Jun. 30th, 2010 09:33 pm
paraxeni: (bstl SMASH!)
 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?
paraxeni: (turtle)
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).



Jun. 2nd, 2010 06:58 pm
paraxeni: (tree sky)
 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.
paraxeni: (tree sky)
 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.


Mar. 23rd, 2010 07:16 pm
paraxeni: (Default)
 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?


Feb. 19th, 2010 12:35 am
paraxeni: (Default)
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.


Feb. 9th, 2010 10:16 pm
paraxeni: (Default)
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.
paraxeni: (turtle)

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.


Jan. 7th, 2010 01:43 am
paraxeni: (Default)
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)
paraxeni: (dotty - not happy)
I've written and canned three posts today because of the uncontrollable grudgey rage, so I'm gonna get it out via clumsy analogies for now. 

  I am a disabled woman.  I haven't always been that way, but I am now.  Would you ever ask me to give up Wheelson, or ditch the assistive tech. I use, just because I once had the privilege of being able-bodied?
I was born gay, but didn't come out until 1999.  Therefore I benefitted from the privilege of appearing to be heterosexual, even though I wasn't.  Even now, unless I'm snogging Miss Buttons in front of you and singing 'Glad to be Gay'' then I 'pass'.  Am I less of a lesbian for any of that? Do you have the right to call me bisexual or heterosexual because I've kissed boys in my dim, distant past?

  You're thinking "Shit, is Burt on crack?  Has she overdone the fizzy pop and painkillers?  None of this makes sense"  You're right, it doesn't.   But today I've seen people, people I thought were rational and sensible, ungendering a trans woman, calling her 'It' and 'Him' because she expressed views they don't agree with. Why is this ok?  Because "OMG TRANS WOMEN HAVE MALE PRIVILEGE".  Really?  That'll be why they're raped, and killed, and denied healthcare then, 'cos of their powerful links to the patriarchy. That'll be why they're overwhelmingly poor, unemployed, homeless, marginalised,  decimated by HIV/AIDS, because they are DA MAAAAAN.  And as we all know, penis=power.  YEah, they'll let you call yourself a woman, but put a foot wrong and BOOM, you're an It-girl, and not the Paris Hylton type.  Ahem.  Sorry for the spillage, I'll clean up later.

Oh and [ profile] refusion ?  Snowflakes are tiny litle things, but that one I noticed yesterday may have actually saved my sanity and dragged me back to the real world.  Many smooches.


Nov. 26th, 2009 09:13 pm
paraxeni: (Default)
This has cheered me up massively. Best Christmas present ever, Y/Y?
paraxeni: (Default)
As bad as my life could ever get, it pleases me deeply to know that I'll never be so pathetic as to write a flounce-post to vaginapagina. That tickles me so much. That and the fact that she's a "proud stay at home mommy" who believes that Nazism is directly comparable to them gosh-darn ebil fem'nists telling her that she can't sling the words "BABY KILLIN' WHORE OF SATAN!" at anyone considering abortion.


So funny. I want to make a VP flounce community called chuff_huff sooo badly. My eyes hurt from the laughing.
paraxeni: (Default)
Many disabilities are invisible. Pain cannot be seen. I know that, you know that. But, it is not a personal slight upon you to say that there are people in this world who also realise that and use it to their advantage. If you weren't who you were I'd think it was a case of "The lady doth protest too much", but I know you are not like that. You're deluding yourself if you think everyone congregating under your banner is praying for the same results as you. There are a large number of them who hope and pray daily that no medical evidence is found, that the nebulousness of the condition remains, that there will never be any way to separate those suffering, from those who exploit that suffering to their own ends.

The enemy is within, not without. You are only hurting yourself if you cannot see that. You are destroying your cause if you refuse to understand that there are certain people, people who I have actually interacted with in real-life and once considered to be close friends, who take your words and those of your compatriots, and use them for personal gain. I know that hurts. I know you can't bear to think that the same thing that holds you hostage is a mask for the weak and idle to hide behind, but it is. Every time you rail against someone who speaks out against that, you are hurting any chance of advancement.

