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June 24th, 2011

01:35 pm - stupid brain
Yesterday I was supposed to go and see Mr Braindoc at James Cook hospital, to get my EEG results and find out what was causing my seizures.

Guess what happened six hours before we were due to set off for the hospital? Yep. First the inability to get words (still here to some degree) and then the twitching and jerking. Oh and then the sleep of doom, from which I cannot be roused for more than a minute. Which meant missing my appt. Lisa had to phone the hospital at 9 and cancel because she just couldn't get me properly awake.

I'm really pissed off and genuinely upset that I missed it. I need to know what my head is doing. Since my gabapentin was upped I've had hardly any absences or jerking, but I fucked up the dose on wednesday because I was puking (so much stress this week) and then tick tick BOOM.

Hopefully I can get the insurance to cover an appt with him at the private hospital, then ring his secretary at JCUH and explain.

WRT the stress - Orange are being bastards as usual. I wrote a big post the other day but got too upset to post it. Essentially the day she went back after ttwo brilliant weeks off, she was told she has two choices - work six days a week on rotating shifts that go through days and nights, or drop to twenty hours. Oh and she had 48 hours to decide. So yeah, bad stress for burtie's head. Not doing her any good either, she gets her ECG results today, hoping it's just HBP and needs beta blockers again.

So if you've seen me fucking up and running my mouth somewhere, at least you know why.

Burt out - 5 hours of sleep must be topped up.
Current Location: bed, lol
Current Mood: frustratedfrustrated


June 30th, 2010

09:33 pm - WTF USA?
 I'm lost for words, I'm in tears actually.

How is this possible?

How, after all the years of suffrage, sacrifice, deaths and fighting can the message still be "The only good woman is one who's barefoot, pregnant and chained to the kitchen sink."?  How the fuck does anyone get the idea that an 'unfeminine' girl, one who doesn't want armfuls of babies, or a husband, is someone who should never have been born?
Current Mood: angryangry

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June 8th, 2010

09:33 pm - Ponderous Burtie
It's not a week yet since Derrick Bird drove around Cumbria killing and maiming people.  I watched last night's edition of Panorama pretty much blankly, until the reporter asked victims and neighbours alike what they thought of Derrick.  And then I cried.  To hear "People will look back and say he was an evil monster... but he was a good man, I can't see him any other way.." from a woman who attended a dying victim, and "He was a good bloke, he just was and I'll remember that" from, a friend of his who he shot in the face at point-blank range, is deeply humbling.  The tears came from sadness, and from the belief that humanity contains far more good than we give it credit for.

 It seems that this was a man scared of losing money, fretting over existing debts, and driving himself (literally) mad with fear that a tax investigation would result in a jail sentence.  The terrible collision of an economy in crisis, existing financial issues, and paranoia about being put under the spotlight seems to have pushed him over the edge.  Who hasn't experienced it?  I know I have, but I've been lucky to have always had someone to talk me round, convince me that I'd always be better off alive in this world.  I'm sorry that he didn't.

 Enough of DB.  I've been reading, and reading, and reading.  All my beloved 'chewing gum for the eyes'  US tv is over for summer, and Big Brother is about to start here.  Wretched bloody thing.  So it's the job of Sheldon, my ebook reader to entertain me.  I've read The Book Thief by Markus Zusak which was just breathtaking.  All my life I've been told that the protagonists, ordinary Germans, were evil, and despicable but in reality?  They had no more say in going to war than anyone else.  They were killed, bombed out, evacuated, hungry   If references to Hitler were taken out, and the names anglicised, it could've been happening right here.  I woke Lisa up with my grief-stricken sobbing.  She was alarmed and sleepy, saw the purple book cover and said "Oh, book tears?" and rolled back over.

  I then wiped my brain with the literary equivalent of an episode of Law and Order, a Jodi Picoult book.  I know, I'm sorry.  I paid penance by reading a book called 'Symptoms of Unknown Origin', proper factual stuff.

I'm now on The Poisonwood Bible.  Bloody hell but that's one absorbing book.  I wondered if I was sympathising with the characters when I started to feel faint and sick, until I realised that I hadn't so much as swigged any Pepsi, never mind eaten, since yesterday.  Whoops!

  Oh and please cross fingers that I can actually get a doctor's appt. next week to ask to get my Mirena swapped over, and that they won't say "You're too early", even though they know I'm not using it as contraception.  I've got endometrial deposits in my appendix for fuck's sake, and I'm not prepared to wait till my five years is up.  I know it's only 7/8 months but that's a long time to shit blood in anyone's book.  Just let it not be Dr C, who confused endometriosis with emphysema last time, and offered me a new "puffy thing" (inhaler).

