Tuesday, August 16, 2011

One tough act to follow.

I don't have a whole lot to say today. I've been slowly working on doing laundry, and the presentation I've been working on for project narcolepsy.
I've got a lot of things happening in the next 7 days including starting up my fall classes, and my birthday. This shouldn't seem like a big deal, but when you're starting your day with only 3 spoons, and you use those spoons just to move around, and maybe make yourself look presentable. Or at least clean...it's hard to move around even more.

The depakote has made my heart do this real fun heart palpitation thing, and the fatigue is still unreal. I'm not sure if the fatigue is normal, or if it's just tagging along with my narcolepsy.

Either way I have a full physical next Tuesday where they're gonna check my liver to make sure it's working properly, and try to figure out why my resting pulse is over 100 at all times.

One thing I am looking forward to is my ceramics class. I hope my hands have the strength to play with the clay, because I received an email saying we'd be playing with it on the very first day, and to bring a towel. That's what she said.

Mom's pretty freaked out about all of these side effects, but I keep telling her they're all listed under common and some uncommon side effects on the drug fact sheet, and she needs to take the fact that I'm narcoleptic into account. I think she forgets about that sometimes, but today she told me she preferred me manic. Well I didn't. I feel so level now, despite feeling like shit. If I didn't feel like shit I'd feel great. I'm not manic, and I'm a little depressed, but I don't want to break stuff anymore. So to me, epilepsy, or no epilepsy, the depakote has done it's job. It brought me out of my manic/mixed phase, and I'm level. 

Monday, August 15, 2011

Today is not an easy day.

I got woken up at 7:30 by the very loud crash of a branch falling on my roof due to the thunderstorms that have been ripping through my state for the past two days. Before going back to sleep I decided that I was going to check my email and see if anything that was super important was in there.

The first thing I see is "URGENT" and I'm thinking "god damn it" as I forward it off to another member of my committee. She's away, but then I wake up again later, due to another thunderstorm, and see that this URGENT email has been sent to like EVERY email address on the planet. Which causes world-wide panic. I don't have the mental capacity to deal with this.

Today is not an easy day. I have set myself a goal of doing 3 loads of laundry, dried, folded, and put away by the end of the night. My Dad is now coming to pick me up and take me to the grocery store so I can get some foods to eat since I am constantly nauseous, and have little to no interest in eating food, which isn't helping my energy levels.

I took my medicine late, because I couldn't find the strength to sit up in my bed to drink my water or reach my pill case....after I did that I finally decided I needed to get up and get something to eat....I collapsed halfway down the stairs. I didn't fall per say...my knees just gave out and I ended up sitting there, dizzy, and exhausted for about 5 minutes before I forced myself to stand up and continue the rest of the way down the stairs.
Last night was the first night I took the full dose of depakote 750mg. I can say that the dizziness I get has improved, my mania is completely gone, but now I feel angry and depressed. Though I feel like it's situational, and not an uncontrollable thing. I'm angry because without begging I'm reaching out for help, and have received some, for those of you who have offered help I thank you from the bottom of my heart. I feel depressed because I'm currently coming to terms that I might not be able to do any of the things I wanted to do. At least not for a long time. I wanted to return to derby skating in 2013...but if my neurologist is worried that if I get another head injury I could worsen myself, then I might not be allowed to.

If any of my friends know me well enough, they know I wont listen to this advice, but at the same time....I guess I just really have to learn the risks.

I currently take a cocktail of 10 pills per day, and that's cutting out 3 additional ones that I need, but I refuse to take while adjusting to this medicine due to the havoc that they reap on my stomach.

My birthday is in 3 days. I'm afraid the only thing I'll have energy for is going to therapy, and if my friends want to take me to a quiet dinner they can....but I don't even know that I'll have the energy for that.

I want my old life back. I want it back so so bad.

Sunday, August 14, 2011

Lately I've been hard to reach...I been too long on my own.

"In my shoes, just to see
What it's like, to be me
I'll be you, let's trade shoes
Just to see what it'd be like to
Feel your pain, you feel mine
Go inside each others mind
Just to see what we find
Look at shit through each others eyes
But don't let 'em say you ain't beautiful, oh
They can all get fucked.
Just stay true to you
So don't let 'em say you ain't beautiful
Oh, they can all get fucked.
Just stay true to you."
Full Lyrics
Those lyrics are the chorus of Eminem's song "Beautiful" from his Relapse: Refill album.

Today is one of those hard days, it started bad, and it'll end bad too. My parents don't understand what it's like to feel like this, but they'll still throw the "We're tired too!" line at me, and tell me to get over it. People get tired, and everyone has to struggle, blahblahblah. They're right about that, but they're wrong about another thing. Sometimes I wish I was one of those narcoleptics that fell asleep randomly instead of letting people push me to my limit until I crash.

I'm gonna get all metaphorical and shit on ya now.

