Emotional Lability is not Bipolar Disorder.

One of the things that makes life with multiple sclerosis incredibly difficult for me is emotional lability.

It’s not something I talk a lot about because, well, it doesn’t merit it. Most of the time, I am able to handle myself like a normal human being. It is surprising to me, however, how little information is out there for most of us, and how quickly people are able to jump from, “You have mood swings” to “You have bipolar disorder” when emotional lability comes into play.

What Is Emotional Lability?
Emotional lability, also called Involuntary Emotional Expression Disorder (IEED) or the Pseudobulbar Affect, is a medical condition that causes sudden and unpredictable episodes of crying, laughing or other emotional displays. (You know, like anger or yelling…)

IEED is seen most often following brain injury or in people with dementia, motor neuron disease, and multiple sclerosis. It can appear at any stage of the associated diseases. It is found in 10-20% of people with MS, currently.

IEED is underdiagnosed because the symptoms mimic other clinical emotional disorders, including depression, bipolar disorder, schizophrenia, generalized anxiety disorder, and even epilepsy.

Of the 59% of patients who told a physician about their symptoms, less than half received a diagnosis or treatment, and the diagnosis was most often depression.

Bradley (The doctor who was running the study) said, β€œThis is unfortunate because IEED seriously hampers social interactions and can have a significant deleterious effect on patients’ and their families’ quality of life.”

If that ain’t an understatement, I don’t know what is.

I can personally attest to the world of suck that is Emotional Lability. It has lead me to having crying jags on the bathroom floor of a public restaurant on more than one occasion for reasons that I could not give. It’s lead me to screaming at the top of my lungs at my husband for absolutely no good reason, and I honestly believe it’s got a lot to do with a lot of the confusion and swirling self-hatred I have for my inability to pull myself together and have any kind of momentary self-control and act like an adult while going through strong emotional episodes recently.

Emotional Lability or IEED makes you seem like a crazy person because, for that moment, you *are* a crazy person. You completely lack the capability to control yourself or your emotions. Your brain meats — they do not work the way they should. It’s a physical failure that turns you into a monster or a pathetic freak. I have yet to experience the inappropriate laughter, but I’m sure it’s no less fun being a spectacle from that angle.

Still, it’s good to know that it’s a short circuit. At that point, it puts it squarely in the, “How do we prevent these things from happening, and how do we manage the aftermath?” way of thinking. *sigh*

Just one more part of how MS is *broken*.

http://www.wisegeek.com/what-is-emotional-lability.htm
http://psychcentral.com/lib/2009/involuntary-emotional-expression-disorder/
http://ms.about.com/od/signssymptoms/a/cmp_ieed.htm
http://www.pbainfo.org/patient/living_with_pba/understanding-impact-pba

All sorts of things!

But first something awesome, whose time has long since come, courtesy of The Daily What, I give you,


“Sparkles,” My Little Soldering Pony

What can I say? She makes me laugh. πŸ™‚ And point to her as an argument for intelligent design. πŸ™‚

First thing’s first! Medicare.
*in a Movie Announcer-Guy Voice* Coming soon to a disabled me (not necessarily near you): Medicare A (hospital insurance) & B (medical insurance) in March 2011! :)*end movie voice* That’s only 3 months away!

What’s the significance of March? Well, March of 2009 is when I applied for Social Security. For whatever reason, that’s what’s determinative for when you become eligible for Medicare! 24 months after the date of application. Not when you became disabled, not when you started getting aid, but when you applied. Good to know! (Though I’m not sure why. Probably for the book.)

I’ve also put in for extra help with prescription drug costs. Hopefully, that will come through. I can’t see why it wouldn’t, especially when they mailed me the form. Usually when the government does something like that, it’s a hint. πŸ™‚

Ok, maybe the gubment’s not always tryin to fuck you. There’s just a system in place, and I have no idea how it works, so I’m panicking like anyone would when they’re entirely out of control of damn near every aspect of their life that used to make them feel like who they are.

