Running to Stand Still (by sarah)

So for the past 4 months I have basically not used my walking stick, I have been walking and lifting small amounts of stuff and generally getting on with things. Today I managed to sit on a rug on the ground for the animal service at the Cranham Feast and even jumped up to take some photos of donkeys and sheep (as you do), but it began to hurt so I didn't stand up for the songs but sat with Mary on the rug (Jean and Al were holding banners and flags and what not).

When I say hurt - it was nothing but a minor ache, I then walked up to the cricket field in the procession and even carried the baby for bits of it but that was beginning to be painful so I was slow but not as slow as last year and I felt proud I was walking much much much better even than last year when I was just happy to have walked it. But everyone was slowly passing me and I felt embarrassed(and sad) that I had to let my toddler cry instead of carrying her. People did offer to carry her but she refused to go to anyone other than me.

I made it to the cricket field and sat - for not very long - then I started setting up the childrens sports and I was happy, happy and exhilerated that I was managing to sort of run the routes and show the kids how to skip and so on. And I thought wow! What an improvement and then I looked at the cricketers and I thought - you know I've worked so hard to be able to do this, to be get the mobility back and to try and keep some level of fitness whilst it and the aneamia were bad. So much effort fighting the chronic fatigue and pain which will always be there and being careful about foods and the like, so much physio and effort. It's like my own mini olympic training... to be not quiet as fit as a normal person.

So though I feel proud and happy about what I have achieved and the improvements, I feel sad that it takes just so much energy and effort and to a certain extent there is always going to be something I am battling even on brilliant days - this is becoming less of an issue as I get older actually as my peers are increasingly coming up against illnesses and the like and I at least I have had a decade to adjust were as for them it is new. I also find myself feeling angry. I think, 'you know all that effort and people look at me and think lazy fat cow' and I am angry about that, I am jealous as well - the darkest moment with that was during Jean's pregnancy when I had been let out of the hospital to go to the pictures with Al, he was pushing my wheel chair and everything hurt. I had followed all the health advice and done everything right and there outside a pub we went past was a woman as pregnant as me in tottering heels, fag in one hand and bottle of something in the other talking about going clubbing. I can't express the hate I felt in that moment.

I've probably said most of this before but it just sort of hit home to me tonight as we watched AVATAR for the first time and the guy having to pull his legs about reminded me of the fact that there had been phases of my life when I've had to do that and bizarly that it is sometimes easier when you are in a wheelchair or on crutches as people can see you need help. When you are getting better (or worse) people see an apparently healthy young person and tutt about them not giving up a train seat etc...

As I tell Jean - you can never truly know how another is feeling, you do not know how hard or easy things are for them, you should not judge them as you can not judge them, you can not know.

Today Al was also worried that I was doing the main lifting and shifting for the sports stuff we did with the kids, I got it all out of the shed and lumped it across from the car etc but I was capable and he was doing the procession holding the banner and I didn't want him pushed to far with the way his legs have been and the antibiotics etc...

He was pleased to see I didn't flag as much as he was expecting - the odd sit down here and there was enough and I only started limping towards the end and it was a hard long day for me.

It feels to me like I am Running to Stand Still and I haven't even really managed to stand still, I have slipped backwards - I write adventure stories with caves and mountains and things in, I remember climbing, I take Jean to the climbing wall and look at the pictures of people climbing - I see moo cow fluffy chalk bags and I get excited and then I feel hollow as I explain to Jean why I am not buying it.

I think I also push myself for events as I can push myself through them and then take time to recover and it makes the more painful times tolerable by having something to look forward too. I have had a decade or so to adapt to my situation.

I got a thing through from college - the rearranged meeting about disabilities and stuff (I missed the first one due to Al's legs) - part of me wants to go 'no I'm fine now honest I don't need help.' This would be a stupid thing to do but it makes me feel so pathetic.

I know though that this is standard for those with long term / chronic conditions and on going health issues - hey I even stole the title of this blog post from a friends audio play about ME /Chronic Fatigue. The money from it's sales is going into research into the condition which can only be good - it wouldn't solve the separated pelvis but it would be something 🙂

Mainly though I am happy today - I walked and ran and tried to show people how to hula though I was not able to do much other than head and hand hula and I took video of Al trying to do foot hula and the kids loved everything and it was a nice day and I was pretty much a normal person - no stick or crutches nor lifts needed.

