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Name: Mandy
Birthday: 7/8/1990
Gender: Female


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Member Since: 12/5/2006

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Tuesday, May 08, 2012

What to do when you see me seize

If you really are too lazy to read this, there is a tl;dr at the bottom. (And yes, this was posted as a FB note)

Now, the people who really need to see this (i.e. the people who I hang around with a lot and therefore have seen me seize a lot) will already know to calm down, to not call an ambulance, to find my cushion bag and cushion my head. Some of you will remember the shoulder thing that stopped me seizing. Of those who remember this technique, most of you will also know that it no longer works.

Enter the new Chinese doc.

She found a new technique to stop me seizing. I hereby christen it "The Foot Thing".

NOTE: THIS METHOD ONLY WORKS ON ME! IF YOU SEE SOMEONE ELSE SEIZING, DO NOT DO THIS TO THEM!

It's important to remember that my case is strange and weird and wonderful and all that so the normal first aid stuff does not apply to me. The Foot Thing will do nothing for an epileptic.

 

To do The Foot Thing, simply follow the following steps: 

1. Assuming that you've already ensured that I am not methodically beating my brains out onto the concrete, take my shoe off. Either foot will work. If you cannot do this step safely without my kicking you in the face, abort mission. I would rather seize than feel guilt every time I saw your broken face. Remember, it's just another seizure, it is no big deal (no sarcasm here!).

2. So now that you've taken my shoe off, with your nose intact, take my sock off. Again, your face comes first.

3. You should be looking at this. Note that this is not my foot. My foot is, like the rest of me, so hot that to upload a photo of it would cause your computer screens to incinerate.

 

4. Imagine a line from my ankle to the tip of my heel (indicated by red line). Given that I may be thrashing about, this may be difficult. Then, identify the midway point (indicated by black star). On my left foot, I have a scar that goes along my foot. The intersect of this scar with the imaginary red line will be it. On my right foot there is no such scar so you'll just have to guesstimate.

 

 5. With your thumb on this point, and your pointer (or middle finger, whichever is the stronger) on the corresponding point on the other side of my foot, squeeze the life out of me. Keep squeezing until I stop seizing.

 6. Bask in the success of having stopped a seizure.

 

Frequently Asked Questions (some haven't been asked yet but I'm preempting):

Q: But won't it hurt you?
A: Yes. I may or may not scream. It's fine, just do it.

Q: But I can't stand the thought of causing you pain!
A: Aww. It's ok. I love you too. In this case, you have two choices. Just let me seize it out, which is totally fine. Second choice is to find someone who hates me enough to do it.

Q: How hard do I need to squeeze?
A: Hard. Really hard. I can't do it myself because I'm a wimp and I stop when it hurts too much.

Q: What's the science behind this?
A: I have no idea. As wonderful as my chinese doc is, we have enough problems communicating (she speaks Mandarin, I speak English.) All I know is that it's a pressure point, it works and there aren't any side effects.

Q: But it's psychological! It's all in your head! Mind over matter! You just need the willpower to stop this!
A: You may want to leave my presence before you lose your head. 

Q: So.... you're giving us permission to hurt you?
A: Do this when I'm not seizing without my permission and I'll hurt you.

Q: Will this work forever?
A: I got no idea. I'll take what I can get for how long I can get it.

Q: I don't want to do this.
A: It's ok. You don't have to. It's fine to let me seize.

Q: Your feet stink.
A: Um. *crickets chirping, awkward turtle*

Q: Why. Can't. I. Take. Your. Shoe. Off.
A: Hey, it's fine, don't worry about it. We're getting into winter now and my toenails turn purple when it's cold so I can't wear sandals anymore unfortunately. Like I said earlier, if you can take my shoe off, great. If you can't, just keep me safe.

Q: Is it better to use this method or to let you seize it out if it hurts you?
A: This method, particularly if I've already had three or more that day. Lately I've found that after I seize, my muscles get quite sore and stiff. I hate to admit it, but I'm getting old.

