Don't It Make My Brown Eyes Blue

10/31/2008 04:56:00 pm BenefitScroungingScum 13 Comments

There's a scene in Layer Cake where Gene explains meditation to Daniel Craig's character Mr X as being any repetitive activity which demands concentration from the front of the brain to free the rest of the mind, in his case stripping down a weapon blindfold. I've no idea whether that is an accurate description, either of assembling a weapon or true meditation but it's certainly how I feel about death walking.

Today, bundled up in so many layers I was impersonating the Michelin man I was thinking about the nature of truth and lies. For me, going without a correct diagnosis of Ehlers Danlos Syndrome for so long has been the cause of far more damage than the condition itself could ever cause. It's impossible to explain how it really feels to be told so often that everything you say about yourself is a lie you wonder if that's true yourself. It is like being in a trap because there simply isn't anything you can do to change people's perceptions of you, and of course just being in that position is enough to effect some quite strange behavioural issues.

The only way I have been able to explain to people a little of how it feels is this scenario.

Imagine someone asking you what colour your eyes are. It's a simple fact. You might have brown eyes, or blue or even green. Although people's perceptions differ, it's unlikely anyone will try and tell you that the primary colour you believe your eyes to be actually isn't.

So, you've told the person who asked you that you have brown eyes, when to your great surprise that person tells you you are wrong. Your don't have brown eyes. They go further and tell you you are lying. You've made it all up to get their attention. You don't have brown eyes at all.

So you go away and look in the mirror. You see brown eyes looking back at you. The seeds of self doubt have been sown though and you wonder if perhaps your eyes aren't brown at all. Perhaps the person is playing a trick on you, perhaps you're colour blind?

Then another person tells you your eyes are not brown. Tells you not to be so ridiculous when you disagree and say they are in fact brown. Insists you must have some hidden agenda in saying your eyes are brown when they quite clearly are not.

Imagine that scenario repeated endlessly for years on end. Not just about the colour of your eyes, but every single thing you say about yourself. Confusing doesn't begin to explain how you'll feel after the people around you tell you you are wrong about yourself for years and years on end.

I thought the only thing to do was to tell the truth. Always. No matter what trouble it caused, I vowed I would always tell the truth. The more people told me I was a liar, the more important it became to me to be truthful. I held on to the hope that one day things would change and then I would be able to hold my head high and say I'd always been honest. As I became more and more disabled balanced only by the ever increasing lack of belief my family, friends and medical professionals had in me, always telling the truth became the only constant I had to cling to.

Of course when I was finally diagnosed it came back to bite me. I had clung to 'truth' as some sort of lifeline but it was the last thing anyone who'd disbelieved me wanted to hear.

The legacy of all this is that, despite now being surrounded by people who think the very idea of doubting me is ridiculous, my first instinct is always to think people don't believe me. It probably always will be. I'm terrible at 'white' lies, although I try very hard to be tactful. I know full well my concept of 'truth' is unreasonable, and particularly it is unreasonable of me to expect anyone else to have such a skewed concept of being truthful.

The positive is that I regularly have people ask my opinion as apparently I'm the only person they know who'll give a truly honest answer. Which, for now, whilst I try and let go of my psychological safety blanket will have to do.


Bog Off! The toiletless edition

10/28/2008 01:23:00 pm BenefitScroungingScum 17 Comments

I'm too depressed by the shiny new welfare reformssame old shite that won't work the government keep announcing to spend any more time than I have previously done on the subject.

So instead I bring you....more toilet photos!

Yes indeed, BSS being the foremost site on the internet for photographs of the good (I live in hope!), the bad, and the ugly of the world of accessible and not so accessible loos! This time I bring you....the completely and utterly stupid.

Oh, and it's not a toilet. It is completely and utterly stupid though

Thank you to mysterious G for the photo-and if anyone else would like to contribute send photos to


Death Walk In Pictures

10/23/2008 04:13:00 pm BenefitScroungingScum 13 Comments

Boots at the ready....

How could I not be happy when I have all this within 200 meters of my home? The hidden gifts of having to move at snail speed.


Highs and Lows

10/22/2008 08:03:00 pm BenefitScroungingScum 15 Comments

Thank you to everyone who has asked if I'm ok. Like I said, there's been alot going on lately. I feel a bit like I'm living two lives, one where I'm really happy and one where things are more difficult.

I'm trying not to think about the housing situation. As the credit crunch bites rents are rapidly rising. It is almost impossible to find properties for rent under £400 a month even in areas I'd be nervousall out terrified to live in. £400 a month would already mean a rent shortfall.

