I was just looking back at when I last posted - 13th of July. Oh how things have changed in the past 4 months... ...4 months... is that all?!
Around the time of the last entry, James and I were just getting to know each other... and we've been together well since about 2 weeks after then, nearly 4 months now :)
I am living in Cheltenham, I've done a half term-and-a-bit of my A levels - it doesn't sound like much, but for me it wasn't the academic stuff I struggled with at all, it was all the other stuff that goes along with being at college etc... I guess it just wasn't God's timing. I'm not entirely sure why I had to wait 6 years and go through all of that until I started my A levels though... It'd be nice to find out one day.
I'm not really sure where to start with 'what else in new'... everything is new... I'm 'me' again... that's a massive answer to prayer. Emma is back... although rather scarred now.
Oh I reapplied for funding stuff, they still won't agree :/ I'm coming round to the idea that I may have to live with these for the rest of my life.. It will just make going into medicine so much more... squirmish! When people look at or ask me about my scars, at the moment I still want the ground to swallow me up - it feels like my organs bunch up together and shrink back inside me away from my skin.
Looking back over the past few years... it is quite miraculous that I'm still alive. Finding out I'm aspie, turning back to God has strengthened me so much... I'm so excited about the future now :)
... Never ever thought I'd say that again.
I think that's all for now,
Take care peoples
X
19 November 2012
13 July 2012
Moving on
So, today I put down the holding fee for a flat in Cheltenham! It's easily walkable distance from town, but in a quieter residential area, just down the road from both my church and a big park in Cheltenham - so green countryside won't be too far away for country-bumpkin me ;) I can take my cat too! The only downside is it's very small. I'm going to have to sell quite a lot of furniture and maybe buy a couple smaller bits which make better use of floor space.
I'm feeling good tonight. Kind of reflective so sorry if this waffles on about random/deep/cliche nonsense.
There are so many cheesy phrases I could use right now, 'start of the rest of my life' is the first one that comes to mind. I'm feeling excited about the move, but also calm. I was quite nervous last night, but today I ok. It's going to be a massive change, it's almost like moving out of home (even though I technically live on my own now). I'm looking at probably going to college to take some A levels as they would take the same amount of time to complete as a year of voluntary work and a year of access course, but they're so much more widely accepted. If I can discipline myself to work through the boring crap-ness of these 2 years, many other doors open to me. I'm hoping now knowing what the long term bit is (Aspergers) and with the other stuff being better, that college will be better at supporting me and being more flexible with me. To be honest if I say I need x y and z because of a disability it would be against the law not to make 'reasonable adjustments' to accommodate me.
So... in my last post I said about the appointment for assessment for surgery being turned down. That was a massive knock. I felt pretty rubbish after that but got through it.
I never realized how much I had distanced from God until recently. I'm so grateful for him and my church, where I've really been able to grow in my faith again. It's definitely what's keeping me on level ground at the moment. He's who I turn to for everything, I know I can trust him with everything and I can't wait to see what he has in store for the future. I know he will give me what I need, although sometimes his ideas are rather different to mine!
So yeh, I'm feeling good about moving on, scared obviously. But I've waited so so so so so so so so so long for this, I just can't wait to move on from this chapter of my life, despite the many challenges I know I'm going to face, I just feel like everything's beginning to slot into place.
Going to shut up now, I need to eat something before the painkillers wear off! (Eustachian tubes playing up - causing a stupid amount of pain.. been awake since 4am with it)
Night all,
X
I'm feeling good tonight. Kind of reflective so sorry if this waffles on about random/deep/cliche nonsense.
There are so many cheesy phrases I could use right now, 'start of the rest of my life' is the first one that comes to mind. I'm feeling excited about the move, but also calm. I was quite nervous last night, but today I ok. It's going to be a massive change, it's almost like moving out of home (even though I technically live on my own now). I'm looking at probably going to college to take some A levels as they would take the same amount of time to complete as a year of voluntary work and a year of access course, but they're so much more widely accepted. If I can discipline myself to work through the boring crap-ness of these 2 years, many other doors open to me. I'm hoping now knowing what the long term bit is (Aspergers) and with the other stuff being better, that college will be better at supporting me and being more flexible with me. To be honest if I say I need x y and z because of a disability it would be against the law not to make 'reasonable adjustments' to accommodate me.
So... in my last post I said about the appointment for assessment for surgery being turned down. That was a massive knock. I felt pretty rubbish after that but got through it.
I never realized how much I had distanced from God until recently. I'm so grateful for him and my church, where I've really been able to grow in my faith again. It's definitely what's keeping me on level ground at the moment. He's who I turn to for everything, I know I can trust him with everything and I can't wait to see what he has in store for the future. I know he will give me what I need, although sometimes his ideas are rather different to mine!
