Connecting

[Violet-flame]

My hubby had neurosurgery 20 years ago and all this time we have lived with his epilepsy, low empathy and mood and anxiety. He shouts a lot at me, has no life, energy, motivation or interest in changing his situation. I’d like to connect with others who understand how hard it is living with someone you love who feels broken. It’s lonely and sad feeling no one understands.

[Hidden]

Believe me - we do understand, it is a very difficult life. Have you managed to get all the help you can, particularly some respite care so that you can get out on your own sometimes? Has he been treated for depression? It sounds as though he might be suffering from it.

I must admit that I often arrange to go out to somewhere I know he would enjoy and insist that he comes with me - or I go without him. I do find that if I keep a life for me (meeting friends for coffee, going to events etc) and refusing to let him 'bring me down' afterwards, he eventually agrees to come with me (and usually enjoys himself - although he wouldn't admit it of course). It is not fair that his illness takes both your lives.

Keep visiting this website where you will get very good advice from those who REALLY understand what it is like.

[Violet-flame in reply to Hidden]

Hello exhausted! Thank you for replying. He is on antidepressants as well as meds for anxiety and epilepsy. I have a great life away from home, I work part time and run courses and workshops at festivals and travel a bit in Wales and England to do it. That usually keeps me fulfilled and gives me a break. But I’ve been adapting to a new way of eating since October, trying to heal an inherited autoimmune disease, which has been hard. I’ve been too exhausted and Ill to work and been home for almost three months now. At first he was happier that I was home more, but his moodiness and negativity have worn me down and I think I’ve realised over the last few months that I need support. I’m in my fifties now (menopausal, so moody myself!) and don’t have the energy to keep myself buoyant at the moment. It just feels great to read people’s sharing here and realise I’m not alone. I do appreciate your comment, thank you for your kindness. 😊

[cat3]

Just saying 'Welcome' Violet. I hope you'll find comfort here from those who also care for loved ones and often feel exhausted and isolated. Jan (exhaustedwife), among other carers here, has had some rough times caring for her man over many years but, like you, remains committed.

Stay around for support, ideas and virtual hugs...…….or to simply offload !

Best wishes and hugs, Cat x

[Violet-flame in reply to cat3]

Thank you Cat. It’s great to feel welcomed into a community where people know what you are talking about and share your experiences. The first hour or so of reading and watching videos here made me cry. I’ve felt isolated for such a long time and didn’t really let myself acknowledge that. I’m hopeful that this space will enable me to find ways to cope better and be more patient and loving to my hubby. Support, ideas and virtual hugs always welcome. 😊 xxx

[cat3 in reply to Violet-flame]

Oh blimey you've set me off now too Violet. But this forum has been my lifeline for 6 years now and I look in every day. See you soon m'dear. xx

[steve55]

hi i have a bi i suffer from epilepsy i also suffer from opd ie i can be really nice one minute and boom im gone, although im on medication, my psychiatrist says thats the way its going to be.

i hate noise, crowds, im rude. i dont know im doing any of this until my wife tells me off, oh yeh she wont put up with any of my bad behaviour, because she knows although i wouldnt think twice about thumping someone, i would never lay a finger on her.

she has a way of keeping calm, its simple really, she just strokes my wrist and talks to me in a quiet reassuring manner, its known as passive aggression. when she tells me off i jokingly say to her ...................im a vulnerable adult, im going to report you to my social worker........and we both laugh, because i havent got a sw.

steve x

[Violet-flame in reply to steve55]

Thank you so much for sharing Steve. I’m really quite jealous in a gentle way. I’d love to be able to get to that with my hubby. We have such a history of damage and wounds from just before the tumour was discovered that I think it has got in the way of our natural flow. For a long time the trust was broken between us. I love that your wife can calm you in such a loving, gentle and intimate way. Also, I love that she can tell you off. I know my hubby would never lay a finger on me either, even though many people are scared of him, he’s a pussy cat really. But I often walk on eggshells around him. I think I’m afraid of his temper. It’s almost a physical pain when he yells or goes cold in me. Sometimes I’m afraid that he will go off like a bomb and when he yells, or smashes things, or really gets to his max stress and anxiety I’m afraid he will have a seizure. Every time he has one (they’re very rare and have pretty much stopped now) I’m afraid he will never regain consciousness.

I’d like to try moving more towards him, rather than backing off. Your humour and loving relationship is very inspiring to me.

Thank you for your hopeful message. Xxx

[Paul72 in reply to Violet-flame]

Hi Violet, my wife has severe epilepsy but as you'll know it's a lot more than just the seizures, I see seizures most days unfortunately, my wife has had epilepsy since the age of 7 so over 40 years and despite us trying everything it's continued to progress. It can put a real strain on anyone's relationship as people have said the moods changes and drowsiness from meds alone can be a real problem. It sounds like your husband is lucky and on reasonable control.

[steve55 in reply to Violet-flame]

my wife is 5ft and a twitch im 6ft and could just breeze past her, but its been 7years, yes she trod on egg shells when i first had my bi, but when i saw her melt down in the gps surgery that hurt me. he referred me to a psychiatrist.

[Paul72 in reply to steve55]

I hope your seizures are few and far between Steve, you have a good sense of humour I guess that what's help me and my wife as she has severe epilepsy.

[steve55]

another problem with a bi is it makes you lethargic and easily fatigued.

i get frustrated trying to do things i used to be able to do, like reading, ive been reading the same page of the same book for the past 7yrs because i put it down and ive forgotten what ive read, so i buy dvds on the subjects im interested in.

something else that frustrates me, my wife and i can be having a conversation and ill forget the next word and its like give us a clue, the word is on the tip of my tongue but i just cant say it. i also find myself questioning whether ive spelt a word correctly.

steve x

[Violet-flame]

Apart from the book thing, my hubby experiences the rest, just like you. It is so difficult isn’t it? Si doubts himself all the time. Never trusts his brain anymore. Everything is different to before. Maybe you never get used to it. Are your seizures under control? XxX

[Hidden]

U say he takes anti depressant,meds for his mood. I knew someone had surgery had Epilepsy for yrs,cos she was depressed was given Sertraline by GP(in my opinion nasty drug!). She kept having blackouts-found out it was mixture of anti depressants and Lamotrogine. See GP's will just treat a symptom u go to them about at the time. Did a Neurologist give meds for anxiety/depression?

[Violet-flame in reply to Hidden]

I think it was his neuro consultant who proscribes the meds, but it may be the GP.

[magdolna]

Try looking in to neuroplasticity. It seems to make sense to me.

Norman Doidge M. D. Psychologist has written books about it.