So I was interviewed by the very awesome Conversations With Bianca about art, music, zines, and about being a 'creative' You can go check it out here: C O N V E R S A T I O N W I T H B I A N C A

An unfinished story I found on my harddrive

He kicked the last box forward into the bedsit which he convinced his parents was perfect. After two trips across the city, bounding old memories and past lives wrapped up tight in cardboard. Full of secrets and treasure that would mean nothing to anyone else. They were there, they had made it. All in tack, and all still secret.
The room was nothing. A Georgian house converted into 7 small pokey bedsits set with their own kitchenette and shower. The bed was set above the space between the ceiling and MDF roof of the shower. It felt hard to justify this sleeping space as he would soon find out as he would wake up one morning abruptly to the harsh sound of the Ikea alarm clock that seemed so kitch on the shop floor. And as ridiculous a home this would be come, for the next year it would be his and only his, and when he would eventually leave there would be another black bag of memories leaving with him.
Michael was 19 and now alone. A new ashtray and a lit cigarette in his mouth and his leaned over the counter top, balanced on one leg like a snooker player over the green taclon trying to open a window that had been painted shut.

An unfinished story I found on my harddrive

He kicked the last box forward into the bedsit which he convinced his parents was perfect. After two trips across the city, bounding old memories and past lives wrapped up tight in cardboard. Full of secrets and treasure that would mean nothing to anyone else. They were there, they had made it. All in tack, and all still secret.
The room was nothing. A Georgian house converted into 7 small pokey bedsits set with their own kitchenette and shower. The bed was set above the space between the ceiling and MDF roof of the shower. It felt hard to justify this sleeping space as he would soon find out as he would wake up one morning abruptly to the harsh sound of the Ikea alarm clock that seemed so kitch on the shop floor. And as ridiculous a home this would be come, for the next year it would be his and only his, and when he would eventually leave there would be another black bag of memories leaving with him.
Michael was 19 and now alone. A new ashtray and a lit cigarette in his mouth and his leaned over the counter top, balanced on one leg like a snooker player over the green taclon trying to open a window that had been painted shut.

Bechets Disease

I don't know if I have mentioned it on here before but in 2010 I was diagnosed with Bechets Disease. Its a 'lifelong chronic syndrome', that in all honesty is annoying and painful.
There was a double edge sword sense of relief twinned with "wtf is Bechets?!"
Wikipedia didn't help either using phrases like "This syndrome can be fatal, due to ruptured vascular aneurysms, or severe neurological complications" but life goes on.
Please note, from here on in, I will go into detail about my symptoms and its pretty gross in my opinion.

For me to describe Bechets Disease (or Bechets Syndrome as it is also known) in another person would be impossible as it affects people in many different ways. Instead I have found a couple of paragraphs that can explain it far better than I am able.
"Behçet's disease is an autoimmune disease that results from damage to blood vessels throughout the body, particularly veins. In an autoimmune disease, the immune system attacks and harms the bodies' own tissues. The exact cause of Behçet's disease is unknown. Most symptoms of the disease are caused by vasculitis (an inflammation of the blood vessels). Inflammation is a characteristic reaction of the body to injury or disease and is marked by four signs: swelling, redness, heat, and pain. Doctors think that an autoimmune reaction may cause the blood vessels to become inflamed, but they do not know what triggers this reaction. Under normal conditions, the immune system protects the body from diseases and infections by killing harmful "foreign" substances, such as germs, that enter the body. In an autoimmune reaction, the immune system mistakenly attacks and harms the body's own tissues. Behçet's disease is not contagious; it is not spread from one person to another. Behçet's disease affects each person differently. The four most common symptoms (as listed) are mouth" sores, genital sores, inflammation inside of the eye, and skin problems. Inflammation inside of the eye (uveitis, retinitis, and iritis) occurs in more that half of those with Behçet's disease and can cause blurred vision, pain, and redness. Other symptoms may include arthritis, blood clots, and inflammation in the central nervous system and digestive organs." - Taken from the American Bechets Disease Association website.

