Tag Archives: brain fog

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.

 

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Memory Problems

I’ve never had a particularly good memory.  I did well in my school and college exams but only because I meticulously learned everything parrot fashion otherwise I couldn’t remember a thing.  I’ve always had to make written lists of things I needed to do – relying on remembering stuff would have been disastrous – and wish I’d taken out shares in Post-it Notes because I’d have made a killing.  And then along came my meningitis, which turned into severe M.E., and my previously poor memory became dire.  Add to that the looming menopause and I honestly feel like an early-onset Alzheimer’s patient.  Which sounds dramatic, until you realize my Dad is currently being tested for Alzheimer’s and I’m sitting in on the tests with him, doing them along in my head and often scoring worse than my Dad.  I don’t know whether to laugh about it, or be absolutely terrified.

The front door to my parent’s apartment is security coded – you have to punch in a set of numbers before you can open it – but I have to keep the code in my mobile phone because on several occasions over the years I’ve stood by the door and not been able to recall a single digit even though they represent numbers both my parents and I should find easy to remember.

I’ve sat in my automatic car and forgotten how to start it.

I have to have alarms on my mobile phone to tell me to put the dustbin out each week and don’t get me started on the recycling, which is every other week with garden on one day and the household stuff on another – I’d be completely lost without reminders.

I have reminders to tell me to blow the car tyres up and check the oil.  Reminders to clip my dog’s toenails.  Reminders to do mine and my parents online grocery shop each week.  Reminders to charge my mobility scooter battery and, having put in on charge, a reminder to turn the sodding thing off again.  Even a reminder to have a bath, otherwise I can go 10 days and forget to wash!  There have even been days where I’ve forgotten to eat lunch and it’s gotten to 4pm and I’ve suddenly realized I’m ravenously hungry.  FFS.

Another memory issue I’ve always struggled with is recognising people’s faces and, since getting M.E., this has gotten totally out of hand.  There’s a woman who lives in my village who I’ve regularly seen to wave to or have a quick chat to over the past 12 years, but I recently saw her in the supermarket and walked straight past her like she didn’t exist.  Because she was out of the context of the village I simply didn’t recognise her and now she must think I’m a right snotty cow who only talks to people when she feels like it.  Same thing happened at a local country fair the other week.  I went with my camera to take some pictures and this man came up to chat to me, also carrying a camera.  He obviously knew me and his face looked familiar, so I winged it and decided he must belong to my Camera Club.  I’m asking if he’s entering the competitions this season and if he’d been on any of the club trips this summer and could see he was looking slightly puzzled, until 20 minutes into the conversation I twigged that he was indeed a Camera Club member………..just not of my Camera club but one 30 miles up the Motorway! I felt soooo stupid and he must think I’m totally off my rocker.  Then there’s the time I asked one of my Club members where he lived and he looked at me like I was mental because I’d actually been to his house to pick him up the week before!  And don’t get me started on people’s names.

I’ve become one of those annoying people who says the same thing not once, not twice but often three or four times.  Then I see the look of annoyance on people’s faces and the exasperated “yes, I know, you’ve already told me!” and feel really, really dumb.

I’ve now gotten to the stage where I’m honest with everyone.  I’m giving a talk at my Camera Club next month on some new software we’ve all been using and am starting with “I live with a mild brain injury, which affects my short-term memory so I really struggle to learn new things …….”  and can only hope it will explain some of my strange behaviour and that the members will be more understanding of me in the future.

The one thing my poor memory has given me is compassion for other people, particularly my parents both of whom now struggle with their memories.  It’s easy to get irritated with someone who’s told you the same story 10 times, but to them they’re telling it for the first time so I try and listen like it’s the first time I’ve heard it.  We laugh about them calling things “wotsit” and play the “guess the item” game when Mum in particular can’t remember the name for something.  I guess it won’t be quite so funny though when my Dad forgets my name or the fact I’m even his daughter.

When my brain fog is really bad, and my sensory overload is really bad, and my sound and light sensitivity is really bad, and my memory is really bad, the world outside my quiet, calm, ordered bedroom can seem like a frightening place to be.  But I’m trying to put in place strategies to help me function, as I assume things will only get worse as I age.  Which is depressing, but I refuse to look into my future with dread or fear.  Whatever the future holds is whatever the future holds – I’m not going to start worrying about it now.