Sometimes it feels like I'm running on full steam, and at first, I'm fine. My brain and my determination (aka stubbornness due to extreme mania) tells me that I can beat everybody on the planet in a foot race. Watch me, I'm super man! After a few miles of the constant going and going and going I'm slowing down, I'm burning out, and my body is starting to get weary. Suddenly I have 3 people behind me: One runs next to me whispering little evils in my ears, one runs behind me with a whip, and every time I slow down I get another lashing, the third runs in front of me backwards...facing me, taunting me, and telling me that I'm a weakling.
I get a second wind, and my body and brain start running like a cold-hard machine, I lose all emotion, and I'm just going. One foot in front of the other while my mind blanks out. The lashings are numb, the evils are silent whispers in the back of my mind, the taunter has turned into the reason why I'm still going. The evils are pressing me, and I'm trying to catch the taunter so I can take the beaters whip and unleash my frustration on to the world.
They're stronger than me though, aren't they? I realize this and then all of the sudden my face is in the dirt, my knees and elbows are bloody and bruised, my body has given up, my mind has shriveled, and my essence is broken.

Right now, my knees and elbows are bloodied and bruised, and I just spit out a few broken bloody teeth. Tears are streaking my face, but my determination and will to fight is still there in the back of my mind.

I feel defeated, sure, but I'm not done. It's one thing to complain a few times on public sites, social websites like facebook, and twitter, but if it's all you do then people get annoyed with you. Shit, I get annoyed with people who do nothing but complain. It's fucking depressing. Shut up, and change something in your life, make it better.

But let me put it to you this way, about how I feel right now, and I'm praying that it wont last too long, because if it does I'm gonna start crawling in the mud until I run myself ten feet under.

Imagine that one thing you're so passionate about being taken away from you. Not taken away, but more so, you had to make a choice between the thing you're passionate about and your future. There's no physical way to do both things. You pick your future, and now your passion, and your outlet is gone.

Now, imagine a small rubber band that's been turning a larger belt for years and years, and it finally snaps. The large belt stops turning in a controlled pace, and now it's out of control. There's no way to fix that small rubber band, so you have to replace it with a synthetic "new and improved" belt to help control the larger belt. That synthetic belt has different parts involved for it to work properly, and there's gotta be some tweaks and turns and some different oils here and there, twist this knob, turn that dial. Now the larger belt is in control, but it's moving much slower than it did before. Over time the larger belt will adjust to the new level of control, and everything will even out again, but for now that old larger belt is struggling to keep moving.

In non metaphorical terms...the things I was passionate about have been taken from me, but by choice, for my future, my mind snapped and now I'm being chemically altered. Day to day it feels like I am dragging two 50lb weights by my ankles. My knees give out, my head hurts, my heart palpitates, my intestines are giving me complete hell, and all I get all day long is "you can do better, stop faking it."

"Don't let 'em say you ain't beautiful, they can all get fucked, just stay true to you."

Saturday, August 13, 2011

I will never ever let you down.

Here's your warning, what I'm about, and what this blog is going to be discussing.

I turn 24 next Thursday, white, lesbian, female from the suburbs, with more street smarts than book smarts, and more intelligence than self-control. This is my blog, and if you're easily offended by curse words, then I recommend not reading this, ever. Yes, I can execute my feelings perfectly without using curse words, but let me tell you how good it feels to tell the world to go fuck itself when you can barely find the strength to lift your body out of bed in the morning.

I'm a "spoonie" by definition. If you don't know what a spoonie is check out butyoudontlooksick.com and read "The Spoon Theory." While I can't relate to having lupus, I have 1 confirmed invisible disease, and 2 "pending" invisible diseases. I get told "you look fine" on an almost daily basis.

I'm not censoring myself, so Mom, if you find this blog, I'm sorry for not being a proper lady and keeping these things to myself, but it's more important to me to let other people out there who might be suffering like I am, know that they're not alone.

So what are my invisible diseases? I currently have a solid diagnosis of Narcolepsy with Cataplexy. I've suspected that I've been bipolar for years, but never got it really checked out, or was dismissed as just having depression. Why would I talk about the times I feel good? When it was hypomania I was in heaven anyway, but one month ago, I snapped. I lost it harder than I have ever lost it before, and I should have gone to the hospital. I didn't go. I was in full blown psychosis, but I didn't go. Why? I couldn't tell you now. Two weeks after that I find myself in jail for disorderly conduct. Jail is a horrible place, and I never want to go there again. Ever. The sad thing was that I had already set up an appointment to see a psychiatrist for help, but it was still too far off.

Seeing my new psychiatrist and spilling every ounce of my guts onto her floor and into her ears that I could within an hour wasn't easy, but it was enough. After taking my history, and listen to me jump from subject to subject, she told me that she wanted me to see a neurologist because she suspects that I have temporal lobe epilepsy. Stunned, I walked out of her office with two brand new prescriptions clutched tightly in my hand, I felt both relieved, and angry.

In 2004 I had a head injury that caused me to have a memory lapse of 2 years, but does anyone believe me? No. No one believes me. I had "seizure activity" the following week, but the doctors found nothing conclusive and sent me on my way. It blows my mind that from 2004 to 2011 I have been having what fits the exact description of a complex partial seizure, and just thought they were panic attacks, and then thought they were cataplexy attacks...but no, they're fucking seizures.

