Thankyou all so much for the wonderful replies and info from my first post. It's so nice talking to people who know what a toll Encephalitis can take on both Emotional and Physical Health.
I have a question for you all. Do you, or Have you had anything that helps the fatigue and irritability? I was thinking of calling my GP, or should I say try to (queue to get thru is usually over 30 people!!) 🤦. Is there a supplement or any drug that helps with it?
I find waiting on the phone for two hours very therapeutic 😇
Hey Evey35 welcome! So I had viral encephalitis back in 2020 and very fortunate to come out the other side. I do now find I have increased anxiety, irritability anger etc I spoke to the GP and they have suggested CBT sessions which i have just started and I’m finding is giving me some good techniques which I’m finding is helping.
Fatigue wise I did suffer with that when I left hospital however for me I was lucky and didn’t suffer any physical issues and I have found being active and re building my energy levels that’s way has helped
Thankyou. I may well try and see what my GP can offer. I realise I done way too much way too soon, so now I've realised that my Brain is gonna tell me I have, I'm gonna listen to it. Hope the CBT continues to help you. Take care
Hi Evey25. Welcome to the forum. I’ve been reading through everything and everyone has said so far what I would have! Just to add a couple of things. I suspect like we all did initially that you thought this was something you’d recover from like a really bad bout of flu. I had E four and half years ago when it really wasn’t well known. My GP called a surgery case conference to look at my notes! But I know that so much more is known and available now so it is worth the wait to talk to your GP and maybe ask for a referral to a relevant support person. Are you still seeing your neurologist?
The thing that actually helped me most in the early days when I actually couldn’t do very much and had to learn how to do certain things again, like walking, writing etc was something on the Encephalitis website called ‘Letter to my brain’. It’s well worth reading. Because we all try and do too much. Then we ‘crash’ and then we get up again and can do more before the next ‘crash’ until we’ve learnt (well almost learnt in my case!) what we can and can’t do. So anxiety levels are still higher than before E but a lot less. Fatigue. Still hits me sometimes. But again a lot lot less. And optimism, enjoying the small things, celebrating steps forward, and when the crashes happen learning to give on and find what helps you relax through those times, now these are actually the good bits.
You’re doing amazingly well for such a short time. Don’t expect too much of yourself. Show the people around you the ‘Letter to my Brain’. It helped my husband and others understand what was happening inside I think better than anything. Also this forum is a safe place to say how you feel and know people out there do understand because they experience it every day. Good luck.
Oh Wygella what a lovely message, thankyou so much. I'm so sorry suffered so much. I still struggle with walking 'ok' like everything else, it takes time. It's so weird u shud mention Letter to my Brain, I've literally just read it to my Dad over the phone. It's brilliant. I think we are all guilty of trying to get back to our lives before, but our poor brains r trying to heal, as well as functioning to keep us breathing, blinking everything. It can never fully rest can it?.I'm speaking to my Neurologist next month, she was the 1 who referred me to the Neurosurgeon. She may have some other advice I've not thought of.
If she does, I will share it with u all. I'm having a complete rest this wk, even the thought of stepping into the shower is daunting. But now I've had that wake up call from my Brain saying "woah, that's it I need some rest" I know how much I can do now b4 pushing my limit. Unfortunately having other illnesses already doesn't help.
But thankyou so much for all ur advice. Keep safe and take care.
I am going to read this now! Thanks for the advice
Well done on giving yourself the rest you need. That’s actually a big step! Just the acknowledgment you need to stop helps. Also. What timing! I still read Letter to my brain occasionally when I know I’ve overdone it. Some encouragement it takes a lot lot more for me to overdo it these days and usually associated with a normal stress life situation.
Finally. I can remember sitting in a car waiting for my husband, watching people walking and studying how they did it. Seriously. I then practised at home ‘heel to toe’. Pick your legs up. I now walk totally normally and without thinking. Except occasionally a small joy that this has happened.
Keep resting. It’s such early days for you.
I am following this as I want to know too!!!!!!! I know that exercise helps my brain fatigue but I would love another solution. I am seeing a neurologist about this in March so I'll let you know if I find anything out 
yes please.
Hi Eve,
I was referred for a fatigue management course run by the local NHS Occupational Health Team.
I was skeptical at first but I wish I had dine it sooner. I had the opportunity to meet (virtually) other fatigue sufferers and learn about strategies to cope.
It was also when I accepted that only through proper pacing and rest was I going to feel a bit better each day.
I read the poem below early on in my recovery and I cried as it made so much sense. Even now when I read it the words get to me:
encephalitis.info/a-letter-...
Take care!
I also went on a fatigue management course, although mine was F2F with people that had suffered various conditions such as strokes etc. I also found it helpful, although each session was 2.5 hrs, which was quite a long time at that point in my recovery.
One thing they said was often people feel like that they have a bad memory, but actually they don't take in all of the information (due to distractions) so they haven't forgotten it, they just haven't learnt it.
A letter to the well-intentioned ignoramus
Information needed if possible
Have you lost your disinhibition ppost Encephalitis?
Post E, anyone not want to be here?
Pushing limits again!
