Tag Archives: memory

Brain Fog

I find the problems I have with memory, thinking and cognition are the hardest to explain to healthy people.  ‘Brain fog’ is a common term used by M.E. and EDS sufferers, but to me it trivializes a very serious problem and doesn’t go anywhere near to describing my speech, language, thought and processing difficulties.

I have woken this morning with quite bad ‘brain fog’.  I feel like my body has woken up, but my head still thinks it’s 3am and is still sleeping.  It’s that muddled kind’ve a feeling when you’re in deep slumber and something suddenly wakes you – you try to focus and be alert but most of your thought processes are still in the land of nod.  It feels like you’re drugged, like someone has slipped you a couple of Valium and then asked you to do quadratic equations and is pressuring you for the answers.

My ‘brain fog’ is a physical thing culminating in a numb patch right between my eyes.  If I press there on my browbone it’s actually tender.  When I was severely affected with M.E. it also used to throb – a banging, pulsating, rhythmic pressure right between my eyes which made thought impossible.

I woke this morning and turned on the TV to watch the news.  The images hurt my eyes.  Each flash of moving picture made me motion-sick and felt like an explosion in my brain, a bit like being drunk at a disco with flashing lights.  I have to look away and wait for the ‘still’ images of the presenters to come back on.  I’m really nauseous.

I feel dizzy and disoriented.  Lights are too bright, sounds are too loud.  My brain feels hung over, but with none of the fun of the night before.

My ‘dyslexia’ (for want of a better diagnosis) is off the charts.  I’f (I’m leaving that as I’ve just typed it so you can see what I mean!) I’d left this blog post as I’d written it you woudn’t (another mis-spelling) be able to raed (and another) it.  Honest (that should be honestly) it takes me an hour to type each of my blog posts and most of that is reading and re-reading them back to correct errors (thank God for spell-checker!).

My memory is scarily bad.  If I’d taken out shares in post-it notes I’d be rich by now.  I can’t trust my brain to remember anything, so have to write everything down.  I have a personal organizer in which I write all my appointments, but then I forget to look at it – it just ceases to exist in my mind.  So every Sunday night I sit and write little cards of what I need to do each day that week, and put each day’s note on top of my mobile phone so that when I turn my phone on in a morning I see the note.  I find my memory issues cause huge frustration in other people, especially those that don’t know me well.  I’ve lost count of the times at Camera Club that someone has said “I’ve already told you that, twice!” or who look at me strangely when I ask a question and I realize I’m supposed to already know the answer but don’t.  Last year I asked one of the members “do you live in town?” and he looked at me like I’d grown two heads because I’d actually been to his house the week before to pick him up!  I do tell people I have a brain injury but because I’m not elderly and because I “look fine” they don’t seem to grasp the fact that my brain is damaged and doesn’t function normally 😦

Learning new things is tortuous.  The current trend of technology manufacturers to keep making ‘new’ and ‘improved’ versions of phones, computers and the like drives me insane.  It took me over 6 months to learn the basics of my new smart-phone and 6 months later my provider wanted me to upgrade.  No way Pedro! (apologies for the UK humour there which no-one but us Brits will get 😉 )

My sense of humour has done a bunk.  In order to be witty (and I did used to be witty) your brain has to be sharp and on the ball not drunk and disorderly and stoned on imaginary benzos.   I miss being funny – it used to be a large part of my identity and I feel boring without it.

So basically I can’t spell or do math, I can’t remember what I did 2 hours ago let alone last week, I can’t watch a film without feeling car-sick, my speech is drunk, I can’t follow conversations well, my wit has done a runner and every thought I have has to wade through a muddy swamp in order to make it to the outside world and when it finally reaches daylight it’s disoriented and a bit dishevelled.

