Why I'm quiet - a glimpse into the social world of an Aspie

Here's a little snippet into Aspie brain in terms of socialising - but I'll sum up to start with - if you meet someone you can't quite figure out - maybe they're very shy + quiet, a bit awkward - don't assume they don't want to be around you - their socials skills might just not be the best! (Or just work differently)

Anyway, here's a little insight into an Aspie world:

When I know I have a short-ish social encounter coming up (this can be anything from coffee after church to a doctors appointment) I will 'rehearse' how I think the conversation might go, what I think would be the best response to various questions/actions. 

This 'scripting' or rehearsing technique however, is only useful when I know in which context I'm meeting someone. If I don't know which 'box' to put you in, I can't plan a tailored response. 

People might say 'just be yourself' the trouble is when you've had depression for 5 1/2 years you really don't have anything to talk about! I have many stories I could to tell, but they are not ones people want or like to hear. So that part of my life complicates things a lot.

In addition to the planning stuff I do, after I chat to someone the conversation/s will replay in my head for hours and sometimes days afterwards. It's not me being vain, worrying what people think - I'm genuinely just trying to figure it out so I know what 'box' to put you in and how to respond if I meet you again! 

My brain is a bit like a computer program when it comes to socialising - in unexpected social situations where I don't have a 'script' I'm lost. Computer says no! (Or more like get the heck of here Emma!)

The irritating thing is I'll often think of a great thing to say - the day (or week!) after the conversation.

I'll even find myself repeating conversations out loud when I'm on my own. It's just my way of making up for my lack of social intuition. I'd say that's basically what (at least for me) Aspergers is - lack of social intuition (plus some sensory sensitivity).

You might be thinking - if socialising is SUCH a bloody effort whiney girl why bother?! Well I am human - different yes - but I still need friends and family to live life with :)

In other news I'm waiting to hear back about a very pivotal thing - hoping I get the answer I want but trying my best to trust God knows what's best for me and it may not be the same as I think. From there I will be able to make some more decisions. I am definitely moving to Cheltenham regardless though, so that's next on my to do list!

Hope everyone is having a great Jubilee double bank holiday weekend :)

Night all 

X

Thoughts and - don't drink Pepsi Max Emma!

So I haven't written as much recently, been doing some thinking; well a lot of thinking really. 
As far as things've been for the past 5+ years, things've been pretty good recently. Still struggling sometimes with the mental health stuff - just the eating really. The other stuff has been under control since Feb. Taste is a strange thing though isn't it? They say smell can evoke very vivid memories, feelings etc. For me - Pepsi Max. Sounds a bit strange, but all through the worst of my illness I've drunk Pepsi Max, switched to Coke Zero recently cos I like it better... but tesco's didn't have any today, so I had some Pepsi Max... it was kind of a déjà vu type feeling - very strange feeling... I just took a sip and it came over me. Weird. Very weird. Note to self: Don't drink Pepsi Max!!
Anyway. The physical health stuff is somewhat better. Completely shattered after walking round the garden centre with Andrew n Mum earlier, but it's a big improvement on the wheelchair! My back's still being nasty but that's not really going to change I don't think. It's just twisted, and unless I go through fairly major surgery, the options really are painkillers/physio/restricting activity. And the surgery may or may not help. (apparently - although when it feels like my ribs are crushing my intestines/liver everyday cos they're twisted backwards on themselves... I am reluctant to completely agree!). Hopefully something can help. I don't care what it is, I just want to be able to walk around and... well...
There've been a lot of coincidences recently that've got me thinking. Those who knew me when I was at school may know I wanted to study medicine - I had no doubt that I would!! (If only I knew what was coming!) I'd completely ruled this out after the past few years, but now... just knowing the right diagnosis for stuff has helped no end. Hopefully people will stop trying to fix things that aren't broken. And I can work on fixing what is.
I'm going to see how this next year or so goes, how my physical health is etc, and review things. It's still what I'd like to do. I love learning, I'm hardworking and I want to use my life to help others. Sorry if 'help' is politically incorrect now, I don't know! I think you know what I mean. I'm not saying I'm definitely going to go and do this (and if I do, I know it'll take longer than I'd like ;) ). But I'd like to give it my best shot and I haven't been able to do that yet. Not ruling anything out. If it doesn't work out, maybe I will train as a proper silversmith! My experiments with silver that keep not working are far too expensive!!
So. I'm going to move. To Cheltenham; I like it, that's where my church is, and there are actual places within a 5 mile radius of a flat ;) Busses are good (for Gloucestershire anyway! :P) and there are a couple of places I could volunteer at/with to get me back into a kind of ... something lol. 
Wow that was a lot of waffly crap that took far too long to write!! I'm hoping to actually get to sleep before 4am tonight, so I'm going to have a nice girly bubble bath and go to bed I think.

