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JKLawrence

To the old hands - how do you cope with the fear and uncertainty?

I have a very supportive husband who looks after our two kids extremely well, and I'm finally home from hospital and really want things to be easy for him! I just feel fear. All the time, I'm worried about when my next seizure will come and what will happen.

We have taken various steps to try to reduce the risk - I try to be careful, and I have an app on my phone with a button that send a message to my husband's email and phone, and also phones home, and I now have my own wireless doorbell, and I carry the button around the house if I'm going around on my own - for example, to the toilet. Since doing these things, I haven't had another seizure but I just don't know what to expect, nor whether I'll be able to use these gadgets during a seizure.

I have been going through treatment for brain cancer, which is the cause of the seizures, apparently. So this is all completely new to me, and entirely unpredictable.

It means that it's hard for my husband to leave me alone - I feel terrified and anxious, and he feels bad about that, and I guess maybe a little worried in his turn - we're not in a position to hire live-in help, but I really wish we were - luckily we have lots of friends who are willing to drop in from time to time... but they've already been helping to an amazing extent, so we've been reluctant to make too many big asks

I find it hard to get through the days, but I really want to cope, because it would make my husband's working life a lot easier.

I would really like to know how people who have been dealing with this for a while cope with the fear and uncertainty.

I sort of feel like I'm going to have to learn to brazen it out, but I often get kind of emotional during the day; unfortunately this happened before my last seizure, so if I cry, I feel fearful that it might be a warning of a seizure coming.

It feels as if I'm trapped, and so is my husband! I really love his support, but I really want to be able to live fairly independently so he can just go to work and do other things he wants to do with his life without worrying how I am.

So, to anyone who has been suffering for a while, do you have any tips for coping with the uncertainty and fear?

Comments

Re: how do you cope with the fear and uncertainty?

Your story is very heart felt. The only advice that I can give is take one day at a time with a very positive attitude. Don't think so much about the negative aspects of your medical condition. There are days where I worry about having a seizure. I want to be seizure free but you know what I have learned to live with my Epilepsy. I have lived with Epilepsy for 20 years since I was 2 years old. I, too, want to be independent someday. I would like to get my driver's license back soon. That's my goal. Keep on giving yourself encouragement to get through the day. You can do anything as long as you set your mind to it. You are UNIQUELY BEAUTIFUL. Don't let Epilepsy take over your life. It should be something that makes you into a stronger person like I am. I love myself and you have to love yourself. ROCK IT OUT!!!!!!

I hope this helps you. :)

Re: how do you cope with the fear and uncertainty?

Thanks vivaci, yes, that helps me! I will definitely try some loud rock music next time. ;-) I was recently at a friend's house and had a bit of a brainwave - I was nervous about being away from home overnight, but felt that was silly - these friends are very capable people and oould undoubtedly cope if I had a seizure if I oould let them know one was happening. It reminded me of my fear of flying when I was younger - I knew it was silly: flying is a pretty safe form of travel. I eventually decided to desensitize myself by imagining the worst possible plane crash - in lots of gory detail - whenever I felt nervous. Sounds counterintuitive, but it worked; I think the fear came partly from my reluctance to think about it, shying away from thoughts of how bad a crash could be. I'm trying the same now with seizures; if I'm in the bath and nervous I imagine drowning during a fit, on the stairs I imagine a fall. Happily, a few nights ago I was conscious through a partial fit, so I have a much better idea of what I could do - I tested out various emergency systems I've set up, so I know I can do them; between that and desensitizing myself I seem to be making progress - I don't feel so nervous when I need to be on my own!