So yeh, I'm feeling good about moving on, scared obviously. But I've waited so so so so so so so so so long for this, I just can't wait to move on from this chapter of my life, despite the many challenges I know I'm going to face, I just feel like everything's beginning to slot into place.
Going to shut up now, I need to eat something before the painkillers wear off! (Eustachian tubes playing up - causing a stupid amount of pain.. been awake since 4am with it)
Night all,
X
5 July 2012
Really tough day...
So.. it's been a long time since I've written...
This will be very open, as I feel this sort of stuff needs to be less scary to talk about - and - it's all that's on my mind at the moment. So here goes, forgive me for perhaps being a little blunt.
My arms and legs are severely scarred. I have always wanted to work as a medic, which means wearing short sleeves. Which causes... MAJOR problems.
I have been free of self-harm for over a year now. I am moving on in life and want nothing more in the world than for the scars to be gone. I know whatever surgery takes place my arms will never be 'normal', but it's very hard to move on in life when your intimate history is written in bold capital letters all across your body.
I believe I meet the criteria for NHS treatment as the 'original issue' has resolved and the scars cause 'severe psychosocial dysfunction' / psychological distress.
They cause more than that... imagine being in a boiling hot room and having to wear long sleeves and trousers or thick tights... imagine never being able to go to the beach or sunbathe ever again... never being able to wear a t-shirt ever again, and only dresses that can be worn with a jacket and dark tights (skin colour ones even at the thickest denier just don't work).
It's not just in my personal life they become difficult... a LOT of work uniforms for low-paid jobs insist on short sleeves - and even with long sleeves if I stretch to get something a couple of scars will peek out of my sleeve - it's not something employers will 'see past'. It severely affects my chances of employment and career opportunities.
That's not even mentioning the effect they have on my self-confidence... (like what self-confidence!!)
Anyway, my GP referred me to a plastic surgeon, and I had an appointment all booked for early-mid august... today I got a letter in the post saying my appointment has been cancelled due to 'non-funded procedure'. There aren't really crystal-clear guidelines on this sort of thing cos it's so seldom requested/done. He will put in for an INNF/IFR (interventions not normally funded/individual funding request) but said he really doesn't know if they will agree to it and feels it's likely they won't.
So... now what?
Otherwise had a pretty boring day, haven't managed to eat 'enough' (although it still feels like too much) today, otherwise I've been doing well.
Oh the bus driver today was a *()&%^$*&^** ... I asked if the bus went past my stop because it seemed like an extra service (unusual time) and he looked confused and then said yes. then he stopped about 3/4 mile away from home and says 'I lied, it doesn't stop there'. Having just opened the letter when I was out and having a very heavy bag of shopping (nothing exciting - cleaning supplies) this was the last thing I needed. Had been holding back the tears for about an hour by then and that was the last straw... walked back home sniffling and feeling rather embarrassed! :/
There's no way I could ever afford to get surgery privately either.
So a waiting game. I was so hoping that this would just go smoothly and I would have a semi fresh start... so I could pursue the career I've always wanted and could walk around in everyday life without feeling paranoid that my scars are showing.
So everything is up in the air again and I'm feeling pretty lonely and rubbish.
Night all, sorry for the moan xx
This will be very open, as I feel this sort of stuff needs to be less scary to talk about - and - it's all that's on my mind at the moment. So here goes, forgive me for perhaps being a little blunt.
My arms and legs are severely scarred. I have always wanted to work as a medic, which means wearing short sleeves. Which causes... MAJOR problems.
I have been free of self-harm for over a year now. I am moving on in life and want nothing more in the world than for the scars to be gone. I know whatever surgery takes place my arms will never be 'normal', but it's very hard to move on in life when your intimate history is written in bold capital letters all across your body.
I believe I meet the criteria for NHS treatment as the 'original issue' has resolved and the scars cause 'severe psychosocial dysfunction' / psychological distress.
They cause more than that... imagine being in a boiling hot room and having to wear long sleeves and trousers or thick tights... imagine never being able to go to the beach or sunbathe ever again... never being able to wear a t-shirt ever again, and only dresses that can be worn with a jacket and dark tights (skin colour ones even at the thickest denier just don't work).
It's not just in my personal life they become difficult... a LOT of work uniforms for low-paid jobs insist on short sleeves - and even with long sleeves if I stretch to get something a couple of scars will peek out of my sleeve - it's not something employers will 'see past'. It severely affects my chances of employment and career opportunities.
That's not even mentioning the effect they have on my self-confidence... (like what self-confidence!!)
Anyway, my GP referred me to a plastic surgeon, and I had an appointment all booked for early-mid august... today I got a letter in the post saying my appointment has been cancelled due to 'non-funded procedure'. There aren't really crystal-clear guidelines on this sort of thing cos it's so seldom requested/done. He will put in for an INNF/IFR (interventions not normally funded/individual funding request) but said he really doesn't know if they will agree to it and feels it's likely they won't.
