Back once again.....

It's been a year and two months since I updated. I guess life gets in the way and we forget. So, while New Years resolutions are complete bunk, I may have decided that Sunday is my new update day. This, I will stress, has nothing to do with the fact it's Sunday morning and I've decided to start blogging again shut up, I can't hear you la la la la.

Plan of action is an update every Sunday. This gives me a week of wacky japes to get up to so I don't feel like I have nothing to say and am obligated to say it. There might be random check ins as things happen, and things might change if life gets interesting but with a demanding work life and another new girlfriend (yeah yeah, rubbish at relationships) I hint once weekly updates is a good start. What form these updates take will be determined by what happens.

In the mean time, I've started a Facebook page The Aspy Journey Reloaded, so that I can link Facebook resources and other links without needing my iPad/craptop. Please check it out too. 

I'll be doing something similar with Twitter as soon as I download the app/ create a page and oh god I'm going back to bed zzzzzzzz

For now, as Chris Hadfield would say, soft landings.

there are times.

I'm sure I've mentioned that I was doing a second degree, but if I hadn't, I'm doing a second degree.

Why am i doing a second degree? Because, unsupported I managed to get a 3 Honours degree, and a 3 isn't enough to do a masters, so I'm doing some degree modules to try and gain enough points to do a Masters.

Or you know, i could just realise I'm dumb and jack it all in.

The benefit to being disabled, for once, is that the university support is great. I can (and have) extend my time for submission, and I have availed of support in uni (I even have a named member of staff).

I'm sure many readers know that all these things are available, but having had no academic support for my first degree, its still novel.

I suppose that, while disabilities are not an excuse, they can be included and alleviated to gain support. With the right adjustments and support, life gets a little easier.

So I had a bit of a surprise when i renewed my energy supplier (a yearly ritual that I feel I have to do to try and get the best deals etc, because i might be missing out. I might also be owed PPI or have been in a serious accident, who knows). My energy supplier asked if I was disabled. There's no point in saying no, so explained all the intricacies of my life, having to spell some of the more obscure disabilities (like cerebral palsy and aspergers) and just sum the rest up as "learning difficulties".

I thought, like everything else i've ever filled in, was just for statistics or something. However, I'm now entitled to priority energy supply should there be a power cut. This is to power my hospital bed, my electric wheelchair, tube feed pump device and iron lung, none of which I currently own (hospital beds are uncomfortable, and at present I am able to walk mostly unaided). It was  a nice and generous thought, and I am glad that my provider has the thoughtfulness to priorities those who rely on electricity to live, and it strikes me that possibly it's a law. Ofgem, the regulator of energy providers has a document about the care of vulnerable customers.

Always good to know, even if I don't need anything of the sort.

quick shout out.

So while I struggle to write a coherent and sensible (and sourced post) about the benefits and flexibility of society to adapt to disability, I thought I'd do a quick product placement, um I mean comment on something I found helpful when I first got my orthtoics.

Way back in February (which in terms of how little I update this blog, is about ten lifetimes) I posted about the Rub, basically the pressure damage that my not yet broken in orthtoics where doing to my delicate girl feet. In it i discussed silicon stripes that I had found that acted as a pressure relieving layer to prevent rubbing and damage. The downside was, of course, that they had fallen off and slide under my foot and become painful to walk on (as things do when you walk on them).

I met the rep from the company today and even showcased my blog, so smiles all round.

Anyway shameless plug to fill the gap while I wrestle with a topic of both interest and I suspect division.

Night all.

(Please note that I am not being sponsored to post this, it was just a helpful tip at the time and I had reason to show a rep today).

Poor sleep

I haven't had sleep deprivation for a while, so I might as well enjoy some now.

I slept for no less than 13 hours yesterday so I guess it's pay back tonight. That said, I also may have made a minor cock up in work and it's keeping me awake, but lets not get into semantics.

It is odd things that worry me. A late file won't bother me if I've got a reasonable excuse, but a forgotten attachment will keep me pacing (and having a meltdown) for hours if I don't feel like I'm on solid ground.

