Encephalitis and ADHD- Looking to Connect with Other Survivors

Hi everyone, my name is Andrew.

Firstly I wanted to thank Jessica for her fantastic resource of videos, which me and my fiancee have binge watched for the past few days (we are fairly sure my fiancee is also ADHD.) They’ve been wonderfully empowering, and have helped me to get closer to fully accepting my condition(s).

My story with ADHD goes back to early childhood.

Following a chicken pocks infection, I woke up one morning and realised that I couldn’t move. I called out to my parents, who came in to find that I was running a high fever - and was completely paralysed. Luckily my mum was a trained nurse, and had the good sense to rush me downstairs and put me into a cold bath, to help slow the damage being done to my brain, before calling an ambulance.

My prognosis was not good. The doctors didn’t know what was wrong, so they flew in a specialist from London (I live near Glasgow), who sat my parents down and told them that I had encephalitis; a fairly rare condition which damages the central nervous system. He told them quite confidently that I would never walk again, that I would be confined to a wheelchair for the rest of my life, and that I would need constant care.

Naturally, this all came as rather a shock. I wonder if it’s any coincidence that my parents don’t remember much from this time, that there isn’t any photos of me, etc.

I spent the next several weeks at home, being carried from room to room. I do remember looking out the window onto the street and seeing my friends playing. And also watching Teenage Mutant Ninja Turtles from a blanket on the floor.

Steadily I began to regain use of my fingers, then my hands. My most powerful memory of this time was trying to hold a spoon, and desperately trying to get the cereal from the spoon into my mouth without spilling it everywhere. I remember crying in sheer frustration.

After that I don’t remember much, except learning to walk again. Getting from one couch to another, like a toddler. The doctors were amazed. I was however left with a permanent tremor, especially in my hands. To this day, if I concentrate too hard, or if I’m tired (which is a lot) I frequently spill the spoon’s ingredients en route to my mouth! I also involuntarily drop things a lot.

After that I was expected to just get on with my life, as normal. The doctors, the specialists never warned my parents about other residual symptoms and problems. And all my life, until I was 26 years old, I was never once told about ADHD.

To cut a long story short, I had a terrible time at school, from the ages of 6-17. I was plagued by memory problems, lateness, tiredness, bullying, and in every school report the word ‘potential’ was used over and over again.

After leaving school with poorer exam results than I’d hoped, I went into the world of work - which was an absolute disaster. I crashed through job after job, was abused as being lazy, annoying, hopeless, despite trying my literal hardest to succeed. Every new day was ‘The’ day. The day I would be on time, the day I would do my job better, faster, etc. After more than 30 jobs of this, I was losing hope. My relationship with my father, always fractious, had now totally disintegrated.

The crux came in my mid- twenties. I’d moved into a flat with my then partner, and I was working as a self-employed taxi driver. Week after week I barely made way-in, with next to zero profit. I worked 18 hours shifts, and I still couldn’t make money. I just couldn’t figure out what the hell was going on. One night I was assaulted and robbed at knife-point, and I couldn’t face working nights afterwards.

My debt skyrocketed. My relationship imploded, and I had to move back home. I was in a very dark place. My drinking, which was pretty constant all my life, crept up, until I was drinking too much every night. It helped me to slow my brain down, but more importantly, it temporarily alleviated a lot of the self- hatred I’d accumulated throughout my life. When I drank I could feel good about myself for a few hours. To this day I still carry that self-hatred. Like a shadow.

Around this time my young cousin was exhibiting unusual behaviour. He was taken through lots of testing, and was discovered to be highly autistic. It was during this testing that my aunt spotted something. When my cousin was tested for ADHD, the questions and symptoms described made my aunt immediately think of me. She told my mum, who convinced me to look into it.

First thing we noticed: encephalitis and ADHD have a long history. I might be mistaken, but I believe that ADHD was discovered indirectly from encephalitis.

ADHD and encephalitis explained perfectly all the problems I’ve had throughout my life. I went through the rigorous testing to get diagnosed, until it was absolutely certain. I also had an MRI scan, which showed faint scarring on my brain.

Christ, I didn’t mean for this to become a life story. Sorry. If you’re still reading, thank you.

Anyways, since my diagnosis my life has improved immeasurably. I met the most amazing woman, and asked her to marry me. I love her more than I thought it was possible to love someone.I live in a little coastal town that is quiet, I have a dog. Life is good.

But I still try to live may life like I’m neurotypical (thanks for that word, Jessica). A lifetime’s worth of being told I was lazy, or stupid, or didn’t care, or was too selfish, or worthless is ingrained into my image of myself, so that even with my diagnosis, I tell myself that I don’t REALLY have ADHD, that I’m just using it as an excuse for being so lazy etc. I never give myself a break. Contrary to all the evidence, I still believe that I’m a horrible person, that I’m a liar, an imposter. Every day. On top of that, failing in everything I attempt again, and again, and again, and again endlessly.

Hence the self-hatred.

I don’t know where I’m going with this. I just wanted to connect with other people who can relate to similar circumstances. I’m not detracting from anyone, but being diagnosed as a child seems so much easier. You have some inkling as to why you have the problems you do.

Otherwise, you spend the entirety of your life being told you are lazy and selfish and stupid without any reason to believe otherwise. Being diagnosed as an adult requires you to unlearn all of those things about yourself, programmed into you by society over years, decades. Not least in this country, which still doesn’t take mental health, never mind ADHD, seriously.

Sorry, this just turned into a self obsessed rant, which wasn’t my intention. I just have a lot of mental baggage to unload. I’ve been diagnosed for 7 years. Does acceptance get easier?

Thanks for your time and patience.

Andrew.

2 Likes

So sorry for all the pain you’ve gone through! Hopefully you find good support and tools here to help with your recovery and healing. Welcome to the community!

1 Like

Thank you. I feel like all I’ve done is rant and feel sorry for myself, which isn’t what I want to do at all-
It’s just difficult to provide a degree of background without wading into the bog of self pity. I actually consider myself very lucky, but I am frustrated to have slipped through so many cracks.

Anyways, it’s a pleasure to meet you, and thank you for replying.

Andrew.

1 Like

Not at all . . .

It is your story . . .

We each have our own . . .

As a newcomer you have taken the “plunge”. Not everyone is brave enough! Best way to jump start your journey with us “brains”!

B😎

1 Like

Thank you Brooklyn :blush:

1 Like

Most welcome!

1 Like

Hello Andrew, I don’t see any self pity in your story at all, it’s a story of strength to my eyes.

Try to love yourself more, in the same way that you let yourself love the others in your life, not sure how the best way to do that is, something I struggle with myself. I hope you find your way to acceptance soon.

2 Likes

Hear, hear!

I learned one way from this mindfulness group called “Search Inside Yourself” that I joined from work but think about someone who loves you unconditionally, even if it’s your dog/cat/goldfish. For me it was my recently deceased grandmother whom I idolized growing up. You think about the pain and self-loathing you have and write a letter to yourself from their perspective. What would they say to you if they knew you were hurting so much? I found this to be a powerful exercise that I basically cried through and found an immense sense of catharsis. For me, I have a very easy time feeling a common sense of humanity and compassion even for strangers - but when it comes to myself, less so. Jessica had a great video about it with an analogy of “filling up your cup.” @Andrew_Wood, try that exercise and don’t beat yourself up, you’re self actualized and that’s a really great first step in the direction towards positive change. All the best! :slight_smile:

1 Like