Sitting on the sofa, cup of coffee at the ready, cat snoozing on the lap. All perfectly normal, nothing unusual there in any way. Although normality has taken on a whole new format; the complexities of familiarity, of the status quo have shifted somewhat.

It’s a foggy day, a thick pea-souper if the truth be told. The weather outside is fine however, it’s an odd juxtaposition.

Clarity of thought, clearness of head; was it ever so? You can no longer remember. It is now normal to wake in the morning with a head that feels like it's full of wet cotton wool. Fuggy, foggy, hazy, call it whatever weather related simile you can conjure up, it’s all the same really. Constantly tottering on the precipice twixt ‘banging headache,’ and ‘searing pain.’ The majority of the time teetering on the border, desperately clinging on to ‘mild pain and uncomfortable irritation.’

Once upon a time you had no need at all to be able to sense the presence of your own bonce to be certain that it’s still there. You’ve got that ‘luxury’ now. Pain, cloudiness of mind, they both serve as permanent reminders that the brain is still doing its utmost to carry on regardless. Headache, pressure, weariness of thought, it’s all there and they take their toll. Most of the day is spent battling the best efforts of the brain to ruin the day. Consequently, the minutes, the hours, the days are spent trying to live with the ever present effects of, well, everything.

The headache

The lethargy

The concentration, or lack of

The frustration

The confusion



Then, maybe it’s the coffee, maybe it’s the cocktail of medication, but thought eventually hits the peak of its lucidity. Painfully close to ‘half asleep,’ nudging vigorously at, ‘couldn’t give a flying duck,’ but it’s as close to clarity as you’ll ever get.

This IS your normality, the new you.

I’m not at my best, can you tell?

11 Replies

  • Not feeling s'good then ? No, I agree, it's not much fun when normality is so AB-normal and there's no panacea. But maybe your suffering is mightily exacerbated by the throat/cough issues and their associated horribleness.

    Keep the hot drinks & PKs coming Andy. I hope the fog starts lifting sooner rather than later. E. xx

  • big freiendly hugs hope tomrrow is better

  • keep strong Baron and one day at a time matey. God Bless. XX Nick

  • Oh Andy, bless you, I really hope things pick up soon. I know that what you describe is, as you say, now the 'norm', but some days we are better at coping/ dealing with /living with it than others aren't we?, I hope your 'say b*gger it and carry on' mojo makes a reappearance soon.

    Do you think I could trademark that revised slogan and make a mint? 😉

  • Thanks for managing to encapsulate the joys of "normality" ( even if feeling rubbish ) :-) .... I try hard not to try to remember what I was like pre - bi ........ just appreciate the bits that I can do ( my yoga teacher of years used to tell us not to be too judgemental about our bodies - be thankful for the parts that DO work ) - however brain is pretty vital to everything and feelings .

    Onwards !


  • I guess your on the downward part of our roller coaster ride ?

    Remember the positives of all those pictures of the various "Barons" posted over the summer? Those days will come back once the dark winter days are over.

    Without knowing you face to dace its difficult to know whether you need a "pull your self together" or indeed a manly hug :-)

    But hopefully something will turn onto an upward curve.

    All the best on your journey

  • Hi Andy,

    Sometimes, when it seems all our grinding ailments are conspiring against us, as in Peter Pan, we lose our 'happy thoughts' and down we come : (

    Hoping you can fly again soon,

    Angela x

  • That really has encapsulated (!) my current general headstate uncannily. Can no longer see beyond this state with my new domestic situation, and with head below water can't even spot any available life rings, and might not have the willing to grab on to one firmly anymore even if I did! Maybe a post-Christmas accumulation of chronic fatigue is partly to blame?

    Anyway, thanks for the post; it's very helpful to have you compose my thoughts tor me :-)

  • Well, I hope like myself, those thoughts are fleeting.

    Yes, I feel ill, but then I am genuinely ill right now with, well, illness of the 'normal' kind. Nothing brain or epilepsy related, I'm just sodding ill.

    But I will be fine, I have to be. I have a family and a sense of humour to support :)

    I'll get through, I always do, but I have to allow myself the occasional moment of reflection, of self-pity. I'm only human after all.

    I'll be fine, and so will you

  • I have also this week been having some right ranty days....

    Getting frustrated and irritated because lack of sleep and overwork!!

    My head pressure and my thick mucous snotty nose has not helped with weird and not so wonderful feelings in my head.

    Its like I'm wired and can't sleep, then when I do like you say you wake feeling worse....

    The weather over here is not helping as I'm writing this we have a wonderful storm going off outside hence why I've been off all day ,not helping also being on a training course making me feel like I'm about to snap or just drop with weird nerve sensations flying through me like a dose of salts!!!!

    I'm home now chilling and feeling slightly more human after a few hectic stress days at work ready to poke someone's eye's out yesterday and could have gladly walked out of work and say "duck em" but my old self told me you will regret doing that.