I try to be as forgiving of my own brain symptoms as I am of my parents’.  I wouldn’t dream of castigating them over their poor memory, so try hard not to beat myself up over my own.  Instead of standing there feeling stupid over the things I do I’m going to make a concerted effort to admit to other people that I have difficulties – hopefully I’ll feel less like a nut job and they will learn compassion and understanding and that it’s not just old people who can be forgetful.

 

A novel experience part2

As I mentioned in this post, I’ve wanted to write a book about my experience with ME for some years now.  It will probably be crap and unpublishable, but at least there will be a record of what severe ME was like in the latter part of the 20th Century.  I’m convinced in years to come, when we finally know the cause, the world will look back on our experience and be horrified at the way we were ignored and stigamatized.  I also hope they’ll think we were all incredibly strong and brave souls to live through what we did.

I keep plugging away, doing an odd line when my brain will let me and will share parts of each chapter with you as I go along.  Here is an excerpt from Chapter2:

“‘Hi Liz, come on in’ I pull open the front door, letting in a snow flurry of freezing air which leaves me shivering in my crumpled striped pyjamas. ‘Can you come up to the bedroom, I’m still struggling to sit upright without feeling like I’m going to keel over.’

     I pull a chair up next to the bed, then clamber back into the ruckled sheets panting like I’ve just scaled the north face of the Eiger not climbed one measly flight of stairs.

     ‘Are you still no better?’ she asks incredulously.

     ‘Nope. I feel like I’ve been trampled by a herd of wild elephants.’

     ‘Have you been to see your GP? What does she say?’

     ‘Apparently I have Post Viral Fatigue Syndrome, which is common after a bug and should just go away on its own.’ Neither Liz nor I have ever heard of Post Viral Fatigue Syndrome so both agree it can’t be that common.

     ‘Oh well, you won’t want to come out for lunch then?’ Liz asks, clearly disappointed, ‘I wanted to tell you about Tony.’ They’d finally split up at Christmas but neither were finding it easy to cut the ties and I’m fairly sure they’ll have break-up sex before they’re done.

     ‘I’d love to come out for lunch, I’m going stir crazy cooped up in here, but I just don’t think I’m up to it, sorry mate.’ I hate my body for robbing me of the chance of a cheese & pineapple toastie and a steaming mug of hot chocolate with cream and marshmallows. My stomach starts to rumble. ‘Why, what’s happened?’

     ‘Oh it’s nothing important, don’t worry about it.’ She picks up her quilted Channel bag and seems in an indecent hurry to leave. ‘I don’t want to tire you out. Get some rest and I’ll fill you in when you’re feeling better.’

     I take in her immaculately pressed 501s, manicured nails and beautifully applied make-up and am suddenly mortified. I haven’t had a shower since Tuesday and it’s now Saturday, I can’t remember cleaning my teeth this morning and I’m still sleeping in the bile splattered sheets that kept me company during my stomach bug because I haven’t had the energy to change them. I watch my friend’s nose subconsciously wrinkle with distaste and am guessing my bedroom has the sickly waiting-for-death smell of an Old People’s Home. I remind myself to open the window to let some fresh air in when she’s gone.

     As I head back downstairs, following the spicy aroma of Liz’s Eternity, I feel a pang of hurt she hasn’t offered to nip to the bakers round the corner to get a sandwich and a cake and bring them back so that we could have lunch here. The only people I’ve seen since Christmas have been my Mum, step-Dad, John and my Doctor and I’m desperate for fresh company. I’m also bored to distraction, the only excitement in my day being the chance Fred will fall in the Mersey when he jumps around the weather map on This Morning. I haven’t heard from anyone at work either which has been upsetting, especially as I’m always the one to do whip rounds and send cards when any of my colleagues are sick, and although I speak to Lisa most days on the phone she’s had cancer and it would feel somehow disrespectful to whine on about my insignificant little illness. The only one of my friends who genuinely seems to care I’m poorly is my sea-faring mate Nancy, who I met on the cruise liner last year, but she lives three hundred miles away in London so it’s not like she can just pop round with a fresh cream Eclair and a dollop of sympathy.

     The thought of cake, oozing with sugar and topped with sticky chocolate, makes me hungry for the first time in days so after I show Liz out I make the most of the fact I’m downstairs and shuffle along to the kitchen to fix myself some lunch. The bread bin gapes at me empty mouthed. In comparison the fridge is a veritable smorgasbord containing half a pint of UHT milk, a scraping of margarine, two rotten eggs and a jar of mouldy tartare sauce. The freezer is marginally better, offering up three oven chips lurking in ice in the bottom of a bag and a clumpy handful of mixed veg which last saw daylight in 1989. I’ve already lost eight pounds since Christmas and at just over seven stone it’s not like I need to lose any more. Sick nor not I need to do some grocery shopping.

