I caught autoimmune encephalitis in June. At first I was in a coma and then spent a month at King’s College hospital. I’ve been back 8 weeks now. I really struggle with my short term memory and have lost the memory of the last 12-18 months before I got ill. My partner tells me that I am making progress but I don’t see it as I don’t remember the past days/weeks.
I’m really struggling to accept what has happened to me. Every morning I wake up and it’s like this was all a bad dream. I’m keen on knowing how you have managed to get to terms with what has happened to you. How long does it take to come to acceptance?
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davidmdo
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Hi David, I was diagnosed 2 years ago and also had the seizures/coma/misdiagnosis/rehab situations...As to be expected the first few months are without doubt the hardest. Memory loss effected me too, and still does to a much lesser extent now. I found reading in short doses, helped, also talking about past events helped jog my memory, weddings/birthdays/holidays and that kind of thing, family brought it old photos and things to help jog my memory.
I had some really dark days when I was in hospital, but keep making progress and those will become less frequent. In regards to coming to terms with it, I too have found it a bit of a battle. I kind of wish I could see photos and videos of when I was in hospital, but none were understandably taken. My family were asked to try and keep a journal of when I was in the hospital, but they found it too difficult, and as such I don't really have much to reflect on. I have however, given myself some realistic challenges, get back playing football and playing guitar etc, which when I think back to my time spent in rehab - its pretty amazing that i can do those things now. It will be a battle at times, but fight on. Wishing you all the best mate!
Your description of your journey is very helpful to me and give me hope that thing can and hopefully will get better. Thanks very much for your message. All the best to you xx. David
Hi david. It is totally normal to struggle coming to terms with what you have been through I felt exactly the same. I had encephalitis and meningitis January last year. I was pregnant and the day before my due date I started not being able to talk and was so confused... next few weeks /monthsI have no memory of but after an emergency cesarean my little man was okay but I had seizures and was in a coma for 2 weeks and I still to this day have no memory of meeting him or the first few months of his life.
I had lots of follow up appointment and little things like speak and language help and I had to learn to walk and talk and read and all over again.
I still struggle with short term memory and feel a bit more anxious that I used by but if someone would have said to be this time last year I would be the way I am now I wouldn't have believed then.
Day by day you might not notice how amazing you are doing working with your side effects but trust your wife I bet you in a few months will start to really see the different. It's a hard time and the first few months are hard but you will get there
I was given a 20% change of living and I'm here with my happy family living a normal life. Something this time last year I would have thought was not possible!!
I obviously don't know how I was the first few months after contracting HSV encephalitis and Status Epilepticus together because it happened the day after my first Birthday. But when I was a toddler I was often in and out of hospital every time I picked something up always triggered off the grand mals I used to have ( up to the age of 17) that was my last one. I have had none since then and I'm in my 40's now. I can relate to that side of it but I never had any rehab even as an older
child. My paranoia started I think when I first started talking which I suffered from severely until I got into my early 20's.
When I was 5 I fell off a climbing frame and was in a coma in hospital for a week and I think I was discharged but stay at home for a while after.
Regardless of what had happened to me, I would still carry on with the things I could still do and look forward to continuing where I left off this was when I was hospitalized and thought well I'm here to get better and don't care what I have to do in order to do so. Ok this is part of my life and just thought I won't be like this forever, I still have a life to live like other kids the same age. I was able to do allsorts like others did (except I was a bit slower processing information) but I found my own way of dealing with it - I had no help, so I just kept at it by myself, kept on persevering. I only found out when I was 10 that I'd had it.( I was told at age 7, I was epileptic which was a relief at the time). When my Mum first told me, she showed me her family medical book and it only had one or two paragraphs about what encephalitis can do but it was very intimidating so I didn't believe my Mum at the time. She had a separate book on epilepsy which I did believe but that was about all. We went to some epilepsy groups when I was 11 to maybe age 17 or 18 then we stopped going but then that was the year the Encephalitis Society came out and I had a diagnosis of OCD that year 1994, so we went to maybe the first two local meetings but I fely very intimidated there, and what bits of information there was out at the time was also very intimidating so I thought ' right forget it then' if this iis what happens every time encrphalitis is mentioned it wasn't worth all that to gain nothing and nobody to relate to, so I thought I may as well just carry on if this was going to prevent me from doing so then it was pointless. My parents knew I wasn't like any of them and nobody could relate to me. But they got a bit of advice for themselves though.