Night all

X

p.s. I still haven't quite got my head round the whole AS thing yet... it's challenged my preconceptions of what someone with AS is like (which I thought  (having an Autistic brother)  were fairly accurate). But knowing that others will have those - and possibly more, (e.g. 'trainspotter') -  type stereotypes when they think of Aspergers... is a difficult one. Do I say? Do I not? With education and employers I kinda have to say... but then.. all those misconceptions, prejudice and outdated stereotypes come into play.
pps. I'm hoping all the physical stuff could just be malnutrition... cos, quite frankly the other options are worse! Neurology appt not til July though and who knows when Frenchay will be able to see me about the Scoliosis... more waiting... I'm far too impatient for my own good!! 

Doctors. The good, the bad and the downright useless!! plus IKEA + waffle

The orthopaedic surgeon (supposedly a consultant) today was, unfortunately the latter. And Tetbury hospital is useless and tiny - why was I referred there?! 
For starters, they didn't have a single plate big enough to fit my whole spine on in their x-ray room. He wanted the growth plate at the top of my pelvis to be on it (to prove that I'd stopped growing.... did he LOOK at my Date of Birth? I'm 22 for goodness sake!!!) and got about 7 verebrae up from there... this basically showed the very start of the curve, it went off the page, off the xray entirely.
Measurements are quite important. anything over 40 degrees if causing enough problems 'qualifies' for surgery. Mine went from 30 to 35 degrees aged 14-15... it asn't been measured since.... he measured like the first 3 affected vertbebrae... and said it's 24 degrees, won't cause me any pain, if i'm in pain it's nothing to with with my spine being twisted. 
After a little bit of pushing well.. what am I am meant to do about the pain? he just said it's not your scoliosis. I'll write to your GP, I don't need to see you again. 
So.. I have an appointment tomorrow with my GP cos I need to move.. ugh... NHS shake ups. I so wish I had the money to have private healthcare!!
But I need to persuade him to sent me to the scoliosis specialists in Frenchay, not to one of Crawshaw's buddies in the GRH. I hope he believes me with the pain etc and the visual worsening... I can't wear my usual clothes (not cos I've put on weight, I weigh less than I did then!) cos visually, my left hip sticks out a flippin mile. No clothes bloody fit. I have enough problems with finding clothes anyway. please please please someone either make it not hurt or fix it! PLEASE!!!! ;( 
Anyway. Had a good cry on the way home then went down the A46 to ikea - beautiful scenery, (on the A46 not in IKEA :P)  took some photos - just uploading them now :) bought a few little frames etc. Going to do a little fiddling tonight on photoshop, and tomorrow hopefully I'll have enough energy and not be shaking so I can do some silversmithing :D might make something out of silver clay... if I can find the proper tools. (or ones that will do at least!!) 
My friend has made some beautiful pendants out of polymer clay... I've never been a fan really... reminded of fimo that I did when I was a kid... but I might look into it a bit... I fancy doing something not in metal for a change, something very different, or maybe something to make up elements combined with silver... who knows... I might buy some and have a play... hopefully it's not as expensive as silver clay! 
hehe :D
Anyways oh my shop is... : http://folksy.com/shops/MorningStarDesigns
The jewellery was made a while ago, moved onto quite different things now, so do keep checking the page, or 'like' it on fb :) I'm trying to spread the shop address as far and wide as possible, if you go onto the page and click 'share' and share it with your friends that would be AMAZING :) :) 
My fb page is: https://www.facebook.com/morningstardesigns.stroud 


