I'm keeping myself busy (out of trouble), because IT is today. This time last year, I'd put myself to bed, with a carrier-bag, in case I vomited again. My Anterior Communicating Artery had an aneurysm, the aneurysm ruptured, and I was trying to 'sleep off' a Subarachnoid Haemorrhage. I'm lucky I woke up at all.
This last year, I haven't felt very lucky, it has been pervasively draining not being 'me', I haven't giggled, or monkeyed about as much as I did 'before', and, if I drop another kilo in weight, I'm officially in the red-zone. None of my clothes fit, partly because of the fact that I haven't been as physically active, and partly because the deflected anxiety has REALLY messed with my gut. 'Deflected anxiety', I'm a weird creature, and have a history of having dealt with some pretty horrendous life-stuff, by just 'getting on with it', ploughing straight through whatever dung I'm knee-deep in, and then reflecting on it afterwards. I can't do a damned thing about the fact that I have two aneurysms still lurking in my brain, only one of which is operable. I'm trying to eat well, sleep enough, drink enough water, and keep myself emotionally stable, there's no point 'worrying' about the aneurysms, I do my toe-to-top assessment every morning, and I'm watchful for anything weirder-than-normal-for-me. Cue the irrational anxiety, on my way to the face-to-face PIP assessment this week, I suddenly worried that there might be a mouse in my bag. Brilliant.
So, I filled in the PIP forms, and evidently put in enough detail not to be declined outright. I had the face-to-face assessment, and I KNOW I'll be marked-down for having made my way there, on public transport, on my own, but I did explain the difficulties I'd had asking for directions, how I'd 'lost my words' on the third bus, and not being able to ask the driver to tell me where to get off... that resulted in me getting off the bus in a REALLY dodgy area of the city, and walking about a mile back, worrying that there might be a mouse in my bag, because I was ACTUALLY worried about being mugged, or missing the appointment. Deflection, brilliant. The poor PIP-assessor chap got the whole story, about all of my health stuff, the physical, and the emotional. He walked me to the bus-stop, to make sure I got there, bless him.
The other update, apart from having my surgery date, and my pre-op assessment, is that I've self-referred to Neuro-Psych. I knew I was going to be bad over Christmas, and I'd been asking ALL of my GPs for something to take the edge off from about the end of October. Unfortunately, I also found a breast-lump, and the doctors insisted that they couldn't medicate me until AFTER I'd had that checked, because, of course, I'm a silly little woman, and must be anxious about THAT, not because I have a history of PTSD, maladaptive coping, and a husband I can't stand, who had lost his job, and was going to be under my feet for who-knows-how-long... Two different types of SSRI, the first one gave me the catastrophic sh*ts, tipping my weight down to 8st 9lb- I'm 5ft 9in, that's not healthy. The second set made me vague, and woolly, and then I had a MASSIVE headache with blindness on my 'good' side... I stepped-down, and discontinued, because I can't deal with that.
Back to the point, girl, Neuro-Psych. I've had my first appointment, and have the date for my next. It was brilliant, I didn't fog, or lag, and everything he said made perfect sense, it was like a fantastic game of intellectual tennis, with him confirming a lot of the things I had thought about some of my behaviours and work-arounds. The VERY best bit was that I was wearing my Tim Minchin 'Only a ginger can call another ginger ginger' T-shirt, and he was ginger, and I'm trans-ginger, and NEITHER of us mentioned it.
I've had my pre-op, and not had any concerns raised that I'm not viable for surgery, although my nurse did tell me he had coffee cups that were heavier than me, and didn't go for the blood from the vessel I told him to use, so my entire arm bruised, like I said it would, and he said it wouldn't... I'm a nightmare. Surgery in roughly three weeks.
I'm still as irritable as hell, but, after the Neuro-Psych appointment, I've grasped that 'leaving the room' IS a behaviour, albeit less dangerous than the behaviour I leave the room to avoid. Making steps forward in terms of carefully saying the things I've been avoiding saying, "Will you empty the pockets of your work clothes, so they can go in the wash, the smell is following you around the house, and it's genuinely making me feel sick."- he's in a manual job, and he'd been wearing the same clothes for two months, saying "They don't need washing, they're only for work." then "Oh, I didn't realise, I don't have much sense of smell." OBVIOUSLY.
