What’s wrong with my brain.

This is a bit of a mammoth post. 

Something that took me a long time to accept after contracting meningitis in 2001, was that my brain was changed, and not changing back.  During occupational therapy I was a mess, and my brain a bit mush for a while afterwards. I was very lucky, but I had very different limitations. 

Let me explain.

Bacterial Meningococcal Meningitis causes the meninges (the membrane lining between your skull and your brain) to swell. The lining starts to press so hard against the inside of your skull and into your brain that it hurts your head all over (it was painful to move my eyes), and then the bacteria goes down into your spine, causing a stiff neck, rashes and fever.  If untreated, it causes brain damage and death.  With high mortality rate (1in 10 die, even with treatment), it also leaves children without limbs and adults without hearing or sight.


I was very lucky. Incredibly lucky.  I also didn’t know any of this when I actually had it.  Optimism!



I was 17, and ridiculously-stretched, even for a teenager.  Let’s just say I was an over-achiever.  At the time I fell ill, we were about to have the 75th Jubilee of my highschool, and I was due to appear in 3 choirs, the orchestra, the school musical, the school percussion group, and concert.  I was probably pretty run-down, and running out of energy, but I didn’t notice. And I don’t even know how I got sick. It’s commonly spread by saliva, by sharing drinks and coughing or sneezing on each other.  I was in choir and probably picked up the wrong water bottle. Who knows.  We stopped caring pretty fast.


I can list the symptoms and tell about the 8 days in hospital, and how my folks thought I would die, but the purpose of this isn’t to get overdramatic.  If you want to know more about the disease, go here. Let’s just say I was pleased to go home and become an outpatient, and completely unprepared and unrealistic about what would happen next.  I fully expected to sit my exams and carry on with my life.  What I got was 6 months of confusion and mental difficulties that, although diminished, have never gone away.



Suddenly, (tragic for 17), I couldn’t tolerate many sounds, including music.  Music above a quiet volume hurt my head and my ears.  I couldn’t go out in bright sunlight, or even just on an overcast, bright, glary day, without some sort of protection for my eyes.  And although I was already clumsy, it became a bit ridiculous. My weaker side (everyone has one) was even weaker, and I’d trip over everything, drop everything and struggled to grip properly with my left hand.


Exhaustion started to take over. And not just in the evenings or after a long day.  It was constant.  This meant my irritability sky-rocketed.  Having been a bit of a hot-headed and stubborn Taurus anyway, I soon became the grumpiest girl on the planet.  And telling me this made me almost impossible to be around.  My relationships with my family and boyfriend struggled and were pushed to their limits.


I also had no filter.  If in a room with two different conversations, I couldn’t concentrate on either.  Most people have it in-built, where they can listen to just what one particular person is saying, and cut out the rest.  I couldn’t cope.  It was a confusing and frustrating cacophony.  This also occurred in conversations with the television or music in the background.  I went back for my last day of school (ever), and had to come home around lunch time.  It was a bit too much for me.


It was like a battle of the senses. I would genuinely turn off music to eat. You know how you turn down music to concentrate on where you are driving?  I would turn down music or stop talking to someone so that I could concentrate on what my food tasted like or on reading something short and trivial.  I couldn’t do both at once – my brain just didn’t want to.


And while I struggled with my senses, I also struggled with my words.  At times I knew what I wanted to say but just couldn’t put it together. Or I would walk into a room and not know why I was there.  I’d heard my mother joke that this was happening to her, but I was 17. One particular time I recall trying pointlessly for 15 minutes to “find toast”.  I wanted toast, but had no idea where it was in the kitchen, before I found bread and remembered it needed to go in the toaster.  Muddled muddled me.


While most of these problems have lessened quite dramatically, I still have all of them to some degree. I still block my ears in big explosion-y blockbuster movies/loud gigs.  I wear sunglasses on most days (yes, even in Scotland), so I have about 6 pairs.  I’m still clumsy; though not as bad with tripping and gripping (hee!), I drop everything if I’m trying to be at all dexterous with my left side.  (Just ask Dave about the bowl of carrot he grated last night for dinner, that never actually made it into the pan).