If nothing shows up on the EEG's and MRI's that I have coming up in the next few months, I'm going to keep pushing for answers, because now I'm educated on the subject. I know that people who have cataplexy attacks don't feel what I feel, and I know that people who have panic attacks don't feel what I feel.

It's unacceptable, but then again, when you can't describe what happens to you, because every single time it happens you black out, and don't recall what happens, how can you explain it to anyone else? More so when you're told that it's just a panic attack, or a cataplexy attack by a doctor, who are you to argue?

I'm currently on Divalproex also known as Valporic Acid also known as Depakote, and am being increased to 750mg per day. This doubles as an anticonvulsant, and a mood stabilizer. I will be reevaluated in the beginning of September to see if I need  higher dose, or if 750mg is okay for the time being. This isn't the only medicine I'm on. I'm also on Clonazepam, also known as Klonopin 1mg at night for sleep. This shit is highly addictive, and your body can get dependent on it, but fuck it. If it's what I need, it's what I need.

Lets back track to the narcolepsy thing, my first spoon taker-awayer. I'm on Concerta 36mg, but with the combination of the other two, I really believe that the concerta is the only thing that's keeping me semi-conscious during the day. It's such a cycle, a pill cycle, and I hate it. I'm on one drug to keep me awake, one to make me sleep, one to make me not want to choke strangers, or have seizures....and the worst part of all of this is that my life has changed so dramatically in the past month beginning to describe it would take forever.

I've always been a fighter, and I've never been a quitter, my determination has gotten me in trouble before. I'll go until I drop. Well, here it is world, I dropped. I crashed and burned, and the best part is that nobody who isn't in constant contact with me knows that I'm struggling so hard.

I want to tell people, but I'm afraid of back lash criticism, I'm afraid  of the stigmas attached to my invisible diseases, and hell....I don't look sick, so I should just suck it up, right?

Let me tell you how much I don't want this:
I'm turning 24 in 4 days, and my best friend is getting married in September.
I used to be a competitive horseback rider. 
I used to be a roller derby girl.
A BMX rider, and a fitness buff.
I can't stand up for longer than 10 minutes right now before my legs give out from under me. 
I can't drink anymore.
I can't party anymore.
If people didn't know I was on so many brain altering drugs they would think that I was beyond fucked up. Tanked. Sloshed. I can't walk straight, I can't talk straight, I can't remember what I was doing 5 seconds ago, or what I was just saying to you mid-sentence. I just put my car keys in the refrigerator, after falling asleep in the grocery store parking lot for 45 minutes because I forgot to take my stimulant this morning.
I can't go to parties without ruining somebody's time, because they're worried about me.
I have to take my medicines at 10:30pm, because if I miss a dose some serious-ass shit might go down.
Hell, the tags just got removed from my car, and my license was taken away because I'm a danger to myself and others on the road.
I'm forced to wear one of those medical ID bracelets where ever I go, which right now is a constant reminder of the things I can't do, the possibilities of things that might happen to me with no warning. A chain locked around my wrist with my medical ailments that could kill me.

Do you know what it feels like to be so tired in the body that it takes every ounce of your energy just to get out of bed, let alone moving around all day to do the things you're expected to do in a regular life? Do you know what it feels like being at the peak of the "youth" of your life, and having to alter your life so dramatically from one month to the next? If you do, I'm sorry you know how it feels. If you don't know...let me tell you, it fucking sucks.

Jail was a terrible experience, but being imprisoned by your own body's limitations is an experience that I can say without any reasonable doubt is one of the worst feelings I've ever had. Learning your body's new psychical and mental limitations when you used to be the energizer bunny is the hardest thing to adapt to.

Mark my words though, I will never let myself down. I do not want to be treated as a fragile, breakable being. I still have dreams, ambitions, and my determination to be successful is still there, but right now...I'm struggling harder than I have ever struggled before.

My friends tell me they miss the old me that used to drink until the point of black out laughter when I would have a bad day at the office, my parents tell me they don't like how I am on these medicines, acquaintances judge me on the daily "I'm tired all the time too, I must have narcolepsy!" "Sometimes I'm sad, and then sometimes I'm happy, I must be bipolar!" However, I don't get jokes for epilepsy, mostly because nobody knows about it yet. Hell, I don't have an official diagnosis, and my parents wont believe it because in 2004 they couldn't find anything wrong.

I'm starting my first full time semester of college classes on August 22nd. I'm an economics major. It ain't gonna be easy, but one thing I am going to do, is help those who are struggling like me. I want people to know that you can raise up, and do what you want to do. If anything, what you need to do. I want to be an inspiration one day. One day I will be an inspiration. I'll write my story in pieces, while I can still remember it. I'm sick of the stigma, and I'm sick of the misunderstanding. I want parents, patients, and fellow spoonies to have hope. To hold onto that hope, and never let it go.

I'm at the end of my rope, but I just tied another knot, and I'm holding on as tight as I can. Thank god for those rock climbing classes I took years ago.