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rufusrufus

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Posts posted by rufusrufus


  1. These days I definitely feel I can let my "inner-Aspie" out a bit more, which I love. I've loved telling people that I've known for years "You know how we always knew there was something weird with me?.... Yeah, it's Asperger's". The dawning of realisation on people's faces is quite hilarious :) And then they seem to want to ask questions, which is brilliant. :)

    I'm really glad your GP is being supportive, Tsukimi, but if it all goes wrong, there's a list on Rudy Simone's website of private practitioners who will assess / diagnose women with AS. One near me quoted £300 for the assessment and report, I don't know if spending that much is an option for you, and hopefully not necessary, but it's a possibility. Oh, and I went through "Aspergirls" underlining everything I related to. It was about every other line! Then I gave it to my parents to read, so they could see where I was coming from. My Dad was quite hilarious, everything he read, he said "Well that's me, and I don't have Asperger's, so neither does Ruth!" - umm....... actually Dad..... you clearly do! :) Bless him!

    Hi Anxious - I've never tried being in touch with an MP - I'm glad it did the trick for you though... I do like the idea of having a genie :)


  2. I love languages! I used to dream in French occasionally, although that was 10 years ago, and my brain very effectively dumps what isn't in current use. I've also learned Farsi to superficial conversational level, and can read and write the script. I love grammar.

     

    Sorry, I'm probably not much help with the catastrophising, since I don't have AS, but I just had to join in the language love-fest. Of course you know that, rationally, a Spanish course will not make you forgo your benefits, but that's not what you're saying, really, is it? Hope it goes well for you, coz like you said, learning rocks :)

     

    I generally drop a few French words into a sentence here and there because they come to mind more easily than the English, and a few German words too, but I only did that for 2 years, whereas both my parents speak French so I've been immersed in it for my whole life. Farsi sounds awesome! My parents also used to speak a bit of Arabic as they lived in North Africa for a while. I love how Arabic looks on the page. I love grammar too, though my own use of it can be a little indiosyncratic at times. As far as I'm concerned, if you know the rules, you're allowed to break them, like in music theory, but it's when people cl'early, dont' no waht their doing; that annoy's me ;) ;) ;)

     

    Can I just say that this might be your first thread, but I always find your posts lovely?

     

    Thank-you, that's really sweet of you to say. I honestly never know when I'm saying something worthwhile, or just regurgitating my thoughts onto the computer screen, much to everyone else's annoyance!

     

    Well, anyway, I had a good sob last night, and this morning I phoned the DLA people and told them that on my original claim form, I put that AS was suspected, and that now it's confirmed. She asked if I want them to re-assess my case, so I said that nothing's got any better, I still suffer with depression and anxiety, but in the interests of open-ness and honesty, I should let them know. She said "We don't award on what's "wrong" with someone, but what their needs are", so I said nothing's changed, but even if they re-assessed me, I don't think they'd give me any more money, so, and I quote "ummm...errrrrr....." and she kind of said "ok, thanks then". And that was that. So I don't know what's going to happen, hopefully nothing, but I was worried that when I reapply next year and I say I was diagnosed in August, that they get snotty and say "well you should have told us then".

    And I decided that my support worker's leaving at the end of the week, but before he goes, he can phone the Job Centre for me and ask the questions I have. One phone call has drained me enough for one day!! :)

    So now I'm considering all things Spanish, and whether she remembered to give us any homework, or whether she did and I've forgotten, etc etc. I have a nice shiny file, and some notes I can write up and play with - happy days :)


  3. I've never started a thread before - ooer.

    I started a Spanish course today. The teacher seems really lovely. She noticed that I'd written on the induction form that I have AS and asked me what she could do to help me. I told her I might get overwhelmed and just duck out for a couple of minutes, and she was fine with it. I'm really not good with the hubbub of people chattering, although it wasn't as bad as it could have been, because during the activities people were all chatting about the same thing, rather than endless mayhem of small talk / anything goes. I still really struggled with the "go around the room and ask people whatever" which we did as an ice breaker, and then engaging with people, asking them questions in Spanish. Actually, it was quite excruciating, but I knew it was going to be, that's why I'm there, to challenge myself, so I tried to just get on with it. I hope I can stick with it because I love learning, and I want to be a vaguely functioning member of society at some point, and I think that engaging in this sort of thing will hopefully help towards that! To be honest, the actual language learning is the easiest bit, it's all the social stuff that comes with it. But I love languages, and the whole point of language is to communicate with other peple!