Ironically earlier this year the council notified housing benefit recipients that they would receive less rent as apparently the properties had devalued. That was months before the banking problems. Perhaps they knew something, which would certainly be interesting considering the amount of money the same council had invested in Iceland.

I have a sneaking suspicion that one of the ways cash strapped local authorities may try and save money will be further reductions in housing benefit using the same 'devalued property' argument.

It's cold. Colder inside this house than it is outside much of the time. Unfortunately people with Ehlers Danlos Syndrome often have problems controlling their body temperature probably because of the secondary Raynaud's syndrome and/or the problems we tend to have with our autonomic nervous system. It doesn't really matter why, the end result is that it doesn't matter how many extra layers I pile on I can't keep myself warm unless the ambient temperature is high enough, and like everyone else at the moment the price of power means that is a scary prospect.

My mother was told she was in remission about two weeks ago which is great news. She hasn't exactly taken much notice of the warnings she's been given about how dangerous infection can be when your immune system isn't working properly though. I received a text on saturday asking me to go to the hospital as she had a massive infection and wasn't expected to make it through the night. She's now doing fine, but obviously it is a very stressful situation, even before the additional family complications.

On the positive side however there is the other, happy life so I'm going back to pretending all the difficult stuff isn't happening. With all that needs to be done I'm finding less time for blogging but I don't plan on going anywhere....


Blog Action Day 08-Poverty

10/16/2008 06:32:00 pm BenefitScroungingScum 9 Comments

Yesterday was Blog Action Day 08, and, in characteristic fashion I'm a day late. That's probably because the theme of Blog Action Day is poverty and that is a subject currently on my 'too hard to think about' list.

Poverty is a strange creature. How do you define something so relative? In some parts of the world it means an inability to meet the most basic needs for life. In others parts something rather more complex.

Raising awareness is laudable, but I'm just not convinced it makes any difference.

I'm not convinced because I have experienced the kind of poverty that means going hungry and there's something no charitable campaign will ever tell you.

People already know what poverty is. It's instinctive. Part of what makes us human. Think about it. Really think.

Think of the look in the eyes of every starving child the media has ever shown you. Think what it would really be like to be sleeping on the streets tonight. Think about having enough money to feed your children but not yourself. Think about being so cold you spend all your time huddled in bed, not even able to get up to wash yourself.

Think about how it feels when hope is dead.

You see, if you've been able to imagine how those things feel, how they really feel that is, then you'll have felt that sense of panic rising up within you, bubbling into the back of your throat, threatening to take hold and choke you. It's terrifying, so quite understandably no-one wants to feel that way. Best just push it back where it came from and be sure not to think about such horrors again.

Maybe even donate a bit of money to make sure it stays away.

So that's why I'm never sure that raising awareness about poverty is the right thing to do.

We all already know what poverty means.

We're just too afraid of how it feels to really want to.



10/14/2008 01:43:00 pm BenefitScroungingScum 13 Comments

So much has been going on it's hard to know where to start. Especially as I'm so scatty I forget at least half of what hear, do or say.

Roland had a car crash. It was a couple of weeks ago now, someone T-boned into the side of his car, creating lots of mess, at least one written off car and lots of blue flashing lights. He was taken to A&E on a spinal board by very sensible paramedics where he was very rapidly discharged by a (very) junior doctor without the proper reviews being made at the time by a senior doctor.

I wouldn't like to be in that doctor's shoes now as the hospital phoned Roland a few days later to say that actually they'd now reviewed his x-rays and where was he, they wanted to see him immediately. He was unfortunately on holiday with his girlfriend and none too pleased to hear the news he had a broken neck.

Roland had to go straight to A&E after his flight landed back in the UK and had a lovely day out being x-rayed, scanned, poked and prodded. At one point he had a broken ankle and fractured scaphoid to add to his borked neck, then he didn't, then he did again. The end result is that he's still in a great deal of pain, unable to do much and deeply mistrustful that any correct diagnosis has been made.

Roland's job as a policeman is pretty active so he won't be going back to work for some time, and is very annoyed to be losing his 'bonus' for not being off sick. He's also upset and frightened about the nature of his injuries and prospect for recovery which has led to some interesting conversations between he and I. He keeps telling me he just doesn't know how I manage to cope and keep a smile on my face. Roland has always been a very supportive friend to me, and I'm just hoping he doesn't have to find out what it's really like to have to cope with such high pain levels every day with no end in sight.

It was Ben's 30th birthday recently so at the weekend we all went to nearby city for a night out. I'd like to say I have more toilet photos from the occasion but unfortunately the first disabled loo was being used by underdressed overweight women to snort class A's gossip with their mates, and in the second place the disabled loo was locked. Not that I can see any connection with the two. Oh no.