Current Mood: calmcalm

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June 2nd, 2010

06:58 pm - Shit.
 A man, Derrick Bird, has gone on a killing spree in Cumbria, killed 12 people and shot 25 others.

I feel ill, shocked and sad.  Not only because I've spent a lot of time in that area (frequent holiday destination as a kid) but because my community has a similar make-up - semi-rural, high unemployment, poverty and depression, and a lot of shotgun owners.   It has a twin history of economic deprivation, isolation and flat-out bad luck.   It's literally, and metaphorically close to home.  In my community 12 dead and 25 injured would mean no family was unaffected, it would cause chaos in terms of unprepared emergency services and support staff, as well as the gaps left behind.

My heart goes out to all affected in Cumbria (and further afield) today, I am truly sorry for your losses and the pain and devastation that's occurred.  I'm sad that one man felt so angry at the world, for whatever reason, that he took a rifle and a shotgun and killed and wounded people at random, and that he took his own life, so we'll probably never know why.  Apparently he was a 'nice, normal bloke', they always are, aren't they?

I try to find a tiny kernel of good, of hope, in even the worst situations, but this is so horrific and tragic that I wish it wasn't real.  It's a beautiful day outside, birds are singing and it's half-term so kids are playing outside everywhere, and to think that not so far away from here (would take us about an hour and a half to get there), this beautiful day has turned into something so wrong, is just surreal.  We were going to go to the same area in the next couple of weeks, when Lisa has some time off, it seems funny going from one set of green countryside to another, but the scenery up there is beautiful, and I have happy memories of the place.  I think we need to rethink that now, it wouldn't seem right.
Current Mood: shockedshocked

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May 25th, 2010

06:23 pm - Tweet tweet.
 I love birds.  Yes, there's the obvious joke there, but this time I really mean the feathered kind.  It's as if there's a 24 hour soap opera going on around the house.  I just can't really get depressed properly anymore,because if I look out of the landing window a robin (he's called Rufus) will hop about, menacing the terrified baby blackbird, and flying into woodpigeon territory for shits and giggles.  Or the starling gang will gather on the fence, making that awful, comedic noise that says "We're here, we have purple and green feathers, get used to it!". 

 There are baby sparrows on the bathroom roof, and baby starlings under the eaves in the spare room.  The sparrows look hilarious because they've got adult head-feathers, but juvenile body plumage, so they look like spuggies in fur coats.  The baby starlings are upsetting next-door's big tom cat, but whether that's the noise or the fact that he can't eat them, I'm not sure.

Doctor Who exhibition at the Centre for Life on Thursday, wahey!  Very exciting stuff.  Will be nice to go back to Newcastle for a day.  I've never been into the Centre for Life (except to use the loo) but the DW tickets give entry to the whole place, so it should be a great day, especially as it's slap-bang in the middle of our two favourite gay bars.  We're going to try to go for lunch in Twist, relive our legendary first date, although this time I won''t spill my tampons and lollies all over the floor.
Current Mood: chipperchipper

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March 23rd, 2010

07:16 pm - Weird
 Just checked my LJ Scrapbook and all but one of my pics are gone.  They weren't sorted into galleries, only one pic of Ellie was and that's there, but the others are missing.  Is there a way to access 'my pictures' instead of 'my galleries', or have they vanished into the ether?

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February 19th, 2010

12:35 am - JSYK
Toad's home! I've been asleep a lot over the last couple of days so haven't updated, but she was released into the wild yesterday!

She's happy to be home, and Dad is off work to make sure she behaves herself.

Ta-ra for now poppets.


February 9th, 2010

10:16 pm - Yay!
She's been moved from recovery back to the ward and is sleepy but fine. Hopefully this means no more cancer, no pain, no constant bleeding. I'm so relieved and happy but I've gone all floppy and exhausted! Feel like I could sleep for a week. Can't wait to see her on Thursday.

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January 26th, 2010

09:18 pm - IIH/PTC/BIH 101 - How do you feel?

On various message boards and communities I'm asked "Well what does IIH do to you?  How do you feel?".  It's one of the perils of having a relatively unheard of condition.  It's not a 'sexy' media cause, no-one on a TV show has it, so it's invisible to most of the world.

