I have non epileptic seizures due to the brain damage caused by HSV1 encephalitis, about 2 weeks ago I had a long fit and was unresponsive for over an hour, so my husband phoned an ambulance and my mum. My children were in the house and the paramedics were giving me oxygen as my levels were really low and put in two canulers and dose of diazepam to bring me round.
My son came in as he thought I was dead. He’s really struggling with my fits and drop attacks. I’m trying to get him some help for the trauma he’s gone through and to talk to someone about how he’s feeling since I’ve been ill, his life has been turned upside down.
I was taken off to hospital. I thought my husband would have been my rock as things up to that day have been great recently and I’ve felt supported and that he cares. However since then he’s been acting very strange, distant, argumentative, short tempered with me and the boys and unsupportive. It feels like Work and money are more important than helping me. I require a lot of daily support and he’s just not helping. When I ask for him to do anything he gets annoyed. We have had past relationships problems 2 months after we got married I found out he was cheating on me and I forgave him and have tried to put it behind me. But when he gets like this it makes me feel very insecure and bring up past troubles. I already have very low self esteem especially since the encephalitis, I’m 32 and he’s 28. Life definitely isn’t how I hoped if would be so I doubt it would be one he’d have chosen if he knew what was ahead. I’ve lost my independence, can’t work, can’t care for my children alone any more.
He’s just making he feel so alone and unloved and more of a burden than his wife. We are young but I definitely don’t feel it. We should be enjoying life. I don’t have any friends to talk too, the friends I did have I speak to very occasionally.
Sorry to rant, I hope you all are making progress in this terrible fight.
Thank you x
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Lottie1706
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Hi Lottie, I'm sorry to hear of your difficult time. My wife and 2 kids (23, 28) are often not very supportive. I need their strength and support but it seems like they just run out of it and they don't have any more left for me. My kids mostly ignore me as if I was invisible. I need my wife's continual support and help but it often feels like I've used up all that was available for me and there is nothing left. When that happens, she gets argumentative, distant, and short-tempered.
I took a "family photo" the other day. It is a photo of 3 closed doors. Each of them in their rooms with their doors closed while I sit out in the other room alone not wanting to be a burden to them.
I'm lonely living in a house with 3 other people.
I know they don't understand what it is like for me. I've gotten comments like "you should be over that by now!" as if I am recovering from a broken leg. I am just past 2 years from getting out of the hospital after a 2 month stay for AE. During that time I've gone through a lot. I know my wife has been through a lot too, I'm sure a lot more than I know, so I give her extra time and patience and try to distract myself when I am feeling bad. Usually after a while, sometimes a long while, she will be feeling better and have more time to share with me.
Now is also a difficult time in general, a pandemic, potential or current financial problems plus everything else can put anyone in a bad mood. Hang in there and try to stay as positive as possible. Remember that things will get better.
Hi Archer6, thank you so much for taking the time to reply to me. I’m sorry to hear your struggles too. I too feel like some people expect me to be over it and that life moves on. Overall I’m very lucky for the support from my family it must be very hard for them too, it’s a life changing illness for everyone. I just feel so unwell every day and the smallest of tasks feel exhausting and takes everything I’ve got, so just need some more support and understanding from my husband. Wishing you all the best.
Hi Lottie - I am so sorry to hear about everything you've been going through and have been through.
Firstly, I'd like to say - none of this is your fault! You didn't choose to be sick and no matter how anyone treats you.. you should not feel guilty for their reactions to what has happened to you. As much as your husband has been through a trauma you have equally been through a massive trauma and have to face the effects of encephalitis every day. I am so sorry your husband isn't more understanding.. you need and deserve support.
Unfortunately, we cannot control how others behave or feel which I understand is frustrating. However, we can help ourselves. Have you contacted your doctor or GP about what has been going on? They may recommend a counselor or therapist which I personally have found really beneficial to deal with my own emotions and secondly, understand other people's reactions to my illness.
This might be useful to read about how family dynamics can change after encephalitis and how it's completely normal and okay! - encephalitis.info/social-co...
It might help to talk to others and The Encephalitis Society offers virtual gatherings via zoom - encephalitis.info/blog/virt... I personally find them really helpful!
I find it helps to know I am not alone. The Encephalitis Society has a Youtube channel and I find it good to listen to other peoples stories of encephalitis - youtu.be/VHmf0hTGbo0
For me personally - I have experienced difficulties in all aspects of my relationships post-encephalitis. From my partner suffering depression due to my illness and I felt extremely guilty for his mental health difficulties, I have come to find that it is not my fault he is struggling and it is not my responsibility to fix everything. You are going through so much as it is dealing with encephalitis and its after-effects... it's important to remember to look after yourself. I have found therapy, mindfulness, and doing things that make me smile such as baking, painting, or going for walks have helped me focus on myself and my own recovery!
We all understand you and what you are going through so thank you so much for sharing your story. We are always here to listen, understand, and hopefully offer some comfort and support!
I hope things get better and as I always say - "Everything Passes"
Thank you so much for getting in touch and your lovely words. I will definitely look at the links you have suggested.
I was seeing a counsellor prior to covid and it did really help to talk through things with him.
I do use mindfulness and breathing apps, when I’m struggling. And my mum has always told me you can’t control other people’s actions. I started doing some drawing and painting which I find nice and relaxing and something for me.
Thank you Ocean96. It’s really lovely to have a message and not feel so alone.
Unfortunately my counsellor has stopped all sessions but does reply to an occasional email, it’s nice to write things down but definitely not as beneficial to me as when I could speak to him.
Always! This is a great community to chat and let it all out!
I'm really glad you reached out I'm sure there are other people in similar situations. Another thing that may be helpful in keeping a diary is a safe place to let everything out. I'm sure if you contact your doctor they will be able to direct you to an online counselor if you would like to see a different counselor!
Thank you! All the best and I hope things will get better!x
Thank you. I’m definitely thinking contacting the doctors would be a good thing if they can offer me any support even if it’s online that would be amazing. A local anxiety group is meeting in person on Wednesday in a local community hall, covid compliant. I really want to go but I am quite nervous.
Thank you again for all your help it’s really appreciated. X
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