I'm sure everyone suffers from this, but I occasionally feel trapped, unable to settle until i have an answer one way or the other. I have no off button, no system to simply decide i can wait and sleep. I have been told to create a 'bin bag' in my mind that I just trash can my day into and leave it behind.

Sleep loss doesn't help either. It means I'm awake for hours and hours, dozing in work, losing my ability to control my meltdowns, or even having meltdowns altogether.

It'll negatively effect me, and I'll blog later (or tomorrow) to tell you how it went.....

spelling errors and updates

So, it's been three months again. I swear I get time off, I just don't have anything to blog about. That said, I met an old friend on Sunday and she told me I should blog about my life.

Prepare to be bored.

First off, I've decided to go back to using my laptop to blog. Using mobile devices seems to get me auto corrected to hell, thanks greatly to my inability to proofread.

I suppose a general update is in order for my first post in a while.

1) Orthotics are working well, due to delightful redness and rubbing I had them widened recently. this has reduced the pressure on my feet but now lefty has a habit of trapping air on the way up stairs and making......noises.

2) I finished physio, and have now got to continue it through my own devices. I've joined a gym. If you've read my blog, you'll guess that it too has fallen by the way side.  I need to go back, it was making a difference, although I still have a beer gut and one moob.

3) I'm watching TV shows, marathons are the best. They make great background for blogging?

4) I'm working like nobodies business. Some body promoted me.

I'll start trying to update more often, drawing development from posts in the past that needed more review. Also, being able to schedule post should let me blog in one day and have a weeks worth of posts.

Good to be back (until I forget again)

side note: My blogging platforms spell check doesn't recognise the word "blog"

Blogging ain't easy

So' it's been a little while, and I think that will be the rhythm of this blog. Things won't shift and I'll have nothing interesting happen for a while, and then something will happen, or a thought will enter my gormless head and I'll blog.

We all ok with that? Good.

Any, this came from TED talks and it's too good not to share.

Enjoy.

http://youtu.be/_MBiP3G2Pzc

New Cracked.com article

So, I've been reading Cracked articles since about five minutes after I discovered the internet. My friend Charlie sent me a link I'm sure he intended to freak me out with and I simply got engrossed. I love list articles (which I'm sure I've mentioned before, like Listverse).

Their newest list article is about living with Autism. I find it really relatable, except for the sarcasm bit because I use sarcasm regularly to prevent me actually saying nasty things in a nasty fashion. A friend I used to work with said her son hated sarcasm because he really didn't understand it, and I can see why. I often find real praise hard to understand because I can never tell if someone is being genuine or not. 

I suppose I do fall into the charming but not tactful type Hollywood loves, and looking at some of the stats posted about non verbal and low IQ people with autism it is obvious why Hollywood skips the reality and goes for the sugar coated 1%, the ones who seem adorable or sweet in their obsessions and hobbies and can control their screaming melt downs. No one wants to have a comedy or drama ruined by a faeces eating screaming human that many would associate with a horror flick. I guess its hard to portray a rounded character who, without good insight, many " regular people" would find distasteful. Many people with Autism disorder are more difficult to engage with and to build meaningful relationships. They take a more nuanced approach, more unorthodox approach and can have little positive results in return. Often their hobbies and interests aren't the inner workings of speakers, or something that others would consider at least a contribution to humanity, like astrophysics, but more like sheep or colours. 

Even those of us who are higher on the spectrum can have impenetrable hobbies, interests and social lives. With the creation of the internet, nerdom has become cool, mainstream and accepted, at least in the portrayal of Anime, Games conventions and even LARP. On the surface, people now readily accept that Dungeons and Dragons is a game to be enjoyed by all, but when complex math gets involved and we're rolling twenty sided dice and making jokes about 'TEH' (a common internet misspelling of the) it quickly alienates people. If you start waxing lyrical about your level 20 Mage with +69 staff of penetration at a dinner table, you're more likely to get condescending comments. No one needs to know the entire back story to Mrs Marvel, thank you......

