Personal Care & Safety
The World Health Organization (WHO) defines health as "not only the absence of infirmity and disease but also a state of physical, mental and social well-being".
The components of well-being include:
- lifestyle (exercise, diet)
- physical health (seizure control, drugs, alternative therapies)
- role activities (work, education)
- social relationships (personal and community)
- emotional health (anxiety, stress, depression, spiritual well-being) and
- general life fulfillment.
Personal Care for a Woman Living with Epilepsy
As a woman living with epilepsy, you can increase your well-being by taking an active role in educating yourself and others about the type of seizure you have, high risk periods or risk factors for your seizures, first aid and where they can find more information on epilepsy.
Common triggers of seizures
- flashing lights
- listening to music
- other environmental stimuli (heat and humidity)
- hyperventilation (can cause absence seizures)
- insufficient sleep or irregular sleep patterns
- irregular meals or poor nutrition
- excessive fluids
- beverages that contain alcohol or caffeine
- drug abuse
- fever, colds, infections, allergies, migraines
- menstrual cycle
- emotional stress
- missed medication
Some women may find it difficult to finance the costs of a proper diet and medications. If you have financial problems, you may be eligible for assistance in child-care and drug benefits. Contact your local social services agencies or
epilepsy chapter for information.
You can learn about your own lifestyle factors which may trigger your seizures by keeping a seizure diary.
In a seizure diary, record:
- date
- how you feel about yourself; your energy level
- number of seizures
- time and duration of your seizures
- what preceeded the seizure, what occurred during it and what followed it (Identify possible triggers.)
- descriptions of the times when you thought a seizure might happen but didn't
- did the seizure(s) affect your school or work? family relationships? social life?
- AEDs taken: what, when, any side effects felt
- date of your last refill
- changes in your medication
- other medication taken that day (aspirin, hormone replacement therapy, antidepressants, etc.)
- your menstrual cycle day (day 1 = 1st day of your period) and any spotting occurring between periods
- alcohol consumption
- amount of sleep and how well you slept
- what and how much you ate and when you ate it
If you have trouble following your drug therapy schedule:- Post a schedule of when medications are to be taken.
- Use a pillbox or alarm watch.
- Schedule more frequent doctor visits as a motivator to stick with your drug regimen.
If these strategies fail, consult your physician. It may be possible to switch medication with a more simplified dosing regimen.
Asking for Help
Asking for help may be very difficult. Counselling is a great idea to help you to identify your needs and risks, and to advocate for yourself.
All women are encouraged to connect with others through support groups and community involvement. Many women living with epilepsy become isolated only to the support of their family members and family physicians. Those with low social support are more likely to suffer depression and low self-esteem regarding this disorder.
Social support systems, such as self-help and support networks, can buffer the effects of stigma, discrimination and the sense of a lack of control sometimes associated with epilepsy. This is particularly important for adolescents who begin to develop communication skills, a sense of self and the confidence to interact sexually at that age.
It is recommended that all women with epilepsy need counselling, even if your seizures are well controlled. Voicing your own frustrations and knowing that others share your same concerns or problems can help heal wounds caused by other people's misunderstandings.
Exercise
Exercise contributes to mental and physical health. But consult your health care provider before you begin.
Personal restrictions on physical activity depend on both your level of seizure control and the type of seizures you experience. You can participate in many activities, but follow safety precautions. For example, swim with a buddy and notify the lifeguard of your condition. If your seizures are uncontrolled, you should not participate in sports likely to cause head injury (horseback riding or bike riding).
Take note that overprotective attitudes toward women with seizure disorders are so widespread that precautionary measures often go far beyond what is reasonable and necessary. What is necessary is to be safe and enjoy yourself without fear. In some cases, especially regarding children with epilepsy, deprivation of physical activities and understimulation may cause unsatisfactory locomotor development and personality disturbances.
Alternative Therapies
Awell-rounded approach to seizure control includes drug treatment, careful avoidance of your personal seizure triggers and the use of alternative therapies to help prevent seizures and reduce stress.
Alternative and/or complementary therapies do not necessarily eliminate the need for drug treatment but in some cases they may help reduce the required dosage of your antiepileptic medication (AEDs). This is important and a great opportunity for those who find that their seizures are controlled by AEDs only when taken at toxic levels (dangerously high blood levels of the medication) or AEDs with bothersome side effects.
Alternative therapies include:
- biofeedback
- acupuncture/acupressure
- aromatherapy
- herbs: Ginko biloba, chinaberry juice (Azadirachta indica syn. Melia azadirachta)
- craniosacral therapy
- chiropractics
- yoga
- therapeutic touch
- traditional chinese medicine
Some herbs may be harmful to you or your fetus.
Some may even increase your risk of having a seizure.
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Getting around the Isolation
Epilepsy has a profound effect on the way a woman relates to others. Your relationships are influenced, especially if dating, by your own adjustment to having epilepsy and by your confidence, self-esteem and body image. Many times, your adjustment to having epilepsy may include situations where you are rendered isolated, such as being prevented from driving. This social isolation (away from the community and friends) through lack of transportation can impede on your well-being and can also put you at risk for a situation of assault or perpetuate an established situation of violence.
Solutions
- Community social services, such as Home Support programs, or any of their other volunteer programs are open to people with epilepsy.
- Use community van/car services for the elderly and those with disabilities. (Most of the services are limited to shopping).
- In some centres, public transit systems have special bus/van services for those with physical disabilities. Although criteria for its use may be quite strict, a person with epilepsy is encouraged to obtain an application and complete it with a doctor's assistance. In most centres, an advisory committee will review each case individually.
- Some women's centres or abuse counselling centres provide escort and/or transportation services to and from hospital appointments and court appearances.
- Use the Internet to do your shopping. (Many large grocery chains offer on-line grocery shopping that can be delivered to your front door).
Disclosure
How do you tell people about your disorder? You can be subtle by wearing a MedicAlert™ (or equivalent) bracelet and carry medication in its original marked container when possible.
To discuss issues of disclosure, contact your local epilepsy chapter.
Safety Concerns for a Woman Living with Epilepsy
- Keep all medications out of the reach of children.
- Feed infants in bed, or place the baby in a secure infant seat.
- Change diapers and clothing on the floor to minimize any risk of falling.
- Keep baby supplies and toys on every level of the house to decrease the need for stair climbing, especially if you have frequent seizures.
- Wash your baby on a mat in the crib, with a bowl of water outside the crib.
- It is important to say something about the situation to your children. Facing the unknown is extremely frightening for most children. Once they are told what to expect and what their role should be, most cope quite well with a parent's seizures. You can be counselled to explain the seizures in simple, age-appropriate words.
- Children should be taught how to get help during a parent's seizure. A 3-year-old can learn to dial 911 for emergency assistance.
- Encourage the family to practice "seizure drills". Then everyone knows what to do and feels more comfortable and confident in their special role.
- Where possible, inform your neighbours of your seizure disorder, outlining the type of seizures you experience and what they can do to assist you should the need arise.
