Struggling big time

Hi everyone, hope this is a good day for u all.

I got Infectious Encephalitis about 5wks ago following Micro Vascular Decompression surgery. Unfortunately I had 5 CSF leaks over a period of a wk and half, had to be restitched 4 times. They were worried that I would get an infection, and I did.

Unfortunately I also caught covid in hospital and I already have other illnesses - Chronic Migraine, Fibromyalgia, Asthma and Systemic Sclerosis.

I spent 2 wks in High Dependancy ward, apart from the last 3 days when I was isolated for having Covid.

I thought the first few wks of recovery were tough, but as of yesterday it feels like it's 10 times worse. The Fatigue is beyond what I ever thought it would be and my mood swings are terrible. I'm extra clumsy and just feel like I don't want to socialise or do anything.

Has anyone else been in similar circumstances and if so how did it affect u? I feel like I'm constantly having to explain why I'm feeling like I am. To make things worse, I got my letter from my Consultant yesterday, and there is no mention of me getting the Bacteria Infection and says I had A CSF Leak as opossed to 5 leaks. He did say if I have any other problems he would gladly take me on again as a patient, which is nice. But I'm just a bit annoyed, I wasn't in hospital for 2 wks because of surgery, I was there cos I had an extremely Serious Infection and now as a result of that, Encephalitis. None of which has been explained to me.

I would welcome any advice please from someone who knows what it's like.

Eve.

[HSE_Survivor]

Hi Evey. One of the problems when you’re seriously ill is that you’re vulnerable to other infections while you’re in hospital. Being diagnosed with encephalitis must have been devastating.

Being 5 weeks since diagnosis is very early days for encephalitis recovery . Fatigue, mood swings and finding socialising difficult are very common effects of the virus .

The best explanation for fatigue I was given was to imagine that our brains used to operate on a powerful Duracell battery before we had E, but after the virus the brain operates on a cheaper battery that needs a lot more rest to recharge it throughout the day . Socialising becomes a challenge as it requires a lot of mental energy to listen to & interpret conversation, especially in a noisy social environment.

Time is the greatest healer. Brain pathways are very complex , so they take a lot longer to heal than a simple injury like a broken bone. When I despaired that my life was a mess, I was told to be patient , as we could expect the healing process to take up to two years to achieve a level of ‘normality ‘ again.

The fact you can write and express yourself so clearly 5 weeks since diagnosis is a really positive sign. It takes many encephalitis survivors months to recover enough to communicate and understand E , so your brain is already reconnecting really important pathways. Sleep allows the brain to cut out sight and sounds do it can focus on repairing Itself , so if you need to sleep a lot right now, that’s ok, too.

We’re all here for you if you have any more questions . Xx

[Hidden in reply to HSE_Survivor]

Thank you for your very kind & understanding advice. That battery explanation is great. I got told by a Specialist to remember ur Brain is trying 2 heal & needs rest, but unlike a different organ or body part, the Brain still needs 2 function, it has the biggest job of all. I guess I just need to be patient. It's just annoying when people close 2 u say things that make me feel like they r down playing it. I'm not asking for sympathy, just understanding. Saying things like "oh u will be ok in a few days, u have had a busy week" . Thankyou for being understanding. I wish u all the best. X

[The_Bass in reply to HSE_Survivor]

That’s a spot on answer from HSE_Survivor – I can’t put it any better myself. It sounds like a really tough time, and I sympathise, but what I can say is, hang on in there – you’re making total sense to us!

[Hidden in reply to The_Bass]

Thank you. It is a rough time, but it's making it a little easier chatting with all you who has or are going thru the same things. Keep safe and take care. 🙂

[GreenBamboo]

Hi Eve,

Sorry to hear that you have had such a tough time.

Encephalitis requires adjusting time and recovery time. It is very early days for you in this regard. Reading your post I feel that you need recognition and acknowledgment of what has happened to you, which is totally normal, I felt the same.

You have been really poorly and with a mix of illnesses and so it must be really hard to know which are causing your affects now but fatigue is a common affect of Encephalitis. Clumsiness is also an affect. You have been through a really traumatic time and so mood swings & not wanting to socialise also seem a normal reaction.

I had meningeoencephalitis in Dec20, so 2 years ago and only now do I feel that the fatigue is better. I am no longer clumsy unless I let myself get extremely tired but my memory is not the best. I must stress though that everyone's recovery is different, if you read through previous posts from all e-peeps you will see this.

Unfortunately leaving hospital with little acknowledgment, understanding of your illness and lack of support is something that I also experienced. My hospital discharge letter stated that I had delerium not meningeoencephalitis (corrected by my neurologist)!