The article touches nicely on emotion. I suppose I don't feel much emotion, possibly because I do bottle up what I feel or because, as my partner is currently stipulating, I'm a sociopath (more on that in another post). I do however, get angry. Screaming melt down angry. If the late, rediculously great Sir Terry Pratchett taught me anything (and who didn't learn that Luguage with legs is hilariously funny), it is that anger can be turned into greatness fuel. Stoke your fire with anger and anything is achievable, be it Sir Terry's anger at being told by teachers he'd never write well enough to get published or my own anger engine when I'm told I will never amount to anything. A screaming anger fit can be turned nicely into an hour of rapid productivity. I know that is only me, but still.

As for an autism charity, I've never fulled engaged with the UK one. I guess I don't need their support that much and they have their hands and rescources full trying to help and support those who do need it, so I can't comment on whether or not they view it as a disease to be cured. I know from my own interactions with healthcare there is certainly a focus on helping aspies control more outlandish parts of themselves, as least in public, so that we can fit in. While it might sound a bit eom goth, I think fitting in may not always be what's needed, but it certainly helps streamline the everyday activities of living.

The one thing on the list I haven't touched on is work, because this entire blog seems to stray back to that topic regularly and we don't need to hear more about it now.....

Be safe.     

New shoes.

So I promised a future of shoe shopping. I'm not a fan of shopping in general. In, buy, done, home. Or if I'm feeling really lazy, online, receive parcel, realise it's wrong, lose it, find it, send it back, receive refund, go to store.

The recent change in my foot size, due to the orthotics, has meant that I've needed both new work and casual shoes. Previously, shoes have lasted about a month, as I toe strike rather than heel strike, taking the toe out and letting everything in. This has meant that cheap, non brand running shoes where my best buy, meaning that my outgoing on shoes was balanced with how often I had to replace shoes.

So on Thursday I went decent shoe shopping. My manager recommended Dr Martens for work. I duly went to my local outlet and got some of the best customer service. The sales assistant was patient, understanding, sympathetic and sensitive. She got me four or five pairs of shoes and boots. Due to my Poland syndrome (and I'm using my common sense and experience here because it hasn't been said by a health care professional) my right foot is slightly smaller than my left (my Polands manifests on my right), thus adding to my shoe difficultly. The sales assistant picked the perfect shoes, and they fit excellently. They came today and I'm going to start wearing them tomorrow, with my orthotics.

For years I've had my eye on a pair of crimson runners. I found them in a local shoe shop and they too fit perfectly. I've avoided buying these shoes because of the expense and the longevity I would have with them. I decided to treat myself, hoping my new corrected walk would tackle my toe strike (it is) and therefore I might get more out of them.

I have a thing for boots (who's giggling?). I have a favourite pair of oxblood boots, pictured below, and I'm going to hope they fit with orthotics. I've had them repaired with expensive carbon rubber toes to try and get more out of them. Here's hoping the orthotics do that job. In my misguided youth I wore shin high boots (rocky type ones), and I did wonder out loud during my shopping spree (it counts as a spree, I bought a suit too) if my boots had helped either hide or support my tone less muscles.

Meanwhile, boot shopping may be off the menu.

Mini freak outs

So, I may have previously said I don't suffer meltdowns as they are typically pictured that aspies have, generally over what might be seen as minor or insignificant things. Turns out, I might have been lying about that without realising it, which makes it a lie of omission and as we all know the sin of omission isn't the worst (*nods vigorously*).

I had what I consider in hindsight to be a well controlled melt down in work. In the most basic sense I lost my temper when another department decided to do something out of order (as in list order) and didn't warn me. I had dutifully walked down to the other department to finalise some business and found that the paperwork in question was now on my desk, delaying me and knocking my tight schedule. I may have at this point felt the fire I usually get in my arms and legs when I feel my choler rising, kept back up the stairs two at a time, and enjoyed a half hours tunnel visit and gritted teethed grumbling. 