I'm mostly not-dangerous, because I work with VERY problematic children, and am used to coaching them into more acceptable behaviours, Monday had a stabbing, a sub-16 pregnancy disclosure, a seizure, and then a complex child protection issue in it. Tuesday had massive meetings, Wednesday the PIP-assessment. Superficially, I'm functional, so the HR-bloke doesn't really 'get' that I have brain damage, and spent part of Tuesday hiding in a store-room, because the tea-slurper was being noisy.
Happy brain-iversary to me.
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Gaia_rising
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Bless you hon, been wondering where you were. You got a date at last -that is fab! Mr P or Stuart the radio man? Mr P away having his knees done right now isn't he?
Glad neuropsych was so positive for you - for me it has always been the one way to reassure myself I am still sane!
I'm still under Mr Bacon, but it's the radio-man's name on my appointment letter... I LOVED neuropsych, the 'general' practitioners don't know squat about brain injury, and the fact that my damage is frontal lobe makes for some 'interesting' appointments, where I use every ounce of all I have NOT to scream "That is NOT what I'm saying!".
I haven't been posting on here because I've been in a crappy place emotionally, and it's not in my nature to bring people down.
I accept now that 'walking away' can't be a long-term strategy, it was my initial risk-management method, but I have spent a good couple of hours today essentially playing hide-and-seek with the husband, it's not productive. I'll get there, it's just a circuitous route. x
happy brainaversiry! you are amazing stay strong where you can and i will try to do my best with dergee number one so that one day i too can beacome a nuro physc! you lot help me to keep my goal in mind thankyou xxx
Sounds like you're doing everything right I completely understand and relate to everything you say. Sadly for me the apt with the neuropsychologist was a total waste of time. She sat and gazed at me earnestly (head tilted to the left) I'm the middle of a large room containing two centrally placed chairs). Write everything I said down but didn't seem to 'get' where I was coming from at all. At the Nd of a gruelling hour where I'd tried to explain myself and keep things under control - she said 'here's a leaflet from the depression and counselling service which might help' , promised to write to me and that was it. Two weeks later a written account of what we discussed arrived - I put it in the folder with everythg else. I didn't cal back for the second appointment as there didn't seem to be any point. After another month of trying to cope - called the depression service. They made an appointment and promptly cancelled it the day before because the lady said she'd 'forgotten she had a meeting' . A phone assessment was set up for the following week. That went fine & they said they'd call me back two weeks later. Two weeks later by phone we had the repeat assessment and at the end she said 'Wrll I'm pleased to tell you you're not depressed' arghhh! An appointment for CBT has been set up because all their counsellors are 'busy' . Two weeks later in desperation - called back to the neuropsychologist. 'Sorry - you'll have to get a referral from your doctor to see me - we're rather busy at the minute so it's an right week wait'. I said not to worry I'd carry on alone and that's where it's been left. Think I need to move to a part of the country where help isn't in such great demand. Can't write here what my real reaction was but such is life. Reading your post has given me hope - maybe I need to go back and try again but ask to see someone else? There's light at the end of the tunnel - probably a train coming
I can relate, I haven't been 'active' on here much because I've been in one of my unpicking-dark phases, I know them from 'before', they're just harder to deal with when your brain doesn't work 'right'. My work, with troubled kids, and their families, means I can recite what most of the professionals are going to say, before they say it, I just don't always remember to 'apply' it to myself, because I'll be having a panic attack, about "What if there's a mouse in my bag?", or something equally ridiculous.
Once I'd come through the GP's insistence that I wait-for-the-breast-scan, and banging my head against a brick wall of "Might you be depressed?" (I'm not, I know what that's like...) the process was fairly straightforward. "Look, I've done what you advised, and it's making me worse, what I need is a referral to Neuro-psychology, because it's the brain damage that I'm struggling with, not the 'being me', I've dealt with that for nearly 40 years, I know how THAT works."