Point to note for bar owners. I'm quite sure people taking drugs in your toilets is a serious issue, but locking the disabled loo is not exactly hitting at your target group. Haven't you ever seen how many drunken women can squeeze into one toilet cubicle? Yes, I know it depends on whether it's the obese scantily clad version or the rake thin wannabe WAG version, but still, locking the larger loo's won't deal with this problem with such effect as the odd well placed smear of vaseline.

Still, toilets aside it was a great night out and I'd particularly like to thank the bouncers who offered to let me park directly outside the bar we were in. I think it was watching Ben carry me all the way from the car which prompted that offer, but that's the kind of 'reasonable adjustment' the Disability Discrimination Act was supposed to be about, rather than strictly conforming but useless to anyone toilets. I'm not really into the bar scene, but that's one place I'll happily return to now.

In other news IsplitupwiththecaptainsolongagonowIvealreadystartedseeingsomeonenew. I just forgot to blog about it.

Yes, really.


Bog Off! Exhibit 5

10/10/2008 06:34:00 pm BenefitScroungingScum 8 Comments

So near...and yet still so far away. This loo initially looks great. It's clean, tidy and well kept. There is even a mirror at the right height for someone using a wheelchair, and very unusually hand rails on either side of the sink. The rails are, unusually, in a contrasting colour to the paint to make them easy to see.

Unfortunately it is such a small space I couldn't even take a proper photo whilst I was in there. It would be a struggle to get a child sized wheelchair in there, let alone for a full sized adult wheelchair user. It might just be possible for an adult to sit in their chair and look at the loo, but not to transfer. Or turn around.

All of which of course assumes any wheelchair user would be able to get through the narrow doorway.

The worst part is that this loo probably conforms perfectly to any l
egal requirements.



10/08/2008 02:13:00 pm BenefitScroungingScum 18 Comments

Woohoo! Who knew I was that special? Yes, I know I'm special in that twisted Minogue sister kind of way, but not so very extra special that I have been voted the top most annoying thing in Britain today!

What? It's not me that actually annoys you? Oh, and you have lots of friends who are gay, black, Jewish, one legged immigrants very nice people. A survey by some weirdy middle class rip off poshed up for little Polly's allergies milk company is clearly a true reflection of current opinion.

Ah well. It doesn't matter. It makes a nice change from being slagged off by all those disability denying scumbags politicians. As I annoy all of Britain so very much I'm off to celebrate my growing benefit scrounger global dominance. After all, they're reading out me in India!


Bog Off! Exhibit 4

10/07/2008 06:28:00 pm BenefitScroungingScum 6 Comments

It's all getting a bit familiar by now. No mirror? Mirror 5 foot up the wall? Storage rooms? Dirty?

Yes, you've guessed's time for another Bog Off!

These images were taken in a local cafe/bar which in my opinion is typical of the substandard of accessible toilets for disabled people across the north west of England. There are people on Bog Off! watch in places far from my tiny corner of the world, most notably in Tasmania-though I'm still waiting for the down under photos, hint, hint!

If anyone else would like to take part then all you need do is snap a few photos of the good, the bad and the downright terrifying examples of the various disabled loos you see on your travels and send them to me. And...if they're anything like this one, good luck just trying to get in the door!



10/05/2008 05:54:00 pm BenefitScroungingScum 17 Comments

Life is busy, busy, busy at the moment. Both the good and bad kind of busy jostling for time and attention.

It is some months yet before the house goes on the market, but there is much to be done. The obligatory forms demand answers, handwritten of course and in triplicate. At least. Answers I'm not sure I have. Simplicity is not a feature of being bendy. I don't know how far I can walk on the flat, or if I struggle to get into my home. Doesn't everyone? A life which seems normal to me for so long now I can remember no other. I baulk at saying I can't when for so long I have fought to believe that I can.

Possessions need to be sorted. To be sold, kept or given away. For once I am glad I own so little. How does one organise a move when to organise a meal is a daily challenge?

I shall be glad to leave a house so cold and difficult to heat. Already the kitchen and bathroom show their refrigeration capabilities. On a day sunny and warm outside, within these walls the purple Help the Aged thermometer tells me to watch for symptoms of cold. My muzzy head confirms the need for caution. Wearing another layer no protection for those of us the government choose to believe need no help keeping warm.

So for now I choose to ignore the mounting fear curled in a ball inside me laid by factors far beyond my control and concentrate upon the fragile spark of hope now glowing within.