Archive for the 'Epilepsy' Category

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.

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.

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.

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

Last night I had a bad dream. I dreamt that I had colored pages and pages into a coloring book but had no recollection of doing it. I dreamed that I had colored my bears purples and pinks etc. Everything was colored badly. There were no shades or different colors for each object. Everything was colored in one color.

I told my bros and sis, thats not me. I would color everything nicely, not ugly in one color like this and I don’t remember doing it. Look. I told them theres so many pages of it too. I don’t remember coloring any of them. I must have had a seizure without knowing it, I told them. Perhaps I had a seizure and I was doing this repetitive task and now I can’t remember a thing.

I guess that my subconcious fear has not gone away. I still fear my seizures. I fear the feeling of having a seizure and not remembering it afterwards. I had one day erased from my memory on that day when I had 3 seizures in a day and it was scary. My sister told me that I didn’t sound like myself, that I sounded sort of whiny when I spoke to her after recovering from my seizure. Its strange to not remember. Feels as if I had been a walking zombie or something. I do not remember anything that I said to my husband or children. He said that the second time it happened that day, I had called him and told him that my girl had informed me that I just had another fit. I don’t remember any of it. I worry what the kids felt, being alone with me when it happened. It was on the 1st of April. What a stupid April Day’s joke I had played on myself, I thought. OMG, I’m going to stop this train of thoughts right now.

Last night I read a bedtime story to the kids. There was a line in it which said “Nurse Elephant tells her patients that it is no use feeling sorry for themselves. There’s always someone who’s worse off than they are.” I’ve only had a few seizures and they seem under control now with medication. Only a few seizures and I’m scared shitless. My doctor tells me that he has many patients, some of them who have several seizures daily. Some, once a week. My once a year or two pale in comparison to what these other people are going through. I wonder how they lead their lives but I guess they just go on. There is no choice. You just go on, just like everybody else.

And so I finally got my CT Scan done. They did two. One normal and in the second they injected some coloured liquid into me so that can see better. The doctor in attendance poked me 3 times to find the right place to inject the fluid. 3 times! Ouch! Ouch! Ouch! So painful! Cost around RM650. Ouch! Ouch! Ouch! This time sakit hati pulak. Sakit tangan, sakit kepala and sakit hati.

“You punya salur semua kecik kecik” she said. Not her fault for poking me 3 times. Happens all the time, each time I go for a blood test or whatever that requires the needle. Always kena poke many many times before they get it right. I must have really small veins. Can’t say the same of myself though.

One month is up and I haven’t lost anything yet in my lose 5 pounds in 5 months project. Haiyah! Such poor self control I have.

I have been having chronic headaches. I get these headaches everytime I wake up from sleep whether its nighttime sleep or an afternoon nap. The headaches don’t feel painful but rather my head feels very heavy, a bit like hangover headaches I think. Its not much fun to feel this way almost daily.

I have a CT Scan scheduled to make sure there is nothing wrong with my head. And so I sit here and face my greatest fear as a mother again. Its just a routine test (I’ve done it before) but I’m still kiasi. Yes, I am really kiasi one. I was never this way till I became a mother. I think all parents have this kiasi feelling. It is a feeling that comes out of love for our children. Whether they are still little like mine or they are all grown up we always want to be around for them to look after them and make sure they are alright.

On the bright side, I think I’ve started to spot now. Phew! My period was late and I was really worried about getting pregnant (now that I’m on medications) even though we both long for another child.

I’m still not in a very good mood today plus I had a tiff with the hubby over some issues. I was very mad at him for saying some rather hurtful things and he was mad at me too but I’m not mad anymore. Somehow I can’t stay mad at him for long …..

How should I cheer myself up? I think I will go and write some money paying posts, then play some color mixing with the kids then go watch the King and I and sing and dance with the kids. Yes, thats what I’ll do. 

My doctor’s appointment was made 3 months ago when I saw him last so since its the holiday season I decided to call up to make sure that he was not going on leave or something like that.

MG: Hello, I’m calling to reconfirm my doctor’s appointment

Reception: When is you appointment? (Sounding busy and hassled)

MG: Friday

Reception: Ok. Just come lah!!!!