That is very good news, if you ask me, since my current insurance is on the order of $400/month, which doesn’t include the $230 or so that I have in prescription copays after that. $630 is how much of the $758 that SSDI gives me on the 4th Wednesday of the month? Medicare could make a very big difference for us. I’m not sure if it’s meant to replace my current insurance or supplement it. I’m going to need to read up and learn about it.

What I really need to do is figure out how to make whatever the figure of money is that you’re allowed to make while you’re disabled without losing disability, while being disabled. Because it is just not cheap to live, not for anyone, really. AND I also need to learn how to make what money we DO have stretch as far as it possibly can.

Money, Money, Money, Money…Money!
Ok, so one of the things that I’m doing that I thought would be helpful is clipping coupons from the Sunday paper and figuring out where to shop using those coupons, but that’s only marginally helpful unless you’re going to be buying in bulk and stocking up on things. And I wonder for a couple, how much sense it makes to buy in bulk.

Another way I’ve thought about saving money is using dried beans instead of canned beans, when beans come into play at all. I love that site. It has so many great ways to use your crock pot to save money. (Did you know that your crockpot can double as a rice cooker? I didn’t either! But I’m stoked about it for Thanksgiving!)

I love sites like Money Saving Mom and Real Simple, so I’ve set out to learn what I can from them, and sit down and do the hard work.

Adam has been doing a lot of work looking at Android apps that might make grocery shopping and whatnot easier for us. I know there are a lot of coupon apps too.

I wonder – do you all have any suggestions of websites or apps that make you feel more competent as a homemaker, or as an adult — that help you organize or help you get better deals or whatever?

Oh Yeah, I’m on the Drips too.
So, Nurse Debbie came out yesterday for day 1 of 3 yesterday and I got to log on to Facebook to show her wedding pictures. πŸ™‚ That was pretty awesome. I’m tellin you, even without the professional shots, which I’m certain are fantabulous (and have been promised to us in the requisite 6 weeks after the event which is ohmygahsonotsoonenough,right?), between cargile24 and rawee1, we practically have a wedding album online already on Facebook at least. It’s my goal to have a gallery of the good shots up on http://www.rachael-and-adam.com by time for the holidays, along with the video of our first dance and some other goodies. πŸ™‚

This go round of the infusions has me very awake. I woke up with a tension headache at 6 am, so I came down here to check email and vaporize in the hopes of getting back to sleep. It’s 8:08 now. We can see how well that worked out. πŸ™‚ Ah well, 6 am’s not too terribly early though, so at least I got some sleep! I’m seriously on the edge of panicky, and am having extra muscle tension. Fortunately, with the extra energy, I ought to be able to do yoga. I’ll just have to text the nurse beforehand to make sure it’s ok to do w/ the IV still in.

I hope you’re all having a very happy Thursday. It’s 11/11! Make a wish! πŸ˜‰

Relapse? Or just a few bad days?

If there’s one thing I truly despise about my condition, it’s not knowing whether or not I’m having pseudoexacerbations or an actual exacerbation of my condition.

Pseudoexacerbations are just like exacerbations or relapses, but tend to last 24 hours or less and are triggered by your body fighting off an infection or healing from something non-MS related. And yes, it is possible to have one pseudoexacerbation after another for several days, which mimics an actual exacerbation.

This makes it very difficult to know whether or not I need to call Dr. G and say, “Hey! I think I need an IV-SM drip.”

I have had terrible sleep for the last several nights, littered with nightmares. This has lead to days with more seizures than normal because adequate sleep is required to have days that are primarily seizure-free. Last night was no exception. In fact, Adam let me know that he was up with me most of the night and that I’ve been both talking and having seizures in my sleep.

This is very not good. If I can’t sleep, seizures will eat me. Ok, that’s a little dramatic, but I think you get my point. Sleep, real good sleep is necessary, or the seizures just keep getting more frequent and longer. Seizing hard enough during sleep that I wake the person next to me, when I’m on a memory foam mattress, despite being on the right dose of meds, leads me to believe that either a.)I have some other illness of which I am completely unaware, or b.)I’m having an MS flare.