May I suggest that you reach out to the Encephalitis Society who can offer knowledge and support, they are brilliant. Also contact your consultant for an appointment so that you continue to be in the hospital system should you need any further help as you move through your recovery.

Lastly, be kind to yourself! Try to accept that in the short term you need to rest. Pace the activities that you plan, stop for a rest before you get tired, accept any help that is offered and talk through the feelings that you have; if you do not feel that you can do this with your loved ones, this forum is here for you with many Enc sufferers at varying stages of recovery.

I hope that today is a better day for you 😉

[Hidden in reply to GreenBamboo]

Thankyou for such great advice. It is hard for people who haven't had any Brain Injury to understand. I'm getting comments like "oh u have done too much this week that's why ur tired" or "It won't last" I have reached out to The Encephalitis Society, & like u say they r great. I was quite shocked at how uncommon it is, with only 6,000 cases a year, & that Infectious Encephalitis is very rare. I'm sorry u had a similar experience with ur Consultant. Its weird how much of an impact that has, that they haven't acknowledged this major trauma u have survived & going thru the recovery. I wish u all the best & I'm so glad I joined this forum. Thanks.

[GreenBamboo]

Hi Eve,

When those around you are making comments such as "oh u have done too much this week that's why ur tired" or "It won't last" they come from a good place but I should imagine you are screaming something like "its more than that", "I am struggling here", "please acknowledge me", "I am scared that it wont get any better" and so on.

Try to remember that it is early days for you and things WILL get better. It will get better quicker if you do not push yourself too much in the early days of recovery. Your brain is trying to heal and to do so needs rest. Patience is needed but this is really hard and frustrating when all you want to do is go back to pre-enc - you'll get there 👍

[kayjay2]

So sorry for this struggle. I know because my sister had this. So hard.

[Hidden in reply to kayjay2]

Thankyou. I hope ur sister is getting on well. Sending warmest wishes.

[listener24]

hi well you’ve certainly had your fair share of problems or should I say have , but one thing I’ve noticed what a positive mindset you have in just dealing with it all , big respect to you .

I’ve found over the years and speaking to many people with brain injury’s what an amazing thing the brain is , like you refer it to a battery run it to hard and boy does it tell you ,it will stop you and make you recharge ,in a way to say don’t push me to much I’m in repair mode still .

Water fresh fruit and I know it’s hard to say mind rest is so important

Sending you my kindest of regards ❤️😎

[Hidden in reply to listener24]

Thankyou. I would say I have a positive mind set about 80% of the Time, but thats cos mainly I've had to. I started my Migraines when I was just 2, and all the women on my Mum's side of the family r incredibly strong. My Great Nana lived to be 103 & both her sisters just made it to 100. The trouble with being positive and strong tho, is people tend to think "oh well she's a tough 1, she won't need 2 much" both me and my mum find this is to our Detriment most of the time. But u can't change who u r can u?I think it's just hit me so quickly, when I was thinking the recovery wasn't that bad. Its the emotional side as well. I live on my own and don't tend to tell my close one's how I'm feeling emotionally.

But Thankyou so much for your kind thoughts, understanding and advice.

Sending warmest love to you all.

[listener24 in reply to Hidden]

How often have I’ve been told that your looking great ‘ your always doing something. They have idea what’s going on inside this amazing facade (I have to put it that way because we are) we as you know , we put on that brave face when all we want sometimes is a hug!

One profession we would excel at would be in acting haha the next Angelina and Brad pit 😎👍

[Hidden in reply to listener24]

Yes that wud be a good career!! I always find people like us, never ask for help, try to struggle on thru. The weirdest thing is we r usually the first to help someone out if they r poorly, only to find they aren't anyway near as bad to what we r feeling!! 🤨🤦🤷 Still we struggle on!!

[listener24 in reply to Hidden]

Your reply took the words from my mouth , we do and always will put other people first but that’s a good problem to have in my opinion. I feel it makes life that bit easier knowing you’ve helped others in need. Sorry if that comes across a little selfish. Anyway please please struggle on your obviously one of life’s good people 😎👍

[Hidden in reply to listener24]

Not selfish at all, total opposite. But like you I'd rather be like that, than have people view me as hard and uncaring. Look after yourself. 🙂

[beachy1980]

Oh my goodness - it seems you have been through so much but you sound positive which I think is amazing - I really think it makes a difference!

I hope that you are taking good care of yourself and resting.

Have you already spoken to the encephalitis society? They have helped me so soooo much and you can call or email them. They always listen and give me excellent advice too if I need it. I think that they are wonderful!!!!!!!!!

I don't know if its helpful but I have found new ways around my limitations - my biggest problem is still fatigue which I haven't yet figured out but I will!!!!!

Let me know how you are x