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Hi all! I am currently conducting my Master's dissertation on the University Experience for Students with Asperger's Syndrome If you have Asperger's syndrome and would be happy to participate in a 1 hour interview/discussion face-to-face, via phone or Skype to discuss your experiences then please get in touch with me on firstname.lastname@example.org. If you would like more information about the study then please do email me! Thank you! Rhian
The Short Version I feel I have to take a massive step away from talking on the forum, and potentially forever, right now I have to view it as forever because otherwise I remain trapped in a sort of no-man’s land. I am having to compromise myself more and more as each day passes and despite enjoying certain aspects of talking on the forum boards, I cannot do that any longer as it is not healthy and I cannot live with this conflict all the time. I regret this decision but I feel I have no choice, this is based on many factors and not one-off incidents and this is not a rash decision, to walk away from the only AS community I have ever known. I have enjoyed being a member of this forum and the times spent on here just as much as there have been hard times. I am grateful to the people who have either given me great advice, or spoken to me in PM and also for the people who have contacted me to thank me for my input. I would like to continue that contact in PM Regards Darkshine The Epic Version Of course there is an epic version, those of you who know me might smile or laugh at me now for doing this, but you know this is who I am and I have had this file containing the following words sitting on my computer for some time now (the 17th of December as it happens). I have been thinking of leaving for much longer than that, almost as long as my membership on here, because there have been very serious questions on my mind and I could not settle them, but I had to try and I have done so consistently for a year and a half. This is not just the issues I have raised over the past week or so, although they are vital to me and a big part of this and my sense of self, this is not just about that, its about hope, I hoped for something more, something different and I am afraid I cannot settle the questions and issues I have, despite my continued and various efforts over the last 18 months. I have informed my friends a while back that I have been thinking of leaving the forum boards, I have told them I am winding down and as a process they know I have found that difficult, so to them this will not be a surprise. I feel now is the time to bring this process to an end for although on some levels I am filled with the deepest regret on so many levels about this decision, on other levels dragging it out is not helping me and I see this as a positive, realistic and appropriate decision. I’ve been a member of this forum for just shy of 2 years and you get to have feelings for a place and people in that amount of time, my experiences on here have been varied and I have had a deep affection to this place and the people here. I remember the day I arrived, asking if it was 'ok' if I “posted a post”, asking if I could, because I was not sure whether I would be accepted. I was angry with my diagnosis and myself, seeking to find my identity, I’ve been lost, confused, upset and depressed and I’ve poured myself out here, I’ve shared myself as much as I could and as much as I can, and I've come a long way since then due to the people on this forum and my own efforts, but there are lines everywhere and I cannot live in a cage, I cannot be confined behind bars, not on here and not in my life. I have felt at times that this forum and some of the people on it have really helped me out, but then, until fairly recently, I never really accounted for how much work I put into things myself either to start to change my own life, and how much I have tried to give to others on here. People have given me some really good advice from time to time when I have sought it, really shared themselves with me and everyone else and I am and have been grateful for that, I’ve shared fun times and bad times, I’ve shared a lot of my life and my experiences, my pain and I’ve shared yours, but always with limits, always with lines on the forum – but not in PM and the contrast is so obvious to me, the value of my conversations in PM make the distinction so apparent and I cannot ignore that. Some of you are still here and I see you everyday, or once in a while, some stay behind the scenes and you talk to me and send me messages that make me smile and even cry sometimes, you light up my mind and make me think, ask for my advice and give me advice. Other people I only see out here on the boards and I value and enjoy many of those interactions too, and some people are long gone from here and I have been asking myself why for a long time, although some have told me. Almost exactly a year ago I was coming out of a very bad medication change, I wanted to end my life, a fairly short life to end at 31 but not as short as others. And I decided not to, I