my encephalitis story

[Avybrown]

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having broken my back in Jan and having encephalitis 3 weeks ago and covid and pneumonia in March, it has been a struggle to say the least. However I am relying on my husband so much after the encephalitis to express myself and speak that I didn't realise what that would be like. My husband is tuned into me so much he catches me before I stumble and tells me to sit down before I say I am tired. I call everything "thingwy" and he usually gets what I am saying and puts up with my frustration when he doesn't. We never know what tomorrow brings for any of us, but a wee bit of love makes life so much better.

I cry at least every hour and can't cope with things that I could normally. I really never knew much at all about this illness, but the after effects of it are a new chapter.

The start of the illness were completely dramatic, I left the house in the middle of the night and was in pjs and slippers driving at 20 miles an hour on the motorway hitting off the kerbs of the slow lane and was arrested and put in a cell at the police station!!! I was so distressed with head pain photophobia and was hypothermic on admission to hospital when the police took me. my memory of the entire thing is zero!!

[HSE_Survivor]

Avybrown. I’m so sorry that you’ve had such a difficult year . I think you definitely have had the most dramatic start to being diagnosed with encephalitis! That experience in the car must have been terrifying , but thank goodness someone recognised you were ill and admitted you to hospital.

It’s completely normal to cry constantly and to feel you can’t cope with normal things when it is only 3 weeks since you were diagnosed with encephalitis. You are in the very early stages of recovery . When I despaired in my first year, my consultant told us it takes two years for a brain to create new pathways around the damage caused by encephalitis .

The main thing to do right now is get lots of rest . Every time you sleep , your brain can focus on repairing itself, so sleep is an important part of recovery . Your husband sounds like an angel - love does make life better, too. My husband coped with me disappearing with our dogs and flooding our kitchen when I left the taps on in the first year I was diagnosed. We had some horrid times, but life did get better .

The group on here has all had encephalitis like you, so you’re definitely not alone . Big hug 🤗

[Gandalf2]

Hi Avy, I'm sorry to hear about your situation. Enc is a horrible thing to deal with as it affects you in so many different areas of your life. Friends disappear, even long-term ones, and a plus is the ones you make on the Forum or in the moments when a cashier or a waiter who knows about brain injury and hidden disabilities and makes contact. Strangers can be so great at dealing with your needs and showing small gestures of support.

But the tiny plusses are overshadowed by the losses both personally and in the life you used to lead. Memory loss is hard and happens so speedily that I can't remember what I'm talking about before the end of a sentence.

Rebuilding takes time, learning things anew that used to be everyday is an uphill task. But it could be a rebirth in some areas, I now look at people who are struggling with a new feeling. Some of my old ways are left behind for good. I'm running out of energy and flagging now. Get rest and return the love your husband has in this time you have together.

Best Wishes, G2.

[Avybrown in reply to Gandalf2]

Hi Gandalf2,

may I firstly say thank you so much for replying to my post, your reply was so so needed and appreciated. Somehow thank god I can write again although my speech isn't the best, so I'm not so lonely now I have found this group. I am still in shock, even as a nurse practitioner I didn't know alot about Ec, by I am learning through experience. I am terribly lonely it's amazing who disappear from your life when you become ill. It hurts as I am the opposite. I run after people and hope to make a difference in even my friends lifes.

The last 2 days have been so sleepy, I am trying to go for walks to raise my fitness, but have my grandson tonight so no walks. Nightfalls and an owl hoots here, I better get my shower. take care, and again thank you so much xxxx

Avril x

[Gandalf2 in reply to Avybrown]

Hey thank you xxxx to you too. Starting anew is not easy to do, short walks, nice talks, plenty of rest and hope for the best. G2

[listener24 in reply to Avybrown]

Hello Avybrown

Reading each of your written words , was like I was going through the sequence of the horrible events with you . Although I say this and I’m sure the others on this site will agree , when you’ve had Encephalitis and you meet or react with another person who has had it , ‘The Bond’ is there and it’s so strong , it’s like finding a long lost relative!

I don’t know I’m not a medic but it’s possibly due to the fact only we know what we have and are still going through that feeling of loneliness is a classic sign, but I can assure you your not, you are loved now because your part of this family so to speak, we know your journey and feel your emotions.

Sending my kind regards and best wishes x

[Paula-38]

Hi Avybrown,

I'm so so sorry to hear about your terrible experience in the car. Oh my goodness! 💔

3 weeks post encephalitis diagnosis is still early days.

I had encephalitis the day after my first birthday so I really have no idea what's supposed to be "normal" when one starts life after E, nor did I know anything about how it felt becoming ill with E. I had nothing life-changing, just being me the way I've always been. All I can say is I can talk about after effects but not what was I like pre encephalitis as that doesn't apply to me.

In the same way you and others won't be able to empathise with me, i.e growing up after having had encephalitis before we are old enough to learn to talk, crawl, walk, think, read etc.

I have put up numerous posts on here over the last 3 years or so. Please feel free to read them. I seem to be pretty much like the average person but with profound Obsessive Compulsive Disorder - OCD and disinhibition they are my main after effects I'm trying to work on.

I think 'E' has made me a naturally paranoid and anxious person from the age of about 3 (rather than changed my life). It also caused me to have a developmental delay so I'm still learning the things I should have known when I was little = learning how to improve my disinhibition I'm not sure if that's the right way to word it because I'm totally useless when it comes to wording things. I ask people what do they mean by whatever word/phrase they used as there are so many common ones I've never heard of before, but they are new to me. I keep a book of embarrassing mistakes I have made and new words and phrases also get documented in the same book. Another big after effect is my slower processing speed I have to ask people to "please talk slower" for me, and sometimes I ask them to "please wait a minute" while I think, and also to let me finish my sentence before I lose it.

I have a very good friend from school I'm still in contact with after 34 years now and still going strong. I'm very close to her.

[The_Bass]

@Avybrown - what a story behind your entry to this group! I just really hope the group here can help you on your road to a brighter future, post-encephalitis. Yes, it’s a long road but things will get better!

[Neuro-Gee]

Take your time, hopefully most people you encounter will be kind and patient, give yourself a break as your condition is not your fault. Keep going and we will support you here

Sorry to hear about your situation - I hope you get some improvement