Its only been the last two years my Dad phoned them up first and spoke to them (because it was his idea) then theu phoned me and it went from there. I have never seen anything like this amazing literature before- wonders never cease, and I have learnt loads more from the phonecalls and then a few months later becoming a volunteer. Before that nobody had ever mentioned encephalitis again or brain injuries or nothing but it has taken all this year to get my head round it because it came to me as a shock at first and thought I was like every other person who gets encephalitis but it took some time to work it out I had no memory loss or other intimidating stuff this didn't make sense. It was at that time that the helpline said that some people can just come out with a few problems (I wasn't previously aware of) so that was such a relief I could put a name to it. I wanted to know how my profound OCD became refractory was what made me think about making enquiries after doing some research into it. I wish they would put in the booklet called After effects, Recovery and Rehabilitation that not only do people have Obsessive- Compulsive "tendencies" or "traits" but it can also lead to developing OCD and suffering from it (which I previously was unaware of the latter) which is "off-putting" for other new people who may require that information in the future.
Thank you very much for your answer Paula-38. I’m at the beginning of the journey and I should be more patient with myself and people around me. Thanks again for your message. Xxl
Yes thats usually the most depressing time but, I didn't know much when I was at that stage because I was tio young so I only remember from the age of 2 or 3 which was when I was suffering with epilepsy being rushed into hospital every time I picked something up because that triggered my seizures off (at the time) so I was only a toddler at the brginning of my journey which was more difficult for my parents they had never heard of encephalitis before and were always worried sick what was going to happen next and why this had to happen to them and their little girl (at the time). There was no Encephalitis Society out for them then which is what they could have done with . But I'm glad that they are here for you and others.
I hope this answers your question a bit better David.
I'm so sorry to hear that you're struggling. I was diagnosed with Autoimmune Encephalitis myself three years ago so I completely relate and sympathize with everything you've mentioned and everything you're feeling!
It sounds like you've made massive progress already and I think you should give yourself credit for that! I know its difficult to accept and come to terms with whats happened. When I was recovering, the first few months when I came out of hospital felt like a blur. Not only was my body in a state of shock but my mind was too!
The loss of memory was/is something I'm still getting my head around. I definitely found reading about Encephalitis such as 'Life After Encephalitis' which you can order from The Encephalitis Society really insightful! It really helped me relate to others and understand I'm not alone in this and what I'm feeling is normal!
I'm three years down the line and I still feel like it was all a dream, memory loss makes it very difficult to understand what has happened but I also found asking as many questions from those who were there around me really helpful. I asked my partner, family, and doctors! I tried to gather as much information as possible and then I wrote it all down into a story, something I could read when I had forgotten that made sense to me!
One other thing I did was, I wrote a letter to my brain (a few times), the first one was full of anger, the second one was full of emotion and loss and as time went on I began to see the letters started to show more and more acceptance. This might be a helpful thing for you to do whenever you feel ready. Sometimes writing down how you feel can help!
You're doing incredibly well, even on the days you don't feel like it!
I wish I had a quick and easy answer for your question, but I don’t. This morning I woke up and felt like I was in a bad dream. This happens to me every morning. Next month it will be 2 years since I returned from the hospital after a 2 month stay for autoimmune encephalitis.
I don’t know if I’ll ever accept what happened to me. Suddenly struck down by a rare neurological disease I had never heard of that trashed my memory and left me with other neurologic problems too? Nooo, it just seems too fantastic!
But maybe I can come to terms with how I am, where I am, and what I have. I get by one day at a time. Sometimes one hour at a time. Seeing progress helps me a lot. I found some iPad apps that measure things like short term memory, brain processing speed, etc. I’m happy when I score well on these apps and thrilled when I score higher than average for my age group! It is so helpful to have objective evidence that I am improving. Getting a new record high score is a reason to celebrate!
