For as long as I can remember, you have been a part of my life. No matter the time, the location or the season, you were always there, instilling negativity and horror with every step I took. I was haunted by your ever growing existence, yet I clung onto you as if my life depended on it. You influenced my every decision, I couldn’t function without your presence. Yes, maybe I could walk down the left side of the pavement without the inevitable consequence of my loved ones dying, but you would slowly trickle those all too familiar thoughts of doubt into my mind. Infecting every corridor of rational thinking and slowly poisoning that small, sacred part of independence I had left. Then whispering those all too familiar words, echoing through my being. “What if Ellen, what if.” My internal dialogue screaming at you to stop, but…
Hi all. This isn’t really related to Seeing Double, so if you’re not interested in my personal life just scroll up or down for more articles about autism. If you are interested, I want to talk to you a bit about my Etsy store. I’ve always found arts and crafts to be relaxing and therapeutic, especially where my autism/mental health is concerned. During the year of my breakdown I became obsessed with making sock monsters (small cuddly toys made from socks). I was unable to leave the house for very long because of my health, so I’d sometimes make as many as 5 or 6 a day. It kept me… well, sane isn’t quite the right word, but without this distraction my mental health would have been a lot worse. Eventually my bedroom was full of sock monsters, so I created an Etsy store where I could sell them online…
Hi all. This next piece is a guest article from my Mum (J). I had hoped to write an article on this issue myself, however the experience is too fresh, and it would be impossible to for me objective about it. While J is not on the autism spectrum, she describes my experience of sensory overload very well and has obviously been paying attention when I talk about Asperger’s Syndrome. (Just a quick note on the timescale, J wrote this piece just under a week ago, on the same day I formally quit my office based job in Leeds). So without further ado, here’s her perspective on sensory overload in the workplace….
Gwen started a new job just over two weeks ago. Since starting, she has rapidly become more anxious and stressed, with an increase in her daily dose of citalopram giving scant relief. I’ve done my best to be…
I was recently reading Ellen’s OCD Blog, and in her response to a mom whose son has severe OCD, Ellen says, “…what kept me going is knowing that people cared, that people could still see who I truly was, even when I couldn’t.”
This comment resonated deeply with me, and in many ways, sums up much of my family’s journey. I’ve previously written about our son’s stay at a residential treatment center, and how my husband and I felt left out of all aspects of our son’s care there. This, of course, brought up a host of concerns, perhaps none more troubling than the fact that the staff there really didn’t know our son. How could they? They met him in the worst condition of his life, consumed by obsessive-compulsive disorder, a shell of who he really was. They knew how to treat OCD, but they didn’t know…
Hello all its been a long time since I’ve blogged anywhere on anything. Not just because I have been busy being a student but because I have been busy understanding things in my life,
So Depending on who reads this you should know I have a physical disability which is just a part of my life and mostly does not bother me. I have always suffered from bouts of depression and anxiety and realistically depression and anxiety are a lot harder to deal with than my physical disability.
may is the month for raising awareness about invisible illness, with that in mind In this blog I want to share with you how I discovered I have, obsessive compulsive disorder, specifically Pure –O.
Honestly I believe the ignorance and the lack of awareness around this illness, increases its impact ten fold. Until researching this and its symptoms I really had no clue OCD could manifest in so many ways, In fact I perceived it as more of a quirk than the debilitating illness it is. Before I get into this, I’m not a doctor and everyone’s experiences are different, I will be including links that have helped me verify I had OCD before being diagnosed by a doctor. If you relate to any of the following, don’t suffer in silence, this is an illness, this does exist, print out any links I share and show them to trusted friends or family members or if your brave, your doctor. Furthermore, I can’t express how frightened I am of people getting all of this twisted, with OCD the content of the thought is irrelevant, it does not in anyway mean I desire to carry out or act on my thoughts quite the opposite. I fear them so much I would do anything to prevent anything like my thoughts ever happening, anyway, lets start from the beginning.
