Navigating Epilepsy: A Journey of Self Management

Tom shares his journey with self management, since being diagnosed with epilepsy four years ago.

Living with epilepsy has been a journey marked by challenges, resilience, and empowerment. Sudden and uncontrolled seizures have the potential to disrupt daily life. However, my story is not merely one of enduring a condition, but of mastering it through ‘self management’. This approach encompasses the ability to make informed decisions, build confidence, and take control of one’s health and wellbeing. By integrating these principles into my daily routine, I have transformed my relationship with epilepsy, moving from a place of uncertainty to one of proactive, informed living. Through personalised strategies, diligent self-monitoring, and a commitment to understanding my body, I have learned not just to live with epilepsy, but to thrive despite it. By sharing my experiences, I hope others can do the same.

Epilepsy and Me

My journey with epilepsy began at age 11 when I developed a brain abscess and underwent a craniotomy to remove the infection. The operation was a success, and I lived a perfectly healthy life until I was 24. But one morning, I woke to find myself hanging out of bed, blood on the floor, my arm twisted behind the bedside table, and my mother carefully manoeuvring me into the recovery position. After being taken to the hospital and undergoing various tests, I was diagnosed with epilepsy. Further investigation revealed that although the operation was successful, the abscess had left lasting damage to the surface of my brain, leading to my epilepsy.

For me, epilepsy manifests in two forms:

1. Tonic-clonic seizures: Sudden and intense episodes where I lose consciousness, my body stiffens, and I experience convulsions.
2. Focal seizures: Brief episodes, usually lasting a few seconds, during which I maintain consciousness but lose my train of thought and feel an electric shock sensation down the left side of my body.

Navigating epilepsy has not been without its trials. Each day carries a sense of uncertainty – I never know if or when I’ll have a seizure. I’ve experienced tonic-clonic seizures at home while watching TV, walking down the street, and during meetings at the office. They arrive without warning, leaving me constantly on edge. And until recently, I was having focal seizures multiple times every day.

Although tonic-clonic seizures carry heightened levels of danger, focal seizures can be more impactful on a day-to-day basis. Frequently losing my train of thought slows me down at work, and unless these seizures can be brought under control, I face the possibility of never being able to drive. Lifelong dependency on others can be a difficult reality to accept.

Managing my epilepsy has been a long and arduous process. Four years since my diagnosis, I’m currently on my third medication, and only now does it seem like my seizures are under control. Yet, there’s no guarantee it will stay this way. If my current medications fail, my options include continuing as I am or exploring major surgery to remove the damaged brain tissue – a procedure with only a 60% chance of success.

Understanding Self Management

The “Gaun Yersel!” guide, developed by the Health and Social Care Alliance Scotland, provides a comprehensive framework for self management, emphasising the importance of individuals taking charge of their health in partnership with healthcare providers. For those with epilepsy, I interpret the key need for self management as:

1. Personalised Care: Self management allows for personalised care plans that cater to the specific needs and preferences of each individual.
2. Empowerment: Self management empowers individuals with epilepsy to take control of their condition, leading to increased confidence and a sense of autonomy.
3. Symptom Control: Effective self management can help minimise the frequency and severity of seizures, improving overall health and quality of life.
4. Improved Outcomes: By actively participating in their own care, individuals can achieve better health outcomes, including fewer hospitalisations and medical interventions.

The Strategies I Use

Medical Management:

• Managing my medication is critical for controlling my epilepsy. I adhere to a strict schedule using reminders and a pill organiser to ensure consistency.
• My goal is to be seizure-free so I can drive and also to live without the side effects of medication. Collaborating with my neurologist and other healthcare professionals ensures coordinated and effective care with the aim of achieving this goal together.
• Self-monitoring is also key; I keep a diary of my symptoms and medication intake to identify patterns and make necessary adjustments.

Work and Lifestyle Adjustments:

• Adjusting my daily routines has been essential in managing my epilepsy. Prioritising consistent sleep, maintaining a balanced diet, and incorporating regular exercise help stabilise my condition. Avoiding known triggers such as stress and fatigue is also crucial.
• Balancing a high-pressure job in finance with epilepsy requires careful planning. Admittedly I was worried about talking to my employer about my condition due to the stigma attached to it and fear they might treat me differently, however open communication with my employer and colleagues has been vital. By discussing my condition, we implemented measures to reduce fatigue and seizure risks. Workplace adaptations, like limiting projects, delegating tasks, and having a flexible work environment, are key to maintaining my productivity and wellbeing.

Emotional and Mental Wellbeing:

• Maintaining emotional and mental wellbeing is crucial in managing epilepsy. Good mental health can reduce seizure frequency and improve overall quality of life. Coping strategies that have helped me include mindfulness practices, pursuing creative hobbies in drawing and design, and continuing to cycle and compete in long-distance triathlon.
• Goal setting has been particularly beneficial. Establishing realistic and achievable goals keeps me motivated and allows me to track my progress. Whether it’s improving seizure control or enhancing daily functioning, these goals provide a sense of direction and accomplishment in my journey with epilepsy.

Education:

• Education plays a crucial role in managing epilepsy. Access to reliable information and resources helps me make informed decisions about my health.
• My family, friends, and colleagues have been incredibly supportive. By encouraging their questions and sharing information, I’ve helped them understand epilepsy better, which has fostered a more supportive environment.
• Organisations like Epilepsy Scotland provide invaluable resources and guidance you can refer to.

Final Thoughts

Living with epilepsy presents unique challenges, but through effective self management and a strong support network, it is possible to lead a fulfilling life. My journey has shown that with the right strategies, open communication, and a proactive approach, you can gain control over your condition and thrive. Explore resources like “Gaun Yersel!” and if possible, join the Self Management Week 2024 campaign and share your journey. Together, we can inspire and support one another. For more information on self management and resources, visit the ALLIANCE Scotland website.

End of page.