GRAWR!!! I’m supposed to go to Berkeley this weekend to visit abitbattyhere and mgnficntbastard!!! WTF, body!?! I HAVE JUST STARTED GETTING A LIFE! I HAVE GUITAR LESSONS ON WEDNESDAY. I ALREADY MISSED LAST WEEK BECAUSE OF SEIZURES!

Fuck. I already missed last week because of seizures. I’ve already waited a week.

I remember this game. When we wait and see, we wait and see me get worse until I’m seizing all the time and I finally give in when I can’t do anything at all because my optimism holds out until I’m hospitalized.

I’m already hurting from the moment I wake up until I go to sleep almost, even with the extra meds. I’ve stopped vaporizing weed to make me feel better unless I’m hurting to the point that I’m either crying or about to start crying, because I’ve stopped seeing the point, and I’ve started feeling suicidal again… like all of this is pointless and like I’m a cursed creature that for whatever reason, God hates.

Yeah. *sigh* It might be time for the drips.

Great Googly Moogly do I miss Social Networking!

one week.

I can’t believe it’s been one week without social media. It seems like longer. It’s made me realize several things.

#1 – I do not miss discussing politics, and my choice to keep myself largely ignorant of the goings on of the world and the news during law school to focus on work was very wise.

I spend an inordinate amount of time engaging in discussions that upset me because I hope to change people’s minds or to bring knowledge about egregious wrongs going on in the world to people that I hope will take action against it. I feel that because they’re my friends, who are very good people and who want good things for themselves, for me, and for the country (and I do know that they care about my situation and that they are good people) that I can make a difference in our country or in our world in general.

I am wrong about that, I think.

Or, more accurately, I think that the payoff is not worth the level of upset that I find myself consistently mired in.

I far too keenly feel the sting of perceived injustice at the hand of others, and far too easily place myself in the victim’s shoes. My capability for compassion is stronger than it might ought to be, and my desire for what I perceive as justice is certainly too strong.

There is enough going on in my life to focus on without spending my energies on the struggles of strangers. While I may somehow “make a difference” by discussing it, it is unclear to me that it is a positive one in the world or in the world of those strangers, or even in my life by focusing on those struggles. Raging against injustice is just that. Rage. I’m not sure how it’s constructive or helpful to anyone anymore than watching people yell at each other on TV. It’s an exercise in getting myself (and others) upset.

Righteous indignation without action is, in my estimation, emotional masturbation. Getting angry to no good purpose. And I’ve been doing it a lot. Social media breeds it. Let’s all get good and upset and talk about it… and do nothing but console ourselves about how right we are.

Don’t get me wrong. There is a need to vent. There is a time and a place. Perhaps Social Media is that time and place! And maybe I was just spending too much time there.

#2 – I direly miss knowing what’s going on with the people I care about, and Facebook had become my only means of communication with 99% of the people I care about. That is all kinds of messed up.

I’m starting to make new friends! I’ve already met a couple of folks who live in my apartment building. Did you know I have neighbors? Well, it’s true. πŸ™‚ And they don’t hardly suck at all, so far as I can tell! πŸ™‚

And my phone works! And so does my email! AND I CAN SEE PEOPLE IN REAL LIFE. Insane, I know.

But it also let me know that people totally take for granted that I’m going to post my whole life online, and so people don’t try to contact me. The thing that kinda sucks about that, is that I’m not offput by that. I still am kind of phone-shy. I miss having emails to answer. I miss being in on conversations. All I get mostly is spam right now.

It weirds me out that I’m not getting emails or texts from folks to say hi. I figured people would miss me, but they don’t really, or if they do, it’s after I contact them. So, I’m not the only social media addict out there. πŸ™‚ It’s easy to do!