decided to fight, and so began a battle for my life, typical me really, turning everything into a black and white all or nothing war. Part of that fight was a decision to stick around on here, and it hasn’t been easy, but all a part of the battle, all part of the fight in my life that is me and who I am, and I owed it to myself to do that and to know that I gave it my best shot. A fight against the darkness that so often crowds around me and sucks me under and I try to give away the light to anyone I can just to be able to see it in my life, to feel there is a purpose to my life. And I see that there are many shades of grey between black and white and light and dark, but sometimes on here there are not those shades of grey at all. Over the course of the last twelve months I have realised that not everything needs to be a battle, I exist in the world between dark and light in many ways, for it is part of me and always will be. I have a suicide note on my computer – not because I am going to kill myself – it is incomplete and will stay that way. I keep it to remind myself to never ever forget how that feels, to want to die, to plan it, to say goodbye, and it reminds me to never be afraid of sharing that pain with others, it reminds me to be open to, and experience things painful and joyful and everything in between, and to always be true to ourselves and open to all our experiences and not just pick and choose the ones we like. And as I find more light in my life I realise that the dark is me too, and all sorts of greys in between, but I do not fear it, I do not live in fear of that darkness that I know is so powerful. I would like to remain in contact with those of you who share yourselves with me in so many ways and bring such value to my days when you walk past and give me a shout from time to time in PM's, and so for a while I would like to remain on here in that way, for your messages and friendship's hold great meaning to me. To everyone else on these forum boards, I bid you good day - this has been a very difficult decision to make, but I feel I have no choice, I have enjoyed the interactions but I have to do what feels right for me. Darkshine I have another file sitting on my computer that is a little more my style - to those who know me a little better, it might be more fitting - and I will end on that note because it is the true me, unorthodox, unconventional, a bit odd, and as a mate on here tells me all too often (Ben lol) "way too deep", but for some reason I have this urge inside me that I want people to understand me and who I am - and so to feel true to myself I am allowing myself this additional rambling because it just feels right and I haven’t really rambled for a long time have I? And yeah Ben, its way too deep In the land of Darkshine The land of Darkshine is a hostile place at a quick glance, that first look will show something, but there’s all manner of things to see, you could see any of it, just know that what you see is but a small fragment of the story. If you are willing, let me take you on a little tour and I will try to explain. The land of Darkshine is desolate and bare, it’s painful and scary, deep and dark, but within all that there is a light side, with humour and fun. But the land can be an angry place for me to live in, violent and destructive, harmful and hazardous, it can poison with its toxicity and strangle and choke with its tangled vines of beliefs. There’s crooked, sharp, rocky peaks, deep chasms and pits of despair, forests of loneliness and rivers and seas to drown in. Monsters roam freely here, disturbing and infecting me with their evil twisted logic, their venomous reasoning, their aggressive torturing, and I exist in a cage and they surround me, they taunt me, punish me, hate me, love me, protect me and harm me. I stare through the bars of my cage at them, and I stare at the bars themselves, they are black, cold, hard, metal. Very solid and very real. Sometimes part of me can walk amongst the monsters, walk through the land, and it’s a sad pitiable place moulded from my life, my experiences, my pain, my agony. It is filled with mistrust and rage, a bitter resentment darkens the sky and the clouds lay heavy with a thick gloom of hopelessness, sorrow and futility. I sigh, and it is hard to fill my lungs here, the air is glutinous and thick, it coagulates in my bloodstream and suffocates me as a sense of anguish floods into my very being. I look back on my life and my heart aches painfully, it breaks apart and fractures as I grieve for what I have lost, I’m genuinely acutely distressed at what I’ve given away or avoided, at the years that have slipped by me and I feel ashamed that I ran away and got lost in this place, that I let myself be caged, that I caged myself away. And I have tried to mend the broken pieces of my life, and I’m trying to create a new life, but this land is unforgiving and the monsters rule on high with their currency of conflict, battles, fights and domination. I lift my head and try to see, it’s difficult, the darkness is so dense, so impenetrable, and I think I see indistinct shapes shifting within