Q: I've heard that you can handle flashes now. Is that true?
A: YES! A good 99% of flashes don't affect me anymore! So there is no need to worry about cameras around me. =)

Q: So, we can flash you now?
A: What kind of flashing are we talking about? Cameras and lights, yes. Other flashing, aw heck no!

Q: I've heard that you get dizzy now. What's up with that?
A: I got no idea. For some of my seizures, I'll suddenly just get really dizzy, stack it then seize. So if I'm on the stairs and this happens, this is problematic and I haven't really thought of a way to get around this seeing as it comes so suddenly. If you see me falling on the stairs, try to catch me hopefully? Otherwise just treat it like normal - it's just an unpleasant precursor for me, but as usual, I'm still conscious.


TL;DR

If you see me seize and my head is safe, squeeze the heck out of my ankle/heel. If you don't feel confident/comfortable doing so, just make sure my head is safe and let me seize. And you can camera flash me now.


Thursday, January 19, 2012

You coward

This fear, this trepidation has its grip on my throat. It swings me around so I'm dizzy and unable to stand.

An issue, that really shouldn't have been nearly as big a problem as it was in my mind, was finally resolved last night. An issue that did not need to be twisted so out of control were it not for my cowardice. It took almost a month, but finally, it's over.

I don't know what to say. I don't know why it affected me so badly. The very idea of it made me want to hide under my desk and cry. The idea of just talking about it had me signing off of everything online and turning my phone off so that I couldn't be contacted. I knew I wasn't being fair, that I was being childish and a coward. But I couldn't deal with it.

As it turns out, nothing had to be said. I didn't need to explain. And now, the relief I'm experiencing is unbelievable. Who would have thought that this had weighed so heavily on me?

I've given up on my goal of not seizing by March. It's impossible. There's no way it can be done. I don't know what I was thinking. I guess I wasn't.

Church has been difficult. So very difficult. Perhaps it's stuffiness and humidity. I feel like when I go to church now, I'm just asking to seize. But I suppose that's how I felt about uni and CBS talks at uni every semester. Should I continue going to church? I've had bad spells like this before, so I guess I should just wait for this lot to pass. But Mandy, that doesn't answer the question.

Well, it's the right thing to do, right? To continue, to meet and encourage other people through example, to persevere? Next question - is anyone actually being encouraged? Because if no one is then I'm putting myself through this for nothing. It hurts. It's not like I can actually hear the talk. In fact, I'm preventing other people from hearing the talk. I go to church, I run out, seize, go back in, run out again, seize, go back in, and the third or fourth time I probably have to be carried out. But I really do feel like I'm fine, like I'm done seizing when I go back in. And then it happens again.

Some part of me feels like I should go take a long walk off a short pier for being so weak. What happened to mind over matter, hm? You gave up on your goal so easily with about a month and a half to go. You refused to talk to someone for almost a month to avoid talk of training. What is this? Avoiding your problems? Aren't you usually one to face problems head on? Talking of not going to church anymore? It's not even the end of the first month, and what have you learned so far this year? What have you learned Mandy? That I'm a weak, cowardly disappointment who can't do anything right. That's what I've learned this year.


Friday, November 25, 2011

I AM EMPLOYED!!!!!!!!!!!!!

Haven't had a chance to tell them about the seizures though, cuz it was a group interview and they emailed me to tell me I got the job rather than calling. So I emailed and left a message on their answering machine for them to call me back. Should be fine though =)

SQUEEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Tuesday, November 15, 2011

Forgot....

... to do the usual end of semester post. I got through my exams perfectly fine. Apart from the study bit but

Trolled a friend (awesome troll if I say so myself ) when she handed her Facebook account over to me until she'd finished her assignments. Trololololol Shaz

I don't think she'll be giving me her Facebook account ever again. </3

Been about a week and a bit since I last seized. One doc said that if this week goes well then we could cut my appointments down to one a week!