In this entry, I will only go into one of the symptoms. I will address other symptoms in another entry at another time.

The main reason I don't talk about having Bechets Disease, is, quiet frankly because of where in my body it effects.
While I class myself as an open minded, speak openly, I-am-lady-hear-me-roar type of person, talking about 'genital sores and ulcers' makes me want to curl up into an invisible ball.
Its a "world swallow me whole, they will think I'm disgusting if I explain" feeling.
But, yes, there we go, it happens, it is part of who I am, and no, it is not Herpes. That is a different disease. I have something else.
But essentially, that is one reason for me not to talk about it. I don't want people to think that the Ulcers I have are a STI. Besides I don't want to wig out friends my talking about my now mutilated and scarred 'lady-bits', that's just un-couth.
But hey, this is my blog so I can write about what ever I like I guess.

sometimes in between flare ups, its magic. I forget that my body is broken and hurts me and makes me cry and break down as I remember there is nothing I can do except wait for it to pass.

At present I am in the midst of a painful 2-3 week long flare up of mouth and genital ulcers.
I hate the mouth ulcer flare ups because they appear in crops of up to ten at a time. I begin to talk with a lisp or slur as I try and push my tongue and words around them, but a lot of the time it is easier not to talk, so I just stay silent.
It hurts to eat and even drink and mostly, I can't kiss Marc.
Thankful this flare up has only seen a few mouth ulcers (finger nail size) and 1 genital ulcer 20c / 10 p piece size).
Last week, after about 9 days of trying to push the pain to the back of my mind with a 'if I pretend its not happening it will go away' mentality, I visited the GP. As with most Doctors my explaining I have Bechets was received with a "yeessss, I know a little bit about it, but not really".
Which is fine, I am not bad mouthing the Doctor I saw because anybody with Bechets will probably be nodding in agreement thinking "haha, yes! thats so true", its just one of those things about having a 'rare' disease, it is what it is, rare.
Unfortunately, the ointments I was prescribed made the situation worse, my genital sores bigger and infected. Gross I know, but like I said this is my blog and I'm trying to be honest.
I am now taking antibiotics for that.
I also take a vitamin B tablet to try and keep the ulcers at bay;
I have to take regular pain kills, so 2 tablets, 3 times a day;
and 1 diclofenac tablet, 3 times a day.

Morning tablets. My first set of the day.

Yesterday was Australia day and a friend came over with her son. When everybody went for a swim I had to sit on the side lines. I didn't want to explain.

Amoxicillin has always made me feel nauseous whenever I have taken them and make me feel more disgusting than my body already is.
After our friends left I just wanted to bath, clean my horrible self poisoning body and just cleanse all the evils away.
I normally take salt baths but yesterday I used Lemon Grass and Tea Tree oil.
I just wanted it all to go away and all I could think about was having a normal body.
As soon as I stepped into the bath I knew something was wrong. I could feel the water burning my body but I just wanted to get rid of it all so I sat in the water with a burning sensation all over my body.
I sat there for ten minutes.
As I got out of the water I could see where the oil had reacted with my skin. Red patches had appeared all over my body and the burning sensation continued over my body.
I had to take cold showers in between ice packs over my back and legs.
I only thing I could do was just lay there crying in pain.
I just wanted to be normal, to not walk with a limp, I just want to be able to do things like a regular person and not have to think about those things we take for granted because I can't do them without hurting.
Is it too much to ask to want to be able to eat and chew my food, drink from a glass, play with my daughter, go for a swim, ride my bike, pee without winching or welling up... apparently so, so I should just deal with it.
And even if I could 'just deal with it' I know I would still feel the same as I do everytime I have a flare up or have to talk about it. I feel like dirty, unclean, grotesque mound of mutilated scars and infection because that is what I see in the mirror.

