Viral Encephalitis

[Ras9]

My husband is recovering from this and we are going through a tough time. Does anyone have any advice on the best ways to deal with the aftermath?

[Kirk5w7]

I am 6 years into recovery from this life changing illnee. What are his problems and ill see if i can help at all.

Janet x

[cat3]

Ras, please tell us more...…….. i.e. how long has your husband been dealing with the after-effects of his illness and what symptoms/issues is he struggling with. And how have you been coping ? It's helpful for others (like Janet, with direct experience) to have a clearer picture of your situation in order to relate to your problems and offer advice and/or reassurance.

Best wishes, Cat x

[Ras9 in reply to cat3]

Hi thanks for everyone's response it's been two years now and things seem to have gotten harder than before. He feels as if he's not the same person anymore and that he is a bad person who lacks empathy. He can be very snappy and fly off the handle or not see the most rational reason for something even when explained over and over again. I feel as if I'm always looking for signs he's had a setback or unwell again as it took a number of weeks to get him diagnosed. At one point they were going to give him a pace maker!!! It wasn't until he was seeing things it was eventually picked up on. We've had no support no after care just a neurologist who wasn't particularly nice and he's discharged now. He struggles with his memory, following instructions and fatigue. He is dyslexic and a year before the viral encaphalitis he had a stroke affecting his left hand which he's recovered from now. I am patient and understanding but feel I've lost my old husband and I feel quite alone at times. I'm not concerned about me at all just want him to feel better about himself

[Kirk5w7]

Im sorry my first reply was a bit short but this time of day is not my best. Have you contacted the Encephalitis Society, they are brilliant as are headway?

But if you share any specific concerns or areas i can help with i will be only too happy to.

My problems even now are fatigue, balance( my vestibular system is out of whack) I have lost some peripheral vision on my right, the swelling mainly affected the left side of my brain and around the cerebellum. I have been unable to work since the illness but i am retired now anyway, i choose not to drive because i feel my reactions are much slower now. My short term memory can be very patchy. Apart from all that im fine, oh no I forgot my kidneys have been damaged too.

All in all i think thats it, ive worked very hard to get back to where i am now and im still striving for further improvements.

Ill share anything i can with you so do reply.

Janet x

[Ras9 in reply to Kirk5w7]

I have contacted the society they send information and were very nice but that was it. They gave us Headway local number and my husband is going to contact them

[AliCathy]

I’m just coming up to six years after suffering from viral encephalitis, in the last year my visual memory has returned! Amazing to have such an improvement, in other words it’s time. Take it easy, I spent the first year attempting to get my energy and appetite back, not always a smooth journey. It’s not easy to cope with the up and down, recovery is very individual. Keep in touch, let us know how things are going, take care.

[CH56Twin in reply to AliCathy]

Hi AliCathy

I was amazed to read that you have had an improvement 6 years on from Encephalitis! Wow and congratulations. All the information I have had is that it is about 18 months to 2years that any improvement will show. Your post has given me renewed hope and even if nothing changes for me it is so much better to live in a world of hope than in a world of oh crap is this it then? Is this all? Thank you so much for your post -! made my day. Clare

[Kirk5w7 in reply to CH56Twin]

Hi Ras , improvement goes on and on as long as you are wotking on it, i have found improvements each year throuhgout my recovery, i am still hopeful tgat i could run again or drive. There is always hope as long as you keep working at it.

Janet

I had cause to ring the Encephalitis Society, you can join for no charge and they will keep you informed of ongoing events, they were very supportive when i needed someone to talk to.

[AliCathy in reply to CH56Twin]

Thank you; it’s lovely to get back the idea of being useful! Stay in touch and let us know how you and yours are getting on. Take care x

[CH56Twin]

Hello Ras

I too contracted viral encephalitis approx 2years ago. As others have said recovery is very individual and really does take time and it is slow. Please be gentle both with yourself and hubby - he will make a lot of mistakes and there will be a lot of misunderstandings. Please remember that any possible mis- behaviours are not intentional and hubby is seeing the world through different eyes. It will take time for him to understand where his confusions lay and to make the necessary adjustments. He will also fight this like billio. I know because I did. I still am. There is also at some point a sense of grief- the loss of the previous you when you finally realise that you are a different person to the one prior to your illness. This is tough for him and you. This whole experience is new for both of you - please remember to be kind to yourself. I wish you and hubby all the very best and please do not hesitate to come back to this site for whatever reason - information, support, sharing of ups and downs or just a damned good moan. We do understand. Take care Clare

[Ras9 in reply to CH56Twin]

Thank you for your kind reply

[kundalini]

Send me your email please. I will send you my healing energy CD. I will send it by email. If you don’t have a pc I will need your postal address. And I will mail it to you. No charge. Dave

[jane1572]

Sorry to hear of your situation. I know of a centre called ‘The Oliver Zangwill Centre’ they maybe able to help. You can get a NHS funded place through your gp. Google them. A group of Psychologists, OTs etc who help with psychological effects of brain damage. Best wishes

[Ecojackie]

What he is experiencing is very common. The healing journey is up and down, very uneven. Injury to the brain has serious consequences. I'm two years from my accident induced stroke and TBI. Some days I feel terrible and others - wait a minute - I feel terrible most days. If your state has legalized cannibus, try the edibles. They help me,especially the lemon-lime cannibus infused carbonated drink. Take care.

[Ras9 in reply to Ecojackie]

Thanks for reassurance, we are not at the stage of doctors handing out cannabis it was just recently legalised in this country for a boy who had severe epilepsy. I'm hoping he doesn't have to resort to drugs but gets better with other support methods. I suffer from chronic pain on the other hand ha ha so who knows I may be tempted.