     I haul myself back up the Eiger with marshmallow limbs, sit on the edge of the bed to get my breath back, then ratch about for some clean undies. I find one pair hiding in shame at the back of a drawer, elastic dangling from the legs and the beginnings of a hole in one butt cheek, which will have to do. I’ve been too exhausted to do laundry and realize if I don’t put a wash on soon I’ll be sock-less. And pyjama-less. And knicker-less. The thought of wearing the same gunky underwear two days running is monumentally un-appealing.

     I get even further out of breath pulling on jeans and a thick cotton polo-neck then slump at the dressing table to brush my hair. The face staring back at me through the mirror is pale and drained with a faint artist’s flick of purple shadowing the corner of each eye. I consider painting on a cheery glow with some blusher and a pink tinted lip gloss but it’s just too much effort. My hair, which hasn’t been washed in days, is un-salvageable so I wind it into a greasy ponytail, hide it under a jaunty grey cap and just pray I don’t meet anyone I know.

     I can spit from my house to the Co-op but crossing the public car park to get there becomes a journey of perilous and epic proportions. The noise is deafening with the beep beep beep of reversing vans piercing my brain with needles of stabbing pain and hulking cars surrounding me on all sides like menacing panthers stalking prey. My senses shut down and I stagger along in a dream world, detached and unreal, dragging my leaden body along in shoes with sponges for soles. My brain heaves a sigh of relief when I finally reach the safety of the supermarket and I grab a trolley, the grating of metal as it frees itself from its neighbours frazzling every nerve. Leaning against the handlebar to support my jelly legs I shuffle up the aisles trying to remember my shopping list. The kaleidoscope colours of loo rolls and fizzy pop dazzle my eyes and the gentle background music drifting down from the low ceiling pounds louder and louder until it’s throbbing on my eardrums like a pulse. I focus on the grey mosaic flooring but it ripples under my feet making me motion sick and green to the gills. I’m disorientated, my vision a blaze of exploding stars, and can’t wait to get home.

     I dump the shopping bags on the kitchen floor and crawl up the Eiger on all fours, collapsing fully clothed onto the bed where I curl into a ball waiting for the room to stop spinning, the acid taste of vomit rising in my throat and swallowed bitterly back down. Every muscle in my body throbs, pulsing and aching as if to some long forgotten primal beat. I can’t move. I’m fossilized like a curled ammonite without the energy to open my eyelids let alone take off my boots. Hours pass, the wintry sunlight seeping through my bedroom window fading to grey, then black.

     I feel the mattress dent and the gentle whisper of feline breath as Stripe begins to purr loudly in my ear. ‘Oi, you with the tin opener, it’s past my tea time. I expect my meal on the table tout suite and if I don’t get it I’ll report you to the RSPCA for cruelty to animals.’

     I smile, open my eyes, and am rewarded by a splodge of kitty drool landing on my cheek.

     Cheers for that.

     ‘You’re welcome. Don’t say I never give you anything.’

     I drag myself down the stairs after Stripe, fill his dish, and start putting away the shopping. The frozen food is alarmingly mushy but gets shoved in the freezer regardless, even if by doing so I’m potentially making it hazardous to human health. The way I feel now, fighting a dose of E-Coli would be a doddle in comparison.

     John played at home today so is coming round in an hour, picking up a Chinese on the way.  I can’t see him looking like this, I’ve got to have a shower and at least try to get dressed in something other than flannelette. The cascading water eases my aching body and clears my clouded brain, and thanks to The Body Shop and a dollop of Timotei shampoo I smell like I’ve spent the day in a flowery sunlit meadow. I reach for a towel, cocooning my body in its fluffy softness, take one step towards the bathroom door and smack into a wall of exhaustion so solid it might as well be made of breeze block. I stagger to the bedroom, my warm pink cheeks turning ashen as the blood drains from my head and lie shivering, wet hair spreading a pool of damp on the duvet, waiting for my energy to come back from wherever it is it keeps bogging off to.”

Brain fog

A cardinal symptom of M.E. is “brain fog”, but it’s also common in other diseases like EDS and MCAD.  Before my drug allergies kicked in I’ve been sedated (using valium/diazepam) for various medical procedures and that’s just how brain fog feels to me – like it’s 4am and someone has just woken me from a very, very deep sleep.  I’m groggy, dizzy, disorientated, confused, seeing coloured stars and can’t think clearly.  Only I have to live every waking moment like that.