The first time I had a "non mouth ulcer" it was as big as a 50pence piece, lasted for weeks and I had to walk with a cane to take the pressure of pain due to the size that had made me unable to walk. It ate through my skin and left scarring around a now void where my skin used to be. Every time they appear they leave a scar behind.

This morning, I woke up sore and uncomfortable, ate a slice of toast and took my tablets with a glass of water. I feel sick.
I put off having to go to the toilet because I know it will hurt, but I can't hold it any longer and it hurts. I use a blow-dyer to dry everything off and keep the area clean. I can't use toilet tissue.
Tilly is in a playful mood but I stay sat in one position on the edge of the sofa and try to play with her. It doesn't work, so I bend as much as I can, and put all my weight onto my elbow as I move to the floor in a diagnoal-side on-push-up style maneuver to ease any discomfort and get nearer to her.
My dad calls on Skype and I try to give him an update without going into it too much. I don't know how much he knows about it, we don't really talk about it. I try to explain there is no tablet I can take to make it go away, especially the "non-mouth ulcers" there isn't a tablet I can take for that. I explain about the blood tests I had on Wednesday and the subject is changed. I hate talking about it.
Tilly has gone down for a nap and I have about an hour to rest and change my underwear to make sure I as clean as I can be. It is 10.10am.
I think I change my underwear about 3-4 times a day. Take 2 showers and maybe a bath with no soaps or bath products.
I just want to be clean so it will all heal and go away, but it doesn't.

Heartache

I've been a witness to heartache
I swear I felt her heart break
been crying threw the bedroom walls for days
I told her time is a healer
but even I don't believe that
because it has been nine years now
and there is still that look on her face
as she cries "no, its not that I won't let you go,
but don't leave me too, you know he walked out that door.
And you carry half of his heart
between those bars
and if you give yours away, well, I'm left with fuck all.
Do you know, I still iron his shirts in case he returns
and that half of your heart makes mine beat in return
so please stay with me child, just for a while, i feel so old.
He said the family home I can't enter
said it fills him like an old love letter
with dreaded knots he cannot untie
with all the whisky in the world
he said "darling she was a beautiful girl,
but sometimes there is just nothing left to say,
but oh, what is a heart but a tool
that keeps me alive to sit on this old bar stool
to drink away the hours of the day
sat like a widow at a lovers grave
we were the most beautiful wedding ring set with blood diamonds
she said my heart had poison in
so just leave me child, just go"

Bright Eyes Setlist. The Hifi, Brisbane 17.11.11

Last night Bright Eyes was epic. I think it was the greatest Bright Eyes show I've been to.
The Hi-Fi, 17th November 2011, Brisbane
SET LIST:
Four Winds
The Tree's Get Wheeled Away
Something Vague
Another Travellin' Song
Take It Easy (Love Nothing)
Jejune Stars
Landlock Blues
Lover I Don't Have To Love
Shell Games
Arc Of Time
Triple Spiral
Spring Cleaning
Cartoon Blues
Posion Oak
Falling Out Of Love At This Volume
I Believe In Symmetry
The Calendar Hung Itself
Ladder Song
-----------
ENCORE
-----------
Let's Not Shit Ourselves (To Love And To Be Loved)
Road To Joy
*Jazz funk band introductions*
One For You, One For Me
The Peoples Key intro
-----------

Yesterday I found out the price of freedom -

- but thats another story.

Last weekend I took part in a 5k around Finsbury Park to raise money for Cancer Research UK.
It turned out to be a lovely day weather wise, so thank you British summer time.

Finsbury Park has far more slopes, hills and bumps that I remember, but then again I wasn't pushing a pram around trying to get around a 5k circuit in less than 50 minutes. Every time I thought "blooming hell, this pram is a right 'mare to push"I looked around and saw a woman pushing another woman in a wheelchair and and another woman completing the course on crutches, all of a sudden the pram didn't seem to heavy.
Thank you everybody who sponsored anybody taking part, and special thanks to everybody who sponsored me.