To Hell and back plus custard creams ... - Encephalitis Society

Encephalitis Society

To Hell and back plus custard creams and tea

Gandalf2
Gandalf2

Hi to all my ABI friends!

It’s been an interesting year for me, as a retired 71-year old I thought I had experienced most of life’s ups and downs. But No …..I started with auto-immune encephalitis seizures in March 2020.

Wondering why I had not appeared one morning, my wife found me naked in bed with all the bedding strewn around, my face covered in blood and faeces on the sheets. My eyes were rolling and I was incoherent and semi-conscious. She called an ambulance and the paramedics quickly arrived, saved my life with oxygen etc. and whisked me to hospital with sirens wailing and blue lights flashing. All very exciting and astonishing for my neighbours.

Strangely, I have no memory of this, remaining unconscious for about 2 weeks, until I woke up on various drips in an acute ward with 24 hour supervision. I was suffering from the Capgras delusion which in my case meant that I thought all the doctors were impostors, aliens modelled on TV actors and that my spinal fluids were being extracted with the purpose of make more humanoids to take over the Earth.

Not my usual Sunday.

Once I came round and accepted I was seriously ill with encephalitis things started to make some sort of sense. I've had about five seizures so far and they can be very dangerous and disorientating, clocks seemed to be going backwards, the ceiling was falling in, the wall was the floor and my bed was glued to the wall with me somehow trapped in it.

I was convinced I was in control of the Universe; and that I had created it and everyone and everything in it by a single Divine thought. If I lost concentration I was sure it would all collapse into nothingness. It was hard to explain this to staff and very difficult to keep the Universe intact and running smoothly at the same time..

I eventually adjusted to being ill and being in hospital, made friends with a couple of guys on the ward with similar problems, got mobile and exercised every day by walking up and down the ward for an hour or two. A one hour walk equals about a mile. By eating salads and exercising I avoided becoming constipated and losing mobility and balance and was classified as 'independent'. The arrival of food and drink and a cheery 'Good morning sweetheart' from the staff were of inestimable value. I was not a tea drinker before entering hospital but tea and biscuits became a real treat, my favourite being custard creams.

After a week or so I had a shower and shave, both of which I had to relearn/remember. The staff were incredibly caring, understanding and helpful encouraging my gradual recovery and independence. My wife dropped off some essentials, pyjamas, slippers, dressing gown and fleece blankets, (the ward seemed very cold to me and I would be shivering at night). The staff prefer it if the blankets etc. are freshly laundered or in original wrappers to avoid infection, a fleece dressing gown doubles as an extra blanket. The main after effects of the encephalitis and seizures were short-term memory loss, confusion, tiredness, loss of sense of taste and smell and joint pain (especially in my spine which had suffered several compression fractures during my hospitalisation - I suffer from osteoporosis). It seemed I had been quite violent during my last hospitalisation and had to be sectioned and sedated.

There were televisions on the ward which were the ‘pay per view’ type. I couldn’t watch TV as I couldn’t maintain concentration or interest in anything for more than a few minutes. The noise when several TVs were running and a couple of Skype family calls was unbearable. Headphones were available but no-one used them. I used silicone earplugs to get some peace or relaxed in the day/quiet room if nobody was using it. We were allowed out onto a rooftop terrace but only if accompanied by a staff as chaperone - but spare staff with twenty minutes or half an hour to spare was a lot to ask. Walking up and down the ward for an hour or two seemed the only option for exercise and reading the best form of relaxation. I can recommend James Joyce's Collected Short Stories.

The more independent, coherent and mobile you are the sooner you are released but coping with the outside world was another matter. I was unable to hold a conversation, forgetting what I was talking about before the end of a sentence. I’m always saying “Have I already told you this?”, “What day is it?” and “Have I had breakfast?”. You have to see the funny side and not become distressed.

The internet has been a great help, there’s tons of stuff to research but one does have to be selective and not get carried away with someone else’s delusional ravings, I’ve had enough of my own.

It’s been a year now and I still suffer from tiredness, funny turns and a lack of energy. I’m less mobile than I was on the ward and can’t go out on my own, but must avoid contact with others re: Covid. Which seems to be the word on everyone’s lips at the moment. I won’t be having the vaccine as I’ve had bad experiences with the flu vaccine in the past. One seems to tread a lonely road at times. No cycling, driving, sailing, solo walks and hikes, foreign travel, climbing up ladders, general risk taking etc. 'for the foreseeable future'.

