Hello,
It's nice to meet you all. I had encephalitis 40 years ago, when very little was known about its aftereffects. As I've been through it and come out the other side I'm hoping to be able to share some of my experiences and maybe help someone who has recently suffered.
Hi MasterBaker, thank you for your kind offer. I am struggling as I recover from autoimmune encephalitis. I just passed the 2 year anniversary from leaving the hospital after a 2 month stay. Do you have any remaining aftereffects from encephalitis? Although everyone recovers at a different rate, how long did it take before you felt you were "fully back?" What aftereffects did you have and how long did they last? During your recovery did you experience depression and/or feelings of grief/loss? If so, how did you deal with these and any other aftereffects? Thank you.
Hi MasterBaker!
It's nice to meet you 😊
All the stories I've read om this forum so far has given me hope. I would love to hear about your journey through Encephalitis. I was diagnosed with Anti NMDA Receptor Encephalitis 3 months ago. I'm still recovering from the whole ordeal, even though my case was mild, it's still traumatic!
Would love to know how you dealt with it physically, mentally and emotionally.
My biggest worry about all this is having another seizure, did you have any seizures and if so did it re-occur for you? So many questions, sorry ! Lol.
😊
Hello Elle2090, it's lovely to meet you too. I'm sorry to hear that you've gone through this, but remember that it's still early days and recovery takes time.I was diagnosed with type 1 diabetes in 1971 at the age of 4. Around 4 years later I started to become lethargic and was unable to do things I'd previously been able to do. As I was a highly gifted student nobody would take it seriously and said that I was being lazy because I didn't want to try. By the time I reached my 12th birthday I was having hypo attacks that lasted all night and wouldn't respond to sugar or glucagon. Eventually it was impossible to wake me at all and in the April of 1980 I was admitted to hospital in a coma. As the Doctors couldn't find a reason for my illness the said that I was going to die. As a last ditched attempt a Dr tried cortisol based treatment and I regained consciousness after a week. I had hallucinations for a short while, but I think that was just my brain trying to work out my surroundings. I was put on Phenetoin to prevent seizures, but only took them for a few years. I don't have any seizures now, except for convulsions if I vomit and my cortisone levels drop too low.
The reason for my autoimmune encephalitis were pieced together after I left hospital and as very little was known about it I had no choice but to carry on as normal, go to school, take exams and join the job market.
For all these years I've been treated like I'm lazy, stupid, have no common sense and had my memory questioned, never even understanding that I was suffering from ABI(Acquired brain injury) . If you struggle make sure people know why, ask for the cards so you can show people what you're going through, that way they're more likely to understand and may even help you.
I only found out recently that I have this type of brain damage and and felt so many emotions.
You didn't say how old you are, but you need to take each day as it comes. Accept yourself as tge person you are now. As a teen I was only interested in makeup, boyfriends and Spandau ballet! Lol I didn't have any health concerns, as I was like a 7 year old child, I lost many of my memories for the years before my illness, so struggled with school and socially. Very often I was told off by teachers and had no idea what I'd done wrong. Even though my parents went to the school before I started to explain my illnesses nobody ever told the teachers, so they thought I was naughty. I had to walk quarter of a mile to get to school and found it to be a huge amount to walk, so was often late, my form tutor thought it was acceptable to imitate me for the class to laugh at. As I had tunnel vision and a time delay in words and sounds getting to my brain I had no idea she was doing this until my friend told my parents. She was nice to me for about a week after my Dad spoke to her.
Whichever way we look at think, the fact is I'm here, happily married for over 32 years, have two grown up children and have lived a fantastic life. The most Important thing I could tell you is don't compare yourself to other people and don't apologise for yourself. You're the only you there is and you'll recover in your own time., in your own way.
I'm sorry if I haven't managed to answer your questions properly, but will speak to you again soon and we can look at them in more detail if you want.
I'll just let you know that I put everything on my phone. I have hospital appointments, shopping lists, birthdays, even Christmas presents, just so I don't forget. Now that's something that we didn't have in 1980! Lol
Take care and we'll chat again soon x
Thank you so much MasterBaker! What an awesome story. It's so good to hear where you've been and where you are now. It's very encouraging, thank you again ❤
Hi MasterBaker! It's lovely to meet you. 😊I had encephalitis way back in 1977, it was just after my first birthday, so I have had it my entire life and I never had a life prior to encephalitis which I suppose sounds a bit strange. That is how long I have had it, but after diagnosis it was never mentioned again, no mention of any children's charities or childhood ABI nothing at all and this makes my blood boil. My illness affected the whole family. I have put up posts about different after-effects and at different staged of my life etc so please feel free to have a read through all them. There has never been t"he old me" or "the new me" because that didn't exist so I can't empathize with regards to that side of it. I have such a long story it would take far too long to fill you in my whole life story that would be impossible. However it's interesting to know that someone else has had this illness as long as me so that makes me feel much better now.
What helped either you or your loved one the most while you/they were in the hospital?
Help with rehab at home after acute phase of autoimmune encephalitis for my 16 year old