It was the first Sunday of February this year and I am a student so obviously I was procrastinating, scrolling through my facebook news feed and I scrolled past an image of a friends child, from this moment, it feels like my life changed, for some reason my mind changed this image into a naked child! Holy shit, The thought of a naked child entered my mind this absolutely repulsed me, I thought it meant I was either losing my mind or a danger to children, at the time of having this initial thought I had a panic attack cause I couldn’t deal with the thought, throughout the panic attack. I just thought my life was over the very thought felt and to me feels as bad as taking pleasure in such thoughts ( a thought Process known as “thought Action Fusion”). After the attack and throughout that day I ruminated on that thought reasoning that because I was so disgusted disturbed and distraught by the thought meant that I would be ok. this helped calm my anxiety for a tiny amount of time, but then the thought of the thought and it’s possible meanings flooded back, so I told myself, if I do not figure this out. if this feeling doesn’t go away this fear doesn’t go away. I will go up north (where my family live and confess it to a friend, and beg him to kill me if this Thought that I never asked for or had any day over made me a Paedophile… (my friend would never do this, I now see the stupidity in that idea) I was frightened to google these thoughts, in case I would find out that I was either legitimately losing my mind. or something I detest and can’t ever be ok with. I didn’t really eat that day.
I got very little sleep that night, I was trapped in my head. To me all of this was very real I was convinced if I told anyone, the nature of my thoughts and then the subsequent thoughts that they would deem me I paedophile. I couldn’t step back and realise that these thoughts made me ill, I was sweating and freezing, I have openly campaigned against child abuse, so there was and is no reason for anyone to think I would be capable of taking pleasure from such thoughts let alone acting on them. Oh and one big thing, I’m physically confined to my wheelchair which made and makes my worry so irrational and I see that. Anyway I remember my carer coming in the next morning to get me dressed I told her I was ill and to come back later, I remember every sound being loud, She asked me if I wanted headache tablets when I told her my head hurt, I replied no “inside my head hurts” she suggested I see a doctor and seemed frustrated out of concern that I wouldn’t. how on earth do I explain this I thought. I had never felt so alone that first week was a living hell.
Once I got out of bed I emailed my universities counselling service to ask for an emergency appointment. I thought “well its confidential” and that if my counsellor thought I was a danger he’d do something about it. I told him about the thought and he did the best he could just to listen but I was annoyed I wanted reassurance, that’s not his job though. Neither of us knew what to do.
Luckily after googling unwanted thoughts I discovered the term “intrusive thoughts” I found this article I cried while reading the article, I think I read it three times in a row, I cried out of relief, relief and empathy.
I wrote a comment on the article which simply read, “thank you Thank you thank you” the first person I told besides my counsellor was a friend who runs a social group I attend, I’ll refer to her here as “B”. I told her and started to cry and heave. She told me “Kyle I know this is not you its anxiety” “ you love children and would never harm them and since then she’s always been there for me. This friend will never get how grateful I am for her patience, if she just did her job I don’t think I would be anywhere near recovery, I sent her every link I found that related to me and we would talk through them.
Kati Morton is a professional mental health practitioner and I find her very accessible and calming.
There are many, many articles and videos I will link to at the end, however with out Rose Bretécher’s “Pure o A rude awakening” I wouldn’t have went to my GP. I’m not lying when I say this womens account of her experience with what I now know I have has become like a bible to me. I showed my mam, this via facebook and I think she said “Yup that’s you” after I told her all the gunk in my head a few days prior Sobbing heaving while Facetiming and Facebooking I sent her links to prove this wasn’t me. My mam never asked for proof, she didn’t need it she knew and knows who I am. Rose has a book coming out via unbound titled “Pure” I have backed the ‘crowd funding’ of this book.