Some people lie. Some people are bad people. Slighting those people does not mean I am slighting you. The internet is full of vagaries and blank spaces, but one word would've been enough. Your silence speaks volumes. I understand that, nobody wants to think that they are being conned, that their experiences are being used as form-fodder , that their sympathy is being manipulated. But hey-ho, ignorance is bliss I suppose. I hope reality doesn't bite you too hard, they way it bit me when I realised that not all of our compatriots are what they seem. I hope that you are not cast under a veil of suspicion and doubt because someone who parades under your flag is found to be a liar and a cheat. I believe you, but not everyone will until your group of people rid themselves of the militancy, superiority complex, and belief that everyone is honest. There are far too many bad apples on your tree, but then, you already know that, you just won't acknowledge it.
paraxeni: (Default)
Waters of MAAAARGHs. I have not been so fucking scared during Who since the Bertie Bassett monster thing in about 1984. Happiness Patrol I think. Anyway, poor Fergie has little crescent nail marks up the length of her arm because I was literally hanging on to her.

Russell, I see what you're doing, and thanks. It's helping, but I'm still sad. We both are, she's the superfan but I'm just as attached by my memories, the nostalgia.

Roll on Christmas. The horrible anticipation may kill these two fat little lesbians.

Gadget gadget.


Oct. 15th, 2009 09:12 pm
paraxeni: (Default)

I was sure it was a joke or hoax. I hope this kid is ok and this is a publicity stunt by his whackjob parents. 

Looks like someone snapped a pic at 11:20am local time as it was taking off.  There is no separate box, the cylindrical 'stalk' under the disc is the compartment, which was cylindrical and made of plywood.  It got crushed somewhere along the route.  It cleared 15,000 feet.  Double shit.


Aaand I'm blubbing like a six year old. 
paraxeni: (Default)
 Picture it.  2009, 8am, you've been asleep for 2 hours.  Suddenly your mad, blue-haired girlfriend shakes you awake.  "Lisa, LISA!!  Take it, you have him, take him away I can't cope... mumble mumble... Bagpuss.  BAGPUSS IS A SLUTPIPE!".  She shoves the stuffed pink and white Bagpuss into your hands, pats him on the head, then you, and turns over muttering about 'cat slags'.

Welcome to Lisa's world.

Madness continues unabated )
paraxeni: (turtle)
This is probably an odd one, but does anyone know of a UK web retailer (except Pure, who only go up to an 18) that specifically sells modest clothing?  I've looked in all the online Islamic clothing shops I'm aware of but can't find what I'm looking for.  I'm in search of layering tops, sleevies*, that sort of thing. 

  I bought some lovely summer clothes and didn't get the chance to wear them, and I thought if I layer them over a shell type top I could get away with it in this colder weather.  I know I could just get a long-sleeved t-shirt from Tesco or Evans in a size smaller but a) the material is wrong and b) they're usually too short by the time they traverse over the boobscape!   They'll also come in handy if we go over to Turkey next year.  Unlike a certain person *cough*Catherine*cough* I won't be wearing a thong bikini.

TIA guys.

*got some sleeves from Al-Mumirat.
paraxeni: (Default)

 OK, Lisa laughs at me for this and says it is weird.  So I'm asking you guys, because you're all really sane and normal and if you do this thing, it can't be so bizarre.

 If you buy an item for yourself on the interboobs, do you 'visit' it while you're waiting for it?  By 'visiting' I mean going to it's webpage, lookng at pictures, reading it's spec sheet etc.

Weird, schmeird.  I think she's making this stuff up now!

ps - the new icon is the Chronic IH 'Brain Pain Buddy'.  He so cute.  Fellow squishbrainiacs, gank away.   The new IHRF vid is on my profile page too.  Rumours that it made me cry are false, got that?  Evil falsehoods designed to undermine me.  I also absolutely did not cry at the new Grey's Anatomy (shaame shame) episode.  So there.  It is just dusty and I have allergies.


Sep. 19th, 2009 09:20 pm
paraxeni: (bstl SMASH!)
Let's dfeclare it Open Season on a trans kid just because we don't like their mother!

Fucking evil harpies the lot of them. 

Very angry now, very angry indeed.
paraxeni: (Default)
Take THAT Madagascar!

 My cheeks are burning a little smidge at the sheer elation I feel about beating Pandemic II.  It's like crack cocaine, you wonder what the fuss is about, have a little dabble and BOOM!  Your life is gone!

My disease was called Tittybiscuits. 

Mankind is no more.
All dead from Tittybiscuits.  Meheheh.

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