Yet I “look fine”.  And deep inside my brain I’m still the same old me.  Still as sharp and witty and with-it as ever but I’m somehow trapped inside my skull and only a shadow of myself can escape and make a bid for freedom.  My biggest wish is that healthy people would cut me some slack.  Would realize the difficulties I face every hour of every day.  I know it’s frustrating for them but I want to shout “if it’s frustrating for you imagine what it’s like for me!”  I wish they’d stop expecting me to be ‘normal’ and stop pressuring me to be healthy because I’m not.  If I were elderly there would be a lot more understanding of my limitations but because I’m in my forties I’m made to feel like I’m just being ditzy.

People ask about my body.  When a joint is braced they ask what happened.  When I’m wearing my TENS machine they empathise with my back pain.  When I’m wearing my finger splints they ask why.  But when I talk about my brain injury there is an embarrassed silence and then it’s never mentioned again.  I’m somehow made to feel like if only I were more organized, more together, or tried harder my brain would be miraculously cured.  If only.

 

My crazy life

There are days I seriously worry about my memory.  Since getting ME it’s not been great but the past 2 or 3 years my forgetfulness has stepped up a gear to the point where I’m scared I’ll do something dangerous, like leave the hob on full all night.  No, wait, already done that.  Twice.

I’ve been blaming my dwindling hormones and, while I’m sure they don’t help the situation, I’m not convinced they’re the sole reason for my rapidly declining ability to remember what day of the week it is.  I actually think I just have too much on my plate and there’s only so much a noggin with the equivalent of a head injury can cope with.  Here’s last Wednesday’s schedule:

  • Woken by Bertie at 5.45am.
  • Up, dog fed, dog’s tummy rubbed, and a brew drunk (me not the dog) by 6.15am.
  • Facebook read and comments replied to, blog comments read and answered and emails read and answered by 7.15am.
  • Breakfast at 7.30am.
  • Remembered to polish silver trophies ready to return to Camera Club for annual Trophy Ceremony next month.  Placed in bag to take with me to Camera Club tonight.
  • Boxed and wrapped item I’d sold on Ebay.  Placed in bag ready to take to town to post later.
  • Up and dressed by 9am. Remember to put on SI belt and TENS machine under clothes as going to be standing a lot today and can’t take the pain without them.
  • Dog walker arrives to take Bertie out.
  • Unstacked dishwasher.
  • Restacked dishwasher with last night’s dirty pots.
  • Took a load of clothes out of washing machine and placed in tumble dryer.
  • Put another load of laundry in washing machine.
  • Remembered to put pre-cooked meal in bag to take to Mum’s.  I’m eating dinner there as I’m going into town this morning and it saves me a trip back home only to have to go into town again tonight for Camera Club.
  • Bertie arrives back with wet, dirty, feet.  Wipe paws while chatting to dog walker.
  • Tidy house as cleaner here for 3 hours this afternoon.  I won’t be in, so remember to leave out clean sheets, a list of what I’d like her to do and her wages.
  • Remembered to put Bert’s food in bag ready to take to his Nanna’s who is dog sitting tonight.
  • Remembered to put change of clothes in bag for Camera club this evening.
  • Cleaned my camera’s lenses and packed spare battery and memory card in camera bag – I am photographing Prince Charles today!
  • Bundle self, dog, camera bag, handbag, lunchbag, Camera club trophies and parcel to be posted in car.
  • Remembered to leave key in hidey hole for Cleaner.
  • Remembered to put card through neighbour’s door as it’s her birthday today.
  • 10.45am set off for town.
  • Post parcel.
  • Collect Dad and drive out to Lake.  Wait for 1½ hours sat on seat stick in freezing cold waiting for our future King to arrive.  Got great picture.  Cool 🙂
  • Drive Dad, self and dog further up the lake for lunch.  Dad’s been a bit down so wanted to take him on a rare day out for a treat.  Energy is seriously flagging.  Legs and back are on fire.  Turn up TENS machine.
  • Get back to Mum’s at 3.30pm.
  • Recently switched Mum’s electric tariff online, however there’s a problem so I spend the next 52 minutes on the phone sorting it out.  Head is now throbbing.
  • Feel so ill I make a hot water bottle and crawl into Mum’s bed for a 1½ hour battery recharge.
  • Eat dinner.
  • Wash face, comb wig, change clothes.  Feel like the waking dead.
  • Leave for Camera Club at 7.10pm, remembering to turn up TENS machine to warp 10 before setting off.
  • Have lovely two hours even though am being electrocuted and am so fuddled with exhaustion I can’t think straight 🙂
  • Pick up dog from Mum’s, drive 20 minutes home, unpack car, make hot milky drink, change into Pjs and put laptop on because I’ve forgotten to add loo roll to my Tesco basket and my shopping is arriving at 9am in the morning.
  • Midnight: still awake as too wired/tired to sleep plus can’t get hips or back comfy.
  • Bertie wakes me the next morning at 6.10am.