Cheers everyone :) night all xx


ps. I've noticed a lot of people are having a hard time recently, just keep swimming.. just keep swimming just keep swimming... 
My dreams seem SO far off it's laughable that I'll ever achieve them. But it's what I want to do. And if you know me really really well, you will know that once I've fully set my mind on something I WILL DO IT. No matter what it takes. I'm just one of those people. 
I'm just trying to get out more... I just HATE public transport... by I've walked to the bus stop, got off in Stroud and walked along to Star Anise I'm in a lot of pain and so so tired. (That's a good day... on a bad day I will be stuck in bed all day.) On an average day, it's walk short distances, wheel chair longer, or like if I'm going out in the evening, I know I can't walk anywhere in the morning... but found some really helpful articles on the scoliosis website about daily living skills to help minimise pain. (oh yeh the 'specialist' also said scoliosis is NOT painful.)


Anyways it's late... I can't sleep again, My photos have just downloaded, and I'm waiting for things to scan in, but when that's done I will try n force myself to go to sleep!!


To all those having a tough time - keep going - I don't know what people believe, but I believe I'm still here... and there's a reason. God's not finished with me yet!


hehe
Waffling again... sorry... 

Night night 

XX

Oh the controversy... Autism and the MMR

*note* I am not qualified in anything other than personal experience and an interest in neurology
Just read another article about vaccines and autism... 
I'm very (controversially) undecided from a scientific point of view... a link hasn't been proven, but also neuroscience is an area of ever-evolving knowledge, and we don't know everything - I think sometimes leading scientists can forget that.


Whether immunological vulnerabilities are as a result of, or a cause of Autism.... I don't know enough about neurology to really form a proper opinion - the generalities of rises in autism and the MMR jab and the trials conducted are obviously of no use and do not prove anything. 


I wonder if a very small number of cases could be linked, via genes making that person susceptible to neurological changes somehow triggered by the vaccine, or whether, as popularly believed, sudden changes do just happen to appear a few days after the vaccine in certain cases...
From a personal point of view, both me and my brother have autism of (very) varying degrees. We also had quite nasty reactions to the MMR. From what my Mum has told me, my brother was quite unwell after the jab, and then developed classic autistic symptoms quite suddenly. I also reacted badly and had what looked like a measles rash afterwards - I've seen the photo! Only now am I being diagnosed as being on the Autistic Spectrum though. Also indeterminate colitis (a kind of Inflammatory Bowel Disease which has features of UC and Crohn's.. indistinguishable) has been loosely linked to autism - I'd like to read more about this as that is what I have. Histologically it looks more like Crohn's, but they've never caught it in my small intestine. It is an autoimmune disorder... which just raises a slight wondering in me that maybe immunology and autism should be thoroughly studied in relation to each other, to try and determine any possible links, and hence put the MMR theory to rest once and for all, or possibly put it in the spot light again. 
I by NO means think all cases of autism are caused my MMR. I know symptoms present around the same time as the jab is often given... but from personal stories from others, and my family... and the immune system problems often co-concurrent with some people with Autism... I wonder. 
If there are genes that are linked with autism AND auto-immune problems - and whether these simply showed up as being unwell in me + A, and the Autism would've occurred anyway - or wether the immune reaction at that age messed something up...  I guess fMRI's on babies aren't really possible :P hmm. I think my family would be quite good guinea pigs for autism gene profiling lol


ANYWAY
Currently there are no KNOWN links or risks. However, personally, if I have kids (which hopefully one day I will) paying for separate, more spread out vaccinations is what I would do. Even if purely because it made me + my brother quite physically ill. I wouldn't not vaccinate them though. 


