To have some rest this morning or get up? Feeling really guilty now...

[Livingtothefull]

I suffer from epilepsy & woke up to the telltale evidence that I had had a seizure in the night....lost my memory (couldn't remember what day it was or what I was doing yesterday, which is always a really disturbing feeling), muscle aches & blood on the pillow where I had bitten my tongue.

I felt very disorientated and 'spaced out' and so my DH has had to look after severely disabled DS on his own & make his breakfast. He hasn't complained at all & even told me to stay in bed, but I feel guilty because of what is involved for him, just toileting and dressing DS is a huge task for DH to do alone, it usually takes both of us.

I am feeling a little better now & my memory is mostly back but am feeling hugely guilty about leaving my DH to get on with it. I am not 'ill' ill if that makes sense....this is just a condition I live with. I get these major episodes maybe every year or two, otherwise they are usually very slight. Because I am feeling better I feel I need to get up and pitch in, because I can function though really not 100% quite yet. What do you think I should do?

Be kind to yourself and take the rest you need. You and your DH are both your DC’s parents, you should be interchangeable.

If you don’t rest and get back to 100%, you’ll be much less use to your son today.

It’s just a sensible way of handling things to that you can both function at full strength.

You just had a seizure, chill out! You won’t help yourself or your family by pushing through and making yourself worse in the long run

Fellow epileptic here. Absolutely, unequivocally rest today. It's like having the worst hangover ever isn't it? Such a horrible feeling. I get confused and teary for much of the following day too. You can't pour from an empty cup - no need to feel guilty. If you broke your leg then you wouldn't consider walking on it. Listen to your body and rest. Thinking of you

Also when I bite my tongue to the point of bleeding in a seizure I have found that not speaking for the following day helps hugely with recovery - worth trying

Thank you all. I am still staying put at the moment.....definitely feeling better though still not back to normal.

It doesn't help that DS has been particularly challenging this morning, DH went out first thing to shop for breakfast things (before he new about my seizure) and DS woke and came downstairs. So that meant I had to come downstairs too until DH got back because it's not safe to leave him alone. I nearly fell downstairs, staggered back up to bed on DH return and left them to it.

I will try that advice about not speaking today youvegotten...although hard to do when DS seems to be trying to kill himself every 5 minutes. I had to stop him leaning out of an upstairs window already today so of course had to yell at him.

before he knew about my seizure

You poor thing, I don't have kids yet and often worry about having to be 'on' after a seizure to keep them safe so it's great you and your DH sound like a good team.

My therapist (I developed it after head trauma in a car crash at 30 so relatively new to me!) has helped me to think of it as a physical condition - which it obviously is, but because lots of the after effects are not visible (the total memory loss and confusion) it's easy to tell ourselves we should sort of snap out of it.

So do be kind to yourself and remind yourself you couldn't physically walk on a broken ankle and the after effects of seizures are just as out of your control. Ugh it sucks doesnt it!

As the parent of a severely disabled child - please rest. I can guarantee your husband doesn’t mind picking up the slack so to speak.

However, I also understand your feelings. I recently hurt my back (lifting disabled 5 year old) and felt so guilty relying on others, mainly my husband and to a much lesser extent my 11 year old daughter to take over the majority of her care. That being said, I reminded myself that when my husband had knee surgery 6 months ago, I totally didn’t even give it a second thought having to ‘do everything’ for a while.

My 5 year old has epilepsy so I appreciate the nastiness of it & how it can wipe you out. Resting is the best thing you can do, then give your husband a lie in one day once you feel up to it x

Thanks so much again for your support and sharing your stories, I know I am not alone having to live with this condition. DH has really stepped up & looked after DS today so I am fortunate, of course I will do the same for him if/whenever DH gets ill.

I am feeling a little better and resting downstairs with DS as he was getting worried about me & I need to reassure him. It is frustrating though as I have effectively lost one day of my weekend....I really value my weekends as I am doing a full time job too.

Most of my memory is back now though I am having trouble remembering login passwords despite using them for weeks. It's a horrible feeling...picking up a laptop to login and then realising the password I expect to be in my head just isnt there any more. Disconcerting doesn't cover it.

Well I ended up sitting with DS this evening to give DH a break as I felt better though still getting flashbacks. Now DH is trying to settle DS to bed....though he knows when we are stressed and how to wind us up some more.

I feel I want to go to bed now as am really tired....though I am scared stiff of having another seizure once I go to sleep. Waking up from these is so distressing and disorientating.

I am really suffering now mental health-wise....have long thought of myself as a strong person but my strength has well and truly run out.

My mum used to have night seizures occaisionally. The after effects could affect her for days and was often triggered by stress, burn out and illness. Look after yourself now for the long term benefit.

Take care op. You need to give yourself rest and time.

Thank you B33Fr33, I am sorry your mum went through that too. It is also my experience of how seizures are caused/aggravated. So I am trying to take care of myself though it is hard to do.

I know I need to take care and this is a warning sign that I will not be coping if I am not careful. But I need to just cope, that is the reality. It is hard because I work during the week then care for my DS at the weekend. We need to plan for DS future too.

I feel that I absolutely have to be strong to do what needs to get done, and I just don't. I feel that as one of the strong ones I need to be a giver but I just can't be. I can't leave it all to my DH, he has health problems of his own. I feel angry with myself because I thought I was doing so well and now it has all backfired on me. I feel so anxious that I can't think straight.

I am going unhappily to bed now; my fear will as ever be an unwelcome bedfellow. How on earth can I carry on like this? I want to just get on and deal with what I have to deal with in my life (severely disabled DC, full time job to handle bills etc - you can imagine what it is) without having to manage a gaping mental health issue too. There has to be a way to make life easier than this.

At times like this you have to wallow in self pity. It's a pretty healthy thing to do and then suck it up and get on with it. It's okay to not cope and it's okay to ask for help. Have you spoken to a GP? Are you claiming all the benefits you are entitled to ? Able to cut down a little at work ?

Sorry you are suffering

(Fellow epileptic).

Thank you WeWent, I have to accept the way I am feeling and seek help. The insidious thing I sometimes do is to be proud that 'I am coping, I can cope with anything life throws at me' when I really should be asking for help. I want to hold it together - I believe that in the long term I really am capable - but I need help right now.

Yes, I've always been the 'strong one' and find it can be pretty helpful at times to stop you from wallowing too much. But sometimes enough is enough and we need help.

Are you on medication ? Do you need a review if they are not working ? Any respite available to you via DC's social worker ?

Yes being strong and rising to the occasion is generally helpful but I need to recognise when I am too close to the cliff edge and seek help before I fall off it.

I am on meds yes which have worked well but they don't seem to be working well now. We have a number of carers usually but of course it is hard to arrange them at the moment (need to be carers DS knows but many of them are uncomfortable working during lockdown which of course I completely understand).

I read something that really stuck with me once -

You don't have to reach breaking point to take a break. You need to take the break before you reach breaking point.

As a person with chronic pain and a perfectionist personality, I stupidly feel I have to work even harder to 'make up' for my 'deficits'. This can lead to burnout as I work and work until I crash. Obviously it would be better for me, family and work if I took the breaks when needed, but I find it very difficult until forced to by crashing.

Thank you Pollaidh, I understand the compulsion to work hard to compensate for my imperfections....as though imperfection isn't part of being human. We need to embrace and accept it in ourselves to do the same for others.

I have taken positive steps today towards getting help. I actually feel a little better this afternoon and am tempted to just carry on.....but I think I need to follow through. I felt really unwell today and don't think I should wait until I have a crisis.