So... now what?
Otherwise had a pretty boring day, haven't managed to eat 'enough' (although it still feels like too much) today, otherwise I've been doing well.
Oh the bus driver today was a *()&%^$*&^** ... I asked if the bus went past my stop because it seemed like an extra service (unusual time) and he looked confused and then said yes. then he stopped about 3/4 mile away from home and says 'I lied, it doesn't stop there'. Having just opened the letter when I was out and having a very heavy bag of shopping (nothing exciting - cleaning supplies) this was the last thing I needed. Had been holding back the tears for about an hour by then and that was the last straw... walked back home sniffling and feeling rather embarrassed! :/
There's no way I could ever afford to get surgery privately either.
So a waiting game. I was so hoping that this would just go smoothly and I would have a semi fresh start... so I could pursue the career I've always wanted and could walk around in everyday life without feeling paranoid that my scars are showing.
So everything is up in the air again and I'm feeling pretty lonely and rubbish.
Night all, sorry for the moan xx
4 June 2012
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
19 May 2012
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.
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!!
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!!
15 May 2012
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...
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.
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.
9 May 2012
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! 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:
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!
Thanks for reading!
6 May 2012
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
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
2 May 2012
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"
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"
28 April 2012
Clothes shopping and me
So this blog may seem quite random, but clothes are posing a REALLY big problem to me at the moment! I would be very grateful if anybody reading has any ideas of things/styles that might be good for me, cos I'm all out of ideas!
I'm going to separate it into different sections, clothes shopping is a nightmare because:
1. I have Aspergers - I am extremely sensitive to: the feel of certain fabrics, (unfortunately I tend to find more expensive fabrics like silk and just good quality things less repulsive to my sense of touch!) the restrictive nature of certain clothes, (why you rarely see me in a coat - and when you do I'm never a happy bunny!!) I would love to find 'day' clothes that feel as comfy as pyjamas!! also I can't have things anywhere near my neck, I can only tolerate v-necks or very wide scoops or else I feel sick. (This is a BIG problem with fashion trends at the moment)
2. I have scoliosis - I can't wear clingy things or things that draw in at the waist, or baggy things that need a waist belt etc, I have too much waist on my left side, and no waist on the other, and on the left side my hip looks disproportionately large.
3. Due to my socially unattractive personality and not fitting in socially, I try to fix that by trying to look nice to make me fit in. The trouble is I don't know who I'm trying to 'fit in' with! Hence I tend to buy random pieces of clothing I just like, and they don't go together at all in a prescribed 'style'. (this trying to fit in has also lead to my eating problems, which to be honest is a whole different blog post just on the impact it has on clothes shopping, and I don't want to talk about it right now!)
4. Clothes have to cover all of my arms and legs, cropped anything is a big no-no!!
Put these things together and you have a recipe for disaster! I'm currently living in the few pieces of clothing I have left from when I was 16-17 and feeling rather young and out-dated in them! On the rare occasion that I meet people they never believe I am 21. They think anything between 15 and 18. Which I find quite insulting! I have yet to meet a person that hasn't asked me something along the lines of "so what are you doing in school or college?" >.<
Anyways if anyone has idea please comment - maybe I should enter the lottery and hope I win and then have clothes made for me :P
Then I feel guilty, cos I know I shouldn't care what I look like... or about what I wear... but I do. :s
On a totally different topic - I'm so worried about my brother. His care home is crap. I sort of feel like a second mother to him - I just want to scoop him up and take him home and look after him properly. But I know I couldn't blah blah blah. I wonder if we could have adjoining flats and he have 24 hr carers...
-sigh-
I can but dream...
Night night everyone, sweet dreams x
I'm going to separate it into different sections, clothes shopping is a nightmare because:
1. I have Aspergers - I am extremely sensitive to: the feel of certain fabrics, (unfortunately I tend to find more expensive fabrics like silk and just good quality things less repulsive to my sense of touch!) the restrictive nature of certain clothes, (why you rarely see me in a coat - and when you do I'm never a happy bunny!!) I would love to find 'day' clothes that feel as comfy as pyjamas!! also I can't have things anywhere near my neck, I can only tolerate v-necks or very wide scoops or else I feel sick. (This is a BIG problem with fashion trends at the moment)
2. I have scoliosis - I can't wear clingy things or things that draw in at the waist, or baggy things that need a waist belt etc, I have too much waist on my left side, and no waist on the other, and on the left side my hip looks disproportionately large.