'My' psychologist DID do a lot of note-taking, but he also interacted with me, and didn't dismiss the fact that I know how a lot of the mind-stuff works, or, in my case, almost-works. I feel a bit better about the whole situation knowing that I'm taking control of it, not being batted-back, and told to 'get a hobby' or something. I'm an awkward sod, but I've ALWAYS been isolated-insular, I have to get a grip of things and try to handle them myself, my way. I'll see where the PIP-assessment goes, knowing full well I'll probably be declined, and have to appeal, because this brain-thing impacts on every single aspect of my life, and the imminent surgery only cancels-out half of the cock-ups in my head, the smallest one is in a dodgy location, and they won't consider surgery on that unless it enlarges...
Onwards and upwards, lots of distractions and deflections, but I'm still in one piece, and there aren't any new scars to worry about covering up.
I hope you manage to find someone more suitable to help you work through this.
Lots of love to you, it's such a lot to cope with but you seem to be doing it remarkably well all things considered! Glad your meeting went well and hope the next one is just as helpful...every little helps as we all know here! Dark days and silly thoughts are always with us but we try as best we can to take them in our stride as it's all we can do...just know that lots of us feel the same and can't come on here when we are in that mode, so don't feel bad and just do what you have to do and know we are thinking of you. xx p.s. hope the hide and seek is working!
I posted this two days ago but it disappeared. You are amazing - hooray for good neuro psychs and that you got the PIP assessor to get you back to the bus safe and sound.
I wouldn't say 'amazing', it takes me at least ten minutes to put on my bra, and I usually invent several new swear-words in the process... What I am is a ruthlessly determined cow-bag, and I need to feel in control of things, because I can't control those two little passengers sitting in my brain. x
Love reading your stories. My wife has terrible anxiety problems so I completely understand where you are coming from with them. Happy anniversary. Have a fantastic evening. XX Nick
The anxiety's so FLIPPING irrational, though! I'm so used to dealing with massive crises, and just 'me' in general, that I don't tend to have 'normal' anxiety any more, it's like the phenomenon with catastrophically damaged children, where 'normal is not enough'. I don't worry about the aneurysms, they're just 'there', I do, however, worry about dropping stuff I haven't picked up, and have MASSIVE panic attacks about what-if-there's-a-MOUSE-in-my-bag, and then have to have a stern word with myself. Ironic that I'm the one who trains staff at work in how to coax children out of panic attacks, and there I am, rooted-to-the-spot about dropping something I have no intention of even picking up.
I'm odd, I was odd before the haemorrhage, but now I spend an increasing amount of time telling myself not to be stupid, or not to say b*llocks in front of my manager, again. Moving towards the surgery date is weird, and I'm doing that thing that everyone-else hates, where I tell them where things are, and how to do things, just in case the surgery doesn't go to plan. Not a deal I can do about the surgery, other than try to put on some weight, to account for the weight I will lose after it...
We keep going, one or two people at work have said that they don't know how I cope, but not-coping isn't an option for me, even when I know there ISN'T a pigeon in my coat pocket. x
My wife is the same Gaie. If she's got a raised mole she will obsess to the point of insanity that its cancer then when we have it checked and its fine it won't be long before theres a sore throat or an act that again turns in some sort od terminal illness. I truly feel so sorry for her because its all in her head but she can't see that all the time. Anyway onwards and upwards, have a fantastic Wednesday. Nick XX
Hehe, I'm the polar opposite of that, I'm SO used to ploughing-on-through hideous situations, and self-assessing, and cause-effect-ing EVERYTHING that happens, my anxiety is all displaced. I know I have two aneurysms lurking, I know one of them's inoperable, and, if it blows, it will obliterate my brain-stem, I knew the breast-lump was only more obvious because I'd lost so much weight. (Why does it always go from THERE first?)
My anxiety is almost always irrational, the cheese-tea, the what-if-there's-a-mouse-in-my-bag, the what-if-one-of-those-pigeons-flies-at-me. I don't panic about catastrophic first-aid call-outs, or massive child protection issues, because I know my brain has to be 'clear', I just get on with it, and do it well, it's the lull-times, the quiet times, when my brain's not fully engaged, that I start to worry that there's a scorpion in my bra (it was the label, and I knew it all along, but my head was INSISTING there was a scorpion.)
I'm weird, I always was, even 'before', it's easy to look back and laugh about the cheese-tea, or the scorpion-bra, but, at the time, I absolutely panicked, and froze. Maybe I need to start worrying about the stuff that 'normal' people worry about, like missing a TV programme, or not having the right trainers?