I can cope with changes to orders, I generally anticipate change and try to take the long view but some times, occasionally, I won't be given a quick heads up when there's a change (how hard is it to give two minutes notice?) and it messes with my hour plan. In that I need to adapt and change, something I consider myself fairly decent at, but for five minutes it is best to let me reorder my head and not try to interrupt my new game plan.

This realisation explains a number of things. It explains why yesterday I had an attack of creeping paranoia, why I felt drained after work, and why I ended up coming home and sleeping the afternoon away (the fact that I've had a sleepless night has nothing to do with that, I'm sure). I also clearly didn't reorder my head properly as work called me back to complete a task I had left. Walked back to work and sorted that (fortunately I hadn't taken my legs off, so it wasn't hassle). 

I think that every day is a lesson, whether you realise it or not. Lesson from today is one I should learn repeatedly, and that is to double check my work before going off shift. I isn't always easy, one of the girls hugged me before she left and said I looked grumpy, which is fair as I was annoyed at myself for snapping at a member of the afternoon team. I did apologise and the girls are understanding. Double checking can be a pain but it means that if my head is not fully ordered, I am at least ensuring that nothing is missed, even if it takes a little longer to get away.

My final realisation is something I really hadn't thought about. I ran up stairs in my new legs. I took two steps at a time even, without thinking, tripping or falling. Ok, so I was out of puff after two flights but still. At the moment I'm about as graceful as a baby deer on ice going down stairs, with handrails being the greatest invention ever and until to day I felt like a Dalek approaching stairs when ascending was required (yeah yeah, convenient plot device, they can fly now), with plenty of tripping and swearing (quietly).

I guess you lean something new every day.....

The creep

DI'm sure I've at least touched on paranoia and second guessing before (in a post titled "paranoia" as it so happens). I often think I'm bobbling along ok, minding my Ps and Qs, and then I'll make the mistake of asking a colleague how I'm getting along and be told that others worry about me and sometimes don't know how to take me.

I don't usually run paranoid, but on days like this I can't help but feel that maybe I should quit my current job and become a librarian. I know that sounds strange but do I have to explain to books about me? No, books understand me and just want to be read. It's national book month, can you tell?

I found this video that might explain things.

Strongest condemnation.

So apparently an atheist shot three young Muslims in America.

I'm lost for words.

This blog doesn't usually deal with religion beyond my own belief.

I've no doubt that the accused, mainly because he is innocent until proven guilty, is an atheist.

He just missed that atheism is not about violence, not even in mirror of religious fundamentalism. Atheism is the use of reason and knowledge to better ourselves, in the face of myth and legend.

I'm horrified. He's set back any progress made by atheists to be seen as equals and as members of society.

Atheism should be the voice of reason. It should point to reality and explain why myths, both religious and otherwise, are flawed. Why a global flood is not supported by the fossil record, why the universe is not geocentric and why the stars are not hung on a cloak thrown over the earth at night. Atheism should promote the advancement of humanity, by driving secular law and equality, and by pushing technology growth (until AI becomes self aware and wipes us out).

Atheism should also be about protecting others right to freedom of speech and religion. Everyone has the right to practice any religion as long as it does not affect anyone else. You can worship whomsoever you wish in any reasonable manner, and you should be protected and allowed to do it without hassle.

Freedom of speech is a core pillar of western society. It let's us say whatever we like and be protected. This idea has been tested recently with the Paris attacks and the Pope's comments following those attacks. Murder and terrorism is not freedom of speech, ever. Limiting freedom of speech because it hurts someone's precious religious beliefs is also rubbish. We all have the right to believe whatever we want, and have the pleasure of being mocked for it. Tell me you're going to burn a Richard Dawkins book and watch me find you matches.

To quote Christopher Hichtens, that that can be asserted without evidence can be dismissed without evidence.