And so a new day begins.

Admittedly this was an exceptional day in as much as meeting Prince Charles isn’t generally on my to-do list,  the last time Dad and I went out to lunch alone together was 2012 and Camera Club only happens once a week, but on the whole this is my life.  It’s absolutely stark staring bonkers and I’m not surprised with everything I have to remember that my memory simply shuts down on me.  I’m amazed it hasn’t left home altogether.

 

 

Weekly roundup

This week has been eventful in both good and bad ways.  On Monday I took my Dad to the GP for his memory test.  Sadly he did fail some sections and he’s now been referred to the Memory Clinic for further investigation, so it looks like the GP does suspect Dementia of some kind.  I can’t even begin to process the implications of that if I’m honest.

Tuesday I woke with a stonking migraine which I had all day.  Sod’s Law when the weather was glorious.  My coldsore turned nasty and, just when it was at the scabbing over stage, I developed another one right next to it.  There’s no need for it.  Zero needy-ness!  It’s now finally drying up but still cracking and bleeding every time I speak or eat!  At  least I’ve stopped feeling quite so fluey though – I was proper rough for days.


On Wednesday I had to give a 10 minute presentation at Camera Club on my favourite pictures of this season.  I took the opportunity to educate my fellow Photographers on Ehlers-Danlos Syndrome, showing them a simulated picture of how severe floaters affect my eyesight and how frustrating this is as a photographer.  I also took along the little leaflet I’d designed and was delighted when several members took one away with them and a further few asked me all sorts of questions.

Photo of floaters in visionI had one of the nicest days of my year so far on Thursday.  My Camera Club had arranged an afternoon out at a nearby beauty spot.  The spring weather was glorious, the company was great, we had a lovely potter around and then sat outside to eat lunch.  I wish I had the energy to do things like that more often and wasn’t quite so crippled with pain afterwards.

It’s been a month now since my GP wrote to my local hospital asking them to transfer me to Newcastle for my operation and I’ve heard diddly squat.  So I chased up the local hospital only to find they’d “never received a letter from my GP” and had no idea I wanted to be transferred.  I was absolutely furious, not only that the process of being seen in Newcastle hasn’t even started yet but that a very private letter containing personal medical details has disappeared to God knows where – how is that allowed to happen?!  The consultant’s secretary said it was up to my GP to write directly to Newcastle to refer me, whereas my GP had said it wasn’t her business and it was up to my local hospital.  As a patient it shouldn’t be up to me to chase this up or sort it out FFS!

I explained how concerned I am, being as though this mass was found nearly 5 months ago and cancer is suspected.  She said cancer is not suspected and I am not being fast-tracked.  I said that’s not what the consultant said in February, when the ultrasound had shown I had a complex cyst, my CA 125 result came back at 112 when it should be under 35 and that he was bumping me up the waiting list for surgery.  She didn’t answer that and said she’d chat to the consultant that afternoon and ring me back.  Only of course she didn’t.  I have no clue what business it is of admin staff to question my diagnosis or the urgency of my care.  I rang my GP again and asked her to re-send the referral request so it’s back to waiting.  It’s just not good enough and if this cyst turns out to be something sinister I will create merry hell.