3. Due to my socially unattractive personality and not fitting in socially, I try to fix that by trying to look nice to make me fit in. The trouble is I don't know who I'm trying to 'fit in' with! Hence I tend to buy random pieces of clothing I just like, and they don't go together at all in a prescribed 'style'. (this trying to fit in has also lead to my eating problems, which to be honest is a whole different blog post just on the impact it has on clothes shopping, and I don't want to talk about it right now!)
4. Clothes have to cover all of my arms and legs, cropped anything is a big no-no!!
Put these things together and you have a recipe for disaster! I'm currently living in the few pieces of clothing I have left from when I was 16-17 and feeling rather young and out-dated in them! On the rare occasion that I meet people they never believe I am 21. They think anything between 15 and 18. Which I find quite insulting! I have yet to meet a person that hasn't asked me something along the lines of "so what are you doing in school or college?" >.<
Anyways if anyone has idea please comment - maybe I should enter the lottery and hope I win and then have clothes made for me :P
Then I feel guilty, cos I know I shouldn't care what I look like... or about what I wear... but I do. :s
On a totally different topic - I'm so worried about my brother. His care home is crap. I sort of feel like a second mother to him - I just want to scoop him up and take him home and look after him properly. But I know I couldn't blah blah blah. I wonder if we could have adjoining flats and he have 24 hr carers...
-sigh-
I can but dream...
Night night everyone, sweet dreams x
23 April 2012
Assumptions about AS, scoliosis, hedgehog and my designs have come :)
So since I've been writing about the fact I have Aspergers, people seem to be making all sorts of bizarre assumptions about me.
Things like assuming I don't want to see people, or talk to people or go places... that I'm antisocial and don't like being around people at all... that I'm somehow different than I was...
Think it may be a common misunderstanding (and although I can't speak for everyone with AS), this is what I feel about the subject of assuming social stuff: Never assume anything - I find socializing more difficult than most yes, but I still need friends and other living things in my life besides my cat, my mum [love you though :)] and the spider currently residing in the corner of my living room above the piano!
Some days I may be feeling more confident and my anxiety will be slightly less, I will b more at ease and social stuff comes a bit easier; some days I will in excruciating pain from my back or exhausted from no sleep and then yes, my socializing skills won't be 'made up'. It's like wearing make-up to hide my lack of natural social skills, it takes effort to put on; but I can still enjoy it, especially if I feel I've managed to understand and/or be understood by someone; a connection.
Speaking of tiredness I only have been getting 2-3 hours sleep a night so I'm going to make this short! The only other thing I'll add today on this topic is that please, never assume I wouldn't want to do anything because of any illness I might have - I'd much rather have the option of joining in, (especially if I can prepare!) otherwise it just builds low self esteem by feeling invisible and rejected, which makes socializing even harder.
I know it's been a while since I've written, nothing new I wanted to share until now really; I'm in a potentially long process of referral to a scoliosis specialist about my back... for some reason it never got followed up as an adult, and it was last x-rayed when I was 15, it was 35 degrees then and I was 'skeletally mature' although I have grown another 2-3 inches in height since then and my curve has visually got quite a lot worse. I've been irritated by a crushing sensation in under my right ribs for the past few months - it's likely it's my scoliosis that is causing it, even if the sensation is purely muscular (although I have noticed when standing straight, my left ribcage does stick out quite a bit at the front, and you can't really see the right one :s)
On a positive note, I had a hedgehog in my garden tonight!!! :D my first hedgehog!! <3 It's soooo cute, I have to get some cat food (my cat doesn't eat cat food lol she's too posh! :P) to put out for it :) annnnd my vistaprint order has arrived!!! I have notebooks, a couple of cotton bags, some sticky notes, note pads and some pens printed with some of my trial designs :)
Anyway - I WILL get some sleep tonight... I hope... please!! :s
Things like assuming I don't want to see people, or talk to people or go places... that I'm antisocial and don't like being around people at all... that I'm somehow different than I was...
Think it may be a common misunderstanding (and although I can't speak for everyone with AS), this is what I feel about the subject of assuming social stuff: Never assume anything - I find socializing more difficult than most yes, but I still need friends and other living things in my life besides my cat, my mum [love you though :)] and the spider currently residing in the corner of my living room above the piano!
Some days I may be feeling more confident and my anxiety will be slightly less, I will b more at ease and social stuff comes a bit easier; some days I will in excruciating pain from my back or exhausted from no sleep and then yes, my socializing skills won't be 'made up'. It's like wearing make-up to hide my lack of natural social skills, it takes effort to put on; but I can still enjoy it, especially if I feel I've managed to understand and/or be understood by someone; a connection.
Speaking of tiredness I only have been getting 2-3 hours sleep a night so I'm going to make this short! The only other thing I'll add today on this topic is that please, never assume I wouldn't want to do anything because of any illness I might have - I'd much rather have the option of joining in, (especially if I can prepare!) otherwise it just builds low self esteem by feeling invisible and rejected, which makes socializing even harder.
