from medicines, then looking in the mirror and seeing a round face you don't recognize. Bipolar is the shame you feel when people you saw six months ago no longer recognize you from the weight gain. Bipolar is when you've had sex with three strangers that month when you were a virgin the month before. Bipolar is having to not fulfill promises sometimes because you can't rely on your own mind and how you will be psychologically from one moment to the next. Bipolar is experiencing something called a mixed episode, that has elements of both mania and depression, and is very hard to treat. Bipolar is rocking under the desk and crying on your fifth visit to the psych ward because you don't want to be there and the only person who would really talk to you at all got discharged. Bipolar is anger you don't know how to handle, so you turn inside, then punish your body with sharp instruments, followed by severe guilt, embarrassment, shame, and self loathing...for the past twenty-one years. Bipolar is becoming a great actress, so no one on the outside will know there's something broken about you. Bipolar is daytime sleepiness from medications to the point of falling asleep driving, and very often not sleeping at night while you brain races. Bipolar is coming up with the best idea in the whole world, only to realize when the mania is over the idea was just idiotic. Bipolar is that vile thing that took my dreams away. It didn't just take my dreams away, but crushed them, forcing me to find new dreams. These are all just a portion my experiences being bipolar.  It can happen to any gender, and race, any class, anyone. Once you get it then it never goes away. It can be managed. That's what they tell us anyway, and we're supposed to believe it.


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