On to more positive news.  Dr Afrin, arguably the world’s leading expert on Mast Cell Activation Disorder, has written a book on the subject hurrahhh! 🙂  Available from UK Amazon and USA Amazon but currently only in hard copy.  I’ve ordered mine so will let you know what I think when I’ve read it.   He also took a seminar for Doctors on the disorder down in London a few months ago and I’m currently investigating whether a DVD or recording is available of the event.  I do wish the World Health Organisation would hurry up and formally recognise MCAD as a disease so that the NHS would at least be forced to accept its existence.  If you have MCAD you’re supposed to be monitored twice a year – I haven’t seen anyone since my diagnosis in 2013 as I simply can’t afford any more private consultations with Dr Seneviratne even if I could cope with the 600 mile eight hour journey involved.

Wednesday was the 5th anniversary of the day I adopted Bertie.  He is exceptionally hard work to look after and takes up all my money but he is also the light in my life and I can’t imagine my days without him.  As I type this he is asleep between my legs on the bed and I’m getting a crick in my neck balancing my laptop on my right thigh and trying to type at an angle 😉

 

 

Cognitive dysfunction

The term “cognitive dysfunction” is given to symptoms which affect mental processes such as memory and reasoning, but is more commonly used by patients to describe any kind of brain symptoms.  I’ve always put my cognitive issues down to having M.E., but people with Ehlers-Danlos, POTS, Fibromyalgia, Lyme and MCAD also suffer with brain symptoms, so cognitive dysfunction is common to many diseases.

