Its been four years

I have almost forgotten it and that is a good thing. I forgot it last Friday, on 1st April. I only remembered it later on during the day.

Yes, it is four years ago now since that awful April Fool’s Day. The day when I had 3 seizures in a day. It still spooks me to think about it and it spooks me even more not to be able to remember much about it. I just remember wearing a yellow towel about to have a shower. I bend down to switch on the little red  radio that daddy gave to me when I was 15. That was in the morning or afternoon I am not sure. The next thing I knew, it was night and I was getting into a car, then I remember the medical officer at the hospital asking me some questions. Horribly spooky. As if abducted by aliens or a walking zombie or something like that. Horrible to lose one’s memory even if only for a day. I can’t imagine how dad with dementia must be feeling.

Husband, sisters and children filled me in with the rest of the lost memory of that day. Husband said, I let out a loud scream, then children said I walked backwards and fell on the floor right in front of where they were playing.  (They were only 3 and 5 then. How scarry it must have been to see mummy in a seizure. Sigh.) Thats where I had the first fit. Then husband said he went out jogging and I called him to come home. (but I don’t remember calling him) He said I told him that my girl said it had happened again. 2nd fit. I had another one later on in the day and a decision was made to send me to hospital.

Sisters came and they said I was able to pack my clothes myself. I even spoke to them but my voice sounded strange, sort of squeaky like. I can’t remember any of it. Oh the horrible memory of it or perhaps it should be the non-memory of it. I am all right now. At one time I was so scared to remember, I even gave away that precious little red radio that dad gave me at age 15.

What I am not ok about is my girl inheriting her mummy’s bad genes. I was diagnosed with epilepsy at 41 but 2 years ago my girl was diagnosed with epilepsy at age 7.  I did not have this in childhood, teenhood, young adulthood. So I went about life with no restrictions. I swam, went snorkelling from a boat in the deep sea, went hiking, went drinking, drove home alone at 4am, stayed over at girlfriend’s houses, etc etc. I did all those things without fear or restrictions at different stages of my life. My poor girl is only 9. We are afraid for her. It saddens me terribly. I hope that she will outgrow this eventually. Having a seizure is not so bad because you don’t remember it unless you hurt yourself in the process. However, watching a loved one have a seizure is terrifying. You feel so helpless and sad. The memory of watching my girl have her first full blown seizure is something I don’t want to remember but I remember it clearly.

I have only had about 5 seizures in all including the 3 on that horrible day and my girl probably about the same number so we do not have it so bad. There are some who have to go through life with daily seizures. I can’t imagine how life must be like. That is why my msn status reads “Each day is a gift” but sometimes I forget that.

Vote for Epilepsy Awareness

Have you ever met someone who is passionate in something? Whether its their work or a project of whatever. These people are truly inspiring. I’ve met a paeditrician who is passionate in breastfeeding, a gynae who is passionate in her work and a neurologist who is passionate in his work (Hey. How come they’re all doctors?) It is a joy to watch them at work. No matter how busy they are (and these are very busy people), they always still manage to have a smile, and time for you because they truly believe in their work or project. They believe in what they do and they love what they do and what they do often helps other people.

Speaking about passion for something,  I also had the chance to meet this lovely lady who is passionate in her work to create epilepsy awareness. She used to have a booth at Wisma Atria for almost 4 years promoting epilepsy awareness. She gave me her time and some answers when I was searching for one. One of the best gifts you can give to a person is the gift of time. Time to really listen, understand and help them. This is what she has done for many people in the 4 years that she had her booth.

She has to close her booth now but I believe that she will continue to do valuable work in creating Epilepsy Awareness on her blog and in other ways. Wellsphere.com (a renown health website in USA) had nominated her epilepsy blog to be part of its 1st Annual Health Blogger Awards competition.  The competition had started on 15th December 2008 and will end on 31st January 2009. 

Will you help someone who is compassionate and passionate about creating Epilepsy Awareness to further spread Epilepsy Awareness by voting for her blog? I hope that you will.

You can help to promote epilepsy awareness by voting for epilepsy awareness.  Please visit http://www.epilepsylegacy.blogspot.com/.  You will see on the top right hand corner of the blog a voting badge with her photo in it.  Click on the VOTE NOW below the photo.  You will be asked to fill in a small form to register yourself to be a member of Wellsphere.com.  Fill in your particulars.  Click SUBMIT VOTE.  Your vote has been cast for epilepsy awareness.

Misconceptions about Epilepsy

Over the weekend, my sisters and I attended a health talk about nutrition for people with Alzheimer’s. Since the speaker was talking about the brain, one of the participants went up to him with a question about epilepsy or how to handle someone in a seizure because she had seen her neighbour having one.

Sad to say, many people still have misconceptions about it or do not know much about epilepsy. She was talking rather excitedly.

“Its Gila Babi.” ; “We put a spoon in his mouth.” ; “He’s an electrician, I think it must have affected his brains.”

I wanted to tell her what to do and what not to do when you see someone in a seizure but although she was asking that very question “What to do when you see someone in a seizure.” I felt that her mind was closed to the replies.  She was talking agigatedly rather than listening.

I guess that this misconception about epilepsy compared to other disorders is because of the nature of it. A seizure is very frightening to watch. The person loses conciousness and loses bodily functions and controls, eyes may be jerked upwards, face may turn blue, person may lose bladder control, hands and legs jerking uncontrollably, teeth biting down very very hard on the tongue, frothing around the mouth. Horrible isn’t it? Perhaps that is why people who don’t know much about it call it gila babi! Literally translated that means mad pig. Or they might think that the person has gone into a trance or is possessed by some devil. For it may appear that way.

