Diary of an Epileptic

[Bernard]

Elaine, your passionate objection to the use of the word epileptic has been duly noted. Discussions about the use of the word and whether it's offensive or not happen from time to time and the subject should be confined to those threads (like this one). In this case, a PM would have been more appropriate than a IMO.

I'd like to caution everyone that we should all try to be as respectful to one another as we can here.

[Deb12345]

Rae, when do you get your results back from your MRI? I hope they come back ok. I find what you are doing is very interesting and will help people to understand the life of an epileptic (person with epilepsy) and help people with epilepsy to know they are not alone. Please keep up the good work. You are a kind and inspirational person.
I hope you are having a good day.
Take Care
Debbie


Might have a MackeyD's later. lol

[epileric]

I should have mentioned earlier that when I got an MRI they let me bring a CD in & it was piped into the MRI Machine. In case I didn't bring one they had a list of music genres in the change room that I could choose from.

Next time (assuming there is a next time) you should ask if you can bring a CD to help your stress levels. I also found that focusing on the mirror to see out helped.

[Rae1889]

I get my results of the 5th of Feb. When I see my neurologist next.


Eric, they let you listen to stuff! And you were allowed to see things?! They basically blinded me to make me not blink so much. And it sucked. You should see the bruise on my arm from the IV! Ick.

Last night I partied a bit hard, and realized that I haven't taken my meds yesterday morning. Or this morning. So I'm totally missing a lot of dosage right now. Plus I have a super hang over. So people reading, as much as everyone tells you to be regular with your meds and not to drink in large amounts *or drink at all* listen to them. I know I will keep doing this until I have a tonic clonic from it and I'm sure that will teach me a lesson. No seizures so far, so I'm still on my winning streak.

I'm not sure I'm being a very good influence but I hope that my mistakes can make people chose to not do them.

So far on that list is No McDonald's, No alcohol or other drugs, No missing pills, and No staying up until 4am.... Got that kids? Lol the little song rings true, "don't you put it in your mouth uh uh!"

[Rae1889]

Alright, so still trying to shake that hangover. Got up at about 1pm today. feel like some major doody.

I have until wednesday until I am at 3 weeks with no seizures. thats pretty freaking high up in my books. I dont remember that actually happening in so long. I kind of miss it.

I'm just waiting for the day where I wake up and have not a single simple partial, complex partial, jerk or tonic clonic for 3 days. that would be a fantastic day.

Further to the above post, I missed friday's morning dose, but took the evening dose. Yesterday I again missed my morning dose, and this morning I realized that I also missed my evening dose. So no meds at all yesterday is probably contributing to the poopy feeling right now. I even forgot them this morning and instead of taking them at 9am , i took them at 11am.

I don't know why I always forget my meds. I rarely ever remember to take them at 9 and 9. usually its whenever I get up in the morning, and when ever i remember to take them at night/before bed.

I don't know if its an "I dont care" attitude, or a "do I have to" attitude or if its just the fact that I just really dont want to completely accept that I'll need to take these forever. and ever. if I dont take meds, i'll be controlled by diet, but I think I am resisting the fact that I will, either way, need to change my life style for teh rest of my life. I think I'm trying to hold on to doing things my way, on my terms. "i'll eat what I want, when I want. Drink what I want, when I want and how much I want. I'll take my meds when I want to, and if I want to. I'll stay up as late as I want,and do whatever I want. I'll stand in front of a flashing set of lights if I want to" I know that all of these things have brought on a seizure at some point. But I also think that my mind and hopes tell me otherwise "maybe it'll be different this time. Maybe I won't seize. Myabe I'll try it to be sure"

I dont think this is a very good outlook on life with E. But this is MY outlook. This is how I cope and how I take it in stride. I don't really care about having E. It bugs me how my body is on a cycle mode. Eat, Sleep, Seize, Repeat. But I dont think its the seizures themselves that bugs me. Maybe its how I feel after. Maybe its how Chad feels and loks after watching me. Maybe its the embarrasment of having them in front of my friends. Maybe its that I know that I'd rather be the one to seize as opposed to anyone else.

Maybe its that I am afraid to show that it upsets me. Maybe I'm lying to myself too.

[Nakamova]

I know what you mean -- often it's not the actual seizures that bother me or the painful aftermath, it's the fact that they happened in the first place.

[Rae1889]

This is like a cruel game of hide and seek. You'll never know when it will decide to find you and pick on you for not doing a better job of hiding

[Nakamova]

Well said.

[RobinN]

Rebecca use to forget meds, she also made the stupid choice to take a few too many once. She was sick of the situation and didn't care anymore. It was a wake up call to me that she was not a good candidate for meds. Wish the two of you could sit and have a chat about where you find yourselves. Now she does have regrets that she can't eat like her friends do. There is s grieving process that one has to go through.

[Rae1889]

Well She can PM me anytime she wants, but if she wants to text I'll PM you my cell number *providing she has a cell phone* If not, I'm always on MSN.

[Rae1889]

Today is the 3 week mark of NO TONIC CLONICS!

I still have had a few complex partials, and some auras, but the jerks have reduced significantly. Last night I had a pretty big "fit" of myoclonics. Almost like constant random shivers that moved my should and then my leg and then my tummy/back. all on my left side although a few moved to my right, which scared me as I thought that this would totally generalize or worsen to the point where i would have a tonic clonic

luckily not.

hooray for me

[epileric]

I think I"ve mentioned this before but when you feel a partial seizure, a neurologist taught me to start counting backwards by 2's starting at 99. If you're like me you won't get far but just the act of trying to focus your brain on doing such a task takes away the momentum of the seizure.

Sometimes doing that has turned what I thought was going to be a big seizure into a smaller one, other times the partial seizure was still pretty big but there was almost no post-ictal effect despite the seizures intensity.

[Rae1889]

Yeah, that seems to do the same thing. Although I dont count, Chad talks to me and asks me questions where I need to think. like "what's 6 times 6?" and I'll answer. usually takes s second to find the answer somewhere in my brain, but it works. just random questions. how old are you? what's our postal code?

I think this has happened because I stuck pretty firmly to the gluten free, my meds (although sporadic) and a fairly good sleep schedule. I still drink occasionally, but now that I found non-alcoholic wine, I can taste it without the effects.

[Nakamova]

Congrats Rae, that's awesome!

I've sometimes found that deliberate movements that use both sides of the body -- like clapping my hands or drumming -- have [maybe] helped ward off or cut short a seizure. Don't know if that would work for myoclonics or not.

[Rae1889]

LOL. maybe. although I do think it might be hard to clap with both hands when one hand jerks the opposit direction or something. lol Walking sucks alot when my leg decides to "dance"

[occb]

Should we officially designate January 27 the anniversary of the tonic clonic-Free Three? You can have a reason to celebrate every January 27th

[Rae1889]

lol, I think I might wait to start my anniversary until Feb 6th. then its been a month. which will be nice.

[occb]

Yeah, but month doesn't rhyme

[epileric]

Yeah, but month doesn't rhyme

Free of Tonic-Clonic for four more (weeks).

[seizingbeauty]

When I need to "distract" myself, we play a game called Alphabet, pick a topic, we usually go really basic like animals, and start with A, name something that begins with that letter, the next person has to name somethng begins with the last letter of the word before such as Aardvark, Kangaroo, Octopus etc..