I showed the article to B and she said something like”well this is the answer” she of course reminded me of how brave I was. I found being called brave hard to understand. I was so frightened, I felt like a different person, like life had stopped. I felt guilty I felt shame and I know this is common with OCD. B wrote me a note to give to a doctor and we printed multiple copies of the article, one for my care plan so my carers could see it, one for my doctor and B also showed my learning facilitator’s
Katie D’ath is an OCD specialist. In this video she really explains how OCD works. Seeking reassurance is something I do and this is a mental compulsion to help relieve my anxeity either by asking someone whether I’m okay or by reading about OCD
I made an appointment to see a doctor, I ended up seeing a nurse, and I don’t mean to be mean to nurses, however this nurse did not handle me with great care at all, she looked over the note that B wrote and kind of interrogated me, the reason I had the note was so I didn’t have to speak my thoughts, however the nurse pretty much forced me to verbalize my thoughts. After this she asked me what I’d been watching on tv. I bumbled through my Netflix history this made me feel so sick and angry She nodded not really listening and turned to a computer looked up my meds and said something like “well I’ll book you into see the doctor” but I think its your medication. I’m sorry but What I crock of shit. The medication that she claimed was the problem I have been taking for 7 fecking years without a problem. I saw a doctor about a week later. Below is a document I wrote and gave to my doctor to explain my head at the time.
Once I realise the thoughts are just thoughts, that I never asked for and they are apart of a glitch in my brain I feel better. However that does not stop the glitches, the glitches in my mind. Over analysing images in my mind. Then over analysing the over analysing, this in turn convinces me I must be suppressing, at this moment I’m forgetting this is part of what ever malfunction my brain has. The horrid thing is, is that, the last line will be turned against me, it will somehow be part of the grand cover up. If I was my phobia that are embedded within my thoughts, I would not feel this dead inside, I would not be scared of my own mind. I would be able to feel like I can live again. No these thoughts could never represent me as a person, there’s no rest right now from the internal burning questions that rationally I know the answers to. Look, all children are beautiful, I can find them pretty while being innocent, my brain though right now is twisting the meanings trying to convince me its not innocent and it means I am what I hate, last night, I saw my two year old sisters legs and innocently thought “chubby Cute” but like a beast my brain turned that against me. So then I wonder why and then I wonder why, it’s a malfunction, cause time after time I test and I check and there is no adult attraction it’s the malfunction. I wrestled with it last night in my bed, fought and thought I’d won told myself I’d never become, I’d never be one, closed my eyes saw beautiful women, felt normal again, only for obscene half visions to break me down. Don’t ask me to describe them, I don’t fully remember them. I’m told not to fight or suppress them but to ignore them so I tried then I questioned the morals of ignoring such obscene thoughts, I fight back with “I’ve told people if I was, I wouldn’t be telling people, I wouldn’t feel so horrified” it launches an argument with “your just hiding and confessing” it won’t listen. I suppose theres bittersweetness, in the fact that rationally I will never become and at worst this can only ever really harm me and no other person. It tells me, that it will and it will make me look at child porn, although I never have and I never will, it tells me, I scroll through facebook just to look at young girls, in reality I scroll through facebook out of sheer habit and boredom and its always been that way for years. It’s pathetic, if I was religious I would describe it as a demon, this is what I imagine hell to be like, there’s no escape, although it does take short breaks only to come back when I scroll past an image of a pretty child, the feeling I get at this point is panic it turns my stomach it tells me that if I scrolled past so quick, that, that means I’m running away, if I go back to check and find like always no adult arousal no adult attraction, it ask me why I had to check and round and round we go again.
I was So scared giving the doctor this but my carer and B as well as my mam told me this was important to share and the doctor would understand me, this was very very hard to believe I was convinced I was going to be thrown away, I was wrong. The doctor seemed concerned, concerned for me not about whether I was a danger. he said that he would refer me to a psychiatrist.
It was a few weeks until I saw the psychiatrist, in those few weeks I was lost just going through the motions OCD is often described as the doubting disease. I can totally get this. those few weeks and even now I doubt that I’m the good person I was before all this started. to me sometimes anything that has a remote chance of happening will happen in OCD logic. I have spent days reliving meaningless childhood events in my head for some answer and this hurts, its brutal. OCD is a bully it hurts, it changes themes once your mind finds away to deal with one theme, it’s a new worry, for example I started to worry whether I was going schizophrenic, not that I understand that illness. My OCD figured out that I fear losing control and would cause harm as a result of an illness this is very common. I’ve spent hours wondering whether strangers are real, listening to every sound and finding its source to quell fears of hearing things. I also obsess over my memory and the fear of having dementia, so I force myself to remember things that have just happened. So the stereotypical form of OCD, has obvious compulsions and”checks” such as cleaning and checking locks, my compulsions are all mental, the hearing, the memory testing the ruminations. I would never say Pure O was worse then the more well known OCD that would be very misleading, the level of torment and anguish is the same for the sufferer. The lack of public knowledge about pure o is shocking though.