    However, tonight I'm having a bit of a blip, I think because I'm a bit overwhelmed, and I'm terrified that when my Job Centre woman knows I'm doing this course, she's going to assume that really quickly I'm going to be ready to go back to work, and I'm going to lose my benefits (ESA, DLA, I also have depression and anxiety), and my home, and end up destitute! Yes, I catastrophise a lot! :s Wrapped up in all that is also the fear of change, I guess. I'm really trying to be rational and employ my CBT techniques but I thought posting here might ease the panic a little bit, I'm sorry if I'm just waffling on.

    Eeek!


  4. My support worker is absolutely great. He's worth his weight in gold, because I can actually be open with him and get the support I need. 9 times out of 10 with support services I've been involved with, I don't get as much out of them as maybe I could, because I just can't get the words out to show I'm struggling, I'm so used to putting a brave face on everything and trying to appear strong. I just click with him and he instinctively knows what's really going on. The only problem is (well, 2 problems really) he's leaving for a new job at the end of this week, and in any case, it was only a 6 month long service, and my time's up at the end of September anyway :( Still, I feel really lucky to have had his support for this long, he's helped me a lot!


  5. Ahhh. Feels nice doesn't it? We're not so different, not so alone after all. There was so much pain. So many awful memories. Shame. Hiding away so that the world doesn't discover you're crazy.....so much exhaustion, worry, fear, just pushing yourself all the time to be perfect, to get it right this time. Not to disapoint anymore, not to be the odd one out anymore. Such a busy mind, constantly learning, and yet, always the strange one....never liked for long....always failing, unable to keep the pace required...the only sanctuary being silence, darkness, safe when alone, hiding. Not anymore. Not for me. And not for you Rufusrufus. And hopefully, not much longer for Tsukimi.

    We never were mad you know!!! Look at us now! We're all virtually saying the same thing. That means that what we have is something real and certainly not our fault! Now, we are free. It's okay that we're who we are. It's okay that we've messed things up before. It's okay if we mess things up again. I'm so glad i found this place!

    :)

     

    Exactly :) I really identify with the whole "pretending to be normal" thing, and it really is exhausting. It's only as I've got a bit older and started to know myself a bit better that I realised why I found small talk so exhausting, going new places so excruciating etc. In fact, despite my having a psychology degree, it wasn't until I read Rudy Simone's "Aspergirls" that I had the language to describe what I experience. Quite frankly, I love being Aspie :) I feel so much more comfortable in my own skin now - it's still a process, I still suffer with depression, anxiety, low self-esteem and self-confidence, have a propensity for eating disorders etc, but seeing it all in an Aspie light is helping me process it all a bit better. It's no wonder I'm depressed if I'm constantly exhausted, baffled, disgusted etc, by what I'm "expected" to be by the NT world. It's that constant feeling of being a square peg not being able to fit into that round hole, no matter how hard you try, and feeling guilty, like a failure, because of it. Now I'm aware that I can "play the NT game" when I have to, but be myself the rest of the time, I'm doing a bit better :)


  6. I'm really sorry to hear you are feeling like this. I really struggle without a routine. In my last big depression I made a long list of just "things I could do" to pass the time. These ranged from productive things, like housework, going for a walk (though I was struggling to leave the house at the time), reading etc, all the way through to maladaptive coping strategies, like binge-eating / drinking (NB: I'm not saying these are good things to do, but writing them down on paper helped me acknowledge that yes, sometimes I do want to do these things, or not want to, but when all else fails, I don't know what else to do). This list is still on my fridge and I refer to it when I feel a bit lost. Other items include painting my nails (not that I care about them really, but it kills some time!), reading, cooking, having a bath / shower, doing a crossword etc.

    From this, I then began to look at things I hope to achieve every day, every week, every month etc (though a month is a bit too daunting for me to cope with usually!). Again, I made lists and ticked things off as I did them. Some days, the best I can manage is getting out of bed and brushing my teeth. So that's my status quo, but at the moment I'm achieving much more than that, but so long as I only expect myself to get up and brush my teeth, anything else is a bonus! Now I have a weekly tick chart entitled "Today I can be proud of my self because I have...." - some of the things are: controlling my eating / drinking / not drinking at all, self-care, showering, reading for 10mins, playing my flute or guitar for 10mins, eating my 5 a day, leaving the house, socialising, exercising.... I don't reliably do them all every day, but when I am, I know it'll be time to make a new chart. I'm all about visual reminders of what I've done :)