MG: I would like to check to make sure the doctor is not on leave

Reception: Which doctor are you seeing? (Sounding very irritated)

MG: Dr X

Reception: Wait!!

A moment later……

Reception: What is your name and card number

MG: MG. Card No. 123

Reception: Your appointment is here. Bye! *toot toot toot* (Sound of phone being hung up!)

She hung up the phone without giving me a chance to say anything further. She never ever answered my question of whether the doctor will be on leave. Sure I know my appointment is there on paper or on the computer screen. The appointment was made 3 months ago and I am sure it is on the records but records can be wrong. I didn’t want my husband to take leave or rush back from work and then we rush to send the kids over to a relatives before rushing to the clinic only to be told that the doctor had gone on leave. Sigh!

Sometimes its like that with busy specialists. Their time is so important that you are told to just come… and they see you on a first come first serve basis. So the reception’s first reaction must have been. “What for you call? Just come lah!” On the other hand, the last time, I was told to “Come before *a certain time* otherwise if there is no patient, the doctor will leave.” (even though there had been a prior appointment made!) Hmmm… seems like their time is important but yours is not. The doctor does not wait for the patient but you have to wait for hours to see him.

The other day I got a call from the gynae’s office reminding me to go for my pap smear. Bleargh! I complain but I really should get round to it soon for my own good. And my girl looks like she needs a visit to the dentist soon. Her new front teeth has come in and the old one refuses to drop off so she’s got two rows of teetch. Hmm….

And of course, my routine doctor’s visit is due too. I remember how I agonised over it. I’m calmer now but I still don’t look forward to it. My doctor’s visit is the only time I get to “pak tor” with hubby as we send the kids to a relative so they don’t have to endure the boring wait but most importantly we don’t want them to overhear some of the discussion and become scared and worried about something they do not understand. Otherwise we usually take them with us everywhere we go.

I’ll try not to be so anxious over this doctor’s visit because I remember my over anxiousness turned my “pak tor” session into a disaster the last time. Hubby was just as anxious as me. Its a long story but the gist of it is I forgot something important about the medication and from holding hands (which is rare and strange these days because the kids are always around) to the doctor’s office, we left there with me crying sorry tears for myself and telling him that he shouldn’t nag me and he wasn’t the one who was sick to him telling me that being sick does not mean you are king.

A stranger reading this may think hubby is mean for telling me that but he is not. Its just that the previous appointment was so hyped up by our over anxiousness and because we are so different in nature. Hubby is the type who is very diligent, practical, efficient must do everything on the spot kinda guy whereas I’m the no-brainer in the family, always dreamy, emotional and impulsive. Our differences make it difficult for us to understand each other sometimes. Sometimes I think he’s the sweetest, bestest hubby in the world but sometimes I get so mad at him. Reminds me of the saying “Sometimes you’re the bug, sometimes you’re the windshield.”

I hope to get these appointments over with and out of the way so that I don’t have them hanging over my head.

Its been five months now since the seizure I had on 1st April (yeah, what a cruel joke). Anyway, I’m on medication now and I thought that I was beggining to get my confidence back. Now, I can go to public places alone for short periods of time without feeling afraid, things like that.

Apparently my confidence does not extend to my subconcious mind. On Saturday night I dreamed that I was about to be struct by a bolt of lighting. I moved quickly out of its path and that woke me up with a jolt. The jolt felt like a jerk and my first thought was did I just have another seizure? I read that some people see flashes of light just before one.

I was afraid to go back to sleep for a while but I eventually did…. only to dream that hubby was bending over me with a concerned look saying “Hon, did you know that you just had another seizure?” Thats my most dreaded sentence. All I could do was ask “Is it?” without knowing what had passed, only feeling tired, so very tired. All that happened in my dream almost like what happened 5 months ago. Sigh. When will I stop feeling afraid?

I had one or two sleep paralysis moments upon awakening a few months ago. Doc says its got nothing to do with a seizure and it happens mostly to teenagers. Still it was very scary to be awake and unable to move, talk or wake up. And afterwards I felt so tired throughout the day. Really scary.

Oh well, I’m just blogging this for the sake of recording this down. Now back to writing happier more positive things. Why write such black thoughts on a Monday morning?