When I first saw the psychiatrist we spoke for 2 hours nearly I mentioned Pure –O he quickly shrugged it off as he wanted to know me I think, after the 2 hours he told me it was anxiety an that he would refer me to another assessment For Cognitive Behavioural Therapy (See video)
So yet more weeks of waiting, I knew I had OCD and I knew it was Pure O but the lack of I diagnoses fed the OCD ammo, Yet Anxeity is a massive part of OCD, in fact OCD is an anxiety disorder which is also linked to depression.
On april 9th 2015 I went to an appointment anxious, worried as hell, while I was in the waiting room I filled in a mood chart then I got called into a room with the same psychiatrist as before and another doctor of some sorts, we spoke about my thoughts, which at this point centred more around my worries of going insane or developing dementia. I was asked whether I avoided stuff, I told them I was avoiding being alone. I explained that I never watched television but if I had to I was scared because I couldn’t determine what would come on unlike with Netflix. Strangely I was asked if I’d been in hospital a lot as a child, I was. Then she asked me if I was worried about things as a kid. I was obsessed with my mam getting cancer and dying. I was Worried for some reason that my dad would be murdered, therefore if I was at my dads and called on him and he didn’t answer I would automatically think of him being dead and then me being left at my dads house to die. In reality he just didn’t hear me. I was asked if I performed any rituals and apart from the mental checks I said there was nothing. The doctor said, well, the diagnoses is OCD and she wrote the phrase “I have OCD, this is an obsessional thought” she told me things about O.C.D that I already knew and encouraged me to learn about it, which would not be a problem giving the fact that I bled the internet dry of OCD anxiety and depression information while waiting for help. The doctor asked whether I wanted to tell my carer or whether she should tell my carer. I got the doctor to tell my carer as I wanted the clinical proof, not that my carer would doubt me. I would doubt me, I do doubt me and that is Pure OCD.
Before my diagnoses at the very beginning, it became apparent that I was not the only person suffering with symptoms of Pure O. for some reason I spoke about what was happening with me to a select few people who I trusted and they echoed empathy back to me, to have such people around me I can never explain my gratitude.
Going through what I have been through makes me angry hurt and hopeless, If I’m honest, until I realise that. I’m not alone and millions fight with this everyday and millions, live and live well with this. However Millions feel as lonely as I did, on that first Sunday and don’t have the support which I have had. I genuinely want to help those people who are struggling with any mental illness. My way of paying it forward if you will perhaps. If you are suffering in anyway please take care, please believe that you matter and you can get help.
Hey, lovely, sexy beautiful people, I did a talk this past Tuesday about the subjects surrounding love Sex and disabilities, the event itself was set up as part of my Uni’s sexual awareness week and I’m so honoured that I was given the chance to SPEAK on a subject I feel passionate about. Below is the final version of my script hopefully it translates well, however as soon as I can get the footage I’ll upload it, cause I feel its more than words, honoured and humbled at the reception my ‘lecture/’talk’ got. Much love to all those involved in this, please enjoy feedback is welcome!
SPEAK: A student-led lecture series.
SAFE Week Special – Tuesday 10th February 2015
‘Love, Sex and Relationships as a person with disabilities’.
Introduction: Can you tell us a bit about yourself?
About yourself – name, age, hometown, programme of study, career ambitions?
Kyle, 25, Northumberland, Media and Music, Activism and Music.
About your disability – What? Why? How does it affect your life?
Cerebal Palsy, severe form, not progressive, immobile.
Have you lost your virginity?
Yes and like most people it was with the wrong person, a typical high school sweet heart, she was able bodied.
Why love sex and relationship as a person with disabilities are potentially difficult?
