AIBU to be scared to leave the house?

[Clumsywith2leftfeet]

Posted before but changed username so not recognised....
Sorry for the long post. I was diagnosed with Epilepsy 9 years ago and had several years of changing between medications and dosages to find some level of control of my seizures (tonic-clonic type of seizures (loss of consciousness, body jerking and shaking)). In the midst of this DH lost his job due to the time he had to take off and became my carer for 7 years.

Fast forward to this year and after almost a year of relatively good control and almost only night time seizures, DH returned to work, I started cycling and got my long lost independence back, got fit and was feeling "normal" again.

Then things start becoming stressful, DD (15) starts going "off the rails", getting into trouble at school, running away from home when grounded etc. We have a nice break for the summer hols and DD settles down again.

Back to school, DS(7) in first week back badly breaks his elbow poor little guy, in a freak playground accident and needs surgery. He was so so brave and all went well and he's recovered brilliantly! Then DD starts acting out again, in trouble at school, and then starts skipping school altogether some days and my stress levels ratchet up even further (I'm in no way comparing DD choice of awful behaviour with DS accident. They've just both have been stressful. She can help it...he couldn't)

I can only assume this is what has triggered a recurrence of my seizures in the last month and they have been gradually getting worse. Last Thursday having discovered DD skipped school AGAIN. I went out cycling to burn off my anger and frustration but I had a fit whilst riding my bike (thankfully on a cycle path in a park) and luckily only suffered a concussion but now I'm petrified of going outside! I haven't been out since I got back from hospital last Friday evening and now having daily seizures so spending most of my time on my bed surrounded by pillows. I feel helpless. AIBU or am I just being silly and just need to find a way to snap out of it?

I so want to get out on my bike again but feel paralysed by fear!

DH being fantastically supportive but feels as helpless as me. Doctor trying to get me seen by neurologist but 5 month wait!!!!! So she's trying to get some assistance from them by phone to possibly change my meds.

Oh Gosh. I don't know how to help but just wanted to say I don't bloody blame you at all.

I'm not surprised you're scared of going outside, I'm sure I would be too.

Really hoping the doctor can help find a balance of medication that helps. And I hope your DH has read DD the riot act for adding to your stress levels.

Honestly, I used to behave like your daughter when I was 15 and what she’s doing is crying out for help. I don’t think it’s entirely her fault why she’s behaving like this, no one behaves like this out of the blue. Instead of being hard on her Maybe try talking to her and try having a girls night in to discuss things and get to the bottom of it as you stated when you had a nice holiday she was much nicer... she probably bonded with you more and probably got upset when your Ds broke elbow and felt as if he was receiving more attention than her. I feel like it’s stress that brings on your seizures? Even though I’m not a dr so could be mistaken but if you get to the bottom of things I feel you’ll feel much better and have the confidence to get back out

Are you sure it’s epilepsy?

I know this sounds strange but a good friend of mine was diagnosed with epilepsy- she had fits etc.

Turned out it was something different triggered by stressful events. The initial trigger was a traumatic medical event. Whenever she had stresses in her life it came back until they worked out what it actually was.

I don't think you are being silly at all, I cannot imagine how scary that must be to not know if a seizure is going to come, . I hope your GP can get you seen earlier so a change of meds can be trialled. I am not trying to excuse your daughter's behaviour but does she in some way see herself as responsible for your worsening epilepsy?

GreenFingersWouldBeHandy
Thank you. DH did indeed...she acted all like her being blamed was so unfair and hasn't changed her ways at all. So frustrating as I did not bring her up to behave this way and she used to be such a kind caring girl who would go out of her way to help anyone with anything. The day I was in hospital instead of going to school she took herself to Minor Injuries as she apparently punched a wall as she was so angry with being blamed (MIU confirmed there wasn't anything wrong with her hand) and there wasn't a scratch on it

You and DH need to Sit down and explain to DD that her behaviour is causing stress and seizures.