I keep notes and other evidence that help remind me where I am and what happened. I have a browser tab open to my neurologist’s webpage. I recognize his picture. How would I know him if I hadn’t been his patient while being very sick? I remember him telling me that for a while I was “unable to make memories.” That helps explain some of my memory problems. Ok, the improbable story seems to have supporting evidence. What to do now? I have to get up every morning, do my iPad exercises, and start working at my job. I have to take lots of notes and keep track of what I have to do and what I have done. I have to work to support my family. They are counting on me.
Life has suffering. More for some, less for others.
When I was at your stage, my doctor kept telling me it was “early days”. You will recover more and more. Recovery may take a while but it will come.
I’m three years on from my diagnosis of Anti NMDAR Encephalitis and the difference I have felt month and month, year on year is remarkable. It took me a long time to accept what had happened and process it (some days I feel like I still am) but each day will come with it’s own progress no matter how small.
How wonderful that you have a partner that sees that progress in you.
Some things that helped me were:
- keeping a journal/diary
- creative therapy like adult colouring books and audio books, very calming
- brain training apps
I also found it helpful to fill in the blanks of my hospital experience as much as possible so I requested and got all of my medical records around 6 months post discharge. An emotional read but helped me put the puzzle together a bit more - not for everyone but it helped me.
Good luck, keep talking and best wishes for your recovery.
Sorry to hear of your difficulty in coming to terms with what has happened - I can relate as I too have found coming to terms with catching encephalitis and memory problems very hard to accept. It has made my home life difficult- for my partner, and son.
I was treated three years ago I have not come to terms with my new self yet the disease has aged me When I have a good day or days I am OK then the reality hits and I get emotional But reading other people's stories helps On bad days I do nothing good days I can drive and get out for lunch Hope that helps
Hi davidmdo,Well it was just after my first birthday when I caught viral encephalitis so the first time I knew anything about it was when I was 10 my Mum told me, and she had a family medical book which only gave us one paltry paragraph about Encephalitis and it only told us that someone could end up physically disabled or have learning disabilities. I never had any of those problems so I thought 'right this can't be me' and I just carried on because that wasn't getting me anywhere.
There was no Encephalitis Society out after I had encephalitis when I probably should have had them at the time but it wasn't until I reached my adolescence when I went to their very first meeting with my parents, but that was also really intimidating so that didn't get me anywhere neither so I thought I may as well carry on with my life otherwise that would only make me more depressed so I didn't see the point of that. My parents said that they knew that it wasn't for me and that there was nobody there like me or similar, they all had severe disabilities that I didn't have. 😠
It was only because I wanted to find out why I have refractory OCD meaning "prone to relapse" and that I wasn't a suitable candidate for Deep Brain Stimulation for OCD because I have been taking anti-epilepsy medication my entire life and that I 'd had encephalitis so I did my own research on encephalitis and OCD and vice versa and then I came across the Encephalitis Society website and that was approximately 2 and a half years ago now. I have learnt a lot more since then, I used the helpline, the connection scheme and now I'm happy to be a volunteer because I like to think that I can help people who are far worse off than myself, other poor children and their families/friends so they can get the help they need at the right time.
I have had this illness all my life and until 2 and a half years ago I wasn't aware of all the after effects nor were my parents at that time but my Mum was very poorly at the time, she was in the early stages of subcortical vascular dementia at the time, she had to wait 5 months for a diagnosis but during that time she deteriorated rapidly and eventually she sadly passed away not long after we found out.
I know I can't empathise davidmdo, but this is my story. I have now met similar cases which makes me feel better now, the E.S helpline have informed me that I now have an ABI , that was over a year ago and I was absolutely shocked to find out only then and not years and years ago because nobody ever mentioned it to me or my parents at the time as this really made my blood boil. Still I'm used to it now but it did take a while to register though initially.
Hi davidmdo, it has been 6 months since you initially posted this question. I hope you are doing a lot better. What have you learned or discovered over this time? Have you come to terms or accepted what has happened? What has helped you the most? Thanks.
Hey, I got mengioencephilitis in August 2019, and I still to this day struggle with accepting it happend and the changes I'm left with, but I just keep on fighting and pushing but it's very hard and fatigue and brain fog, headaches... are a massive draw back, it's hard your have good and bad days but never give up just keep on x
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