     

    When I had some CBT recently, the guy had me make lists of things I do for pleasure, things which I find mediumly difficult, and things I really struggle with, and I had to try to do something off the medium list each week. It didn't work quite so well for me though because even though I really struggle with making phone calls, for example, often I will force myself too, even though it makes me miserable and anxious. He didn't seem to understand that, it was more "well you did it, so what's the problem?" - he didn't seem to recognise the emotional toll it took on me to do it, or the fact that if I just didn't do it, I'd feel horrendously guilty, so I was stuck between a rock and a hard place :s

     

    Anyway, I find that starting with a general list, then shaping that list into a structured timetable works pretty well for me. And laminating things to stick on the fridge, I love doing that, too :)

    I also get email reminders from a thing called OhLife, which prompt me to write a diary entry each day, and I chronicle what I've achieved. In each email it says "Remember this? A month / week ago, you wrote..." and I can see how I was doing then compared to now.

    Good luck! :)


  7. Do you know what? It's sooooooo awesome for me, sat here reading this thread, because it's pretty much summed up aaaaall the conerns, worries, thoughts that I had before / during / after my diagnosis! I can't even pick out bits to agree with, because it's ALL me! :) This is what I really love about being diagnosed: just how uncanny it is that there are all these people who totally "get" me, when for 26 years I have felt so totally alone, crazy, unlovable, un-unfathomable. Wahoo!!! :D

     

    Ha! A place full of people who hate to socialise and would neverwant to meet up. what a strange but welcome find!

    Merry, this totally made me laugh! :)

     

    Tsukimi: My diagnosis procedure really didn't take long, in the grand scale of things (unless you count the years it took me to finally decide to ask for a diagnosis!). I made a GP appointment in early July, went the next week, saw a truly horribly doctor who didn't know what AS was, so did his best to make me feel about 2" tall (and succeeded!). He did the referral, but my support worker also phoned the Asperger's Team, himself, and they said he could refer me, if the doctor wouldn't. They offered me an assessment date of August 1st, but I was going on holiday with my Mum and, although I tried, we couldn't re-arrange it, so I was diagnosed on August 23rd. The guy interviewed me for about 90mins, then phoned up my Mum and interviewed her, but to be honest, he told me at the end of my session that I had it, and that Mum just needed to corroborate what I'd said. He's coming back this Thursday to show me the report he's written, make sure there's no massive inaccuracies or anything, and to discuss a care plan. :)


  8. Hello :) Just caught up with this thread and thought I'd add this: when you first gave him your number you didn't have any evidence that he was bad news, I think it's natural to be flattered when someone chats you up, so I wouldn't feel too bad about it. Once you found out stuff about him that made him unsuitable for you, you backed off, you were polite about it and you protected yourself by not carrying on with him despite the warning signs. I think you had a lucky escape, yes, and hopefully his little stunt in the gym will mean he doesn't go back there and spoil it for you. If he does go back, you have the protection of staff, and it's great that your mum was on hand to pick you up when you felt shaken up, so you have protection away from the gym too. I have been in several horrendous relationships, because either I don't see the warning signs, or I see them and choose to ignore them, either through low self-esteem, or just poor judgement in general! I think you should give yourself credit for what you did well, although I know it's hard :)


  9. I used to sleep rolled up in the duvet, as close to the wall as possible, and I used to love sleeping in sleeping bags that I could burrow down in. Have you seen those sleep tunnel things you can get from Ikea? I'm not sure how they attach to the bed, but since I saw them a few years ago I've kind of wanted one, even though I'm supposed to be a grown up :whistle:


  10. Haha thanks. I do find making friends online easier, but I really want some friends I can meet up with more regularly, so the closer the better. I'm sure I'll figure something out. My parents have both been really supportive, and I think they're relieved that family life was difficult because of something no one can help rather than because they were bad parents. Neither of them are on the spectrum, but my mum has several traits. We think my grandma on her side might have been, but she's dead now, so it's just speculation.

    I'd love to find somewhere local that I could work with animals just to get me out, but all the local places atm require too much commitment (full days etc) so can't atm.

     

    And Special_talent123 thanks for the suggestion, but Bristol is about 2 hours away, so not exactly convenient.