it, but they indecipherable and unclear. There’s a sense of vengeful menace lurking there and I do not wish to walk too close, I don’t know if I want to see what lies in that blackness any more, for I already know what it is and I’ve seen those monsters enough in my life. The atmosphere here in my landscape is intense, you could cut it with a knife and suspicion reigns supreme, I think they won’t let me go, the monsters won’t let me go!! I have a profound sense of loss and they have no sympathy, no empathy, just a malignant, vile, foul heartlessness and a pernicious hatred, they are abhorrent, and I loathe them, they repulse me with their aversion of letting me go. I feel a pervasive essence all around me and my perception sharpens and evolves as I change grow progress advance and develop, as I strive to keep moving forwards, I try not to look back, I want to escape, to be free, but they won’t let me go!! In the land of Darkshine there’s a light side of things, and as I try to approach it I am blinded by it, I cannot see and I am afraid, so I run for cover of darkness again and again, and the monsters spit on me, and I cower beneath their fury, I tremble at their uncontrolled rage, they grab me and hold me, twisting me, hurting me, and I cry for forgiveness, I repent for stepping out into the light as the darkness embraces me once more. But I squint in the brightness again and again, and it hurts so much that it burns into my eyes, and for the first time I begin to see. I shade my eyes and slowly I begin to look around me, I begin to see, and I start to walk, stumbling at first for I don’t know how to walk in this place, this new landscape and I take step after step, I fall down and I crawl, pick myself up and try again and again and again. Because I am not just “Darkshine” I am a real person, with a real life and real thoughts and real feelings and I am not fixed and static, I am developing and changing, AS doesn’t stop that, the darkness doesn’t prevent it, maybe some will have seen me grow and find something in that in their own lives, see that I am walking out of my own cage into my own freedom - how is that possible in a place where 'real life' is often seen as a separate concept? And as I turn and look back one last time, I do mourn what I leave behind, I try to take it with me, I see people in my mind in cages all screaming and it hurts my ears and it rips my heart apart because I cannot free them. Some of them are my younger selves, me as a kid, as a teenager, the me entering my young adult years, and some are other people who do not even see that they are caged and I cannot take them with me and I grieve for that too, I stand undecided, unsure, uncertain as I am pulled in pieces internally, for I have my own view on things, rightly or wrongly I have my own views, and I cannot stand here any longer looking around. I have to walk away.
My SPD and OCD affect my life in so many different ways, half the time I can’t work out the difference between them. They coincide with each other all the time. I sometimes wonder that if OCD is tackled then the chances are my SPD would only recreate new OCD traits in a different form. Food is one of the hardest subjects for my SPD. I am vegetarian because of my SPD, it took time but eventually in McDonalds, I kept trying the burgers, and slowly over time I got more and more uncomfortable with the feeling of the texture, focusing on the texture made me think of cows, and well you can guess the rest, >.<. My SPD can make me very picky with foods, it annoys mum something terrible, and me, but I can’t help it. Most fruit I cannot stand, for example I find bananas, plums, grapes and oranges too fleshy, pears to be too grainy, raspberries too hairy, pomegranates, most melons, kiwi and strawberries to be too bitter. With vegetables if I see a brown mark on them then I cannot eat them. Mushrooms look a lot like fleshy overgrowths and some can really smell bad. I hate it, it makes choices of what to eat extremely few, I have a very small choice of foods, >.<. When it comes to food, it has to look right, smell right, feel right on my tongue, and taste right, if it doesn’t pass all of that, I am unable to eat it. I have tried apples, they are reasonable, the only problem is that it is difficult to get used to the fact that it changes colour so quickly. I have also tried watermelon, that is a little better, I have gotten used swallowing the seeds along with it, and the fleshiness of it is not too bad, the look of it does kind of remind me of steak though, which is disconcerting since I am vegetarian. I have tried smoothies but I have to gulp it down as I don’t like the feeling of the fruit bits on my tongue. Tomatoes by themselves are very bitter. Food is an extremely difficult subject due to my SPD, argh, it’s annoying, >.<. It is hard for everyone around me, including myself to deal with, but it is part of my SPD. That I can’t run away from. I want to try recipes to try other foods other than, tomato soup, soft rolls, breakfast muffins, pasta and pizza, but the problem is our kitchen is so very small and chaotic, making it claustrophobic, that it can be draining cooking in there, >.