I know it's been a while since I've written, nothing new I wanted to share until now really; I'm in a potentially long process of referral to a scoliosis specialist about my back... for some reason it never got followed up as an adult, and it was last x-rayed when I was 15, it was 35 degrees then and I was 'skeletally mature' although I have grown another 2-3 inches in height since then and my curve has visually got quite a lot worse. I've been irritated by a crushing sensation in under my right ribs for the past few months - it's likely it's my scoliosis that is causing it, even if the sensation is purely muscular (although I have noticed when standing straight, my left ribcage does stick out quite a bit at the front, and you can't really see the right one :s)
On a positive note, I had a hedgehog in my garden tonight!!! :D my first hedgehog!! <3 It's soooo cute, I have to get some cat food (my cat doesn't eat cat food lol she's too posh! :P) to put out for it :) annnnd my vistaprint order has arrived!!! I have notebooks, a couple of cotton bags, some sticky notes, note pads and some pens printed with some of my trial designs :)
Anyway - I WILL get some sleep tonight... I hope... please!! :s
Night all
X
7 April 2012
What to say / What NOT to say...
A very difficult question... especially for someone with Aspergers.
I've heard so many conflicting statements...
'If you can't say anything nice, don't say anything at all'
'I'm fed up of 'people' moaning about their problems instead of working on fixing them'
'Be yourself'
'It's OK to express how you're feeling'
'Be transparent - don't separate yourself into boxes and reveal different boxes to different people'
There doesn't seem to be any logical rule everyone agrees on! What do you reveal in what situation? To what degree? To whom? I'm pretty useless at lying. Hence my lack of communication to most people... people only seem to want to hear about lovely, positive, soul-lifting things... well my life isn't full of much of that kinda stuff; at least not right now... I still hold out hope that some sort of good will come from my life eventually.
But right now... no, I'm not 'ok' I still don't have a socially acceptable (and somewhat truthful) answer to: 'Hi, how are you?' Or even: 'So what do you do?'
As for me... I don't wish to compartmentalise.. quite frankly it's too confusing and messy. But equally I don't want to be prejudged and come face to face with any more prejudice and rejection as I already have done!
It's so complicated! I'd love to say - this is me; if you don't like it, leave me be. But I know no-one would be left! I know if everyone truly knew what was under the surface... ...anyways. Getting off-track. Something I'm very good at!
The more you reveal about yourself, strengths and weaknesses; the more vulnerable you become to people using you. The great ... what's the word? Paradox? don't think that's it... grr. Useless with words!!
What I am going to say:
Learning I have Aspergers was a massive revelation... but with an official diagnosis at least 18 months away - IF they decide it's worth funding - and no support available.... what do I do with it?
I have slightly more insight into what makes me anxious, but I have no tools to change it, and I'm still left with all the same problems as I had before... and as I'm trying to reduce my anxiety and 'be myself' more... I seem to be alienating the few people who are left in my life. It seems vastly unacceptable to society today for a young woman to be 'socially inadequate' (as I have been described) Which only makes it harder for a lonely, emotionally vulnerable 21 yr old girl with nothing 'nice' to say (with general chit-chat anyways) to socialise... (which by the way doesn't mean I don't want to have fun... I just find very different things fun! For instance some days I find a good dose of algebra far more relaxing than making Jewellery... and both FAR more fun than a cinema trip!! Equally, I love watching the Big Bang Theory and talking about cats...
I feel like.. (I might've said this before...) Men are from Mars... Women are from Venus and Aspies ... we're just from a different galaxy altogether... each on our own little planets but drawn together through difference.
Anyways my thoughts seem to be sucking me even further into a dark vacuum so I am going to shut up now and try and remember it's Easter; there is hope, I am loved and accepted; even if only by God! :)
Think I've fully exhausted the title topic! (and probably added too much too) So going to stop typing now!
I've heard so many conflicting statements...
'If you can't say anything nice, don't say anything at all'
'I'm fed up of 'people' moaning about their problems instead of working on fixing them'
'Be yourself'
'It's OK to express how you're feeling'
'Be transparent - don't separate yourself into boxes and reveal different boxes to different people'
There doesn't seem to be any logical rule everyone agrees on! What do you reveal in what situation? To what degree? To whom? I'm pretty useless at lying. Hence my lack of communication to most people... people only seem to want to hear about lovely, positive, soul-lifting things... well my life isn't full of much of that kinda stuff; at least not right now... I still hold out hope that some sort of good will come from my life eventually.
But right now... no, I'm not 'ok' I still don't have a socially acceptable (and somewhat truthful) answer to: 'Hi, how are you?' Or even: 'So what do you do?'
