Life with Epilepsy — Epilepsy Survival

Introduction:

In the journey of life, some tales inspire stories that enlighten and voices that resonate. Meet Nurul Hidayah Binti Saifuddin, a brave soul navigating the complexities of life with epilepsy. In her poignant narrative titled “Life with Epilepsy,” Nurul Hidayah sheds light on the challenges faced by those living with this neurological disorder. Through her words, she invites us into her world, where seizures cast shadows and misconceptions cloud understanding.

From the stigmatization surrounding epilepsy to the physical and emotional toll of seizures, Nurul Hidayah unveils the realities often hidden from plain sight. With unwavering courage, she confronts societal perceptions and shares the profound impact of epilepsy on her daily life. Through her journey, she offers glimpses into the struggles faced by epilepsy fighters, challenging us to see beyond the surface and embrace empathy and understanding.

Join us as we delve into Nurul Hidayah’s narrative, a testament to resilience, perseverance, and the power of sharing one’s truth. Through her story, we embark on a journey of awareness, compassion, and hope, honoring the strength of all epilepsy fighters worldwide.

Life with Epilepsy

Living with Epilepsy

Briefing for the epilepsy journey

The several words and sentences that are very sensitive to people who have epilepsy disease, “You don’t know everything”, “You just falling down and sick” , “Are you fever because your temperature increases”, “Are you getting OK? “.. Maybe when hearing these sentences, the people have seizures that they still do not fully remember what has already happened. This situation occurs after getting an attack because of their epilepsy disease.

In certain places, epilepsy is also called “SAWAN*. Even worse, sometimes the words “SAWAN’’ are used in some societies to indicate that the person is a “STUPID” “LESS SMART’’ or “SLOW LEARNER”. Totally, refers to someone who does not think normally.

Let’s think about these issues for a while. Are people aware of epilepsy fighters? Ask and check. All surrounding people can declare anything and make this statement because they aren’t aware of this epilepsy disease. Other than that, some people declare it comes from others’ spiritual things, such as evil, ghosts or something black. Epilepsy stigma can significantly delay diagnosis and treatment because of fear of discrimination. Stigma from surrounding people can be a core affects this fighter’s feelings.

Epilepsy and seizure in terms of medic

How is this epilepsy disease in terms of medicine and science? What are the signs of epilepsy? So, let’s open our minds to accept and study epilepsy.

Epilepsy is a neurological disorder characterized by recurrent seizures, which are sudden, temporary changes in brain function that result in abnormal electrical activity. These seizures can vary widely in their presentation, from brief lapses of attention or muscle jerks to severe convulsions and loss of consciousness.

Seizures can look different for everyone. Seizures don’t always involve shaking of muscles. A person may be unresponsive, lose consciousness, wander around and experience confusion, funny feelings, taste or smell, or fall to the ground and shake.

Epilepsy can be caused by a variety of factors including genetic factors, head injury, brain infection, stroke, and abnormal brain development.

Epilepsy, Brain, and Learning (What is Epilepsy)

The brain is the most important organ. Seizure is synonymous with the brain and this disease can have an impact on brain health. The brain is a complex organ that controls thought, memory, emotion, touch, motor skills, vision, breathing, temperature, hunger, and every process that regulates our body. Together, the brain and spinal cord that extends from it make up the central nervous system.

The pictures show part of our brain. All parts have their functions to make sure it works properly. The pictures also explain the comparison between healthy brain and injured brain by each part.

Epilepsy, Brain, and Learning

So, what will happen to an epilepsy fighter’s brain after having a seizure? Mostly, epilepsy can make people slow to accept and learn new things. Not all, but epilepsy fighters at high risk become OKU (people with disabilities), especially learning disabilities.

When a seizure occurs it will disturb the brain function. The healthy brain will become

injured. So what happens after people have epilepsy? Mostly, the medical part only gives the support medicine to control, not fully recover.

Scared without reason Dag…Dig…Dug

Dag..Dig…Dug…Dap..Dip..Dup…

We epilepsy fighters look the same as normal people and are free to walk everywhere without support when free from attack… No one knows about their feelings… In the middle of a normal situation, it suddenly feels different. What kind of difference?

There is a voice disturbance in the ears. Legs feel cramping even though they are not tired. Members become cold. The heartbeat is getting faster, it can be felt up to the heart, and stomach.

It’s like the skin shrinks… The colder it gets, the teeth feel too.

Maybe this is the reason why sometimes people with disabilities are seen as a bit strange. Legs that feel convulsive, and numb get stronger and become heavy and difficult to lift. Maybe those who stand feel swayed.

So?? Some of them looked strange, maybe he was fighting with this palpitation. Maybe the disabled group especially, because the nerves are more prone and easy to be influenced.