Wednesday was pants, there was loads of other people getting crossed wires, and making situations worse, because they can't stop themselves meddling in things that don't concern them, and a meeting that should have been straightforward was made infinitely more complicated than it needed to be by one participant trying to satisfy departmental guidance, rather than focus on the case... hey ho, tomorrow's a different day.
I've been staying off here, because I've been the seething, ginger, ball of rage again, I do that sometimes, and it's not productive to inflict it on other people....
March 23rd can be another one of my peculiar 'fixed' dates, that's when the second aneurysm was coiled. I went in on the Tuesday, for the 'fasting' (haha, YOU try eating when all-of-your-everything seems to be going wrong.) and the damned pregnancy test "I'm not pregnant, there is no way I could be pregnant." "Oh, you'd be surprised!" (Surprised? If a line showed on that stick, we'd need a priest, not a doctor...) On the morning of the Wednesday, I showered with the horrible Hibiscrub, that made my hair feel like straw, and put on the glamorous paper pants, and anti-thrombosis stockings- those things are evil to get on if both of your hands work, and mine don't... Down to the anaesthesia room, "This mask will make you feel sleepy, and then you won't feel the needles go in..." Cue this year's season of Bruise-Watch...
I woke up in what I initially took to be a space-ship, until my eyes focused a bit, and I could see the NHS name-badges... GCS testing "Do you know where you are?" "Post-op recovery, after coil embolisation of an aneurysm, this is the Hallamshire, and you'll move me to K ward when I'm ready, and you have a bed?" (Oh, no, one of THOSE patients!) "What day is it?" "Well, it ought to still be Wednesday, unless my brain was a lot bigger and more complicated than you originally thought?" (I'm horrible.)
There was a delay on 'my' bed in neuro-critical, so I was parked in 'recovery' for something like five hours, doing my obsessive toe-to-top checks, before being trundled up to the ward. I DID remember it this time, last time, I'd confabulated, made-up memories to fill the gaps. This time was completely different, and the fact that I'd had the SAH last year gave me a greater understanding of why patient B kept shouting that he needed to pick something up from town, and why patient L SCREAMED every time a nurse went near him, or every time he thought a nurse MIGHT go near him. Bless the over-stretched, under-funded NHS for dealing with that all day, every day.
I behaved myself, because the staff were clearly run ragged, I didn't get antagonistic when they had to do the GCS checks, because I knew why they were doing them- someone must have added 'explain things' to my notes after my last 'complaint', so every time a nurse approached with a pen-light, I had "I'm just going to shine a light in your eyes, is that OK?"
The other patients on the ward had a much greater clinical need to be there than I did, I did chat to some of the nurses, and I think I scared one of them with my linear-detached coping, she thought I was asleep at shift-changeover, when she described me to the day-shift as 'strange, controlling, and manipulative'- I am, in many ways, but I try not to be so to the detriment of others. The day-shift on Thursday kept their distance, and that suited me fine, the Matron/Ward Manager/Whatever agreed that there was no need for me to be on the critical ward, and said she'd speak to the Consultant Radiologist Chappie, to see if I could be discharged home. That caused a bit of a hoo-haa, because he'd written "Home Friday, if well." on my notes, and then gone on leave Thursday/Friday. Lateral thinking, we just needed a medic to deem me 'well' on the Thursday, to save me blocking-up a bed that someone else might need. My GCS had been a consistent 15 since I'd roused from the anaesthesia, I was eating and drinking, and, from 8am on the Thursday, when Matron removed all of my various attachments, I was even taking myself to the loo, instead of facing the indignity of having someone wait outside my curtains to take away my bedpan...
That's when the lack of staffing, and clear communication between departments became a bit of an issue. I was walked up to N ward, to await discharge, and I waited, and I waited, and I waited a bit more. I'd been placed in an end-ward with a little old lady who REALLY didn't want to be on her own just before lunch-time, and, much as I wanted to help and reassure her, I'm just not the there-there cup-of-tea type. I 'helped' in my procedural-linear way, by chasing her blood test results, and pharmacy order, I do procedure, not platitudes, when her visitors arrived, I legged it off for one of my scampers up and down the stairwells, and bought pop-and-crisps from the newsagent in the hospital foyer. (What? My blood pressure runs low-end-of-normal, and I'm significantly underweight, the salt and sugar just peaked me a bit.) I'd already overheard the staff saying that my discharge was 'green', bless the hyperaccuisis, but that they would 'try' to hold me until 6pm... No dice, the original conversation between the two ward matrons had been that I'd be released between 5 and 6pm, as long as I was stable. (Haha!)