 So here's how it affects me, and many others:

 Most of us have had a hangover at one point.  You wake up and your head is pounding, you feel like even moving your toe will make you vomit your skeleton out, the room is spinning, your vision is blurred.  When you stand up you puke, the ground feels unsteady and you feel wobbly and dizzy.  Oh the pain that sears through your head as you open the curtains and light pours in, like someone's shoving a hot poker through your ocular cavities.  You need food but the thought of it makes you want to throw up again, you feel a bit confused and your memory is hazy, you hurt all over, even the noise you make pouring a drink is too much, your senses are overloaded, "What did I DO last night?  Never again!".

 Now imagine that you wake up feeling exactly like that one day, and that it doesn't go away.  Imagine that the feeling lasts all day.  You keep taking painkillers, and sleeping, but every time you wake up there's that sickening throb in your skull.  Every time you move your head your stomach lurches, the ground beneath you sways, the light burns your eyes, everything's distant and out of focus as if you're looking down a tube.

That's the initial basics of it in a nutshell.  There are other features like numbness and pain in my arms and legs, and weakness.  My neck is stiff and my range of motion is limited.  My back aches as if I've been run over by a bus sometimes.  Something you might take for granted like sitting up can be a trial by fire for me.  Ten minutes upright can put me out of action for 12 hours.  My numb old legs do work, and it's physically possible to walk but the pain is unbearable, and the dizziness overwhelming.  I can't thermoregulate so I'm either half-conscious from cold or near heatstroke, my perception of sensations (good and bad) are distorted so I don't often know if something's wrong with me until it's at an advanced stage, because I can't interpret the pain signals properly.  Noise, and light can be horrendously painful, earplugs and sunglasses are my best friends, and I have both in varying strengths/colours to suit that day/hour/minute's symptoms.

  Mentally speaking, many of us are tightly coiled springs of pain and frustration.  We may appear 'snappy' or over-emotional, but emotional-lability is one of the side-effects of the increased pressure.  We might cry over the tiniest thing, or be sent into a spiral of depression over something that seems trivial.  Chances are that our memory and attention span aren't too crash hot either, and we might seem spacey or unfocussed.  I have pulsatile tinnitus virtually 24/7, a constant pounding in my ears, that can be terribly distracting.  Sometimes I forget simple words, or how to write, all of this is common in IIH/PTC/BIH.  The tinnitus roars, and crashes in my ears almost 24/7, sleep can be difficult.  Obviously lack of sleep makes being a focussed, coherent individual even harder.  Keeping to any kind of schedule for eating, sleeping, taking meds is virtually impossible.  Often I will simply forget to eat/drink/mediate myself which makes my condition even worse.  I've often sat and sobbed because I feel so weak and ill, only for someone to ask "Have you eaten today?".  Energy in=energy out, and if you're forgetting to eat then you might as well be trying to run the 400 metres with your feet tied together.

 Energy levels are constantly variable.  Head and body pain, and tinnitus, can disrupt sleep, so fatigue is common, but on a 'good' day we'd all appear perfectly 'normal'.  This leads too many people to make the hurtful assumption that this is under our control, and that fatigue is an excuse to avoid things or people.  Even after ten years I forget that I need to pace myself.  On a good day I'm so happy to be up and about, I miss my painkillers, I overdo it (use the Wii or leave the house!) and earn myself three days fast asleep in bed.  Whoops!  Some of us (yeah me too) also have an intolerance to physical activity that can make anything from using the toilet to having sex an interesting experience.  It's a sudden WHOMP to the head with the flake-out hammer, that means if you don't get yourself to somewhere safe and soft quickly, you could be in trouble.  It's as if someone has set a sleep timer on your back that you can't reach.  This can happen anywhere, makes life er... fun. *ahem*

This is public but comments are off.  I'll probably make it a sticky post at some point, memory probs notwithstanding!

To find out more about IIH/BIH/PTC go here
If you have IIH and stumble upon this feel free to PM me, I love to 'meet' new Squishyheads.
If you're in the UK and would like links to UK-based resources including leaflets to give family and friends, or employers, PM me.
Current Mood: productiveproductive


January 7th, 2010

01:43 am - Whiteout
No internet, no landline, snowed in. Lisa's boss demanded she take a taxi to work at 30 quid each way, so we phoned 3 companies who all said "Our drivers aren't coming anywhere near your village, or going that far, unless someone's life depends on it". Thank heaven for that!

OK gprs not even working so logged in on old wap phone to say best of luck to kaowolfie and Mr kaowolfie. I know this is the big week! (Isn't it? Heheh many pills)

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