I have a filter back of sorts, but probably not what regular people have. But hey, it’s all I’ve got, so I don’t know any different/miss it anymore.  I struggle to maintain conversations in loud bars or busy rooms, and find rapid-fire dialogue or mumbled speech on TV very difficult.  My hearing, when tested at the airport, was nearly perfect.  I hear the words, but my brain can’t interpret them properly or quickly enough to “hear” what was said. Luckily I’m getting to the age where I spend less time in loud bars!


I don’t struggle so much with senses or words, luckily, apart from keeping music down when driving somewhere I don’t know (but most normal drivers I know do this!). 


Unfortunately one thing has really stuck around: my memory problems. My mother used to ask me to do something, or pick something up, and I would have no recollection of theconversation.  Dave and I see movie trailers and I don’t recall seeing them, and he teases me relentlessly. (Though I am sure some of them I have actually not seen and he is just being a pain!)


It does mean I can watch movies again without completely recalling what happens.  If I saw it pre-2001, I may remember it quite well, but I just can’t retain things.  And I am genuinely confused when people are surprised I have forgotten something already.  Dave is always telling me when he is going to be out or away, and I always forget.  Now we sync our Google Calendars together to our smartphones, and luckily I’m pretty good at putting everything in.



The exhaustion has also never left. I just learned to deal with it differently.  If I’m having a big night out, I’ll nap in the afternoon. Friday nights are harder, if going out late after work, but I find I can cope and adjust to it if I’m also prepared mentally to be out late.  And we just don’t go out at that much anyway, with our current finances! It was much tougher when I was younger, and I received funny looks for not being a late-night partier.  Now we’re in our *cough* late twenties, I can get away with it more without judgement. Which is odd, really.  Don’t be judgey!


I sleep more than the average person, usually 8-9 hours on a week night and 10+ if it’s a weekend or day off.  I no longer have an “off switch” when it comes to sleeping. Something may disturb me enough to wake me up, but I could probably sleep 16+ hours if in a quiet, dark room.  I need to set alarms for naps if Dave is not around.  I imagine I’ll be sleeping very early/long when he is at Tulliallan.


I’m not as irritable. Yes, I get cranky in the mornings, but I’ve been like that since birth (and Dave is no better!). I’ve had to learn patience and tolerance on a larger scale, and I think this has actually generally just made me a better person.  My nieces were quite challenging at first, with their boundless energy and noise, but it is easier now and I am not concerned about having my own children. I’ve definitely got a higher tolerance for it.


My immune system is also shot. It was low already for me to get the meningitis, so it never really bounced back properly from that.  I try try try to take Vitamin C and B and eat properly and exercise and soak in hot baths if I feel off and yada yada yada, but I get still so many colds and sniffles and bugs and ugh. It’s annoying.



And a good way to explain my energy, I think, is this:  Everyone has “reserves”.  You have an energy supply, and then a few hours of “reserve energy supply”.  If you are tired after a long day and are lacking in sleep from the night before, you tap into the reserves to keep going a bit longer before you can go to bed.  For me? I just don’t have reserves.  I get to a certain point every day, and I’m done. That’s it. Must sleep now. Sorry.


It also sorta worked in my favour to be a shift-worker at the airport, because I would work ridiculously-early hours, then come home and nap.  I’d get up and have part of my day, then have dinner and get some things done, then go back to sleep.  It was surprisingly doable.


These days, as a 9-5’er (well, 8:30 to 4:30), I simply have to know my limitations.  I am always going to be hopeless in the morning, so I try to prepare the night before.  I keep my gym bag in the car.  I try to go to bed earlier than I think I should go to bed at.  If I’m going out on a work night, we have to be home at 11ish.  If we’re going out on a Friday, I can’t always cope ’til 1am. But now we have the car, if I don’t feel like I can, I can always come home.


And I need to recharge.  One of my days on the weekends has to be to rest and relax, not to rush around getting everything done.  I usually try and laze Saturday and be productive on a Sunday, to get the week started.



So my brain is a bit mushy.  But you adapt and grow and do what you have to do. It’s hard sometimes for others to understand why I go home early, or why my eyes are streaming tears down my face on a bright day.  I may drop everything you give me or struggle to remember things, and sometimes I just won’t quite understand what you’re saying.


But I’m lucky, I’m alive, and it all just makes me quirky, right?  11.5 years and counting.


5 thoughts on “What’s wrong with my brain.

  1. Rebecca – it's been an interesting ride, learning and making sense of what I can cope with. I'll be damned if I can't do everything I want to in life, though!xx

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