As for me... I don't wish to compartmentalise.. quite frankly it's too confusing and messy. But equally I don't want to be prejudged and come face to face with any more prejudice and rejection as I already have done!
It's so complicated! I'd love to say - this is me; if you don't like it, leave me be. But I know no-one would be left! I know if everyone truly knew what was under the surface... ...anyways. Getting off-track. Something I'm very good at!
The more you reveal about yourself, strengths and weaknesses; the more vulnerable you become to people using you. The great ... what's the word? Paradox? don't think that's it... grr. Useless with words!!
What I am going to say:
Learning I have Aspergers was a massive revelation... but with an official diagnosis at least 18 months away - IF they decide it's worth funding - and no support available.... what do I do with it?
I have slightly more insight into what makes me anxious, but I have no tools to change it, and I'm still left with all the same problems as I had before... and as I'm trying to reduce my anxiety and 'be myself' more... I seem to be alienating the few people who are left in my life. It seems vastly unacceptable to society today for a young woman to be 'socially inadequate' (as I have been described) Which only makes it harder for a lonely, emotionally vulnerable 21 yr old girl with nothing 'nice' to say (with general chit-chat anyways) to socialise... (which by the way doesn't mean I don't want to have fun... I just find very different things fun! For instance some days I find a good dose of algebra far more relaxing than making Jewellery... and both FAR more fun than a cinema trip!! Equally, I love watching the Big Bang Theory and talking about cats...
I feel like.. (I might've said this before...) Men are from Mars... Women are from Venus and Aspies ... we're just from a different galaxy altogether... each on our own little planets but drawn together through difference.
Anyways my thoughts seem to be sucking me even further into a dark vacuum so I am going to shut up now and try and remember it's Easter; there is hope, I am loved and accepted; even if only by God! :)
Think I've fully exhausted the title topic! (and probably added too much too) So going to stop typing now!
Night all
x
2 April 2012
World Autism Awareness Day...
I feel I should say something significant today. I didn’t
know whether to talk about growing up with my brother with ‘classic’ (ish!)
autism, about my recent realisation that I too, am autistic; or about living
life through an ‘Aspie’s’ eyes.
Truth is I’d like to talk about all of these things, but I
think the blog would be unendingly long! I would love to say something
inspiring and insightful, but my brain has had a tough day. (I went to get my
haircut; a whole host of sensory overload that send my brain into a tizz and
makes me feel, frankly; nauseous. But that is another post.) Also, I don't really have anything inspiring to say! I just have me and my life.
For someone who may seem to appear (or not, I can’t tell!)
so ‘normal’ on the outside, it may seem very odd to hear that I have Aspergers.
It’s not that I have ‘mild’ Aspergers, I simply don’t have commonly associated
learning difficulties and have grown up with an autistic brother with those difficulties; I had a very
clear example of ‘not normal’, which meant ‘not acceptable’. And so my Apergers
became very hidden. All those typically autistic things like flapping hands or
rocking? I learnt before I could do
those things that they weren’t acceptable. I would just clam up, or cry.
Primary school was very hard; completely bewildering. I
managed to make a couple of friends though toward the end of it, and this
continued into Secondary school. I had a stable small social group, who I felt
relatively ok with. I was always better at 1-1 communication though. (Groups… I
just don’t know how to navigate, so I stay quiet most of the time.) I did very
well academically; there was no reason for people in responsibility to think
there was something ‘wrong’ with me.
In 6th form, when life in general was getting
more complicated, and my little group kind of split and went different ways…
hung out with different people… I was petrified of these different people!!! …
change… hate it especially when I
can’t control it!!
All that, plus the death of my grandfather, plus
consequently dropping out of school… was the end of life as I knew it.
Over the past 5 ½ years it has become massively apparent (to
the health profession anyways) that I am not ‘normal’. But what it was… I still
don’t think everyone agrees. I was given the incredibly unhelpful
label of borderline personality disorder. Not only unhelpful because there’s a
TON of stigma attached to that diagnosis; but unhelpful because the talking treatments
they tried never got near to the root cause of my problems, simply because they
were looking in wrong places and the basic lack of communication skills needed
in talking therapies that I wasn’t even aware
I didn’t possess. (One place actually directly told me I had the social skills, I just wasn’t using them!)
I heard it put like this – working with a person with
Autism/Aspergers is like working with a different raw material.
I go one further, because I like analogies.. It’s like using
tools to hammer gold into shape, when in fact you’ve got stainless steel. Or
try this – It’s like looking for a programming fault in a .exe when you’ve
actually got a .dmg … pick which ever picture you like; our minds just work
differently!
In some circumstances it can be incredibly disabling, but (I
am told) that with the right support in the right circumstances we can do well.