#3 – I get my news from my friends! THEY HAVE THE BEST SOURCES!
I totally had to think of what sites to visit to get my news after I stopped going to Facebook first thing in the morning. I was like, “Ok, who has the best news, and when I read the news from my friends, what site does it send me to?”

Prior to Social Media, I never would have checked out sites like Gizmodo or The Huffington Post. Would you miss reading articles like this? The 5 Questions You Hate Not Knowing the Answer to by Rainn Wilson (The Guy Who Plays Dwight Shrute on The Office).

But today is Sunday, which means I get some of the ORIGINAL Social Media coming to my door, courtesy of the lovely April M., who gifted us a year’s supply of the LA Times for our wedding. (Thanks again, April!!!)

Time to toast a bagel, pour some coffee, and honor Grandma by clippin some coupons like I do every week. πŸ™‚

Hope everyone has a happy Sunday and enjoys the time change! An extra hour of sleep is good for everybody! πŸ™‚

Making room for wellness.

On November 1st, I made the commitment to Adam to spend a full month off of Social Media. We got to talking about it, and In It For The Parking is the only exception to the rule because it serves several very necessary purposes in my life*.

For the last several years of my life, I have been primarily couch-locked, due to seizures. Due to that fact, I have spent an inordinate amount of time on my computer. My beautiful, sweet, lovely laptop… window to the world. It has actually gotten to the point that I don’t call people anymore. When I do talk to folks, I assume they’ve read my blog or my Facebook if it’s about something going on in my life, because – let’s face it, not much goes on in my life, it feels like.

When it gets to the point that you’re saying to your husband, “Hey, I wrote a blog entry. I’d like you to read it.” and he wants you to talk to him about it, and you really would rather him read it because it’s too hard to talk like a normal human being, you’ve got issues.

Truth be told, I’ve been both clamming up and lashing out for some time now. And when I see therapists, it’s kind of a joke. I can tell them stuff that’s gone on, but what’s an hour? Where do you go from there, but home with an open festering wound that you and your family has to deal with…on top of everything else that is already going on. It’s like I go in and pick at infected emotional scabs and then have seizures that send me right back into those moments.

Dr. M says these particular seizures are actually flashbacks. We’re supposed to start working with EMDR at the next session to see if that helps. I’m hopeful, but I’d be lying if I said I’m looking forward to it. Then again, anything that makes this better is worth it.

Which brings us back to why I’m spending 1 month completely off of Social Media (and why I will only be posting here and not checking my friends page and using all the awesome features that Live Journal has to offer).

Recently, a couple of things happened that had ABSOLUTELY NO BEARING on my life whatsoever. The marriage of a good friend of mine ended within its first year, and another close friend’s long-term relationship ended. Of course, I found this out over Facebook. And yet, because Facebook has become my only social outlet, it profoundly affected me — to the point that I picked a fight with Adam over things that made no sense at all.

Adam asked me to take some time off, and I agreed. I got to thinking about it… about how out of proportion my emotions were, how frightened I was that the same thing would happen to us… I have lost my grip on reality here.

I’ve spent so much time trying to ignore the pain that my body is in, or the fears that I have regarding whatever is going on in my life by just socializing on Facebook and surfing the net that I have forgotten how to behave like a normal human being, and I’ve forgotten that I’m doing better. I’m not having seizures all the time! It just might be time to get my lazy booty up.

Woe be it to me when I grow enough as a person to go a week without a computer. *lol* Hopefully by then I’ll have children to entertain me. πŸ™‚

I chose a husband well!

He’s challenging me to find other ways to spend my time — and in doing so, I have a feeling I might become a better guitarist. I’ll definitely write more on the book. And, because I’m definitely going to vote in a minute (VOTE YES ON PROP 19!!!), I will probably even leave the couch. πŸ™‚

—–

* – Writing here allows me freedom to journal my experience with seizures and MS. It allows me to feel as though I may be helping others who suffer with seizure disorder or MS or both to feel as though what they go through, they do not go through alone, and it proves to me, each time that I make an entry, that I exist. I make a difference just by being here.