To hate being epileptic

[Wellfuckmeinbothears]

Just that really. I’m so angry that I have it. It’s embarrassing. It feels like it’s ruining my life. My abusive ex slammed my head in the car door 5 years ago and I’m just so angry that I’ve been left with this lifelong condition. I hate the fits. I feel like they rob me of any dignity I had left. I’m happily married now and my dh understands, he is so supportive and helpful, but why does that awful man who did this to me get to walk around free from what he did when I have to live with it forever? It isn’t fair.

The moment a partner shows they can be violent or aggresive please leave. It won’t be a one off. It won’t get better. It’ll always get worse. There are charities who can help please just find a way out. I thought I would be ok, I thought I’d fix him. I didn’t. He broke me. I hate this. I hate that I’ll never be able to drive. I can’t make a phone call without twitching. I make cups of tea over the sink because it feels like an electric shock through my hands if I concentrate on anything. Yet he can. He can live as normal. I hate having epilepsy. It feels like it has me.

That's horrific

Please tell me he was prosecuted for assaulting you and leaving you with this lifelong condition ?

The night I left him I was only able to report what he had done that night which was only battery. I was told th CPS could only prosecute for the incident that made me leave. I’m sorry to say I stayed for 9 months after he slammed my head in the door. I testified and despite the fact they couldn’t prosecute for the extent of what he did I’m so glad I did testify. He got prison time and is on Claire’s law. I feel so awful that I didn’t leave then. He perforated my ear drum in time between him shutting my head in the door and me leaving. He was never remorseful. He made me believe I deserved it. It’s taken me all this time to feel angry. I’ll live with epilepsy forever but he served the time he was given and now he’s free to do whatever. It just feels so off.

I am so sorry for what you’ve been through. I hope you see that you are a strong woman for leaving and a brave woman for sharing such a painful story.

I hope you’ve had or are having ongoing support to deal with all this.
Take care.

I'm so sorry to hear that what that bastard did has left such a lasting mark.

I have epilepsy and although i keep a stiff upper lip in real life, yes, it is scary, unpredictable and sometimes humiliating. The side effects of the meds have wrecked my metabolism, memory and academic ability and the seizures are still frightening after 15 years. This thread is not about me but epilepsy has just seriously limited my career.

He hasn't broken you, you're still here doing the best you can. We just have to keep on keeping on and working with medical teams to try and get the care and medication right. Leaving him and reporting it and now sharing your story is incredibly brave. Remember that when you're feeling your dignity is compromised.

Greeny thankyou, that helped so much x

I'm so sorry you have this - my brother also has it after a head injury (blown up by the IRA). Try not to let it (or him) rule your life.

Look after yourself - healthy diet.
Make sure you have an epilepsy nurse from your GP - and use them; for both medication and talking.
If you're struggling, ask for talking therapy.
Get enough sleep - my brother always has an episode after lack of sleep.
Live your life. Prove to him that he hasn't ended it. You can still live well, you're just living differently. You have a long and wonderful life still to live, so live it.

I'm sorry. It is hard enough having epilepsy without acquiring it in such an awful and unfair manner. Chock has a good point about the epilepsy nurses, do you have a good team locally? I've always found mine really helpful, not just with advice but it helps me to "off load" to them.

There's probably no "advice" you don't already know but I hope the thread makes you feel a little better knowing that other people understand and empathise. I hate having lost my independence as I can't drive myself or the DC anywhere, I hate not being able to think of words or remember what I did or said five minutes ago and probably frustrating my family repeating myself endlessly, I hate not being able to bathe or swim on my own now, I hate the worry and fear of having a seizure and the humiliating and scary aftermath if I do have one, I hate bitten tongues and painful injuries and bloody awful post ictal headaches.

I don't want to make it about me either but wanted to let you know that I feel for you and that others probably feel just like us. I don't like to think of others suffering obviously, but it's comforting (god that sounds awkward and awful) to know that we aren't alone. It's very hard not to be resentful though and it's good to let it all out sometimes.

(Whenever I hear people saying being resentful or bitter is like drinking poison and expecting the other person to die, I always think "well clearly you have nothing in your life to make you that bitter, lucky you" which probably makes me an awful person and proves their point )

I hate it too OP. I was diagnosed 16 years ago and I still can’t stop feeling how unfair it it. No-one ever realises how mortifying it is to wake up after a seizure and I have found it hard to make friends as I don’t want to tell people.

