The biggest thing we have struggled with is the emotional toll an Epilepsy diagnosis has had on us as a family.
‘The CHESS study showed that children with epilepsy frequently have problems with learning and behaviour. These problems are often greatest for children whose epilepsy starts in the first two years of life. Additionally, the CHESS study suggested that epilepsy can have a significant impact on the families of affected children’SEEN Report 2017
Below are the key findings of the SEEN study which highlight:
high levels of problems with development, adaptive behaviour and sleep among children with epilepsy.
higher levels of depressive symptoms and stress among mothers of children with epilepsy compared with mothers of children with non-epilepsy related neurodisability.SEEN Report 2017
Therefore, it is essential that we look after ourselves and our whole families mental health. Below I will share things that have helped us.
Mindfulness and Stress Management
At first I was very pessimistic to whether this was going to work for me. I was shocked. It was amazing! It allowed me to take 5-10 minutes out of my day to de-stress and then carry on. I can often see things in a more positive light afterwards and it allows me to process situations in a calm and timely fashion. I recommend the app headspace. You can trial it for free to see if it’s for you.
I also love to escape for a bit and luckily so do my family. We love walks outside and often head to the nearest beach, woodland or historic place. This I’ve found a bit tricky recently, because I now need these places to have phone signal and to be safe for W. I will be uploading a blog soon of Epilepsy friendly places we escape to.
Stress Management, Mindfulness classes and other forms of support are also accessible by self-referring though the NHS Wellbeing service. You can contact them on 0300 123 1503.
Talking about Epilepsy
This I find difficult. Some people don’t want to talk about it. I find this hard as they can seem uncaring, but try to remember that maybe they just don’t know the right questions to ask. Some people want to talk too much. Tell them how you are feeling and try to not listen to the horror stories.
If you can, try to find someone that can relate. My guardian angel was a ‘friend of a friend’ who I’m so thankful I found, during those very scary early stages, after diagnosis. Some areas also have specialist Epilepsy Nurses (ours is frankly amazing).
http://www.youngepilepsy.org.uk also have a wealth of helpful resources that can help you talk to a young person suffering with Epilepsy and any friends and family. I’ve downloaded and printed the magazines. This has helped W with understanding why he sometimes feels so poorly.
The work juggle
I’m very lucky that my work have been very understanding of our current situation. I had to be honest and requested one day off a week, so I could attend Epilepsy Clinics with W. He would also be able to rest, which is essential for him, as one of his triggers seems to be tiredness.
Sit down and work out what is possible financially and emotionally.
Can you do anything else to elevate any other stress? Could someone close help with the school run? Could you work from home and request flexible working? Explore your possibilities.
Just say no
Be kind to yourself. You can’t do everything. If you need a day to regroup and stay in your PJ’s…do it. People are generally very understanding – if they are not you don’t need them around you. Some ‘friends’ may drift away but ask yourself, were they really friends? Have they been supportive? The best ones are the ones that don’t mind popping in for a cuppa and a hug or send the ‘just checking in’ messages. Those ones are the keepers.
Don’t struggle alone
Young Epilepsy have a helpline should you need it. It’s open Monday to Friday, 9am-1pm. The number to call is 01342 831342.
Samaritans offer confidential support for people experiencing feelings of distress or despair. Phone 116 123 (24-hour helpline)
Family Lives offer advice on all aspects of parenting including dealing with bullying. Phone 0808 800 2222 (Mon-Fri 9am-9pm. Sat- Sun 10am-3pm)
I hope the above advice helps,
Love and support,