On top of the sleepy fuzzy dizzy grogginess I also have problems with short-term memory, information processing and my problem solving skills have done a bunk.

Yesterday was a classic “brain fog” day for me.  I stood in the kitchen to make breakfast and it took me several minutes to remember why I was there and what I usually eat (toast, every morning for 2 years!).  I had to go into town and got chatting to a shop assistant who we discovered used to live in my village.  We were discussing our mutual acquaintances and she asked me what my cousin was called.  Could I remember?  That would be a big fat no.  On Tuesdays and Fridays I have some yeast-free bread put aside in a local deli.  So I went to collect it.  The assistant looked at me like I was nuts and said “er, did you ask for bread to be put aside today?”  Me: “why, what day is it?”  Assistant: “Wednesday”.  Me: “That would be a no then” 😉

My short-term memory problems probably cause me the most hassle.  My mobile alarm pings several times a day to tell me to do stuff: put the bins out, book my Tesco shopping, collect my bread (!), water the houseplants…… Without it nothing would get done.

Blogging is a huge challenge.  I’m effectively writing these posts with a brain injury, so when readers pick me up on little things like I haven’t included this or that, or I haven’t expressed myself particularly well, it really does rankle cos I’m doing my best.  I’m simply not clear headed enough to read the post back several times to make sure nothing I’ve said could be mis-construed and I dno’t have the energy to worry about whether my humour is translating well in 180 other countries, whether I’ve been tactful enough or whether I’ve included every single piece of relevant information (it’s a blog, not Wikipedia).  Thank God for spellchecker.  Since I went down with M.E. I have developed some kind of dyslexia.  I write letters back to front, can’t spell for toffee and often miss entire words out.  One of these days I’m going to publish a blog post without spell checking it and you’ll be able to see just how terrible my writing really is!

Pre-illness my brain was sharp as a tack and I miss it.  I miss being able to have indepth conversations about politics or the state of the economy.  I miss having a solution for any problem I was presented with.  I miss being able to spell.  I miss being able to express my thoughts well.  I miss my memory.  I miss seeing the world clearly.  I miss being awake.

Over the years I’ve adapted to many aspects of my illnesses and forget now what being healthy was like, but I’ve never adapted to my brain fog.  I can still remember what it’s like to have a clear head, even though it’s been 21 years since I had a clear head for any second of any day, and I still miss it.  I always will.

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.

 

Low Histamine Diet Part 1

When I realised I may have Mast Cell Disease (MCAD) I could have tried some over-the-counter anti-histamines, as this is the first line of defence for this disorder.  But the main reason I’d researched MCAD in the first place is because of the horrendous reactions I have to just about all medications, so the thought of trying a new drug, alone, without any kind of medical supervision scared me half to death.   15 years ago I would have  been brave enough, but 20 anaphylactic drug reactions later and I’m now the Cowardly Lion.

The other main treatment for MCAD is to follow a low histamine diet.  This I could do.  At least I thought I could, until I looked online for a diet to follow.  The information ‘out there’ was so conflicting it made my head spin.  In the end, the only ingredients they all agreed on were fresh meat, potatoes (no agreement on sweet potatoes I hasten to add), green veg (as long as it wasn’t spinach), apples, sugar and water. You might as well kill me now, particularly as I’ve been pesco-vegetarian for 25 years and aren’t really that keen on apple!

Eventually I settled on a low histamine diet I thought I’d be able to follow, although I do still cheat and am not really strict on avoiding every tiny addition of vinegar in a jar of sauce, or every single additive. I absolutely refuse to stop drinking tea.  And during my period I’m evil unless I can eat at least one bar of chocolate (though my concession is to choose white over milk, my reasoning for which probably makes no sense whatsoever!).

The first 3 weeks of the diet were horrendous.  I suddenly couldn’t eat any of my favourite foods (I drooled just thinking about a huge plate of Aubergiene Parmigiano), which wouldn’t have mattered so much if I’d suddenly felt wonderful.  But I felt like absolute crap.

I live with exhaustion every single day of my life due to having both ME and HEDS, but at the start of the low histamine diet it took on a whole new persona.  I felt sleepy every second of the day.  It wasn’t an unpleasant feeling – more like someone was regularly slipping me a very relaxing valium – but I got absolutely nothing done and all I cared about was lolling about on the sofa watching daytime tv.  Thinking about it logically I suppose it could have been anticipated.  Mast cells, when they behave badly, produce histamine which in itself is an excitable neurotransmitter.  Histamine in turn produces adrenalin, the hormone which activates the “fight or flight” response, or gives you added energy during exercise or times of stress.  It makes you feel extra alert and unable to relax, that’s its job.  If, as I suspect, my mast cells had been rampaging for many years I’d been living with extra histamine and adrenalin floating around my body, and giving me false energy, for a lonnnng time.  Then suddenly, as my histamine levels, and consequently adrenalin levels, reduced my body was finally allowed to be as exhausted as it really was, and trust me when I say my body is truly tired.

