I'am afraid to loose a normal life

[travel_admirer]

Hello everybody,

Only today I matured enough to share my journey and ask/look for support, read other people stories because I am afraid to lose my normal, balanced life.

I feel lucky that I got only night seizures, so normally during the day I live my normal life. Unfortunately, I don't follow all of the doctors' prescriptions: I work late nights in the bar, sometimes I do consume alcohol, and smoke occasionally. I drank a bit bigger dose of medicine to prevent the seizures after that. I blame myself for that, but I have a desire to live like others do.

The last seizure was a year ago, and before that, 2 years ago. My seizures always happened while I was asleep in the morning, I was consciouss, just couldn't stop it.

It happened to me before, many years ago, I had strong "impulses" in my hand, which normally initiate the seizure. Nowadays, I just feel anxiety and panic from time to time, because I am afraid of seizures. Today I had those impulses before waking up and also during the day.

I am afraid, that the seizures may transfer to the day ones as well (I am not sure if it is possible). I am allowed to drive a car, I travel a lot, I have big plans for summer, so I am very afraid of losing everything, even if it would for some time. It's difficult to share it with somebody. Some of my friends partly know about my health problems, but I present it like not a big deal; to be honest, I try to perceive it like that myself. I can't tell my parents about curent problems and worries because they will be upset.

I feel like there is one friend I potentially could talk to, but he doesn't know anything about my health condition; he just knows that I meet my neurologist once in 3 months and that I consume some medicine. I don't want to meet with some pity or something similar, it feels like now I just want to share it with him, cause he can provide constructive support (FYI, we are just good friends).

Please, if someone has a similar seizure story or difficulties in sharing it, I would be glad if someone could give their opinion.

Thank You in advance!

[GillyA]

Hi travel _admirer,

Epilepsy is scary isn’t it? I’ve not had the same experience as you,but my epilepsy didn’t appear until my late 20s. My seizures don’t happen often, but when they do they are bad and I’ve been hospitalised several times.

We each find what works for us, but this is me. My first seizure was going home from work in one of the big London commuter stations, I woke up in A&E not knowing what had happened.

It took a long time to come to terms with, but following a second seizure 12 months or so later I realised I had to.

The first thing for me was hanging on to my sense of self and being determined not to let my epilepsy define me. I sort of box it in a corner of my mind and carry on pretty much as normal.

Then (apart from driving) I make decisions about what I can and can’t do myself, determining the level of risk I am ok with taking and just doing things. So I’ve traveled on my own, lived and worked in developing countries and had a great career. I’ll admit I do drink and that my sleep patterns are far from stable, due to work but I’ve decided that both of these are worth the risk for me.

With friends or colleagues, I’m open and factual, including telling people how to deal with a seizure, without over sharing. I’ve had seizures in very public places and with senior colleagues. I find I actually gain respect from most people and have had some real support over the years.

It is worth finding someone close to you who you can talk to and work through the emotional impact and discuss your fears (and I m sure the mods here can offer access to online groups if you’d prefer)

I know all this won’t work for everyone, and that I’m hugely lucky that my seizures are well controlled. for me though the first thing was hanging on to myself and not allowing my epilepsy to define me.

Very long, but I hope some of this helps.

[GillyA in reply to GillyA]

Oh PS, if you don’t drive, think about how much you (would) spend on it. Use that money, and don’t feel guilty about it, on public transport and taxi fares. Adjust your mind to the fact that it’s a core transport need not an occasional luxury. Disabled rail cards are great (a third off train fares in the U.K.).

[travel_admirer in reply to GillyA]

Thank You so much! It means a lot to me that You shared this. Sending all my love

[Shorehampete]

Hi.I know exactly how you feel. I was diagnosed with epilepsy when I was 50. I woke up from a afternoon sleep (I used to work shifts) and felt very strange and confused.

A few weeks later the same thing happened while I was in bed and my wife witnessed it and called the ambulance. The paramedics diagnosed me.

Like you I was determined to carry on as normal and apart from not being able to drive I returned to work.

It was later determined that I also suffer from sleep seizures and was allowed to drive again after 2 years. But quickly realised that working shifts made the seizures worse as did drinking and irregular sleep and being an old sod I stopped drinking and changed jobs so I can work normal hours and get my regular sleep.

I assume you're still quite young and want to enjoy your self which is understandable but please don't be afraid to tell friends and colleagues about your condition as it really helps to talk about it and most people are very understanding and if their not then do you really want to be friends with them.

I'm sure your friend will be honoured you have confided in them and do all they can to help.

Regards

[travel_admirer in reply to Shorehampete]

Your response is very supportive. Thank You for inspiring to share my experience with the closest people. I hope You are stable and feel good now!

[Shorehampete in reply to travel_admirer]

Hi.Unfortunately not but just about to start some new meds so fingers crossed.

Also you can apply for a free bus pass which is valid anytime in your local area and after 9am nationwide. All you need is a letter from the DVLA saying you have been refused a driving license because of your epilepsy. Definitely worth considering.

Be lucky.