On a faith note for today; I know, wherever you go, be it mentally or physically; God NEVER lets
go. I know that with probably more depth than most people seem to. Trust me; if
you ask him in, he’s already at your hearts’ door waiting to embrace you. I
wish I could say I can show the fruit of leaning on God for strength and peace
and everything; but I’m still learning to lean on him, so far I’ve only leaned
enough to (just about) stay alive. I’m trusting the more I know God, walk with
him, the more I will be able to ‘live life to the full’ not just simply exist.
So back in a full circle, happy World Autism Awareness Day everyone!
Please don’t judge someone; whatever their label, be it Aspie, ASD, BPD, Depression, Anxiety; or blank. When you encounter someone you can’t figure out, or does things you don’t understand, please don’t judge them; but consider the possibility they might not think like you do. Also I should add, it’s ok to not think like you do! :)
Night All
X
Blog dedicated to my brother, one of the most gorgeous, loving people I have known and will ever know. J
31 March 2012
Unbelievably excited!
So I've been wanting to do this kinda of artwork for a while, but hadn't looked up the actual cost of materials, assuming it would be wayyyyy too high. But found somewhere in Cheltenham that sells the things I need, and it's very affordable. Cheaper than oil or watercolour painting, printmaking etc.
The magical art form I am SO excited about is: Chemigrams!!!! The 'founder' of the chemigram, Pierre Cordiér has done some amazing work, google him if you'd like to see some amazing stuff, he's also written a 'story' about the chemigram entitled: The Life and Times of Chemigram; or The Tale of Mr. Painting-Physics and Mrs. Photo-Chemistry’s Illicit Love.
Here is an artist with humour!
Just done tiny 1 -inch ish type trials today, going to try some bigger pieces tomorrow that take more time. Basically, you use light sensitive paper (silver halide coated paper) in plain daylight, and 2 chemicals: a developer which makes the paper go dark, and a 'fix' that makes the paper go white. You can also use a resist to create interesting effects.
Since they're only minuscule I'll post some up here tomorrow when I've scanned them.
Chemistry AND art :D I'm in my element! (no pun intended :P)
Anyways need sleep, must tell my brain to shut up and stop thinking. It doesn't seem to be able to fit it's thinking time into the schedule of needing to sleep at night!
On a side note the crohn's/colitis is being a nuisance again so even though my eyes are pretty much better, still physically feeling pretty nasty. Been a stressful few days too, but I've come through them safely :)
The magical art form I am SO excited about is: Chemigrams!!!! The 'founder' of the chemigram, Pierre Cordiér has done some amazing work, google him if you'd like to see some amazing stuff, he's also written a 'story' about the chemigram entitled: The Life and Times of Chemigram; or The Tale of Mr. Painting-Physics and Mrs. Photo-Chemistry’s Illicit Love.
Here is an artist with humour!
Just done tiny 1 -inch ish type trials today, going to try some bigger pieces tomorrow that take more time. Basically, you use light sensitive paper (silver halide coated paper) in plain daylight, and 2 chemicals: a developer which makes the paper go dark, and a 'fix' that makes the paper go white. You can also use a resist to create interesting effects.
Since they're only minuscule I'll post some up here tomorrow when I've scanned them.
Chemistry AND art :D I'm in my element! (no pun intended :P)
Anyways need sleep, must tell my brain to shut up and stop thinking. It doesn't seem to be able to fit it's thinking time into the schedule of needing to sleep at night!
On a side note the crohn's/colitis is being a nuisance again so even though my eyes are pretty much better, still physically feeling pretty nasty. Been a stressful few days too, but I've come through them safely :)
Night all
X
25 March 2012
Balance-Peace-AS-Senses-Silversmithing
It appears balance plays a big role in life. Just as being physically unbalanced means you fall into things and get hurt, being unbalanced in all sorts of ways can lead to pain too. What I was thinking more specifically with this is what to say/not say in various circumstances. It may be best for me to balance conversations with negative and positive things (if I can find any!) but this sits uncomfortably with me as I am very straight-forward. I'm tired of the facade of being 'ok'. Sometimes, in fact most of the time I'm not even meh, I'm feeling bad, very bad or horrendous!
I have therefore, in short, come to the conclusion that being me is ok, but maybe I need to have better balance in my life, learn to be peaceful and see good things outside my bad situation. Then I'll have something good to report even if I'm feeling crap. For me, this is where my faith comes in. I have had a real sense of God's peace recently, although for a few days when my eyes were at their worst I was in rather a lot of a tizz and lost 'sight' of things.