More Purple in the Room! (by sarah)

In an effort to stop post going missing and to stop the chaos of the shoes (our shoe rack broke around Christmas time) I decided that the lovely metallic purple and white table could go just inside the door and a purple folding crate I bought on special offer during the move, would be the perfect solution - seems to be working so far.

Privacy (by alaric)

I have a looser attitude towards privacy than most people, but I have began to reconsider that lately.

Generally, I believed (and still do) that anything I do in public is pretty much exempt from privacy. I have no privacy objection to pervasive CCTV, because if I do anything in a public place, somebody could be watching me anyway. The fact that my enemies can now just consult massive archives of CCTV to find me rather than having to get somebody to follow me around isn't, in my view, a huge deal. Indeed, I quite like the idea of sousveillance, having my own recording of what happens around me. It might be inappropriate to be doing that in circumstances that the people around me consider "private", so I'd turn it off for their comfort when it seemed right to do so, but I would still assume that anything I do in the presence of other people is basically recorded to some extent - after all, it's in their memory, at least!

Likewise with monitoring my network traffic at my ISP; I have never had any illusion of privacy there. I encrypt traffic that matters, and accept that the existence and destination/origin of encrypted traffic might be used by my enemies for traffic analysis.

So, I didn't really have any objections to mass surveillance; I had far more objection to the facts that encryption is far from ubiquitous and that information security is not taught in schools. My feeling was that if I can't stop an enemy that doesn't abide by the law (eg, organised criminals) from performing traffic analysis on me, then I can't assume it's private; I can stop them reading my stuff or impersonating me by using public key cryptography, so as long as the law doesn't hinder that, I'm content.

As such, I always wished that Web browsers would just include some kind of unique user ID in the headers, ideally backing it up with a public-key signature of the entire HTTP request. Then we could dispense with session cookies, logins, and even things like OpenID; we'd just authenticate to our browser by supplying the keypair in some browser-dependent way, and then head out onto the secure-single-sign-on Web. There's no loss in privacy compared to the current status quo that people are happy to identify themselves to web sites with email addresses, but it'd be a whole lot simpler for users and for developers. And so that, basically, is the security model I developed for ARGON.

However, I am starting to change my mind.

I've always felt that the "hole" in my approach to privacy was that it depended on my own knowledge of security and my enlightened use of encryption; I wanted sufficient education to bring everyone to that level. Encryption tools are generally a bit clunky, but if more people wanted to use them, that would create demand for better tools (or, more pertinently, better integration into the tools they already use). I felt that if we could just get people to encrypt and sign their communications, and encrypt their storage, and use Tor for things where the cost is worth the protection against traffic analysis, everything would be fine.

However, what has made me start to change my mind is the move towards storing one's data on third-party servers. By which I mean, living your life through Facebook, or letting Google store your email and your documents. People are moving away from having a computer full of their stuff, and communicating semi-directly with their peer's computers, towards letting third parties hold all their stuff. Often third parties they don't pay money to and are in no contract with, so they have little or no leverage over.

It's easy to say that educating people in computer security would make them realise that's a bad idea, but I use many of these services despite not trusting them one bit; I do it because network effects force me to. I could run my own StatusNet server on my own hardware, but instead I use Twitter in order to make it easy for people to communicate with me. I use Facebook because it's the easiest way to keep up with my many peers that do, and sometimes because I am forced to; an organisation I am a member of uses a Facebook group for important announcements. Many people do not publish an email address, but instead require me to contact them through various third-party services.

In effect, we are being forced to hand our information to third parties, and to trust them with it. Variations on these services that store your information on hardware you control exist; variations on those services where you actually pay a service provider to store it on their hardware (in exchange for them looking after maintenance, amortizing up-front costs, and so on for you, and where they are more incentivised to keep your stuff secure so you trust them than to try and find ways to make money out of it) also exist.

