So far my moods are still off the the track. I hate being alone as i struggle emotionally with that. The immens boardom is unreal and causing anger issues. Keep being told i have the means to go out and do things . But they fail to underatand yes that does do something but it doesnt help with the need to have a social aspect the whole interacting with people. Just feel so isolated and its playing havoc. My mind is a mess and emotional outbursts. Working all those years to suddenly boom nothing no work all due to a cold sore virus taken the wrong turn and going up to the head . And icing on cake is i still have this chemical smell taste now monthly that causes vomit. When it happens
UPDATE mirtazapine updated to 45mg 3 times a day along with propeanolol 40mg 3 times daily
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Heavychunky1
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There is nothing worse than loneliness and/or boredom, that would also make me depressed. I had the cold sore virus the day after my first birthday, but I only discovered what it was 3 years ago when my dad informed me that someone at my birthday party had a cold sore I was being passed around like most babies do then I looked on the E S website and I saw it on there. However I can relate to depression and loneliness and I used to have anger outbursts years ago. I must admit it is really difficult trying to bottle it up because that only leads to more outbursts but there again I would sooner 'let off steam ' although I feel as though we live in a world where we are not allowed to express our anger or otherwise that might get us into trouble in a realistic world because no-one is allowed to lash out at anyone or swear, in which case I go straight to bed to try and sleep it off to save any hargy bargy etc . I'm socially isolated but I attend the majority of the Encephalitis Society virtual gatherings on Zoom most weeks and the monthly ones that is what you could do sign up for some.
I also play my CD's to keep me motivated. I don't know if you like listening to music. I have a close relative I talk to on the phone every day and a close friend who rings me every weekend.
If you live with someone that could be a bit of company if nothing else, but there again I don't suppose it works for everyone. If not, then maybe having someone you can ring up and talk to may it be a relative or friend that might help you. I know it's not the same as meeting them in person but it's better than nothing.
Hi Heavychunky1 - I’m sure everyone here agrees … it’s tough ‘getting better’ and coming to terms with what’s different, more challenging and needs changing. I’ve had conversations about feeling depressed today myself and if there’s anything I should take, medically, to help me feel better and more confident. I don’t get violent but I do cry sometimes and don’t know why. Maybe it’s the prednisolone I’m still taking - I don’t know, early days in the grand scheme of things. I don’t know what you take at the moment but maybe that’s something to talk to someone about? Ie. side affects of anything to take or medicines that might help. Also, I heard people say it’s a good idea to think about anything you can do to occupy your time; I appreciate some things are not as easy as they were before encephalitis but hopefully there are still things you can do to keep you engaged? As Paula-38 says, are there people / friends / loved ones around you who can also fill your time and give you attention? And is there anything you enjoy by yourself - for me it’s playing music.
Good morning hope you are well. I have been on various different medication from amatriptyline , sertralin , nortraline and prozac. My body has finally settled on mirtazapine 45mg which i have been taken well over 2 month now with no weird side affects. Talking to family and friends seems useless as they see it you look fine so get on with it. Which doesnt help. Partner doesnt seem to understand fully as to how much isolated i actually feel and sometimes only see her 2 hours on her work days. I have been through the whole punching brick walls lost multiple mobile phones and a computer, and then the insult to the encephalitis £240 to live on per every 4 weeks adds to the headache which probably doesnt help i still iver think everything
I know what you mean when you say people see that you look fine. I think that is one of the many difficult things about recovering from encephalitis - we can appear absolutely fine but it’s not so easy underneath all of that sometimes. Encephalitis itself is different for all of us, some even more different than others, which makes it more difficult even for doctors to assist with and friends and family around us.
But on the plus side, I personally think this group is so useful so we can hear from people who have gone through the same illness - even if it’s in different ways we definitely share some commonality.
Back to you, I hope you can share more of your thoughts and feelings with your family and friends and find things to do that will distract you from feeling very down - not that anyone should ignore feeling down but having people to talk to that really listen to you (even if they can’t “fix” you) and having things to do that you enjoy and feel able to do can help.
Everything you say all sounds very familiar to me. I too struggle with being on my own. In my case I describe this as my chronic insecurity - which I feel is also the cause of my daily struggle with anxiety. It was my 12 month anniversary last month and I still haven’t been able to socialise with most family and friends. I find it too exhausting having to pretend everything is OK. I had a discussion with my doctor last week about all this. We discussed medication and he sent me some stuff to read up on. Decided against it in the end.
What I’ve found the most useful is following other peoples advice on this forum to put a number of activities in place to form a “coping strategy” which I do on my own on a daily basis. For me it’s a mix of meditation, walking, jigsaw, TV, music - whatever works for you.