One of the nurses tried to stall me with my pharmacy order. "Thank you for checking, but there isn't any medication I need, I've been advised to take 300mcg Aspirin a day for a month, and I can buy that in a shop." (Did I mention I'm horrible?) Fine, fine, I'll wait for the meds to be dispensed, but the original guidance was that I'd be discharged between 5 and 6pm, I don't want to be stuck in the rush-hour traffic...
What a goody-bag I was presented with... between spelling my name wrong on my initial admission, so they then couldn't 'find' me on the system, and then completely misconstruing the fact that I'd asked for a nicotine patch for the day of the surgery, in case the chemical-craving made me grotty-argumentative, AND the weird-obsession with the statement that I'd normally be taking anti-histamines, for my tree-pollen hayfever, but hadn't taken one, in case it interfered with the anaesthetic... Two boxes of aspirin, two boxes of paracetamol (I'd deliberately only had paracetamol and ibuprofen on the ward, I knew if I asked for codeine, or lovely, lovely morphine, they'd query my pain management, and want to keep me in longer...) a box of loratadine, which I've donated to the husband (Shush, you can buy it over the counter, I'm not 'dealing' as such.), AND two boxes of nicotine patches, at completely the wrong strength, which are now in the kitchen cupboard, because I'm not actually THAT nicotine-dependant that I can't just NOT smoke...
There you go, I was signed out at 16.50, because they didn't know what else to do to stall me, and there was no clinical reason to keep me. I scared the living crap out of the Father-in-law, by answering the house-phone, when he thought I was still in the hospital, and, apart from the 'brain-spangle', I'm doing OK. Probably shouldn't have cleaned and bleached the bathroom yesterday, but it was DIRTY, and I always clean the bathroom on a Saturday.
I had a bit of a 'do' yesterday evening, a sort of fainty-vertigo-blood-pressure thing, which confused the husband, when I sat myself on the kitchen floor, with my back to the washing machine, and waited for everything to stop spinning.
"Are you OK?"
"No, not really?"
"Can I get you anything? Do you want a hand up?"
"No, it'll pass, I don't want to get up yet, I've just PUT myself down."
"Oh."
The boy was brilliant- "Would this bit of Lego help, Mum?"
I've since had the if-I-faint-do-this and if-I-have-a-seizure-do-that chat with the boy- not nice, but at least if I give him a scaffold to work around in the event of a worst-case-scenario, he feels a bit more prepared.
That's the other development, it's just the boy and I now, I've done the biddies-in-Last-of-the-Summer-Wine thing, and 'thrown out' the husband, he's secured himself a flat in town, and he has a sofa and a spoon... don't, I've mothered him for 20 years, I can't do it any more. He took the keys for the flat last Tuesday, and he's lost them already, I'm the one with brain damage, dammit! Weird situation, he's coming and going, picking up bits of his stuff, we can't live together, he's noisy, and dirty, and smelly, he stays up until 3am, and I'm wide-awake at 5am, he's been sleeping on the sofa for the last month, in his filthy work-clothes, my Yankee Candle, and Shake N Vac bill is massive, because every time he leaves the house, I Shake N Vac his rancid blanket... (I'm horrible, remember?)
So, on Tuesday, I get to phone the Council Tax, and the Tax Credits places, to advise of my new status as one of those single ladies- I filed my Mandatory Reconsider on the PIP, I appreciate that I work around my limitations very well, but I'm stating my case very clearly that I can't always do so repeatedly, reliably, or within a reasonable time-frame... at this stage, this is my battle, that the system is flawed, and the less determined would have just given up by now, sometimes with catastrophic results- I'll play the game, and I'll play it hard, that won't show in my favour, because, given a fight, I'm nothing short of phenomenal, it's just that I keep finding teaspoons in the airing cupboard.
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or am I imagining it? No I'm sure he was egg shaped with blue trousers (and no he never fell down) 
More for the PIP files, not a rant but good information.