But they are not popular, as the big "free" providers have the vast majority of the users, and the value of these services is in all your peers already being on them. Now that worries me.

I'd really like to see more push-back against this. If enough people used decentralised software like Diaspora or ran their own mail systems, then the network effects would benefit those, rather than centralised commercial outfits. Clearly, some large incentive needs to be found to push people over, and an unpleasant transition period where everyone needs to be on both. Eventually, organisations like Facebook, Twitter and Google would find themselves forced to interoperate with the decentralised protocol or lose their place in the market, and then would find themselves having to compete on points such as "privacy" when the same ease-of-use and functionality can be had elsewhere for little cost.

But, we need technical measures as well. Build sensible public-key infrastructure into the core of applications (including Web browsers). Ditch cookies, and replace them with explicit authentication: provide a system of public-key-signing HTTP requests as I suggest, but turn it off by default, and force web servers to request it with a status code, as is already done for HTTP authentication (not that that is used for web applications, alas). Let browsers seamlessly support multiple identities, and when a web site requests identification, let the user choose which identity to use; and then colour the border of the Web page according to the identity in use so they don't forget. And while providing identity management through that (controlled) mechanism, try as hard as possible to remove all other means of identification - don't send headers leaking lots of information about the user-agent and its capabilities and settings, and disallow Javascript from querying that sort of thing. Bundle Tor with browsers, so it can be turned on and off with the click of a button, as part of the "private browsing mode" found in many browsers.

I still don't think there's much point in trying to fix this with making information gathering and retention illegal (the recent PRISM scandals suggest that legitimate authorities will find ways to work around limitations on their information gathering, and organised criminals simply won't give a damn anyway); we need better technology that makes us anonymous by default and pseudonymous when we want to be. But there may be some value in legislation helping to break the stranglehold on the social software market held by big centralised organisations!

I'm updating the ARGON security model to work like this (not that that makes a difference to the Real World, mind...)

Soup (by sarah)

I've had a bit of a rough day with nappy leaks and kittens chucking up and a Jeany who is still not quiet eating right etc... so we decided to do an easy dinner and I was getting the tins of soup down from the cupboard when Mary ecstatically started asking for the soup and pointing - specifically the tomato soup.

She finished the first bowl and asked for more, then finished that - I took a vid of me giving her her third bowl! She had a fourth as well!

Vomo-matic and Splotchy (by sarah)

Alaric is officially a medical mystery with his splotchy legs as the three main contenders are all things you wouldn't expect him to still be walking around with/not have a sky high temperature. Also they don't quiet look like any of them but sort of like all of them. So it could be Lymes disease, cellulitis or meningitus (or blood poisoning). They took bloods and his GP has prescribed antibiotics. The blotches are already reducing but the skin over the affected areas is all shinny and a bit well sort of dead looking if I'm honest :/

But it does seem to be responding well to treatment.

The other two things it could be are spider and snake bites though that has not been suggested by the medical people he's seem but by a wider group of 'services' friends ie police, nurses and the like who have had to deal with such things. What ever it is the treatments seem to all be antibiotics.

Also because this didn't make our lives interesting enough....

Yesterday Jeany woke up and said she felt sick but then perked up and ate breakfast and this is often the case with her in the mornings anyway. She went on an outing with friends were she proceeded to spew up all over the cafe and her friends mum's foot - ewww!

It was very hot and heavy yesterday with the impending thunder storm and she seemed fine after cooling down with head bands and what not. So we had dinner and she went to bed and covered herself up in her dovet! And so at about midnight there was the splatty sounds followed by a pathetic 'Mummy!'

So I ended up cleaning sick out of hair, jet washing the road rug and making her stand outside in the cool air outside whilst daddy cleaned the carpet in the girls room and constructed a floor bed with only a sheet to put over her. We also added a cool foot bath and a wet flannel into the mix - not all at once as you don't want to shock the system cold.

However though she seems alot better it may not be heat exhaustion and so if she throws up again today I can't take her with me to my workshops at the weekend for health and safety reasons 🙁 ie don't spread the plague!

So fun and games here! Plus I am sort of running on no sleep now.