I think it would be good to find a summer job. Yeah....

I need to remember that my personality is strong, forceful, powerful and may need to be reigned in at times. What can I say? I'm too stubborn and willful. Maybe I should learn to not act strong. I don't think I'm putting this in words right.

But that's ok. I know what I mean and that's all that matters.


Sunday, October 02, 2011

Pedro Bach-y-Rita

It was quite an interesting week I had this week, aside from prepping for a tute presentation or staying up till 5 to work on a marketing report.

On Tuesday I seized twice. On Wednesday I held off a seizure till the end of the presentation, walked to ASB128 and seized there. After the first bout was over and after a few minutes' respite, a second wave hit. I was lying on the ground with a few friends holding me down, attempting to keep me still as I began shaking again. I told them twice to let me go and as soon as they did, I forced myself to my hands and knees, crawled around and wrestled the seizure off before dropping back to the ground in exhaustion. Sure, I was tired. But I fought it off.

On the Thursday there was a CBS talk. This whole semester (it is now the beginning of Week 11) I've been seizing every single time at the weekly talks. The Thursday before last, after I seized, I snapped and declared that I would make it through at least one talk before the semester ended. I was angry. And so last Thursday, I did not seize, much to my delight and the surprise of everyone around me.

I decided that I needed to snap and get pissed off more often.

After the talk I had a tute and chatted with the tutor afterwards seeing as it was the last actual tute for this subject. He introduced me to the concept of neuro-plasticity, where your thoughts change the structure and functioning of the brain through the forming of new connections between neurons (or something. Science confuses me so much).

It made me realise two things:

1) I had always thought that if I could fight seizures off, it was proof that they were psychological. Neuro-plasticity is saying that my fighting it isn't necessarily proof that it's psychological, but it's a psychological cure for what could be a physical or a psychological problem. That means I don't have to feel bad about fighting or not fighting it off. It might be a way through but it doesn't prove anything about me.

2) Just two weeks ago I was feeling discouraged, thinking that there was no point in fighting them off because in the event that I could fight them off, the exhaustion would have me flattened anyway. But now that I know about neuro-plasticity, fighting seizures could be how I'm re-routing my brain, if you will. I believe that I kept seizing in CBS because I'd conditioned myself to be fearful. By fighting seizures, I am conditioning myself to not seize or to not be overcome by them. Or something. So regardless of how tired I feel after, regardless of whether I win or lose, I must keep fighting.

Over the last two or so days I did more research on neuro-plasticity and learned of Pedro Bach-y-Rita. In his mid to late 60's, he suffered a stroke that left him unable to walk or talk. Through training, he was able to return to work and remarry a short three years later. He died while he was mountain climbing of a heart attack, not a stroke. There was an autopsy done on him and they found that his brain tissue was dead from the stroke, and despite this dead brain tissue, he was still able to return to an absolutely normal life despite doctors saying he couldn't ever walk or talk again.

I'm 21. My brain tissue isn't dead. If there's damage, it is only minor. I have been unknowingly using my thought processes to improve the seizures since early this year. Now I have a direction, a goal in sight and I can get there. My friends are behind me, they will help me through, train me, push me on.

It took Pedro Bach-y-Rita three years to go from not walking, not talking, to walking, talking and bloody mountain climbing. Now I won't be going mountain climbing because I ceebs climbing mountains (heck, I can't even stand bushwalking), but I sure as hell will go from seizing to not seizing. And I will do it in six months. I will go to MYC without the grief that seizures gave me, I will go to MYC free of fear and learn from God's word and not be a burden on anybody and my friends will not have to constantly look after me. The year after next I will be learning to drive. But this time next year I will be completely seizure free.

This is my declaration of war against you. You've had your way for far too long. This is the beginning of the end for you. I will stamp you out. Completely.

I will beat you.



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