  • Brain fog
    This is one of the most commonly reported cognitive symptoms.  For me it feels like I’ve been woken at 4am from a deep sleep, fuzzy and heavy headed, with unclear thought processes, feeling confused and not really ‘with it’.  Or like someone’s slipped me a sedative and I’m trying to fight my way through an altered state of consciousness.  Other people describe it like their thoughts are wading through treacle.  At times it’s so bad that my brain literally freezes and I have no choice other than to just lie down and wait for it to kick-start again.  I haven’t had one single day in over 20 years where my brain has felt clear and it sucks.
  • Memory:
    I’ve never had good long-term memory and am not one of those people who can hear a song and say which year I was in at school when it was in the Charts.  But my short-term memory was always excellent and when studying I just learned things off-by-heart (I can still recite nearly every word of Grey’s ‘Elergy Written in a Country Churchyard’ I learned for my ‘O’ level English exam when I was 16!).  Sadly my short-term memory has now been robbed by my illnesses and there are days where I feel like I’m in the early stages of Dementia, with neither my long-term nor my short-term memory working well.  It’s scary, particularly when you live alone.  I wander into rooms and have no clue why I’m there.  I forget entire conversations I had only hours earlier.  Thank god for post-it notes and the Task alarm on my mobile phone, without which I would not take my medication, put the bins out for collection, order my groceries or do any other of the 101 things needed to get through every day life.  On the up-side, I can’t remember a book I read last month so get to read it all over again without remembering the plot or any of the characters 😉
  • Speech:
    When I was severely affected by M.E. I developed a severe stammer which thankfully disappeared as I improved (though still comes back on my worst days) and for a whole year was unable to speak at all – I knew what I wanted to say but the words just couldn’t find their way out.  I have difficulties at times with slurred speech, which I put down to tired tongue muscles but which could also be some kind of brain symptom – there are days when I know I sound drunk (I wish!).   One of my worst problems, however, is muddling my words up: knowing I want to say “dog” but coming out with “bog”!  It’s so embarrassing and there are days I sound like a complete loony toons, coming out with gobbledygook that makes no sense whatsoever.  What with saying the wrong words and even those said like I’m drunk I dread to think what Joe Public makes of me 😉
  • Writing:
    One of the first things I noticed when starting to develop M.E. was that I’d become dyslexic, frequently switching letters or writing the correct letter but back-to-front.  Writing these blog posts I’m just so thankful for spellcheck, otherwise you’d be raebing a laod of odl triep 😉 . There are days when I can’t remember how to spell the most basic of words, like “it” or “of” and I have to remember old nursery school rhymes for more complex words like niece  (“i before e except after c”) 😉 .  It’s exhausting!
  • Information processing:
    When I hear about people with M.E. doing ‘A’ levels, or even going to University, I am totally gobsmacked.  There are days I can’t even make sense of my shopping list, let alone write a Dissertation, and can only read about 5 pages of a book before my brain is simply overloaded and I have to quit.  When I was severely affected I could only watch TV in 10 minute chunks before I felt like the inside of my skull was being battered with a hammer, and even now there’s no way on earth I could watch a film all in one go.  Learning anything new is tortuous and when I bought my DSLR camera it took me an entire year just to read the instruction book and make some kind of sense of it and another 2 whole years for the instructions to actually sink in!  This is why I don’t buy gadgets – it took me a year to learn how to use the mobile phone I already have without then upgrading it and having to start all over again 😉
  • The weird and the wacky:
    There are lots of symptoms which aren’t technically to do with cognition, but are brain related.  For me these include:
    – Seizures, which I used to have lots of when severely affected but which thankfully have now resolved.
    – Altered sensation in my head, ie pins & needles, buzzing, electric shocks, numbness, goosebumbs, tingling and crawling.
    – Feelings of unreality.  Have you ever had a bad shock and kind’ve felt like you’re having an out of body experience?  You’re physically present but you feel like you’re looking at the situation from afar or like you’re on some kind of autopilot?  I feel like that every day of my life.
    – Dizziness and vertigo.  Feelings of movement when stationary (I usually feel like the room has suddenly shifted to the side and then back again), or feeling like the ground is coming up to meet me when walking or that I’m walking on the waves of the sea.
    – Cramps, which feel just like they sound, ie. like having a leg cramp only in my brain which is really sodding painful.
    – Inappropriate behaviours, eg putting my socks away in the fridge instead of the sock drawer, or feeding the dog butter instead of dog food (not that he minds one iota!).
    – Sensory changes: heightened sensitivity to light, noise, touch, taste, smell, vibration and movement.  When I was severely affected these were amongst my most debilitating symptoms but have now largely resolved.

I’ve probably missed out several other brain-related symptoms but to be honest after writing all this I’m tired now so my memory and ability to think is fading – my dyslexia is also worsening the more tired I become and I wish you could see just how many mistakes I’ve made just writing this one sentence!  There’s also the fact that I’ve lived with these symptoms for 2 decades now, so to me it’s just become the norm.  I forget how my brain should function and that all the issues I have on a daily basis aren’t normal.

Cognitive symptoms are almost impossible to treat, as the cause is unknown.  I tried just about every drug and supplement known to man to try and ease my brain fog and none of them helped.  The good news is that, as my M.E. improved, my brain symptoms became less intense and some, like noise and light sensitivity, are now very minimal and only bother me on really bad days.  As for the rest I just had to find a way around them, like using alarms, spellchecker and endless lists – now if only I could remember where I put the lists they’d be super helpful 😀 .

My Fuddled Brain

M.E. and dysautonomia both produce symptoms of “cognitive dysfunction”, in other words your ability to think clearly, remember things, concentrate and/or process new information.  To me, it’s always felt like I’m drugged or have been in a car accident and suffered some kind of brain injury.  Writing a shopping list feels like I’ve been woken at 4am and asked to recite War & Peace in a deep state of foggy stupor – I can feel my brain hunting in its murky depths for the information and I have to grasp at odd words like “toilet paper” as they float past in the gloom.  When I’ve had to concentrate (to write this blog post for example) my brain feels battered and bruised and eventually starts to thump, and if I keep on going the room will eventually begin to spin.