In AS, a persons senses are often (if not always) over-sensitive. Like say I'm in the car, I either have the window open (on a slow road only) or listen to music (that I can pick), or chat. I can't take all of those noises at once!! Or if it's raining, that throws everything out the window!! And loud sudden noises, (like over the road's dog barking) make me jump out of my skin!! And that's only part of the auditory sensitivity.. my visual sense is very heightened, bright colours/busy patterns really bother me, and don't get me started on touch/pain sensitivity!!
Often things other people find mildly irritating will make my head feel like it is going to explode. If I am trapped with the offensive noise/sight/smell/pain/whatever, I will sooner or later explode in some sort of way. In AS world they call it a 'meltdown'. It's not that I'm being difficult by being fussy about things, I just experience a lot of things very intensely compared to most people.
On the eyes front, they seem to be gradually getting better :) they're still not normal for me, but a LOT better than before :) Just been replaced with some nasty mouth ulcers, but I can cope with them!! And my alphabet stamps arrived yesterday :D (for silver) waiting for the cooksons order so I actually have some silver to make stuff out of; but really excited! And my cluster leader gave me a silversmithing book :) It looks realllly good, got loads of techniques I want to try, and things I've been wanting to know how to do and stuff :)
I have therefore, in short, come to the conclusion that being me is ok, but maybe I need to have better balance in my life, learn to be peaceful and see good things outside my bad situation. Then I'll have something good to report even if I'm feeling crap. For me, this is where my faith comes in. I have had a real sense of God's peace recently, although for a few days when my eyes were at their worst I was in rather a lot of a tizz and lost 'sight' of things.
In AS, a persons senses are often (if not always) over-sensitive. Like say I'm in the car, I either have the window open (on a slow road only) or listen to music (that I can pick), or chat. I can't take all of those noises at once!! Or if it's raining, that throws everything out the window!! And loud sudden noises, (like over the road's dog barking) make me jump out of my skin!! And that's only part of the auditory sensitivity.. my visual sense is very heightened, bright colours/busy patterns really bother me, and don't get me started on touch/pain sensitivity!!
Often things other people find mildly irritating will make my head feel like it is going to explode. If I am trapped with the offensive noise/sight/smell/pain/whatever, I will sooner or later explode in some sort of way. In AS world they call it a 'meltdown'. It's not that I'm being difficult by being fussy about things, I just experience a lot of things very intensely compared to most people.
On the eyes front, they seem to be gradually getting better :) they're still not normal for me, but a LOT better than before :) Just been replaced with some nasty mouth ulcers, but I can cope with them!! And my alphabet stamps arrived yesterday :D (for silver) waiting for the cooksons order so I actually have some silver to make stuff out of; but really excited! And my cluster leader gave me a silversmithing book :) It looks realllly good, got loads of techniques I want to try, and things I've been wanting to know how to do and stuff :)
:) :) :)
Anyways, trying to get used to daylight savings, so better go to sleep now-ish!
Night all
x
22 March 2012
Inspiring Quotes - turn around
Had my moan yesterday, now to shift into a different thinking space - here is a small collection of quotes I find inspiring:
- The future belongs to those who believe in the beauty of their dreams. – Eleanor Roosevelt
- The thing that is really hard and really amazing is giving up on being perfect and beginning the work of becoming yourself. – Anna Quindlen
- Happiness is not a goal; it is a by-product. – Eleanor Roosevelt
- If you’re going through hell, keep going. – Winston Churchill
- What the caterpillar calls a tragedy, the Master calls a butterfly. – Richard Bach
- Earth's crammed with heaven, And every common bush afire with God: But only he who sees takes off his shoes.- Elizabeth Barret Browning
- Do not be too timid and squeamish about your actions, all life is an experience. – Ralph Waldo Emerson
- We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot. - Eleanor Roosevelt
- I may not have gone where I intended to go, but I think I’ve ended up where I needed to be. – Douglas Adams
- Never grow a wishbone where your backbone ought to be. – Dorothy Parker
- You can’t be brave if you’ve only had wonderful things happen to you. – Mary Tyler Moore
- Nothing we learn in this world is ever wasted. – Eleanor Roosevelt
- With the new day comes new strength and new thoughts. – Eleanor Roosevelt
- Once we accept our limits, we go beyond them. - Albert Einstein
- Humans are amphibians - half spirit and half animal. As spirits they belong to the eternal world, but as animals they inhabit time. - CS Lewis
- Do not go where the path may lead, go instead where there is no path and leave a trail. - Ralph Waldo Emerson
- Aim at heaven and you will get earth thrown in. Aim at earth and you get neither. - CS Lewis
- Some people feel guilty about their anxieties and regard them as a defect of faith but they are afflictions, not sins. Like all afflictions, they are, if we can so take them, our share in the passion of Christ. - CS Lewis
- We all want progress, but if you're on the wrong road, progress means doing an about-turn and walking back to the right road; in that case, the man who turns back soonest is the most progressive. - CS Lewis
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