Fortnite and Just you’ve both described how I feel so well, I’m really grateful for your replies. They’ve really helped. I feel so angry, I don’t want to have epilepsy! I’ve not had a lot of support, never even heard of an epilepsy nurse but I think talking to someone who understands would help. I’ve been on lamotrogine ever since it’s been diagnosed. I just hate it so much. I feel like I’ll never be me again.

And thank you Chock. I know you’re right, I shouldn’t let what he did control me. I’m lucky to be alive. I spent three years being choked out, raped and beaten. I’m lucky to be here. Remembering that helps x

Sorry to hear this - awful for you. Certainly might be helpful to see if there is a Specialist Epilepsy Nurse, as pp’s said.
The other thing I wondered (maybe ask in the Legal topic), is whether you could take an action against your abusive ex in the civil courts? A no win/ no fee claim for damages/compensation?

Blimey, I’m not suprised you feel angry and bitter! I bet anyone world. I’ve no experience of epilepsy but it’s sounds a right pain in the neck (metaphorically not literally!).

I guess you have counselling ?

I hope you can stop feeling embarrassed by your epilepsy, I don’t believe anyone would think you have anything to be embarrassed about.

No advice but best wishes for the future. 💐

Have you tried changing your meds to see if different ones would help control your symptoms better? I'm on a cocktail of three, all at quite high doses, but they control the seizures for the most part.

Epilepsy nurses vary by area - like most aspects of the NHS it's a postcode lottery. If your trust had them then try and get an appt.

Yes, having epilepsy sucks and I've had to come to terms that a lot of my dreams won't happen now. Mine came about as the result of a brain disease: nobody to blame just one of those things. I'm sure it's much more difficult when someone else caused it.

Am so sorry OP, that's fucking shit.

My niece has epilepsy, she is only 6. But the biggest support for my dsis is their epilepsy nurse. He did work in our local hospital, but transferred to the bigger city hospital last year and dsis switched their care to there. Don't forget you can do stuff like that, so if your local trust doesnt have an epilepsy specialist nurse then don't forget you can transfer your care.

I am so sorry to hear your story. You sound remarkably brave and a survivor. You are right, what happened to you is deeply deeply unfair.

I have no direct experience to share but could I just address the point of feeling embarrassed after a seizure occurs? When I was dealing with another issue, a very wise person gave me the wonderful advice to think about how I would feel if I were a stranger. In my case, it was to do with blaming myself about something outside my control but I think the principle could apply here to the issue of embarrassment that you feel. Think about before you developed the condition, or if you saw someone else experiencing a seizure. I bet my life you would not think that person had anything to be embarassed about. You’d feel concern and empathy, not scorn or humiliation. So if you can at all, please apply the same standard to yourself.

I agree with others that a supportive outlet to vent to would be a huge help for you. Ask your GP what the options are, whether that is a specialist epilepsy nurse, a medical social worker, some sort of counselor etc.

You sound so strong and self-aware and you write so evocatively in your post. I really hope you get the help you deserve to deal with this deeply unfair situation. Best wishes

Thank you all so so much for your replies they have helped a lot. I’m going to look into an epilepsy nurse, my gp has never even mentioned them. I think it’s accepting it in finding hard. There are things I won’t be able to do because I have epilepsy and I feel so angry! Maybe it’s him more than the actual condition I’m angry with. It still feels so raw x

Hi OP,

I’ve had epilepsy for almost 20 years now and for the first 8 years I hated it. It took over my life, the seizures were embarrassing, it affected my relationships, my career choices, the simple freedom of the choice to drive or go to a club at the weekend etc and the side effects of the drugs were crappy too. The whole aspect of having epilepsy is horrible and as a condition it rules so much of your life and influences most decisions you make.

I’ve been controlled now for almost 12 years now but even now it’s always there at the back of the mind and it still impacts on so much of my life. It’s an awful chronic condition to live with because the fear is ALWAYS there of having another seizure and the impact it can have on your life.

I’m sorry you’re feeling so down, I’ve been there and it’s a really shitty place to be.

The history of how you came to have it is horrendous and no wonder you feel so upset and angry. Life really isn’t fair

It makes me really angry that provision varies so widely and you haven't been offered any good support. Are you under the care of a neuro consultant as I think this was where my link to the epilepsy nurse team came from?