If someone is driving, imagine how to control it. So, we are not allowed to take driving licenses and anything related because it will have a dangerous impact on them.

For students, who are studying, of course, it is difficult to accept what is learned. The shadow of each, if the student is sitting the test?? Making a presentation, going through an important interview, etc.??

The longer this palpitation disorder lasts. Maybe the more it affects his personality and life…THREADS FOR NO REASON LIKE THIS??.

Yes, scared without reason!! Hard to explain because others cannot see and feel it. As epilepsy fighters, mostly feel it.

Psychiatry or mental disability?? Nowadays, the number of people who have psychiatry is increasing. For example, session disorder, bipolar disorder, anxiety, schizophrenia, and others. So result epilepsy affects emotion and leads to psychiatric disease.

The world went dark for a moment (seizure)

Seizures can occur consciously or unconsciously (partial seizure type). An unconscious seizure is more dangerous than a conscious seizure.

An unconscious seizure (total seizure) may cause the patient to pass out and not feel anything at that moment. If there is a glass cup in his hand, you will hear the glass breaking. If it’s in a class for students, maybe a chair will be heard. An attack can harm oneself, which is worse if it’s doing risky activities like driving, riding a motorcycle, etc. It is also dangerous if he is alone in a public place.

Pass out?? Faint??

Only good thinking, just ask to oneself, God allowed him to get a seizure so he could rest for a while. Fainting is like a person resting and sleeping. They were not feeling anything although they were injured and sick at that time.

The patient cannot detect the exact time it started until he is fully aware… Attacks can happen anywhere, anytime without control.

THE WORLD IS DARK FOR A MOMENT. Sleep, we prepare ourselves to sleep but this attack, which is the opposite..

A conscious seizure (half), is not as dangerous as an unconscious seizure, but it can have some bad effects. A feeling of fear that comes suddenly and emotionally disturbed.

An unusual ringing, hissing, and buzzing sound in the ears as well hear a voice that doesn’t exist. Limbs feel unpleasantly limp. Nausea that occurs suddenly and stomach ache.

Finally, sweating, flushing, or the face turning pale suddenly is also likely to happen. Sometimes facing a conscious seizure is more painful, especially for those around you who do not understand and do not know. We need help from others but don’t know how to explain it.

As a result, it may cause a fight, cause a gap, and be sidelined. Sometimes he continues to interpret it as if he is suffering mentally because he can get angry suddenly, it’s even sadder that people look at him as a person who is not sane and CRAZY. This disorder also affects his memory and learning.

Whether it’s a full or partial seizure, the world goes dark for a moment when hit by a seizure. Very sensitive if we remember other people’s perceptions of us.

Can I say that I have a dark future because of seizures?

Epilepsy (Not all Disabilities are Visible)

What do people say, to people with disabilities (pwd) or OKU?

Not all disabilities are visible like epilepsy cases, or something that cannot be seen by other people. We don’t know how to explain it because it is not visible like blind people or other physical disabilities. Special needs people can be replaced with the words people with disabilities (pwd) as we appreciate and support them.

Epilepsy study and learning.

In fact, patients with Epilepsy have a high unemployment rate in our country Malaysia. So how did this issue happen? If voice disturbances during the learning session affect their study focus. Very hard for seizures to happen during a learning session because we don’t know everything. Therefore we must review many times, other students are easy to understand but we cannot and must spend more time to understand. Not only during learning sessions but it also happens during work.

Future… Sometimes we already lose our confidence level with disabilities. The study has presentations, oral tests, public speaking, and others.

Last but not least, getting tired with a headache and attack will cause you to have a fever and disturb other body systems. The emotion is also disturbing. The appointment for medical treatment and the need for a left learning and working session.

Motivation from this

I have been an epilepsy fighter since childhood, but when I think of other fighters who have more sight effects, it can increase my own motivation to move on. So far I have finished my masters in this condition and as people with disabilities (OKU). Yes very hard, other students are easy to understand during teaching sessions but I need many revisions because they are not easy to accept and understand at that time. Life is a journey to learn. Never mind slow if we always move.

Hopefully, many awareness, knowledge, and attitudes towards epilepsy among rural communities need to be improved. For all epilepsy fighters like me, wish you stronger and trust the journey with this condition. May all will be successful in life and the pearl will shine. #epilepsyFighter

HAPPY INTERNATIONAL EPILEPSY DAY TO ALL FIGHTER, 12th FEBRUARY WE ARE STRONG PEOPLE 💪💪

Name: Nurul Hidayah Binti Saifuddin, Role or designation in relation to special needs or learning disabilities: Special Need people (people with disabilities, epilepsy fighter), Age: 34, Location: KotaBharu, Malaysia Title of Work: Life with Epilepsy

For more information visit EIU-Paris Special Education Department

Dr. Juliana Safri : Dean of Studies | Special Education Department | European International University

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