My name is Becky 
I would love to use this group to hear other peoples journey and try to help in anyway I can but also listen to advice from anyone who has been dealing with this for years.
I had encephalitis and meningitis last year. I was given a 20% of survival 24hours after having an emergency cesarean on my due date.
Luckily my little man was fine and I am still here to tell my story ❤
Here I am meeting my son for the first time when he was 2 weeks old. I was finally out of my coma ❤x
Oh wow! Motherhood and encephalitis so close to each other. That must have been such a rollercoaster ride for you and all your family.
It certainly was I had a perfect pregnancy and it came out of nowhere the day before my due date but luckily I'm still here with my little man and my perfect family that's all that matters it was something I had never even heard of and now nearly 18 months later still trying to deal with the side effects but day by day it gets easier to try and deal with ❤
I feel for you BeckyRule. There was much more if a time gap in my own case. I had E in 2005, aged 26. I didn't have children until 2010, so five years later. I think that must have been easier for me and my hubby/folks to deal with. By then, we were all aware what I was likely to find tricky about this huge life changing motherhood. We all put together strategies to help my memory cope. For example, I kept a day by day chart on what I had to do with the babies. So I wrote down nappy changes, feeds, bubble baths, calls to Nannas etc.
Hello BeckyRule BeckyRule! 👋🏽👋🏽
What a terrible ordeal to go through, so young and at the start of motherhood too.
So glad that both you and baby are fine.
I'm taking a lot of courage from your positivity.
My mum had the same as you in February. Just like you, we'd never heard of encephalitis and are learning new things everyday, while trying to come to terms with all the after effects.
How long were you in hospital for? Did you have neuro rehab?
My mum is currently in neuro rehab but struggling with anxiety, confusion and hallucinations.
Anything insight you can give would be very much appreciated.
I'm so sorry to hear your mother is going through this. All I want to say it that things to get better ❤
I was in hospital for 6 weeks and part of my appointments after were to see a psychologist. My first few months after coming out of hospital I cant really remember and I only have the odd moment of my in hospital that I can even think back to. Part of my problem was that it hasn't hit me just how poorly I have been so it took me awhile to accept the side effects and I didn't quite understand what I had been through.
I also dealt with anxiety and over thought things daily but that has started to get better.
I think just setting myself little daily challenges was good just little things to work on, rather than hoping I wake up and everything is back to how I was before this all.
But day by day I am positive and feeling like myself. If it wasnt for coronavirus I would have been back in work 2 weeks ago and that is something that my family saw was very likely to never be able to happen ❤so when I think this time last year I still couldn't read it write and struggled to even understand what I had been through it's such a huge different.
Sending your mum all the love and hope she is okay ❤
Thanks @BeckyRule.
Corona virus really screwed up mum's recovery. She was in hospital, when the lockdown kicked in and we suddenly weren't able to visit her. 😢
She became low priority for follow on assessments and was just dumped in a geriatric ward, where she developed pneumonia, was suspected for COVID.
The hospital began to pressurise us in to authorise a DNR order, even after she came back negative. 😡
She didn't understand the sudden abandonment and isolation, she developed seizures and her mental health began to deteriorate.
She was later discharged home with no advice or follow-ups - just a hospital bed and a hoist.🤷🏽♀️
Carers were coming 4 times a day to wash, change her and hoist her into a chair but she developed a DVT and ended up back in hospital 2 weeks later. 🥺
We're waiting to see whether her current fluctuating state of agitation, anxiety and hallucinations are her new baseline or just temporary.
She was very active, social and proficient with IT and now she frets because she can't retain and process information or commands that she seems to recognise.🥺
2 weeks in rehab and we're holding our breath to see how it all unfurls.🙏🏽
Have a good Saturday BeckyRule
Good talking to you.
😊😊👋🏽👋🏽
I'm so sorry she is having to deal with this horrible illness as the scary time we are going through right now. I was very lucky and had my family by my side.
All I would say right now is when I was first home my family thought I would never be able to talk again or live a normal day to day life... and yes I still have side effects and day by day there are still things I have to work on I am feeling more and more like myself as the days go on.
Hope your mum can get to this point as soon as possible 🙏xxx
Ah dear lady, you have seen a lot. Your family is beautiful!!❤️
I’m no where near same situation as you. In fact it’s kind of opposite. After getting re-married (first husband died of a blood cancer that rarely got through this blood brain barrier and into his CNS- we were married 25 years to the day, literally) I wound up in hospital just 7 months after my NEW marriage. At the same EXACT age as late husband was when he died. My poor kids had to see both parents sick/dead with a CNS illness at same age. They will likely kill themselves at 56- 1/2 years old. 🙄
So while your days as a mom are different (likely?) than expected, mine as a new wife, mom to older kids- is too. I think that’s the big message here with a CNS illness. Things don’t “heal” like they do when you, oh, break a bone. Sure, there may be issues with a healed bone. But, you likely don’t suffer the losses like when the brain is hugely affected. And hiding it from people is almost impossible. I finally learned that a few months ago.
As a nurse all of my life, working closely with top-notch researchers, MDs, biotechnology- when I ask my neurologist a question about my side effects- I usually get “ We don’t know, really.”
Huh?? Frustrating for someone like me who didn’t stop until I actually KNEW the answer.
Regarding work- one thing I FINALLY learned after 57 years on this earth- just take care of yourself as best as you can and THEN maybe you can work some. I recently quit a very good job - I could DO it, but it took literally everything out of me, and there was nothing - ZERO- left for my loved ones. (I educated other health care professionals- nurses, doctors etc) on a product that treats the cancer my husband died from as well as traveled 13 states to do it.)
I’m trying to stop asking all of the questions I still have as to “why?? How did this happen???” Obviously the 35 year research RN doesn’t live in my left medial temporal lobe and she won’t shut up!!)
Ok- let’s all support each other on this darn journey! One I don’t remember buying a ticket for!
Perhaps I forgot that, too...😊🤯🧠
Please stay safe with this pandemic...🙏
It is definitely frustrating not knowing the best way to deal with the side effects but I still just try and stay positive daily. Day by day things get a bit easier and in starting to just accept that I will never be exactly how I was before this happened but I'm here with my partner and my son and after only being given a 20% chance of living I see it as a good ending.
I'm so sorry to hear what you have been through and its definitely hard to just accept that there is not much we can physically do to change the outcome but that's it just trying to all be here to support other people that have been through this/this going through it is all we can do❤
You’re a special lady BeckyRule...your family is a blessed one indeed. 😊👍💕
Hi BeckyRule, nice to meet you. 😊
I feel so sorry for you that you have been struck down by this horrible disease and the affects it has had and probably still is having on you. However I am so pleased that your baby is healthy and that you are still a fighter. I hope that you get all the help you need!
Mine is a completely different story altogether. I was 1 when I contracted HSV Encephalitis and you are very welcome to read ALL my posts, also others can do so if they wish.
Paula-38