The team here have a helpline you can call anytime, and they call you back the next day (ofc any emergencies are for 999/GP) they can do things like adjust meds prescription over the phone (my seizures aren't controlled atm) and they write to your GP and copy you in (useful if you have to claim ESA/PIP - I don't know if you do?) They also are very empathetic and know what it's like. They also have regular clinics and give advice on how to improve memory issues etc. It's just reassuring knowing they are there.

I really hope you have the same service - I'm not actually that local to the hospital they are based at, its a neighbouring NHS trust. However I was transferred to their hospital from another following an inpatient stay after a seizure as they have specialist facilities. (Embarrassingly at the time I had a bit of a tantrum as I didn't want to be moved further away ) but they have been amazing and worth the extra travel time. I literally can't fault the care I receive.

Perhaps your GP/consultant/more knowledgeable MNers might know how to go about finding your most local epilepsy support/nurse team? IIRC I was moved to mine as it was a local centre of excellence or something.

Does your area offer a free public transport pass - mine provide one if you can't drive on medical grounds.

Sycamore I know what you mean about applying the same standards to ourselves as to other people, and I'm a relative newb to seizures but there is something (IMO) terrifying about having total blankness and absolutely no recall of something that has happened to you. It makes it really hard to deal with - plus there is the awful feeling knowing you have (in my case) wet yourself in front of your DH, whilst drooling saliva, and just losing total control of your body, and making them terrified for you at the same time. Add in post ictal confusion (I tried to convince DH there was a nuclear war going on the other week and have no recollection of this!) and to me, it does feel like a loss of dignity and humiliating.

Added to the loss of independence and freedom, can't drive anywhere, can't have a bath without someone in the house and it has a much bigger impact than I could have ever imagined post diagnosis. I think I assumed people just had seizures and got up afterwards but I was completely ignorant that there are after effects and knock on memory issues, and very unlikely but much scarier consequences. My ignorance embarrasses me!

It's really bad wellfuckme that you've just been left to deal with all this without the support you should have got. Feel free to PM me if you want details of my NHS trust etc although chances are we aren't near each other!

www.epilepsysociety.org.uk

These guys have great resources, worth a read and a phone call. My mum has been seizure free for 20 years now with the right meds. A lot can be done! Get epilisepy nurse support, referall to an epilespy specialist for a review (not a general neurologist).

My Dad walked my mum out of an appointment with locsl hospital 21 years ago, a friend found a wonderful NHS specialist in Birmingham (now retired sadly) made the 100 mile trip and he transformed my mum's life.

Until then...make sure you get your reduced price travel. My mum had a 1/2 bus pass all the way through until she was driving !

Morning all, I had a seizure last night so forgive me if I ramble or repeat myself! Feeling awful today, I don’t even rember having it. One minute I was falling asleep the next thing it was 3am and dh was leaning over me looking scared. I ache all over now and feel like I’ve run a marathon. I hate this! It’s always going to be like this though so I need to accept it and start looking for practical help. I’m going to look into the nurse thing because I definitely need more support.

I get ESA. £127 a week so just over £500 a month. I’m in the support group phase which means I’m not required to work. Which takes some of the pressure off as people don’t expect me to function at their level. But I volunteer at s charity shop which helps keep me occupied.

The circumstance that I got epilepsy contributes to how I feel about it a lot. I hate that I have a lifelong condition because he decided I wasn’t doing as he said. Ironically I remember it so well. He pulled over and dragged me out the passenger seat by my hair. He’d beaten my legs so badly that when I tried to get away from him they just collapsed underneath me. Then he slammed my face and head in the door over and over until the next thing I knew I was o ICU. Someone found me on the road. He left me for dead and I still went back to him. I couldn’t walk for weeks because my leg were so bruised. He smirked and said I hope you don’t expect me to be sorry or I’ll do it again. It isn’t fair, he got 6 a few months but this I’ll have this constant reminder forever.

Another epileptic here. Just wanted to send

Thank you Couderoy x

Sycamore I’ve hust re-read your post and you’re right. If I saw someone have a gif my response wouldn’t be to shame them, it’d be to help them. I think when I fit I must look ridiculous but i should grant myself the sane kindness I’d give someone else.

Sorry I meant to say I’m just under a neurologist. I don’t have any support in terms of how to live with this x