<. I feel I need to add a lot of spices to most dishes to increase the flavour of the foods, which also includes breakfast muffins. There have been several occasions in my past when I was much younger there was a dinner put in front of me to eat in amongst other children, the same happened once during primary school. I just stared at it and tears started to well as I knew I couldn’t eat it, but I didn’t want to make the situation awkward, as that is often the case if you can’t eat the food. It was horrible when I was asked to eat the food prepared for me but I couldn’t eat it, I didn’t want to be ungrateful at all, but I had no control over it. I also remember when I was younger and used to eat meals that my Oma (grandma in German) prepared; I had to eat them on separate plates. That was a clear sign of SPD, but mum and I didn’t know it at the time. What gets me the most is that I want to eat healthily but my SPD is preventing me. All I can do is take vitamins for vegetarians. That is not all. Being sensitive to touch is another major difficulty to my SPD, I get a tingly uncomfortable feeling whenever someone touches my arms and I cannot shake people’s hands. The smell of metal in my hands from coins, door handles, and such creates a real irony smell in my hands which is irritating, thankfully I have found a strategy to tackle this and light touch. If someone was to accidently touch me or I had that irony smell what I do is wash my hands, it gets rid of the feeling and the smell in one fell swoop. If I need to open a door, I tend to use my t-shirt to cover the door handle. If I travel I take a hand gel so that I can use that instead of washing my hands, it is also much quicker. That is why I am never sure if it is my OCD affecting me here or SPD. For everyday tasks I find cotton gloves have helped me. To me, it cuts off the direct contact to surfaces and makes it easier to do various tasks like making a cup of coffee. I can’t hold most knives, forks or spoons unless I wrap them in tissue. I even have my own selection of knives, forks, and spoons to combat the problem to some degree. At night I feel I must bring a torch out with me to check the floor as I hate to step on slugs, snails, and everything slimy or gooey. If I did I can hear the noise it makes, the feeling it creates and my mind will not settle until my shoes are cleaned. It is awful. I don’t know how else to tackle this other than with a torch. Sight is more focused on my OCD, I think, but to be honest, I have no idea. I am not worried over sleeping because of my eyes at all; it is not like that at all. What I have the problem with which is why this is perplexing me is that if I see the slightest stain or hair on any surface, be it mug, plate, bowl, sink, bath, anything that I could have direct contact with, I need to wash it to get rid of it. I cannot use it otherwise. That has got to be my OCD surely. I keep seeing crossovers between my SPD and OCD that I cannot easily tell the difference. Smells do affect me as well. I like the smell of fresh bread, coffee, candles, and even washing powder. When I go to the supermarket the aisles containing those items can get quite overpowering. I have a lot of air fresheners around so that I can combat the bad smells around the house. I can hear much better than my mum. I can hear a phone ring upstairs from downstairs in the living room at times; it is not a major issue to my SPD though. What is a major issue with my hearing side of SPD has got to be loud noises. My family sometimes have an unfortunate habit of raising their voices when tensions become high. I find this horrible, and it makes me feel worse, the best thing I think that was invented for this is earphones. I just plug them in turn my music up and it cuts it off. That has been my strategy for tackling this problem. Something has also perplexed me about my SPD. I am not sure if this is because of my SPD or AS but I have noticed that I can sense my family’s moods. Personally, whenever I sense someone is feeling bad I can tell, it is either that I sense the awkwardness of the situation, can sense their tone of voice, see their reaction, like sinking into a chair and covering their face. I immediately feel extremely uncomfortable; conflict is something that makes me feel really awkward about. I tend to feel bad if they feel bad, I guess it is like a mirror image. I have noticed something very strange that only happened once a while back. I got up one morning walked to the window then I suddenly got this picture in my head of a cat with an exaggerated scared expression. A few seconds later I heard a dog bark from far away and then a couple of seconds later I noticed a cat cry. I found that weird, I have never experienced that before. It shocked me and I didn’t know what to think. I am not sure what it is. Is it my SPD, AS or what? So the questions I ask are: Where does my SPD affect me and where does OCD? Also, has anyone found any strategies to tackle some of these SPD or OCD traits? And what happened when I got that pre-emotional reaction from the cat before it occurred?