The upside of having less adrenalin was that I slept really well.  I’ve had disturbed sleep for 20 years, but at the start of the diet the depth of my sleep increased and I woke feeling more refreshed than I had in two decades.  Silver lining :-).

During those first 3 weeks none of my other symptoms subsided.  I didn’t expect to suddenly go from sick to well, as both ME and HEDS are complicated diseases the symptoms of which would be completely unaffected by any kind of diet as they aren’t diet related.  But I had expected some improvement in reflux, nausea, stomach cramps, migraines and ‘brain fog’.  No such luck.  In fact I had the worst run of migraines I’d experienced in 3 years and my reflux was ratched up a couple of notches too!  I have no explanation for this.

I was so fed up at the end of week 3 of struggling to find things I could eat and missing my usual favourite meals, and having seen no improvement whatsoever, I decided the diet wasn’t for me.  So that night, feeling ill and shattered, I cooked up a junk food storm of frozen Chicago Town pizza and a huge plate of frozen oven chips with lashings of tomato ketchup.  God it tasted good!  My body, on the other hand, wasn’t quite so impressed.  Within 20 minutes I was flushed bright red, my heart was going like the clappers, I had pins & needles over my entire body, waves of sensation I simply cannot describe, and a very strange feeling in my head.  Plus I felt sick, sick, sick and my stomach was in complete cramp.  I hadn’t had a reaction this bad in several months and it was obvious that going back to my usual eating habits was now simply out of the question.  It was very demoralising and I did want to cry at the unfairness of it all.

After another 2 weeks on the diet, however, I did start to see some improvement in various symptoms.  The overwhelming exhaustion diminished, and in its place came a small amount of energy.  Not the wired, frantic, running-on-empty energy I was used to, but a calm, relaxed, more ‘normal’ energy which felt wonderful.  I also noticed my head was clearer and I didn’t feel like I was permanently half asleep.  I’m not saying my brain fog has gone, just that parts of my brain do feel less clouded.

Nausea diminished, and I now only feel sick for about 30 minutes after I eat rather than for the entire day.  My bowel movements, on the other hand, are reduced to every 4-5 days due to the lack of fruit (particularly prune juice) and nuts (a great sources of fibre) I now consume.  You can’t win ’em all!

My mood has also improved.  I’m a bouncy, outgoing, sociable, humourous kind’ve girl who really doesn’t sweat the small stuff, but for decades this has hidden a chronic, low level depression that I just learned to live with.  I now know that histamine is a powerful neurotransmitter which alters mood and interacts with other mood altering neurotransmitters such as seratonin and norepinephrine.  I certainly seem to now have an inner bubble of happiness that hasn’t been there in a very long time and, whilst I’m not saying everything in my mood garden is now rosy, I definitely feel lighter of step.

On the downside, the pins & needles and general nerve tingling that I have constantly all over my body, particularly in my feet and hands, has actually gotten worse :-(.  I have no idea why this should be and can’t even come up with a tentative working hypothesis.  It’s like parts of my nervous system have calmed right down, while other parts have ratched right up to compensate.  I’m not impressed.

I’ve now been on the diet for nearly 7 weeks (I started on 3rd March) and can honestly say I’m glad I stuck with it (well, let’s face it my body gave me no choice!).  I’ve noticed, however, that while I feel more energetic during the day my sleep isn’t as good as it was during the first few exhausting weeks on the diet and has gone back to its usual disturbed self, which is rather disheartening.  Saying all that, I have introduced a couple of foods in the past few weeks (cashew nuts and bananas) and reacted so badly to the nuts I stopped them after 3 days.  The jury is still out on the bananas!  I re-introduce one food per week and, especially if I react to it, don’t start another new food until the following week to give my body chance to get over the reaction.  Nausea is still pretty good, I haven’t had a migraine in 3 weeks, and I still feel much more relaxed and energetic.  However, my nervous system is still berserk and for some reason my heartburn is worse than its been in months *sigh*.  This is where a trained dietician, with an interest in histamine allergy, would be worth their weight in gold!