Some people I've seen commenting on this are asking why this is not being labeled as a terrorist attack rather than a lone nut as it would be with a Muslim attack. It's a lone nut, just like every Muslim "terror" attack. Anyone who feels murder is a decent response is mentally unstable, the word nut is a byword for crazy.

I know good religious followers and bad ones. I know good atheists, and bad atheists. Humanity is flawed, and it is our humanity that unites us.

Murder is never right, or just or good. RIP to the victims.

Orthotics review.

So, with everyone jumping on the vaccines cause autism bandwagon again, I am trying to compose a thoughtful and fact checked post about it, you know, to jump all over that bandwagon until the cymbals fall off.

In the mean time, I managed to bag me a review of lefty (why can't it be more like righty, that's snug and not wearing a hole in my ankle?) this morning. The orthotasit (?) was really patient. She took a long look, and sent lefty off for melting into a more pleasing shape.

To stop my ankle joint eating my trousers, apparently socks should be worn outside my orthotics. I'm not cool enough for that, so I'll have to just keep an eye on my ankle biters.

Equally to prevent sweaty legs (it's very sexy) the long sock, recommended by Robb Brydon on Qi, to help soak up sweat.

A fellow patient told me they put a sock right up over the top of the orthotic to prevent chaffing.

The department took my strap pad measurements so when they wear out, they can post me more.

Looks like I'm in for some fun experimenting.

Better get researching.

The rub.

So, it's been just over a week since I got fitted for the orthotics. I've been warned to watch for redness that doesn't fade.

I've noticed blanching redness under my ankle bone on my left foot. Now, full disclosure, I've probably been wearing them a bit more than I should be. It looked like it was blistering today but it seems to have gone back to angry red.

I grabbed some silicone strips and tried to protect my foot but it didn't last and I ended up taking them off halfway through my (14 hour) shift. I thankfully haven't thrown away any old shoes yet, so I was able to plod along in my old shoes without damaging the new ones.

Pressure sores are very much what they sound like, also known as bed sores. They are generally associated with the elderly due to reduced mobility. However reduced mobility can happen to anyone, from spinal injuries to anyone who spends too long on a theatre table. In my case, it's sheer force and pressure from the orthotics. While there are many different tools to help alleviate pressure, like those mattresses or cushions, or the silicon I grabbed in work, the best way to deal with pressure damage is to remove the pressure. People get walked and stood or turned to take the pressure away and I think that'll have to be my tactic over the next few days.

I'm going to minimise my use of my legs over the next few days and ring the department on Monday and have a review.

Goodnight.

Interesting.

Vlad the impaler, sorry sorry, Mr Putin, Russian president, has been remotely diagnosed with Aspergers, writes the Telegraph. It's based on a Pentagon report from 2008 and is only based on videos. While it may be true, it's methods are limited and it's postulation that he has an extreme need for control as a part of his Aspy is speculation at best. The Telegraph is also not peer reviewed.

Let's have a quick Google search. Sky and MSNBC are running this story too. Sky reiterates the Telegraph, saying that his mother may have had a stroke during pregnancy, interupting fetal development. However, Sky quotes a Dr Stephen Porges, a psychiatry professor from the university of North Carolina as concluding that Mr Putin has a form of autism but caveats that with the fact that the report was never finished and he would shy away from an Aspy diagnosis.

MSNBC (citing USAtoday) states it's a U.S. Naval War College (Rhode Island, yes I'm splitting hairs) report and has a video. Anchor just called it Assburgers. They are claiming it's just a theory (read: hypothesis) that can only be proved with a brain scan.

Wait, what? My brain scan was for CP, all my Aspy tests where written and one on one with an educational psychiatrist.

This smells. But it's been fun diving into it.

Before I start demanding my own country (and grumble "show everybody"), I can't help but think this is a little propaganda. Also, to every Aspy who reads this blog, look what we can achieve.

Disability my eye, super powers engage! Guess we'll all have to settle for fictional universes in gaming.

"Show everybody!"