One other thing which I have found very very helpful is attending a group called “Andy’s Man Club”. It’s a weekly gathering where men of all ages meet and listen to each others struggles and try to support each other. The common challenge for all who attend is anxiety, depression and sometimes worse. Lots of crying and talking freely about what’s happening to you in life. It’s a safe place for men to talk openly. No one judges or criticises everyone just listens and supports. They hold meetings all over the country on a Monday evening 7-9pm. No need to book/register - just turn up. Find out where the nearest group is to you. I highly recommend you give it a go - it works!
PS - I think you said in a previous post you’re in the NE. If you are there’s an AMC in Newcastle, Gateshead, Sunderland and Whitburn. Also just to be clear I don’t live on my own but struggle when I’m left alone.
The whole being alone in house with own company is a brutal time i find and do struggle. Im relativly ok when everyones in even if there is no talking, a whole mix of emotions and anxiety is an added headache.
Hi. I’m so so sorry you’re going through this. The frustration that a wretched cold sore virus causes the havoc it does is real and something I think we all go through.. I know I have and very occasionally can still have a brief moment on a crash day. Paula, Remos and The Bass have all given you really good advice and based on their experiences, not those of people who even though they love us truly don’t understand what E does to our brains and mental health. I can’t add to their practical advice but being a lot further on than most of you except Paula-38, nearly 4 years, I can only say that all those feelings do lessen. I can’t promise they go completely. I still have anxiety issues. And I was a very confident person with a good job prior to this but now still have to pluck up courage to do new things, although once I’ve done them I can do them again with no worries!
My husband gave me a lovely ring last year with the words Woman of Courage and I think that goes for all of us. We’re afraid, frustrated,and know that unless you’ve had this no one really understands but we carry on and the light at the end of the tunnel honestly does come in time. Hang on in there. We all honestly do understand.
So sorry you are having a tough time of it! I am not too sure if I can add anything further of use but I found meditation really helpful just to "ground' myself. I had never done it before and was introduced to it on the fatigue management course that I was lucky to attend.
I listen to meditation sessions on my Fitbit app just for 10 mins and feel positive after. There are many free apps available online.
I am also considering getting involved in a community garden. These are all over the country, gardening is good for mental health and you can meet people from all walks of life. This wouldn't cost anything and you can go when you feel up to it with no pressure.
Is volunteering something you have considered? Maybe there is a cause close to your heart that offer a valuable opportunity to be able to get out of the house and socialise?
It is so hard to motivate to try something different when every day is a struggle but if you can it may unlock a fulfilling way forward.
Hi HC, sorry to hear you are struggling on such an uphill path. I find reading helps me, it's a quiet, private act and can be picked up and put down at will. Short stories are a good start, James Joyce being one of my favourite authors, there are many others.
Your local library, if there still is one, is a good start. I find TV and the internet can easily be too much. Winston Churchill is on my list at the moment along with histories of the Middle East and Islamic conquest, Voltaire, Greek philosophers etc. You could try writing - nothing to lose by having a go. You may find you have a secret talent and more to offer than you realise.
Me and my best friend have a laugh playing guitar and bongos. He's been through the mill of divorce etc. and knows all about rough patches. I buy books on Amazon rather than try the library due to mobility, availability and social interaction problems. The books do become friends.
Downloading NHS information on Enc, Osteoporosis and PTSD has helped me to comprehend the issues I'm facing. Some of my symptoms are side effects and that makes them feel less personal. Belching noxious vapours is one of my issues at the moment and I'm glad to know it's not me - just the drugs.
I printed out all the NHS information (about six sheets), stapled it together and give copies to friends and relatives. It helps them get the measure of what I'm facing. I only seem to have one friend now and he doesn't get uncomfortable if I have a cry sometimes. Another friend is more the 'it's all in the mind' approach. Mind you he doesn't say this when he's ill - Ha ha!
The more I sleep the more progress I seem to be making in brain repair. But there are setbacks with reduced immunity to infections like chest and UTI infections. In Leeds the rehab support is very good when it arrives - took 18 months.
Physio, Psychology, Psychiatry, Attendance allowance, Carer Support, Bus pass (plus companion) and Blue Badge parking pass are finally in place. Reduced Council Tax may also be available, your GP should refer you to a competent social worker who can arrange these things. A counseller can help to direct you to other help strategies. As I often say 'You have to be fit to be ill'. My wife helps with most of the form filling with me chipping in.
I hope this has been some help, best wishes and I hope things improve.
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Dark Moods
A very happy (and long-overdue) update
recovery update
Encephalitis Newbie - Seizures and Sports 