So that's my controversial post out the way... think I will separate today's general blog into a different post! 


Please don't shout at me for my views... No proven link doesn't mean no link. and a link doesn't mean every case is linked.  
I just have an open mind on this one.

Perfection(ism)+redemption and Christianity+selfharm/mental illness

So I'm a bit of a perfectionist. No surprise there for most. There's something that I've been thinking about for a while and kept getting confused on, but think I've finally sorted it out in my head.
People keep saying we're 'alive in Christ', that when you accept what Jesus has done for you, you are 'born again'. etc. Biblically this is true, so I have always felt so guilty for doing bad stuff after I became a Christian, as if my thoughts, actions etc should all be instantly perfect. Main example - self harm. This is very difficult territory which I have still yet to totally figure out in my head. There are all sorts of opinions flying around about mental illness in relation to faith at the moment, but back to main point for now. But being saved, accepting Jesus, doesn't make your behaviour, mind or body perfect instantly. It doesn't make life a doddle. By a LONG way. 

So you also must consider yourselves dead to sin and alive to God in Christ Jesus. 

- Romans 6:11

If you look through this ^^ passage, I think it's talking about the power of sin. It means sin has no eternal power over me anymore, in that way I am dead to sin's power. (cos of the cross) We discussed this last night in a church group thing I'm just starting. I think I can sum up the first half of this post like this: I am spiritually alive; but I will not be made 'perfect' (in all the ways God intended before sin {rebellion against God} existed), until I am with God in heaven. In the mean time, I know the ways God intended me to live are the best for me, so with the spirit's help, I will try and do the best I can with what I've got!


So! I need to remind myself a lot that mistakes  are mistakes, sin is sin, I need to try and walk in God's way more, instead of  my own... but not beat myself up when I don't get it right; cos I am human. 


But how does this work out in real life? Good question! Well the most obvious thing I'm not good at is treating myself with respect and love. (ugh just saying makes my insides squirm!) 


The the second half. Christianity, mental illness and self harm. 
Firstly, there is a growing recognition and acceptance within church that mental illness is no more the person's fault than a physical one. God can heal both yes, does he always? No. But you would recommend someone with a broken bone to get medical treatment, not just 'pray more' or 'have more faith'. These attitudes are changing. The difficulty comes when an illness causes you to sin. In my case the main thing being self harm. What's the general consensus then? 


 Is it OK to self harm? is it even a sin? - I've gone into more detail with my thoughts on this below; but primarily, I'm not sure if God is concerned with whether it's sin or not. He loves us and doesn't want us to be hurting inside so much that we need to take it out in such an extreme way. For a Christian who knows someone who self harms, don't make your primary aim to 'make them stop it'. Make it your primary aim to love that person, letting God's love flow through you. Support them, invite them over, meet with them, whatever their needs are, do what you are able to help them. Try seeing that person through God's eyes. The last thing (I know I) need is judgement and pressure. 
With the whole is it a sin thing... I'm sure God would rather we didn't do it, cos I know he loves us and doesn't want us to hurt physically or emotionally, but is it a sin? There's the whole 'your body is a temple for the spirit to live in' thing... well here's the verses:

Do you not know that yout are God's temple and that God's Spirit dwells in you?If anyone destroys God's temple, God will destroy him. For God's temple is holy, and you are that temple.

- 1 Corinthians 16-17

This argument seems pretty clear huh? ... BUT the word 'you', is a plural 'you'. If you rewind back into that passage, Paul is writing about the church, not an individual. The Jews believed that the temple is where God dwelled, so Paul is saying 'you' as a group of people, are like a temple, because God dwells in you now. I'm not sure the primary meaning of these verses (when put in context,) means what a lot of people abstract it to mean. 