     

    Have you tried googling online forums related to your interests? I've made some good friends from an online reptile-keeping forum, from when I used to keep lizards. There are often local enthusiast groups for all sorts of things, and there's at least one conversation topic you can all partake in, so it makes it a little bit easier I think! :)

    I'm glad your parents are supportive. I think my Mum felt bad for me because she's a teacher and felt she should have spotted my traits, but to be honest, I've got a degree in psychology and I only really began to see it in myself in the last few years! :) I think there are people on both sides of my family who had it, but again, most have died now, so we'll never know for sure.

    Volunteering with animals would be my ideal passtime too, but nothing's turned up yet. I'm thinking about contacting the Cinnamon Trust - they put you in touch with local people who need their dogs walking. I'd be fine with the dogs, but it's the meeting different people I'm not sure I could handle at the moment. Fingers crossed both of us find something, eh? :)


  11. I struggle to sleep because my brain won't switch off. It's always been like this. Usually, I find that listening to an audio book helps, because I think in words, and the brain struggles to process more than one verbal input at a time. Therefore if I can keep reminding myself to focus on the audiobook instead of my thoughts, it generally helps. When I'm really stressed though, my own "thoughts" drown out the audiobook and I have to, for example, count proper nouns, or verbs, or adjectives, as they are spoken on the CD, in order to keep me focussed on it (levels of processing etc). I put "thoughts" in quotation marks because a lot of the time I'm not consciously thinking about stuff. Thoughts, ideas, conversations, narrations sort of occur to me as I'm lying there, I don't really feel in control, which can be distressing if it's stuff I don't want to dwell upon. It might be bad memories that have actually happened to me, or just bad ideas, scenarios that seem to have nothing to do with my life, but that upset me. Or it might be totally benign stuff, which holds no emotional meaning for me, like considering the layout of Anglo-Saxon villages (seriously, that's something that once came to mind! Don't ask me why, I hadn't seen anything on tv about it or anything, not that I'd consciously picked up on anyway!). It's like watching a documentary in my head, or listening to a conversation, but I don't actually hear voices in the conventional sense. I think a lot of these "thoughts" are actually "leftover" stimuli from my day to day life that my brain can't process until everything else has stopped and is quiet.

    Anyway, I don't know if any of what I've written can give any insight whatsoever into what your son experiences, or whether it's just Ruthy's brain being a bit bonkers :D

    I know several people with children on the spectrum who have had varying levels of success with Melatonin, which I believe (though could be wrong) is available on prescription from a GP. I don't like to jump in and suggest drugs, but I also know that lack of sleep can make the whole family very unhappy, and sometimes needs must!!

    Other things I've tried include: not eating or drinking 3 hours before bed, turning off all electrical equipment at least an hour before bedtime, not actually going to bed until my eyelids are drooping, even if I'm really tired, incorporating more high protein foods into my diet (turkey and tomatoes contain something which promotes good sleep apparently), meditation... Varying levels of success with all of these, to be honest :)

    Anyway, I'm going to stop rambling now :)


  12. thanks

     

    Fairly similar really. Glad to have an explanation and for my parents to know I wasn't being difficult on purpose. On the other hand, always going to struggle etc. I think I'd be happier about it if there were any local groups or whatever, but the nearest groups are over half an hour away, so adding an hour of travel to new places and new people makes them too much.

     

    Want to make new friends though. Bored of being lonely.

     

    I find it easier to make friends online, I still count that as socialising and give myself a pat on the back for it :) There's always the possibility of meeting up with online friends in person, but as there's no obligation to, I feel less pressure, but interacting via the computer has been helping me stave off the loneliness recently. I also really know how you feel about the travel thing, I'm exactly the same. There's a pony sanctuary near Liverpool that I went to volunteer at a while ago, and I really enjoyed it, but it takes 1hr 20mins either way to get there, and I just can't cope with that, AND actually doing an activity in between :(

    I'm not sure my Dad really believes in my diagnosis, which makes me a bit sad. I think it's because I'm pretty sure he's Aspie too, but he sees himself as quirky and eccentric, but feels an official diagnosis would mean there's something "wrong" with him. Therefore he doesn't want to see it in me, either. My mum's supportive though. I really recommend any book by Rudy Simone, by the way. I love reading her stuff, it's as though she's writing just about me!