Lack of proper education, its different but the same, and my previous girlfriend had Cerebral Palsy but not as severely as me, but we were both in wheelchairs and so when we wanted to be intimate we had to be very open about our love life with care givers.
Basically, at the college we were at we had to book carers in advance, to get me into her bed, and that’s all I would ever ask a carer to do. Although other people require further assistance, I could have asked for help to put a condom on but to be honest for me that’s crossing a boundary so I stubbornly would struggle when the time came but at the time I loved her and it was worth it.
There’s lot to overcome in my opinion, if both people in the relationship need care or have a physical disability. It’s hard to be romantic, when everything has to be planned like a military operation, there’s only one space on busses and most taxis for disabled people. Also meeting people is hard because most carers clock off at 10pm so going clubbing is not the easiest thing to do and that’s where most people go to “pull”, also it is too loud for people to hear me.
So, confidence is a prevalent feature in relationships, what are your experiences of this?
Before I started university I knew I had confidence issues, and sexually I felt frustrated and confused or even scared. It might sound dodgy but to kind of further understand myself and gain confidence, I started seeing escorts. It’s nothing to brag about, but I’m not ashamed of it either, at the time it was the only way I could get any kind of release. I can’t really D.I.Y so there was a lot of stuff I needed to get out, it was such a release, it wasn’t just about sex, it was about feeling “normal” for me.
The ladies were beautiful and seemed like nice caring people, but it’s a job, the reason I mention the escort thing is because, yes it’s a thrill and it was an experience I’ll never be ashamed of, it did the trick, but once the purpose was complete, it left me empty. I actually had a conversation with an escort about wanting to love someone, I was surprised that she encouraged me to try online dating. There’s an awesome documentary called Sex On Wheels that kind of encouraged me to go and try the escort out and I agree that as long as you don’t get attached you can get a lot from doing that, of course be careful. If you can’t masturbate, if you don’t feel sexy, and you’re surrounded by sex than why not pay for it, people pay for counselling, massages and education, sex is important.
How do you meet people?
Well, I’ve tried online dating but have not had much success! Unfortunately conversation tends to end when I mention my disability. Although it can be a frustration, I think it’s about having faith and going places where my kind of people go to, by that I mean artist and activist types, I don’t like clubbing so why would I pretend to.
Many myths surround love, sex and relationships with people with disabilities? Can you dispel some of these?
A big thing for me is the fact disability is not society’s idea of sexy and its bullshit, we are all sexy! Society are given a certain way to view disabled people, we are either heroes for trying or a thing to be pitied. There are not enough disabled people represented on TV, and the idea of sex and disability is only ever on for a fetish or a comedic audience in my opinion.
So because there’s little information on this, people are scared to ask questions. Therefore a lot of people are missing out, not just on sex but on love too, I mean people may assume I can’t have sex but find me attractive or like my personality, but they might not want to take anything further.
It is obvious that society’s view of beauty is not based on reality, not that I agree or disagree with it, I’ve never seen a page three model with any kind of physical disability. porn is horrendous in many ways but I’ve genuinely looked for disability porn to like see what’s possible and the only stuff I’ve seen is fetish rubbish, there is somewhere that porn could be useful.
I’m not promoting image based relationships, we should be with people based on more then just appearances, if a women can’t see past my wheelchair, past my disability than that’s not the kind of thing I want personally. Nobody should compromise themselves to be loved, we really do need to see past the image to get the full picture, we are all beautiful in our own way, instead of tearing people down for looking a certain way why can’t we compliment each other, there are so many attractive people in here by the way, even you Thomas!
Don’t want to become someone else’s burden
Personally I am aware of the high level of care, I never really want a girlfriend to be in the position where she would feel that She would have to, “look after me” I have care assistance for that. I want a women, a partner to love, maybe if its more private and easier for her to feed me my dinner or something, but that’s something of a myth too, I feel that most disabled people don’t want to become a burden or a hassle, we want to be in it together, well I do, the whole acting like a carer thing is abit grey, cause if you want to help and its in a loving way, it can be fun and bonding but I would never want to become a burden or a job for my partner.