However as I said before, God doesn't want you to be hurting, and morality alone tells us that it's not a good thing to injure someone else, and you have the same value as everyone else, so of course doesn't wish you to hurt yourself either. So sin? maybe... but that lie you told your friend the other day to get out of something? same thing. Just more socially acceptable. Doesn't mean it's spiritually more acceptable too.

OK think I waffled on farrr too much and deeply, so:

To people who know someone who self harms: love them, don't judge them. 

To anyone who is has a mental illness - it doesn't make you any 'less' of a person or Christian. 

Well that was a head-stretching one. Hope I made sense!
Thanks for reading!

what a week...

So I can't remember how much I posted about in my Birthday post. Think I mentioned the wheelchair; well things still aren't good. Actually I'm feeling really nasty. (To put it mildly!) Things've been getting worse for 6 months or so. 
There is definitely something quite wrong. From what I can gather it's most likely m.s. or m.e.(/cfs) but that is for the doctors to decide... have been referred to a neurologist.. it's all a waiting game really.
Had another random attack of severe pain tonight. Very strong, right around the area of my liver/right kidney. Searing pain... wasn't sure what it was, so given how ill I've been feeling recently and how flippin painful it was, decided to go to a&e; established my liver + kidneys are OK and it's not a UC flare... so most likely neuropathic again :/ 
So I'm now dosed up with painkillers; some strong stuff, so hopefully should be able to manage at home with help from Mum. To cut a long story short, in November the GI doc wanted to start me on 1 medicine that's meant to be good for long term neuropathic pain (pain that comes from your nerves/brain not working right basically) but couldn't BUT he could now. So need to see about that. 
But yeh... it's 5.30am and light and I just got home... so think I'll do some design on illustrator - maybe tomorrow Mum can take some photos of stuff and I can upload them to my new online shop :D I'll post a link here when I've got it up and fully running :) heck - you'll all get spammed with links ;) jk. I wouldn't do that ;) 
Anyway - better get designing whilst I still have the energy to type + click etc :)
Hope everyone has a good Sunday wherever you are :)
X

Birthday, answered prayers, rubbish health and I'M READING A BOOK!

Well the last couple of days have been pretty rubbish. Thanks to all who wished me a happy birthday, it did cheer me up :) 
But yeh, I'm not the healthiest young woman in the world anyway, but the last few months there's been an added extra nastiness. The last couple of days my legs really haven't wanted to work at all. It might be m.e./cfs again (was diagnosed with it aged 7-8) but they've referred me to a neurologist to see what they say about what's been going on. 
The past 2 days have been very tough, frustrating, but also God has answered some prayers. Firstly, the neurologist referral, and also yesterday I planned to go shopping for my birthday, but I wasn't able to; today we were going to borrow a wheelchair from the red cross, so I could go out somewhere today, but forgot their office shuts at 3pm. We left Chalford at 2.40, and I prayed that God might let us get the chair today, somehow. It's a 25+ minute journey, and we got stuck behind a learner, a lorry, every traffic light was on red, lots of traffic at roundabouts - I just said please, and trusted he would answer. Mum wanted to turn back, but I said no, could she keep going... We got there at 10 past 3, and the Lady in the office was still there, went through some paperwork and gave us the chair. Great answer to prayer :) I was able to pop into Gloucester and get some make-up, shampoo and a dvd :) 
These very very bad patches only tend to last a few days, but my 'good' days are getting worse and worse. Hopefully I'll get answers soonish, I hate not knowing why I'm feeling awful, cos I don't know what will or won't help! anyways. 
Bit freaked out tonight. I hate living alone :( especially when so much effort is needed just to move. :/ Got my kitty though and a good book - yes ME! READING!!! (and it's not a textbook!) 
Reading 'Mere Christianity' a collection of speeches C.S. Lewis gave on the radio during the war. 
I like this quote for me today: "God knows what a wretched machine you are trying to drive, ... he just asks you keep doing the best you can"