Becoming a Parent with Epilepsy
As a person who has had epilepsy all of my life, I am very blessed to have two wonderful children. However becoming a parent did bring it's own challanges and the need for some changes to my lifestyle.
In the Spring of 2010 I experienced a Tonic Clonic seizure in work. At that time I was 'burning the candle at both ends'. I had two very small children, was working a full time job and I was trying to study part-time for a degree. I had been pushing myself too far for too long. After that day I realised that I needed learn how to live safely as a mother with epilepsy. I had to look after myself and my children realisticaly. I realised the truth of what could have happened to me and I began to thank God that I was ok.
Admit you have epilepsy
After the seizure in 2010 I began to do a little research into epilepsy. I have had epilepsy most of my life, but I managed to call it everything but it's proper name! With the help of good medication I had been seven years clear of any seizures. I had become complacent, stopped following basic advice and even denied that I had epilepsy! At that point almost nobody apart from my husband and my doctor knew about my epilepsy.
On the day that the seizure occurred I had driven a two hour commute to work after spending most of the night dealing with a teething baby. Basically I was doing nothing to take care of myself!
Is it safe to be on my own with my Child?
When my first child was a small baby, she slept very little. I breastfed her and she was constantly hungry. My husband regularly came home from work to find me asleep on the sofa with my small baby a fraction of an inch from the edge! He became worried and arranged for a lot of people to "visit" me. Thankfully I began to get a little more sleep and things returned to normal. However those visits from friends and family possibly saved me at that time.
If you have epilepsy that is well controlled there is no reason why you can not be left alone with your child. However always remember that the safety of your child should come first. If you like me, hate to ask for help, then this may be the time to swallow your pride. Your neurologist or Epilepsy nurse is the best person to talk to about the measures you need to take.
Create a Safe Lifestyle
As a parent who has epilepsy, it is important to create a healthy lifestyle in order to protect you and your baby.
- Take your medication at a regular intervals each day - sometimes it helps to set the reminder on your phone
- Get enough sleep - 8 hours or so a night. This may not always be possible you have a young baby who is teething or who is still breastfeeding on demand. Therefore you need to be good to yourself and grab sleep at every opportunity. Remember the old saying "when baby sleeps, mother sleeps".
- Avoid alcohol - Alcohol dehydrates your system and puts you at more risk of seizure activity.
- Seek out support - Do not be afraid to use the support of your friends and family when you need it. You are responsible for being well so that you can take care of your child.
- Do not compare yourself to other people or push yourself further than you are able for. Everyone is different and everyone handles things in different ways.
- Handle each day as it comes. If you dont get everything done leave it until tomorrow.
- Make lists - Epilepsy can cause memory loss which can be terribly frustrating. Make a list of the important things you need to do and tack it somewhere you can see it. This will help you to remember and to prioritise. I found that this reduced my panic levels.
- Buy a calendar and mark important dates on it including a little treat for yourself.- Epilepsy medication can cause depression and it is important to watch out for any signs of this and to actively work towards a healthy mental attitude.
- Work closely with support groups, your epilepsy nurse or consultant. It is better to contact them if you have any concerns regarding your health rather than risk reoccurance of seizures.
- Observe how your medication effects you and makes you feel. Many Anti epilepsy drugs have different side effects. It is important to find the right drug and the right level for you.
Aids to help you live confidently
Support for parents with Epilepsy
There are many great support organisations out there that can provide you with advice on your particular type of epilepsy, your medications and even support groups in your local area.
Some of the groups that I have found very helpful over the past couple of years have been Brainwave - The Irish Epilepsy Association. This organisation provides support groups, telephone support and also has a facebook page.
I have also found Patients like me to be an invaluable website. This site allows you to record how you are feeling each day and to track your progress. By doing this it becomes easy to spot any triggers or warnings. This also has a networking facility.