Hi BeYourAnthenticSelf,Your battles and experience sounds very similar to mine, except that mine was Herpes Simplex Viral Encephalitis the day after my first birthday and I felt as though I lead a next to normal life from a young age like yourself. It's lovely to know someone similar isn't it?
It's very rare for me to come across similar people to myself.
I have always been a very paranoid and anxious person. I have also experienced clinical depression in the past and I suffer from profound Obsessive Compulsive Disorder -OCD .
I have experienced problems with concentration when I've been either extremely anxious or depressed.
I have been informed that stress and/or depression can contribute to memory and or concentration problems. This has happened to me when I've been extremely stressed out or if I have been severely depressed, but these days I try not to get too stressed and I try to keep myself motivated which I know is far from easy but with practice it gets better believe me. I am doing quite well in those areas of life, but I wish my OCD would be gone by tomorrow which I know is impossible after having it for at least 30 years.
My executive functioning has got a lot better these days, I'm still working on my disinhibition and I think my expressive aphasia, although I haven't been diagnosed with expressive aphasia, that describes what I'm talking about is getting better too.
My emotional regulatiion and emotional intelligence I think hasve improved to the best of my ability - I say that because nobody is infallible.
If I allow myself extra thinking time I can do these things, that makes my social skills better to a certain extent, they are far better now than they used to be. I ask people to "please slow down " if they're talking too fast for me, and I stop and think before I reply whether it's verbally or in written form. I hate having to make people wait while I'm thinking or trying to let's say talk to a couple of people at the same time, while I stop and think what I l'm going to say and (if it's about the same subject) I can then talk to the next person and so on.
Have you ever had any problems with your social skills? I have also experienced discrimination too.
I think there is definitely lack of awareness,understanding and stigma around mental health and OCD following brain injury.
There was nothing like this out after I first had encephalitis.
I hope this is of some help to you.
Please feel free to ask me any questions anytime. I'm always willing to help if I can.
It's quite "funny" to me that I can't even recall whether this is my first or second reply to you.
I believe participating in this forum will be very beneficial for me and, hopefully, for others who are beginning their journey with encephalitis.
For many years, I didn't really think about my condition, likely because I don't remember much about the incident and the subsequent neuro-rehabilitation.
While I'm not a health professional, I do believe that strong, unchecked emotions such as stress, anxiety, guilt, shame, and anger can exacerbate encephalitis symptoms. I can only share my feelings and hope it aids others.
My neurologist mentioned that during our consultation, he concluded that the symptoms of encephalitis were "masked" throughout my life since I performed well academically and maintained a 30-year career in pharmaceuticals/healthcare.
Recently, suspecting I might have COVID brain fog or early dementia, I researched potential help. I've seen a neuro-psychiatrist who recommended I start sertraline to help lift me from this depressive state. I have concerns about antidepressants—potential addiction, side effects, lifelong dependency, and discerning their effectiveness if I'm also undergoing counseling, CBT, and lifestyle improvements. I trust the healthcare professionals I'm seeing, but I may adjust the timelines to when I feel ready.
Thank you so much for responding and sharing your story.
Welcome to the gang at ‘Health Unlocked’. 😊 It is always nice to meet another encephalitis survivor, as we all know how hard the recovery journey can be. I had HSE in 2013 and initially recovered well, but I have had an increase in epilepsy seizures since 2020. It helps to know I’m not alone.
Are you aware that this charity also holds zoom meetings where you can physically talk to other survivors about your recovery ? Not everyone likes to talk, but if you enjoy chatting, this might be for you :
Dear HSE_Survivor, Thanks for your message and the link to the Zoom meetings. Lovely to meet you/all in this virtual world. Great to know that we are not alone and that it wasn't me / or my fault that has been holding me back over the years, it was the encephalitis!
Hi- first, you’re an incredible writer! Your story is said with so many thoughts and feelings, and many of us out here can fully relate.
When you say “solitary struggle”, there isn’t a better way to describe it. We all look “ok”, I can still speak with the same voice, and wear the same clothes I had before HSVE. But what no can see are the constant struggles with our comfort levels in certain situations, which are very different now. I realize after five years with this new brain that I am an excellent actor and can totally convince those around me that E didn’t change a single thing for me. And at times I resent that others CANNOT relate or understand. Which causes jealousy that their lives are going on unscathed.
All I can say is that’s it’s good to know there are others out there that get it.
Major depressive disorder is a huge side effect for me, yet the old nurse in me figured out a medicinal “cocktail” of anti-depressants that have been working. I simply kept telling my MD what my research was telling me and he prescribed certain meds that I tried, and I finally came up with a couple that have changed my life. I also started to play the drums a few years ago and I have to say, the neuro pathways that pop open when I get something right feel incredible and I feel they have healed me in so many ways.
So, it’s a funny combination of drugs and drums that have helped me so much.
Finding your path in life is a challenge for us all, yet those of us with brain injury simply must work harder…all I can say is that you are not alone. 🙏🏻
Thank you so much for your message 🙏. Reading your reply filled me with humility.
All I can express is the importance of being gentle with ourselves, recognizing that none of this is our fault. We are not isolated; support is accessible, and hope is ever-present.
P.S. I now realize how silly my username "BeYourAuthenticself" sounds, and I plan to change it. My intentions were pure 😀, as I wanted to encourage being true to oneself, embracing authenticity and honesty because our uniqueness is sufficient. Failing to do so would deprive the world of our distinct and wonderful contributions.
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