Struggling after encephalitis

Hi all.

I don't know what I'm after here really, just a chance to talk I guess.

I had encephalitis 18 months ago and am back to relatively normal life. On the surface anyway. I have been left with a long list of hidden things, mainly memory loss and chronic fatigue.

I'm struggling at work. I went back to my previous job and I've battled on for a year now but I'm sinking. I can't keep my head afloat much longer. I'm trying to look for something else and can write brilliant job applications when I have time to focus on them but when I go for interviews I just fall apart. I can't think on the spot like that anymore. I might as well not bother turning up for all the good it does me. It doesn't matter how much preparation I do before hand. But if that's how my brain functions now (or doesn't function which may be more accurate), what am I supposed to do?

I'm starting to get really depressed with it all and just can't see a way out.

Anyone have any tips or advice?

8 Replies

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  • Hi Sophie, I too am an Encephalitis survivor. I had it over 3 years ago and am still coming to terms with the fallout!

    I too have the fatigue issues, mymemory isn't too bad, except for the life of me I struggle with remembering books and films, plot lines etc. I can't shop without a list, but good on you for getting back to work, for me it wasn't an option.

    My sight is affected too, my optic nerves were damaged by the swelling, so I have peripheral vision loss on the right hand side.

    Are you a member of The Encephalitis Society, they can help support too.

    I have balance problems which I am hoping for help with, it is my inner ear evidently and I get feelings of intense pressure in my head which my Neurologist suspects are migraines, without the pain, I can cope if that's what they are but it's taken me 3 years to get anyone to offer a suggestion.

    So, the ahealthun

  • Sorry about that I have habit of sending of the reply before I finish, or losing the reply altogether! I was going to say, Headway 's helpline is a good port of call they can provide leaflets as will the Encephalitis society.

    The best advice I can give is be kind to yourself, you have had a very serious life threatening illness, it's going to sake some time for you to function any where near how you used to, unfortunately no one can say how long that will be, some recover faster than others it depends on where and how extensively your brain was damaged.

    Time and patience help a lot, be aware and work with the new you, try not to be too impatient, you will see those improvements happen eventually, but the thing I learnt was I was told it would take 2 years, not true, I expect to live this " new " life forever, but with improvements happening all the time.

    Take care

    Janet xxxxx

  • I know exactly where you're coming from hun, I returned to my job 5 months after suffering a TBI. For a good year I was doing ok and then I suddenly couldn't cope anymore and have handed in my notice. Like you I struggle to think on the spot, so am dreading interviews in the future. Memory and keeping up with conversations are affected to. I agree with Janet, seek help through your local Headway. Also apply for ESA, you can then get help to find a job more suitable to you now. That's my plan anyhoo.

    Jenn x

  • Hi Sophie, welcome to the site and I hope it helps you. Well done you for surviving a horrible disease and good on you for getting back to work so fast but thete is no way I could have done a job so soon after my ABI. You may look fine but it takes a long while to get over a disease this serious and you will not be able to do things you found easy before, frustrating though it is. Not sure if you have told your employers, this is a tricky one but if they are sympathetic they might be able to give you fewer hours or a less challenging role. Just be easy on yourself and reach out for all the help that anyone offers, fatigue is one of the most common after effects. x

  • Hi Sophie and welcome

    I suffered a collapse in Aug 2010 and was diagnosed initially with a virus, from which I didn't recover. I used to be a real dynamo but now live life rather more quietly, because the combination of brick wall fatigue, a wonky walk and vertigo/dizziness, aches and pains, and executive dysfunction left right and centre means that is what needs to be done.

    Put briefly, I have changed from holding a top position in a local council, plus sitting on the boards for a handful of charities to pootling about at home doing a few bits in the village and going to a board meeting of one organisation every once in a while.

    The transition was terrifying z lot of the time. Because we didn't know what had happened to me we spent a lot of time looking for answers. In the end I have come to accept the diagnosis of ME - and to see the past 5 years as useful preparation for whatlies ahead now that I have discovered I need surgery to deal with a brain aneurysm.

    But the key thing I want to say is that it is possible to get to a point where you are OK with the fact that life is no longer writ large, it just takes time to adjust. Allthe things that I used ti think were important and defined me are now gone, but my life is still interesting, productive, challenging, and happy, in fact it is actually happier.

    So please, don't see this as a long, dark tunnel with no light at the end of it. Rather you have flowered, turned to seed and fallen to the ground, from where you will push through to the sunlight and a new (different, but just as beautiful) life.

    Take time, find support, talk to those who have been there and come through the other side, give yourself some space to assimilate it all, and don't expect to feel happy about it all overnight - things, including this, take you longer with the new you. And good luck.

  • Hello and welcome Sophie,

    I was suspected Enceph 2 1/2 years ago ( never got a proper diagnosis ).

    I have been left with some residual 'glitches' ; memory and concentration issues, tinnitus, balance and some spasticity, fatigue etc.

    'Tis the 'gift' ( ? ! ) that keeps on giving !

    No idea how to speed your head up - both head and body go at their own pace and can't be pushed, in my case. Well done for going back to work but sorry it has not worked out the way you had hoped.

    I did manage to return on a few hours after 6 months but have been unable to increase hours much due to spasticity and physical fatigue - I am a cleaner/carer so it is unfortunate that my motor circuits got clobbered, given my line of work !

    However, the memory and concentration and thought fatigue would also make it difficult if I had a more cognitive based job - so catch 22 !

    With any brain injury, be it acquired or traumatic, the after effects can be life changing and you just have to accept that you may have some longer term limitations as a result and adjust your life accordingly. I made the best recovery in the first 6 months but do know that it is an ongoing process and may see further improvement in the future : )

    On the spot,my memory,word finding and stuttering can let me down so if I am struggling I find it best to be up front with whomever I am speaking - it takes the pressure off trying to pretend I'm 'normal' ! I can see why this would be an issue in an interview and a possible worry that if you declared your 'glitches' you might not be considered for the role.

    Perhaps you could consider part time hours or a less demanding role ?

    Your current employer needs to consider your disability rights.Please see link below :

    gov.uk/browse/disabilities/...

    Always nice to meet a new member : )

    Kind regards, Angela x

  • Oh, I should add that due to my inability to up my hours to 15 at my previous evening cleaning job after a fortnight's phased return to work, my employer, Lancashire County Council transferred me to another site, on a 9 hour floor, which is happily even closer to home and easier to walk to/from on the odd occasion that my partner can't drive me .

    My other jobs were self employed so I have gone back to 3 afternoons for 1 client who is only 2 houses down and given up the other more distant clients as I feel I have all that I can manage at present : ) x

  • Hi Sophie - my way out was Iodoral using Dr Brownstein protocol - don't forget the companion supplements x

    Been building up dosage over 10 weeks - feel amazing - still pinching myself to check its real!

    ALL my symptoms gone except for staying calm in high stress situations (like a bolting horse) like I used to be able to do -

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