Links:

http://news.sky.com/story/1421850/putin-has-aspergers-pentagon-report-says

http://www.msnbc.com/way-too-early/watch/vladimir-putin-has-aspergers--study-394342979846

Disability and procreation.

Disclaimer, before I start, this post is opinion based on my own experience, internal thoughts of my own scions and thoughts conjured by articles I have read today.

These articles are both from the Independent and are about disabled persons of both genders who are to be sterilised for their "own good". One is a lady with six children already who doctors feel will die if she falls pregnant again. I know it's the 21St century and we all have this magical view that dying during child birth doesn't happen anymore. According to Margaret C Hogan, et Al in the Lancet (2010 Maternal mortality for 181 countries, 1980–2008: a systematic analysis of progress towards Millennium Development Goal 5) the UK ranks No. 23 with 8.2 deaths per 100 thousand. Last time I looked, the UK is a first world country. Child birth is still a risky business. There's an argument that this is the start of the descent into eugenics. While that would hold water if there wasn't both a good medical reason and the woman did not already have six children. The second article was about a man who had an IQ so low he would forget to use condoms (although, frankly, every man is guilty of that while plastered) and, while he was having supervised visits to his girlfriend, who also has learning difficulties, he managed to impregnate her. The resulting child is reported to have had significant impact on both families, which I read as neither parent was able to cope. Babies are said to be hard work for every parent, disabled or not. I know plenty of disabled parents, who cope and are great parents.

I have butted up against learning difficulties and parenthood in university. I took ethics in my final year, and both in the literature and in group projects, there where case studies of parents with various grades of learning disabilities, including Downs syndrome, and hypothetical outcomes. Would a parent with a learning difficulty understand the needs of a child? Would they understand the implications and impact of having a baby?  How will they feel if the child's intellectual ability grows at a "normal" rate (if you've read this blog, I don't believe in normal), and out grows theirs? Are disabled parents going to become a burden much sooner than other parents might (i.e. through dementia or stroke) and with more certainty? Does it limit the child, both through possible poor parenting (although honestly most parents muddle through) and by stunting their future, inadvertently?

None of these questions have simple answers, I certainly don't have any answers. I'm asking them to get us all to think through issues surrounding disability and parenthood. They are, in my opinion, slightly negative. I haven't once considered that blind parents are perfectly capable, a mother in a wheelchair is more than able to care for everyone in her family. Disability should never be an automatic preventative of parenthood. I'm sure everyone reading this blog knows someone who is both disabled and a capable parent. For every negative example presented, I'm always sure there's ten positive examples, E.g. for every dole scrounging illegal immigrant with ten children and a criminal past that the Red Tops love to parade around as an example of Broken Britain, I suspect there's ten hard working, law abiding immigrants who want a better life and to contribute to society.
It takes ethical committees some time to discuss these issues and come up with a conclusion.

I have met people who are just below the line of what is considered disabled who are automatically banned by law (Ireland) from marriage and children. It makes me wonder if I fall into some draconian law. I've discussed before that I have thought long and hard about babies. I understand the concept that children take work and have no off switch, but some days I struggle to self care, so how can I suddenly be able to care for this vulnerable, helpless creature that is totally dependant on me for everything? Maybe these are feelings of all parents, but I think for me there are serious considerations to be made.

None of this is helped of course by my opinion that in the general population that the ability to have babies doesn't automatically entitle you to babies. If the forced sterilisation on medical grounds of intellectually disabled people has people screaming about eugenics, then a broader brush stroke really will set off the eugenics alarms. Today you can stop disabled people, tomorrow what stops you from declaring another group "undesirable" and we're free falling into 1930s Germany.

While I would hope our laws, judicial system, government and general populace (yes, when things start going pear shaped, the citizens of any society need to join the debate and stand up for each other and what's right. Remember the lesson of "when they came for me, there was no one left to speak out for me") have enough checks and balances to prevent wholesale and indiscriminate breaches of human rights, including that of procreation.