The notion of a person with disabilities being viewed as a fetish as opposed to a human being
Sex and disability is clearly a taboo for some reason, it shouldn’t make people feel icky and its not immoral we are human, we love, we need to express that so, sex. Very recently I’ve had friends tell me that there social worker refused to allow his partner to share his bed because “it was wrong” and this is a social worker. Adult consensual sex is a beautiful thing and for some-one in authority to deem it wrong are dirty could be very damaging to someone’s confidence. A lot of lads it seems from the podcasts ive been listening to would, “bed” a person with a physical disability as a fetish conquest, which is wrong. I believe, that’s like the whole inspiration porn debate, basically, if I inspire you it better be because of me as a person not as a disabled person, so if your going to hook up with a disabled person, it better be because you find that person sexy in someway not the disability, it seems to be a fetish thing. Even I joke about it and say things like once you go spack you don’t go back, but its hard to be seen as sexy I guess when people know you need medical help and stuff, like the thing I use to get into bed looks very clunky but, that’s one perspective another perspective could be that, it looks like a sex swing
I think until love sex and disability become normalised we’ll always be fetishized
Having relationships with people with and without disabilities?
I’ve never had a relationship with a person without a disability, it’s not out of choice so far the opportunity hasn’t come about, questions don’t get asked so assumptions are made on my side as well as the women’s.
I can’t hug you if you’re upset you have to come hug me, which doesn’t feel very romantic, I can’t hold your hand whilst we walk/drive. But I observe and I can make a women feel loved, it’s about creativity, I can text a girl and tell her she’s beautiful, and to come and hug me because she deserves it.
Sexually I may not be able to perform the karma sutra but I’ve spent my life over coming stuff, imagine what I’d overcome if I loved you. I’m a passionate person basically, I appreciate people, but that sounds old but I would love to prove it
Struggles of having a relationship with a person with disabilities?
Depending on the level of assistance needed. Care arrangements can be frustrating. Its weird at first having your partners mother put your partner into your bed. Sex can be frustrating, injuries are probably more frequent, At my home in Coventry I have 22 hours care support so if my girlfriend and I were in the mood, we’d either have to be very stealthy. Or plan to do stuff when the carer went out, it would be pretty obvious! Going out publicly, having to manoeuvre
our wheelchairs just to kiss is awkward especially if you’re an introvert! But in any case if you love or are really into a person, you should be up for a struggle, nothing worth anything comes along easy, usually
I’m not posting this to sour xmas moods I’m not posting this because I’m down, I’m posting this because, you are not alone and you have value
Depression, it doesn’t just mean I’m Sad and just because I am not actively looking for a vein to cut through does not mean I’m not depressed, I do not want to die, I have not felt like that in years. I advocate positive thought and try my best to stick with it. I do not want to Die but I really don’t feel like living sometimes. I want to be happy, I want to be able to just take a compliment without my depression following it with a but. I want to enjoy the now without thinking about the insecurity in my future. I want to talk to people without that voice asking whether I’m worth the time. I want to trust in myself and others. I want to hope for love without the sting of loneliness. No matter how rational a positive answer would be depression still has its say, I can’t really choose whether to listen or not,
I can! Because I am worth more, I am loveable. Life is terminal so why the fuck should I waste it, I’m a good person. The world deserves me and no I don’t deserve the world but I deserve the same respect as I give to those who I admire for there qualities from myself for my own qualities
A couple of weeks ago I fainted at work. Well… I’m not really sure if the correct term is fainted or fell over or blacked out, but that’s tangential. The point is I hadn’t done anything like that for months. It was two years since my breakdown, and until I hit the floor I’d been feeling irrationally proud of the fact that I could almost pass for normal. I’m still not entirely sure what normal is, or why I feel it’s so important for me to “pass” for it. I just know I’d be lying if I said I didn’t care what people think.
I have dyspraxia on top of my Asperger’s Syndrome, meaning my fine and gross motor skills are very poor and I struggle to balance or stand still for long. For those of you who don’t know what motor skills are, they enable us to move around…
discussingthedis 