My lack of memory scares me.  I got in the car the other day and for several minutes forgot how to start it.  I write important lists of things I absolutely have to do, then either forget where I’ve left them or if I remember where they are I forget to look at them.  I dread meeting new people because it might take me the next 5 years to remember their face let alone their name.  I forget passwords, pin numbers and my own telephone number (that I’ve had for 10 years).  I wrote a cheque the other day and couldn’t remember how to write the date.

The other thing that scares me is a weird ability to block things out.  For example, last week I needed to remember to take a bag of items to my Mum’s house and knew I’d forget.  So I placed it on the kitchen counter, with my car keys on top of the bag – have to pick my keys up, consequently I’d have to pick the bag up.  Er……..nope.  Picked the keys up and didn’t even register the bag was there – it might as well have been invisible.  Last month I had a dental appointment, after which I needed to go to the supermarket for some bread.  Dropped my dog off at my Mum’s and drove the 3 minutes up the road to the Dentist.  Got to the supermarket, bought the bread, and only realized as I walked back to the car that I hadn’t actually been to the dentist yet!  For someone who was always totally on the ball it’s frightening to have these bizarre kinds of blackouts.

My lack of ability to concentrate frustrates the hell out of me.  I haven’t watched a film in one sitting since 1996 and Lost was easier to follow than the plot in my favourite Soap 😉 .  Reading anything more taxing than the TV Listings magazine blows every brain cell in my head and if a book contains more than 3 characters I have to make a list of who’s who.  And don’t get me started on the embarrassment factor of chatting to someone and suddenly realizing there’s silence and I’m expected to say something, only I zoned out ages ago and have no clue what the question was.  This inability to maintain concentration has a profound effect on learning new things, which I long ago stopped trying to do.  I dread needing a new mobile that’s different to my last one and panicked this morning when I realized my Sky tv box had updated in the night and now looked totally different – trying to learn a new way of doing things is a bit like trying to catch fog.

Then there’s the inappropriate actions, which I’m putting in the “lack of concentration” category but I really don’t know the cause of.  For example, I keep my dog food in the fridge.  Went to get it out yesterday morning and was walking up the hall to put it in the dog bowl when I realized I was actually clutching a tub of margarine.  Then there’s trying to change the channel on the TV with the handset of my cordless phone, or opening my sock draw to find a bag of carrots and no sign of the pink knee-highs I was looking for (don’t ask!).  I lose things constantly and they often turn up 6 months later in some obscure and wacky place they don’t belong.

I was never very good at maths but since getting sick I literally have to count on my fingers, and my ability to spell (which I’ve just typed as speal) has totally done a bunk.  There are times I forget how to write the most basic of words, like “the” or “of”, or use all the right letters but put them in the wrogn order 😉 .  I have not written a single blog post which hasn’t contained a typo, despite the fact I check the damned thing 10 times before it’s published.   When I’m really tired and am trying to read, the text goes green or purple and swims about on the page – not sure what that’s all about but it’s a good indication that my poor struggling noggin needs a rest.

Cognitive dysfunction can also affect speech and when I was really ill I developed a stammer which would come and go, and at times I lost the ability to speak altogether.   I also forget the names of things constantly – there’s just a black hole where the word is supposed to be – or use the wrong word for simple every day objects (eg. fur instead of dog).  I spoke to my Uncle in Australia last week and called him by his first name, forgetting to put “Uncle” in front, which I know is trivial but felt really disrespectful.  And when I’m really tired my speech becomes slurred like I’m drunk (I wish!).

As I’m entering menopause my brain function has gone from fairly addled to totally scrambled, to the point where I wonder if I’m starting with early dementia.  When I talk to my Mum about it, however, she just laughs and says “welcome to middle age”!  I know even healthy women get forgetful when they’re menopausal, but when this comes on top of already quite scary brain function it does feel a bit (ok, a lot) like I’m losing the plot.