When I was young, I was told by classmates and teachers (yes, teachers too, teachers who tried to pry a spoon into a poor epileptic girl’s mouth each time she had a fit. I think the teachers shouldn’t have been this disinformed. If you have a child who has epilepsy you should make sure his/her teachers know what to do and what not to do), I was told that if you get bitten by a mad dog thats what will happen to you because when you have a seizure you sometimes foam at the mouth. Have you ever heard that one before? Of course the one about being possessed by spirits is a common one too leading to many drinking “fu” drinks instead of getting the proper medication for it.

So am I a mad pig? Well, I may be a bit mad at times and I am a pig when I see food but I don’t have gila babi. I have epilepsy. It was diagnosed when I was 41 (yeah yeah, I’m that old). I have only had about 5 seizures in all. 3 of them occured on the same day. I am taking medications and my seizures are under control. Besides medication, I try to eat well, sleep well, exercise and not get stressed up over little things. The stress part is harder to control because I have poor emotional intelligence. Emotional Intelligence is a very nice word for someone who likes to scream and shout over small small things. 😉

So tell me, what do you know about epilepsy? Have you ever witnessed anyone having a seizure? How did you feel? Helpless, scared or afraid? If you don’t know much,  you can read my previous post Epilepsy as explained by MG or this one What is Epilepsy from eHealthMD or this interesting one Many “believe myths” on Epilepsy. By knowing what to do to help someone in a seizure, you may be helping someone tremendously so do read up if you have the time.

What a week!

I surrender. I never thought I would say this but “I can’t wait for the maid to arrive.” Haha. Actually, I detest the idea of having a maid. I like taking care of my house myself. I enjoy my privacy. I don’t have another person to worry about nor face some of the challenges that those with a maid have to face. I think that if my mum who had 5 kids and no modern amenities can do it then why can’t I?

However, after a week of wiping poo off toilet floors, and vomit from dining floors and handwashing soiled clothing etc etc etc, I give up. I can’t wait for the maid to arrive to assist me with some of the boring household chores so I can concentrate on what matters, my husband and kids and not forgetting myself and my blog too. I wish to spend more quality time with hubby and kids and have more time to myself too.

One day when big sis called to ask how I was right after I had finished spraying detergent on the toilet floors where I had wiped off poo, finished handwashing clothes and dealt with 3 screaming kids (having fun) and 1 which vomitted from too much fun plus the same strain of cough as mine, I laughed and laughed so hard over the phone.

Dad did not make it to the toilet twice to poo this week. But the good thing is he finally agreed to take a bath after those accidents. “I am afraid to take a bath” he tells me. “What is it you are afraid off?” I ask him. “Is it the sound of the water? Is it the cold?” “Its the cold” he says. “You don’t know what its like” he continues. “It leaves me uncomfortable the whole day afterwards, cold all over the body and up to the head.” he says. He agreed to bathe then but changed his mind. I persisted and he agreed at last. I sat outside the bathroom door waiting for him. He took a long time but after he came out he looked relieved and happy and said “That was shiok. I even poured water over my head.” I touched his head and it was wet because sometimes he lies about having had a bath. I guess this bathing thing must be a phobia for him for him to resist it so much. Well that was that till another few weeks again.

He was slow and he was lost. Its sad to see a person lose their ability to do simple tasks. Buttoning his shirts, putting on his trousers, removing his socks requires hard concentration for him. Sometimes he forgets what he should do next. I don’t think he knows what time of the day it is. am or pm? Eat and Sleep is the easiest thing to do.

Dad is back at second sister’s house now and I am glad to have my routine back now that the school holidays is over but that darned cough is still around.

While dad was here, big sis came over a few times. Seeing her must have brought back memories of the time when I had a fit to my girl (she saw more of my sis then) because she spoke to me about it again. “I still don’t understand what is this epilepsy thing.” she said suddenly when we were getting ready to nap. I explained to her again and she told me the story of what happened again. “Did you know that baby and I thought you were a monster and we ran behind the door to hide?” I laughed and explained to her again about epilepsy and seizures in as simple terms as I could. Big big words for a 6 year old but its always better to be open to the kids. I assured her that mummy has not had a seizure for one year now because of medication plus adequate rest and exercise then I asked her “Do you still think I am a monster?” “Yes.” she said. “You always shout at us!” Hahaha. “Well, I won’t shout at you if you promise to be a good girl and good boy.” Oops! I really must control my shouting. Lol.

The worst day of my life

Today is one year from the worst day of my life. Ironically, I don’t remember much of the day. Not that its something I want to remember but still it feels rather strange to have part of the day completely erased or wiped out from my memory.

I feel scared today. I was not sure whether to write this down but I guess I should. So that I can turn my fear into something more positive. So lets start thinking positive now.

I have been seizure free for one year now with the help of medications which my doctor says is a very low dosage and thats good. I hope to be off this toxic medications one day but in the meantime, I must remember to take care of myself.

I must remember to get good sleep and exercise without being too obsessive about it. I am quite obsessive about sleep especially. And I must always remember these words from hubby “You must take care of yourself so you can take care of us.”

I am normally quite cheong hei (long winded) when I write, but today, I feel a bit loss for words. I don’t know what else to write so I shall stop here with a quote.

Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go out and get busy.
Dale Carnegie

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