    I hope you make some friends here, we are awesome :P:)


  13. Thanks. I sometimes wonder what my friends think of me. But I suppose they must like me if they keep seeing me and want to talk to me?,

     

    Exactly :) Have you ever asked your friends if they are bothered by your talking? You might find that actually they just really enjoy listening to you as you have interesting stuff to say! I do think that practice helps with the whole social conversation thing. I don't enjoy it but I force myself to do it on a fairly regular basis, just to keep my hand in. In any case, your true friends won't mind anyway, because there's more to a person that just what they say :)


  14. Hi! I'm Ruth, I'm 26 and I'm in Liverpool, but I've recently been diagnosed too. How do you feel about your diagnosis? I was relieved to have it, finally, but after the initial euphoria I felt really sorry for the child-version of me who had to go through a horrible time because no-one understood me and I had a good cry about it. On the whole, I'm really happy now though :) Welcome to the forum :)


  15. The previous night's TV usually seems to be a good one, except I don't watch much TV. It cracks me up when someone says "Did you watch Big Brother last night?" and you say "No, did you?" and they say "No..." - why bring it up then?!?! :D I guess they're just trying to find common ground and get a conversation going. Actually, often when I start that conversation, if there's more than one other person in the room, everyone joins in saying "Yeah, I watched that, what did you think of Jimmy's dress?" or something, and boom, just like that, I'm zoned out of the conversation and actually, I realise I don't give a toss about Jimmy's dress and wonder why I bothered trying anyway! :)

     

    "Have you been up to much this week?" seems to be a good one too, but it's a bit rubbish if you see someone every day :P


  16. The girls did discuss social circles at school and outside of it realised how much of bridge gap of difference between their lives and mine it hurt bit winded me as how much " missed out" due to AS/ depression and only starting make tracks with social situations now I'll never be able get my teen years back feel " robbed" stolen due to AS gone in a whizz a flash scary :( talking about friends boy friends such difficult topics As can't relate / share! Nothing to give makes me feel upset sad depressed etc

     

    I felt something similar after the initial euphoria of my diagnosis - I can't re-write my own history, and it could have been so different with an earlier diagnosis, however, I try to reframe it in my mind as "At least I was dianosed at 26, not 36, 46 or 56!" You are starting to write yourself a new future every day you do something positive, like this social event, which is pretty awe-inspiring, in my opinion :)


  17. Hi there! I certainly struggle with this too, always have done. I had a massive meltdown when I started uni, I remember being so frustrated talking to my Mum about it on the phone, through gritted teeth hissing "I DON'T CARE HOW MANY BROTHERS OR SISTERS THEY HAVE, I DON'T CARE WHAT A LEVELS THEY DID, I DON'T CARE WHAT COURSE THEY'RE ON NOW, WHY DO I HAVE TO ASK THESE QUESTIONS?!?!?!" :D I can laugh about it now but it was absolutely excruciating at the time, and actually, I still find myself in these situations now, but I don't get quite as stressed as I used to, well, not on the good days anyway!

    For me, I like the idea that I'm playing the neurotypical "game". By acknowledging that I am wilfully play-acting, and that I only have to do it for an hour / however long,at a time, and that soon I can go home and properly relax, I find it much easier to talk to people. Knowing that I only have to do it at certain times is quite liberating for me.

    Personally, I much prefer having random conversations with people, like asking "if you were a slice of toast, what topping would you want on you?". Some people go for these, other people don't, and yes, I feel stupid when they don't :( But sometimes it pays off and you end up having some pretty cool conversations. I prefer to do this is situations where I am not faced with seeing my conversation partner again, so it probably wouldn't be my opening gambit for say, a work colleague, but I sometimes go on these Walk For Health things in Liverpool and chances are I won't see the people again, or I can just avoid them by not going again if it goes horribly wrong, so I'm finding it a good place to try out my conversational skills :)

    Personally, I'd rather sit in silence than engage in the "Nice day, isn't it?" conversations, but I know that sometimes I need to be in the NT world, so I'll play along with their funny ways when I have to, and when I feel able.

    I have no idea if anything I've written is helpful or even interesting, so I'll hush now :)


  18. I'm so sorry I missed your updates until now, but I'm so pleased for you that it went well - yay!!! I hope you can have a chilled out day today, enjoying leftover party food (that's what I'd be doing, anyway!). This is just an idea, and might be daft, but I use visual cues / reminders of good things I've done, otherwise I just forget about them and don't give them the credit they deserve. I remember the negative stuff without any reminders though! :) Sometimes I write myself a note saying "I did this........ and I feel........ about it" and stick it on the fridge, or maybe use a picture or something? For me it proves to me that I did something good :) Well done you!! I love that you're planning for next time too :)

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