My regular prescription includes:

Slow release morphine sulphate

Morphine sulphate solution

Microphenolate

Rizatriptan

Hydrocortizone cream

Lansoprazole

Fluoxetine

Levothyroxine sodium

Colecalciferol

Levitiracetam

Alendronic acid

Ibuprofen gel

Paracetamol

(Easily a full carrier bag)

I’ve noticed that if I receive too much stimulus in the form of visual, aural or mental stimuli I sometimes feel vertigo and have to sit, or preferably, lie down. This lasts only a few minutes but makes leaving the house somewhat of a gamble. On the ward surrounded by carers and within reach of a bed or chair one feels much less vulnerable. I've led a very active outdoor life for most of my time and it’s odd being confined to house or bed. Thankfully I have a garden to sit in and once the weather gets warmer I’ll be out and about more.

In common with most sufferers I have lost my sense of taste and smell and can barely tell the difference between foods and drinks such as coffee and tea. As a result my appetite is reduced and I can’t face a full meal, salads and home-made soups being the most usual fare. Just how long all this will last seems unknown and I get the usual answers - “For the foreseeable future”, “Hard to say” and “We’ll have to see” is all that can be predicted. You have to laugh!

All in all, it's been an amazing experience but not one I would wish on anyone. I don't see how I could manage without the support and encouragement of my wife (who handles all the appointments, tests, scans and phone calls). Without her I'd be in a rehab unit and face an even more uncertain future, God Bless her.

Thank Heaven for the NHS!

Best Wishes and a speedy recovery to all,

Gandalf2

11 Replies

Hi gandalf

Your doing a great job, its hard and some days you just want to give up, but don't keep fighting! Also your delusions are near exactly the same as mine which is strange, they would move my bed and it would be up against the wall and the staff scared me I thought they was taking my blood for tests that wasn't normal, its just so scary to experience that and think wow your brain does so much for you that we all took for granted or underestimated! I'm glad you have your wife supporting you because its sooooo important to have someone there! 😇

Gandalf2
Gandalf2 in reply to Kate0090

Thank you for your reply :-)When your brain tells you 2 plus 2 make 5 and that friend is foe - what next?I'm amazed that the body and mind have the drive and ability to recover and get well again. Mind you without the medications and medical expertise I'd be long gone. Life is fascinating and mysterious - where, why, how? Wonderful stuff!

Kate0090
Kate0090 in reply to Gandalf2

I know it sure is mysterious, but you made it through which itself is great, its a long road to recovery but what your going through is normal and don't rush yourself x

Thank you for sharing that Gandalf2. You are so strong and very motivating. We're with you all the way 😃

Gandalf2
Gandalf2 in reply to Elle2090

Well thank you for your response. It's been an amazing experience but I really don't know how people manage who are of working age without support. They are the strong ones in my opinion, especially those carrying family responsibilities.I had some difficulty spotting my house and recognising all my possessions, clothes etc. but remembered things gradually. A bit like a 'trip' (I lived through the 60s).

After a long and productive working life I have a decent pension, a nice house and an understanding and caring partner. I've always been a saver rather than a spender but without free prescriptions and care on the NHS I'd have nothing left.

We never know what's round the corner and I'm glad I had all my adventures and escapades whilst still young.

Things are somewhat restricted these days but a sunny day and birdsong is a big treat - - and free! Hurray for the Universe!

What and incredible testimony! Thank you for sharing your story so bravely. You have a great talent for writing. My wife is recovering for AE currently after spending some months in the hospital last year and we can definitely relate to many parts of your story. She is doing very well now and getting back to her normal self slowly but surely. Wishing you the best too in your recovery journey. Thank you and God bless. from Amsterdam :-)

Thank you for your positive feedback, yours and other's have made a big impression. ABI is pretty rare, can be very lonely and personal support is crucial. I found it a very slow recovery and easy to overdo one''s expectations. The Covid epidemic? and lockdowns make everything even more daunting but nevertheless we hope for brighter days and laughter. God Bless and thank you from Yorkshire. Tally Ho! :-)

Thanks Gandalf for putting a smile on my face with and honest but witty description of your journey.

Gandalf2
Gandalf2 in reply to Tuesando

Thank you for cheering me up too. This forum thing works quite well. :-)

Thanks from us too for your story - the humour shines a steady and bright light in the midst of quite a lot of darkness and discombobulation it must be said and made my wife (who is now in month 17 of her recovery from HSE here in Paris) laugh out loud (we both did). Coincidentally my nickname for her is Gandalf too but largely because she insists on wearing a big white hooded dressing gown inside our apartment. Good luck to you in your continuing recovery and I hope you are making tracks with more independence soon.

Gandalf2
Gandalf2 in reply to Kekupua

Thank you for your reply, you made me laugh too. Must be a virus!

God Speed and get well soon.

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