For as long as I can remember, I’ve always been an extrovert and a very sociable person. I’ve always enjoyed spending time with people. Thinking back to my childhood even then I used to surround myself with a good bunch of friends and this carried on into my adult life. Weeks were filled with social activities. To put it simply, I'd thrive best when busy and I’d chose a social activity instead of a quiet day at home anytime.
Then encephalitis happened which left me with an ABI. Once the Hospital figured out what had happened to me I was rapidly released back into the big wild world with not much information about what to expect or what recovery would look like. However, it didn’t take too long for me to realise that things weren’t quite the same. One of the first things I noticed is how quickly anxiety seemed to take over my mind and body. I’ve never been an anxious person so at first this was a very weird sensation for me to experience. The uncontrollable thoughts/worries, the sudden onset of nausea, the heart rate ramping up, the excessive sweating followed by intense fatigue is how anxiety has been manifesting itself for me following my brain infection. I was quite good at rationalising it and understanding its triggers but it also felt pretty surreal as they weren't symptoms I was used to.
It affects me in a range of situations. For example, school pick ups are still challenging for me most of the time. There is just too much happening at once. Too many kids running around, too many kids talking up a storm, too many people merging into one place at the same time and then there is me trying, desperately may I add, to compose myself in front of other parents & teachers. All of a sudden that’s it, it’s too much for my weird wonderful brain and anxiety takes over.
My brain pretty much yells at me “stop, get out of here and fast...it’s too much for me to handle”.
In a way, it is kind of funny and I can see the humor in that, but it is truly what seems to be going on in that weird wonderful brain of mine! These feelings & sensations are so different from the old me that at times it makes me wonder if I'm a completely different person. As if the little green guys from a galaxy far far away stole the old me and replaced it with a copy/paste version of my body but with a brand new personality. I wish I was kidding but being part of various online support groups, I get to read lots of stories of people who have suffered from encephalitis (we call it e) and it seems like I'm not the only one walking around with a shiny new me.
Anxiety is now pretty much a daily thing I have to deal with. Some days I can brush it off relatively easy and other days I just gotta retreat into my bubble. I’ve found that i get particularly anxious around people that never got to know the old me, around people who don’t know me very well and in situations where I think (rightly or wrongly) that I have to perform. Most of you will argue that it’s not any different for them, that they all feel extra pressure/stress/anxiety or whatever you want to call it in some specific situations. I completely agree and in a way it’s good and comforting to know that everyone can relate to this.
I guess for me the underlying reasons for the anxiety comes from a combination of all the residual effects that the brain infection has left me with. Among a few, my speech can be quite slowed down and broken at times and my state of alertness/sharpness is somewhat hindered and I get very self conscious about all those little things that didn’t use to be part of me. I worry about how I’m going to come across, I worry about whether I’ll be able to express myself clearly, I worry about being able to keep on pace with what's happening around me, I worry about whether I’ll make sense and the list of worries on bad days can be just about never ending.
Every now and again I think that the main thing feeding this new found anxiety of mine is that I try too hard to be the old me...and I really do think that I'm on to something here. The personality shift sometimes appears to be such a big leap that I try extra hard to act like the old me but the brain doesn’t approve. It doesn’t like me trying to make it work in ways it can’t operate anymore. The brain is pretty clever in lots of weird wonderful ways and I think that instead of fighting the new me, I should just go with the flow more and be more accepting of the new facets that "e" has added to my personality. All very nice and easy to write about it aye...putting it into practice is another thing. In time, I hope that I find a happy middle between the old and new me, best of both worlds!
So all that to say, please forgive me for my new acquired social awkwardness. The girl who used not to fear social interactions is still in there under a bunch of self protecting mechanisms that allow me to cope on a daily basis. I still like to laugh, chat but it has to happen differently. I still want to be part of the life of the awesome bunch of people that surround me. Please bare with me dear family and friend, interactions just needs to be scaled down for a while longer but hopefully not forever and ever.
If you have suffered from Encephalitis and have developed anxiety, check out this fact sheet that The Encephalitis Society has put together...no point in reinventing the wheel right.
Hello. What an awesome, wonderful person you are! I too had meningoencephalitis and I can totally relate to your experiences of anxiety. I was becoming so anxious that I started thinking of ending my life as a way of coping, or rather not coping, with the new me. I was a dancer, performer and teacher before meningitis and encephalitis struck and I loved being the centre of attention so this new me was like an alien had taken over my body. I resorted to anti depressants, which worked but stripped me of all emotional empathy. After three years I weaned myself off them but sadly the anxiety has returned with a vengeance. I need to find another way to cope…
Hi there , firstly I’d like to say to all who have had encephalitis and recovered from it a big well done!..i had it last year from April to November, by November I developed meningitis too!.. I know I am lucky to survive all this let alone have half a brain left!! .. i want to herd from people about there experience with the horrible condition ..
This is so very similar to how my son has become so anxious after contracting encephalitis. It really does help to know that he is not alone, and that other people are affected in the same way. He has become quite depresssed having to explain how he feels to so many different people from government benifit agencies to friends and relatives including myself and his mother.
I am so glad I found this blog via the encephalitis society and look forward to reading more of your blog posts .