It's a ridiculously difficult topic, filled with pit falls and caveats, that requires nuanced and thoughtful discussion. Monotone honking about eugenics on one side or equally tone deaf "it's for their own good", is neither constructive or growth inducing.

All I know for sure is my parents are going to be enjoying years of not being grandparents, and I'm going to enjoy disposable income and holidays during term time.

Be safe and thoughtful of others.

Orthotics day 1

So I've had the orthotics for just over a day now and I've worn them for approximately 8 hours, including four hours in work.

Aside from the fact that my shoes are all too small, they are comfortable and I am learning how to do stairs with them. My colleagues, again, have been amazing and supportive.

I'm not sure if my work shoes are too tight but the heel foam has already flaked off. I rang the department and I'm due back on Friday. I think they said they sell shoes too, so I might enquire about that.

New legs

What's this, two posts in one week? And on consecutive days no less. It must be bizarro world.

Anyway, the long wait for new legs is over. I dutifully got to my appointment this morning and got fitted with these babies.

They even have an ankle joint, but on the down side they limit my ability to crouch and kneel. From the back they look like some medieval style armour.

I'm to wear them an hour a day and gradually increase the duration, so immediately I wore them for two hours, after which everything below my knee hurt. They are snug. Getting into shoes is the next challenge, and I see shoe shopping in my future.

There'll be a review, and I'll try to update regularly.

For now, have a good one.

Physio update.

So today was my last day of intense one on one physio. There'll be more, but from now on its gym sessions then a review in a month (for anyone paying attention, tomorrow is my orthotics fitting so the review in a month thing lets the physio see how well I'm doing while having my legs corrected), and then I will be told to join a gym and spread my own little wings and take some responsibility for my own   work outs.

What matters from today's session is the physio retest. I scored 50/56 on "admission", proving I'm not as contractured or disabled as others, and today I scored 56/56. Two months of weekly visits has already made a significant change. Hopefully with more work and the orthotics, things will continue to improve. 

In other news, I rang my local MP to find out more about their stance on the subtle cuts not only in disability support but also in work schemes for the disabled. I've blogged before about not doing unsupported posts, and I plan on reading up about cuts before I go on a gut busying tirade, but if what little I have read is true, then it's deeply worrying. 

Fortunately, my managers  manager told me recently she felt that I was doing "really well" after three months in my new post and my manager by proxy (my own manager got one of those holiday things I hear so much about) told me I was doing "well". I feel I'm doing fair to middling (which I think is a nonsense phrase meaning "it's ok but I'm being modest") but I would rather under estimate myself than get over confident. My own managers recent preformce review of me is so good that I feel it's not a review at all but inspiration to do better again this year. I've said as much and he laughed, which is code for he's caught.

So orthotics tomorrow, in the mean time, enjoy this gem:

The cost.

Mobile upload time again!

A friend posted on Facebook recently about having to do a test for a learning disability for university exam. So far, so reasonable. Tests allow for measuring support, what adjustments are required and the quantifying of the "severity" of the disability.

The kicker?

They are being asked to pay  £100 for the test.

Paying is nothing new. I'm sure my parents forked out a small fortune to get me tested and reviewed. In university, I'm sure if I'd actually engaged with the disability support service, it would have cost me money (I know, cos I read it in the leaflet). As it so happens, after my teen years, and years of schooling in which I was "labeled" disabled, I decided I wasn't going to engage with disability services. Hindsight is a wonderful thing, and this time around I am engaging and it's fantastic.

But I digest.

After losing my job in London, I had a scheduled test with an educational psychologist. (Better late than never). It cost me £600. A friend gifted it to me.

Given the following events in my life, best £600 I ever spent. It gave me an answer to managers in London, it gave me a road map for the following years and made for an easier life.

But still, it's locked behind a pay wall. I'm assured there are grants and charities that can help but if money is an issue, then gaining support can be hard.

My CP is a medical condition and therefore was covered by the Nhs. Even my orthotics are on the Nhs. (Made locally, so I'm supporting local business.)

