Question

[SusieIM]

Hello,

I have not posted much here, thought of a question. First, I hope everyone had a nice Christmas and New Years Eve.

My 26 year old daughter started to have sezuires about five years ago. It has been a up and down roller coaster ride, am sure many here have experienced. Her sezuires are now mostly under control, but her past sezuires seem to have had a effect on her. She lives with me. When I say has had a effect on her, I mean she lacks confidence, seems to be almost struck, having a hard time moving forward with her life (making goals, etc.). I want to help her, I don't know how. I have made suggestions, which annoys her. I think it may help her if she joins a support group with others, who have struggled with epilepsy, tho she doesn't seem to be open to it. If anyone has any suggestions, please let me know.

[car67]

Hi Susie

A happy new year to you all.

I can truly understand how your daughter is feeling, it’s a different world when you have epilepsy. I was diagnosed with epilepsy approx 10 or 11 years ago and it changed my whole life .

I lost my confidence, self esteem, and became a recluse. It took a while for me to regain all of this , I still have times though when I became very low, especially when I have had seizures.

I found mindfulness really helpful, yoga and meditation but appreciate this isn’t for everyone. Sometimes just offloading to people who are not family helped, but the people who really understand what one is going through are the people who have epilepsy.

A support group would really help, I haven’t managed to find a local one but when I am feeling very low I contact epilepsy action, they have been my life savers, fantastic people who really do listen.

I am happy to chat to your daughter on this forum? Or she can leave me any messages and I will respond.

If not I hope everything goes well.

[SusieIM in reply to car67]

Thank you much car67 for responding. I will pass the word along, mention about a support group. At least she will know it is there, if she wants to look into it. Take care.

[EpilepsyAction1 Partner Epilepsy Action]

Hi SusieIM

Thank you for your post. It can be difficult for some people, even when their epilepsy is well controlled.

I hope you hear from others on this platform, as sharing information and experiences can be a good idea. If you don’t hear from others in a similar situation, you may wish to try our other services.

forum.epilepsy.org.uk/

facebook.com/epilepsyaction

twitter.com/epilepsyaction

epilepsy.org.uk/newsletter

We have lots of information on our website to help people to feel more confident and comfortable about living with epilepsy. There is a search box at the top of our home page where your daughter could type in key word, for example work, sports, wellbeing.

epilepsy.org.uk/

If it would help your daughter to talk to someone or if she has any questions or concerns she could phone the Epilepsy Action Helpline freephone 0808 800 5050 and speck to an advisor. Our helpline is open Monday to Tuesday 8.30am until 7.00pm, Wednesday to Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane

Epilepsy Action Helpline Team

[SusieIM in reply to EpilepsyAction1]

Thank you! I am keeping your information, to look at for present and future reference.