@tractorgirlz that is such a silly idea. How could you tell a child that? That literally sounds like emotional abuse.

Clumsy, I perfectly understand why you are scared of going out at the moment. Here is an article about stress related epileptic seizures:

www.epilepsyresearch.org.uk/about-epilepsy/seizure-triggers-in-epilepsy/seizures-triggered-by-stress/

You probably overdid the long cycle ride, a more leisurely paced and shorter one would have sufficed.

Most of all, for the sake of your health, you really must learn how to chill out and be less stressed.

Your daughter is like a lot of youngsters her age - I was like her. Quite honestly if my parents hadn't made such a big deal out of my 'bad behaviour', and trying to make sure no one thought it was their fault, I'd have outgrown it quicker. As it was, I just wanted to get away from home as soon as possible and used to run! I was the scapegoat for everything that went wrong and it seemed so unfair.

Let your daughter do her own thing as far as possible (she isn't a bank robber :-)), and chill. I'm sure you know relaxing breathing techniques. Take your time over jobs, eat tasty meals, listen to relaxing music - and remember your daughter will very soon be an adult.
Have a laugh with her sometimes, she'll appreciate that.

Gentle exercise for the time being.

If you are still having seizures in a week or two, do go back to the doctor.

& just one

Iggly
It was considered that I was having non-epileptic seizures, but and EEG confirmed Epilepsy...even so stress is still a trigger.

Bluerussian
Thank you...your words have made me feel brighter. I do so feel judged by my daughter's behaviour sometimes. Interestingly she did work experience at a Hair Salon in July, and got a Saturday job offered to her and knows she wants to be a hairdresser and start an apprenticeship next year so am hoping that knowing her goal will help her through the last couple of terms of school and her employer speaks so highly of her.

She will only talk when she wants to talk and she knows where I am and she knows she's loved no matter what. I always tell her that when I get angry with her actions, it doesn't mean I love her any less and we all know most of it is almost certainly attention seeking (we don't tell her that) . Her older sister had a baby in February as well.

I use the Calm app to do mindfulness things and breathing exercises etc. I have tended to fall back onto the cycling most of the time as a stress reliever as it's so enjoyable and freeing.

My daughter has been through a lot (that's a whole other story for another day) and she's never coped well with emotions despite having had quite a few "counsellor" type people work with her. It's not an excuse for her behaviour as a Nurse once told me she's old enough to know the difference between right and wrong and be responsible for her actions, when I was blaming myself.

You and DH need to Sit down and explain to DD that her behaviour is causing stress and seizures.

Don't do this. You as an adult are responsible for your own stress levels. It is not okay to put this on a dc, however badly they are behaving.

There are a couple of different issues here. One is you going out and your anxiety regarding that. I have a friend with epilepsy who finds their support dog invaluable, would this be a possibility?

The second issue is your dd. What support is she able to access? The pressure of having to be good to keep mum well shouldn't be underestimated. Is it possible she sees herself as a young carer at all? This can also be challenging for young people.

Your dd is obviously causing you stress but I am wondering if she is a little scapegoated at times, albeit unintentionally. DH and DS both get rave reviews in your OP. Her behavior isn't great but it doesn't sound truly terrible either, is it possible that it attracts a more significant reaction from you than it maybe deserves?

I feel your pain as I have tonic clonics, a DH on the verge of losing his job through absences and DC that are...hard work.

Firstly, I would concentrate on you, putting the rest aside for a moment. You are definitely not being silly and I understand. But you need to leave the house and you know it Could your DH go with you the first time you go out, even for a walk round the block? Once you get over the "first occasion" it may be easier. Start with small local outings and build up perhaps. The worry is a vicious circle isn't it?