Money does make the world turn. Modern gaming involves pay walls. Health care should not be locked behind a pay wall, but sorry, as the new corporate St John Ambulance prove, there's money to be made.

GP neuro follow up

Hurrah I'm trying mobile blogging again, mainly cos I've just had fasting bloods and am now out having a double donut burger to compensate.

So I started this morning with early physio. I collapsed last week during physio so they took no chances with me fasting for bloods and did bed exercises. I'd love that to be as relaxed as it sounds but good Lord can physio manage to cause pain while doing the most mundane tasks, like walking. And when I say walking, I mean the most stretch I could achieve by lying down and digging my heel into Sarah's gut and then mimicing the walking motion.

To prove I'm not even a little symetrical, my left leg pulls my gluteus muscle while my right pulls my calf instead. My thigh muscles are cramped and locked, pulling everything off centre. I really feel for people who are more contractured and stiff than I, because I cannot imagine how painful the physio work is for them.

So I have four more one to one sessions before I start in gym sessions and I need to buy a Medicine ball (? Those gym ball things) that can apparently be bought from your friendly cheap store, as long one doesn't put it under too much strain (unless I want hilarity and explosions to ensue).

So following that I had a practice nurse appointment with my GP. This year my GP picked nuero disorders as their subject of focus, and I fall, for once, neatly into that category. Stacey is my practice nurse and she's a damn good one, having steered me through asthma follow ups and looking at my toe nail that's doing something not in accordance with the manual with ease and good humour. 

I arrived early cos "it's fasting bloods o'clock and I'm hungry!" (I never claimed to be a good patient). Stacey got me in her office and for a solid thirty minutes asked about my progress with physio (it flipping hurts is apparently not an appropriate assessment of it) and my general day to day health. She asked about work, and then asked if anyone commented. I said a couple of clients had but they had previous experience with CP and where very supportive. My colleagues don't treat me differently, and Stacey asked if they accepted me.

I think the most important thing about work is that they accept me. Many have experience with CP, and for me, it's not that I'm achieving in work, the mile stones I meet, the compliments I get (at least one a month), the responsibility I'm trusted with, the resourcefulness I can access, it's the fact that my colleagues don't see me as the autistic cripple, but as a team member and leader. I base my decision to stay in the job much more on managerial support and colleague acceptance than I do on advancement opportunities and salary increases. 

Stacey then asked about steady relationships and how it was with my partner and was it all love etc etc. thankfully she cut to the chase with the words "I'm asking about babies". I should have told her I was flattered but she's a married woman, but I think my wit deserted me with shock. Babies are not something I focus on, although aren't they all cute when they are someone else and asleep and/or being adorable. I explained to Stacey that I don't really consider children in my future due to the bottleneck of various interesting disabilities I seem to be, and that any procreation would have to be done with the knowledge that I could be burdening a child with all of my problems (although if it was just me left to repopulate the planet I guess I'd have to step up to the challenge, and then we can enjoy a second Stone Age as my kids lack the imagination to make fire).

Stacey explained that I could see a geneticist before choosing to make that irreversible lifestyle choice, and while I'm sorely tempted to go see a geneticist to ask about genesplicing (come on dino-pocalypse), I think I'll avoid babies for the time being.

Finally we discussed the upcoming robotics fitting for my legs and I have promised to keep her posted. I did note that in the orthotics department literature there's a line about no nurses working in the department which I think is code for "if you need any assistance with mobility or continence, please bring your own", and I shall ask if this is true during my fitting. 

The doctor came to hit me with the reflex hammer, stating I had brisk reflexes, and he wisely avoided my feet, knowing that my reflex there at least is rather pronounced and has taken more that one eye out in the past. 

Blood results in a couple of days (come on no diabetes) and follow up for asthma in six months, all in all a good gp visit.

Also discussed having a robotics tattoo done on my legs to reflect the weird machinery inside that's clearly causing all these issues..... In the meantime, goodnight, whatever you are. 

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