    So tomorrow on my day off hopefully I'll feel more human !!!


  • Hi Andy. Yes I could tell, not as positive as your Autum tales of your trip to ? See that's my shot short term memory :-))

    Given we are still us in some form or other, perhaps the jollities of Xmas combined with the bad weather have got you being so introspective at the moment.

    Tho having said I know I've had so many days when I've woken up, got up (no I still can't go upstairs to sleep) just like the nice woman who used to always type in capitals and I responded in same way to help her. Strangely I can remember a lot of what she wrote,including the not upstairs bit, but not her username.

    So as said, many days I've Got up, but then thought "I don't know who I am" I just didn't feel normal, I was me but I wasn't me! It would take me all morning to wash dress and eat, and God help me if someone phoned and asked if I wanted to do something or go shopping. I wasn't even capable of making a decision and no way could I go out without knowing at least a day in advance, I needed all that time to process the information, make a timescale Rota in my head so I could be ready. Then when they turned up earlier or later than said - I'd internally go ballistic, thinking you said eg 10am. So It's 10am, I'm ready, why aren't you here NOW! Or alternatively I hadn't put my lipstick or coat on at 9.50 and they they would be there sitting outside in their car, or worse still the taxi for a hospital appointment. I don't want things to be early or late - I need them to be when they said they would be.

    Fortunately I'm somewhat better than that now - on that side of things! However I find I'm getting much worse at remembering when I say I'll do something or phone somebody - I forget to do it! Why? I don't know, but I do feel I'm me now, although the old me wasn't like that, I remembered everything, wrote notes I didn't lose. Usually if I'd written it down I'd remember because of that - like going shopping.

    I don't get headaches, one thing that never affected me before, during or after BI, ( except the exact moment the aneurysm shot up back of my neck)fall or car accident.

    So despite great long term memory when jogged by reminiscences. terrible short term memory, I am feeling/thinking I'm me now. I totally understand and live with the physical effects, like dodgy walking, slow speech.

    All the rest above I put down to all the antidepressant medsthe new doc kept prescribing,. If you remember I moved 3 times after my BI. I also drove 600kms 3 times in 5 weeks, on my own up autoroutes here, same years as BI! I was fine then, and wasn't ever thinking I wasn't!

    It was only after all the meds, and I was diagnosed with cirrhosis, no provable cause medically, through blood tests, that my brain started playing up again I still had my mind, with thousands of words and questions going round and round. But the brain fog was back, the confusion, the anger, the personality changes, the introspection, so much as you say above! More bad days than good, plus different meds after my endoscopy. My BP was always Ok. I was still losing weight though. At long last we've got the Thyroid med at the higher but now correct dosage. However before that I thought I'm blood well going to find out why I had the aneurysm, why has blood count gone haywire!

    All that research into my health history as you know! I haven't been looking after my endocrine system, because all those meds toxified my liver. I've been taking a natural supplemental course for last al,ostm2 months, having stopped the meds myself over a year ago, thinking they'd just leave my bodŷ. They didn't, I had a lot of bad gut bacteria going round and round my body via my bloodstream, affecting my brain, of that I'm totally convinced.

    Bad diet, stress,,poison in my body all combined to mess my brain up, though my mind still let me have the thoughts and words. So many of all those bad neural effects have gone Andy. I do know who And what I am and are not now, God willing through my continued research, I'll continue to improve in that respect.

    I also know that on bad weather days I spend too much time indoors at this iPad, surrounded by wifi - have you ever checked out current findings on electromagnicity and wifi! It makes for some interesting reading. Especially as many of us have little bits of metal with our stents or coils in our brains! Or even elsewhere in our bodies through operations after accidents or for whatever reason.

    Finally there is so much on TV now about the cost of mental health issues to the NHS. Look at some of the other communities on here and see how many complain of mental health issues with their main conditions as well - through brain fog, confusion etc etc.

    All take or try a variety of OTC or prescribed meds. What are all those drugs doing to their bodies, while they also sit at their computers or have their iPhones permanently attached to their ears!

    There must be something in it, even people diagnosed with Alzheimer's, have probably been on a variety of meds, for prior conditions. then given more for the Alzheimer's. I really do think it's all worth looking into. Stop taking all the meds, unless totally lifesaving ones! I don't take my blood thinners any more, haven't for 18 months.,I was put on them "because" I'd had a haemorrhage before. I don't have it now, so why do I need to keep taking them. I don't and won't! My cirrhosis still has no diagnosed cause, the docs don't know, so why take a drug if they don't have a good reason to give it to me! The cirrhosis hasn't got worse!

    They should be prescribing minerals and vitamins, having the correct blood tests done that will tell them what our body lacks, not cures what they decide we've got, but don't know!

    Sorry it's so long - this is my rant for tonight about us knowing better than the doctors in most cases! Shame they don't read these communities and listen to patients own experiences!

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