A five month wait to see the neurologist is very long. Do you have any nurse clinics or epilepsy nurses? Otherwise is it worth ringing the consultant's secretary, they may be able to get you in on a cancellation spot etc? Mine are usually a bit quicker if you have had seizure related injuries as obviously the knock on effect to A and E etc isn't good.

With regards to your DD, I don't think they ever stop causing you stress in some form - the thing about you only ever being as happy as your happiest child rings true for me! Obviously there's more back story and possibly worth a separate thread ? I keep telling myself that there are no excuses for bad behaviour but sometimes there are "reasons" which can be unpicked a bit. Having a Saturday job might be very good for her, I've found as they are treated as "adults" (more or less!) they do grow up a bit and sometimes realise when they are being immature.

Would your DD cycle with you? It might be nice to have something just the two of you, and you would have company.

Oh and definitely don't tell her that she is causing you seizures!! (I'm sure you wouldn't anyway).

I know my DC do worry about me, especially if I sleep later than usual etc, they always like to check I'm not post ictal, so I don't have any words of wisdom on how to deal with it, just to say that it may be worrying her - she may feel too old to ask for reassurance, but it wouldn't hurt to see if she will speak to you and unload any worries.

It's a shame we can't drive as I always found sitting in the car was the best time to talk to teenagers - I think the lack of eye contact/pressure and the feeling it was just a chat rather than a sit down talk, helped.

My mum once told me my behaviour (normal teenage rebellion, nothing extreme) had brought on her chronic illness. It absolutely destroyed men As an adult I now understand why that was utter nonsense, and as a parent I now understand how cruel it was of her to do. I've never forgiven her and I don't know that I ever will.

You say your daughter has been through a lot. She's reacting to this in the same way as you not wanting to leave the house is a reaction to your accident. It's not logical, it's not helpful, and it's tough on those closest to you, but it's very real. And while you're an adult and you can take the steps you need to take to get through it, your DD doesn't have as many tools to do that yet. She needs help and compassion, not blamed for something that is absolutely not her fault.

I'm sorry for everything you've been through but please stop blaming your daughter. It's cruel.

Also your DD punching a wall and taking herself to MIU is a classic cry for help. Her mum was in hospital, she was scared, and she'd been blamed for what had happened. No wonder she reacted.

I'll be the first to admit DD gets often overlooked. Not playing the blame game here as sometimes I've been guilty of it. DS due to age needs more of my time for some things, especially when his arm was in plaster, but her Dad and I divorced when she was young. He is blatant with it and he has always had a habit of dropping her home if she becomes too much like hard work. Saying...to her... I'm washing my hands of you! Hanging up on her on the phone, cancelling plans with her etc.

I did manage to get her cycling on holiday, but she refuses to be seen dead cycling with Mum at home...someone she knows might see her...the horror!!! Everything revolves around how her peers perceive her at the moment! I understand to an extent. I wasn't like that as a teenager but knew many who were.

Definitely would be easier if I could drive, less pressure to talk, and could do it on the way to some of the places she wants dropping off. Unfortunately she has to ask DH (which isn't the same even when I go as it's not girl time) or her Father...who let's her down.

I remember thinking once that when you become a Mum you are prepared for the nappies and sleepless nights etc but nothing prepares you for the worry that you have every single day of your life for your children.

Teenagers are selfish, but they do grow out it. I don't think you should be judging her behaviour at the moment as it is right on track. You cannot put the blame on her for your seizures, that really is abusive.

As you are the adult, you can't say she knows where I am if she wants to talk, it's your job to support her and part of that is engaging with her even if she has really pissed you off.

Understandably you are stressed with the situation and you need to find a way to cope, because her behaviour will not be any better for a while yet, it is not your fault and you really can't control her, all you can do is give advice and let her get on with it and learn from her own mistakes. The more you try to control her the more she will rebel.

Maybe try speaking to her as an adult and ask her about her feelings and thoughts and really listen.

Try to go out with someone soon as the longer you leave it the worse it will become.

Really hope you find a way through.