Hi, my name is GoddessBast! — Scope | Disability forum
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Hi, my name is GoddessBast!

I'm 50 this year. I was diagnosed with Ehlers-Danlos Syndrome in 2000 and Fibromyalgia in 2001. I also suffer from Complex Developmental Trauma and depression.

I was reading the first thread about what needs to be improved in 2017 for disabled people. I found the discussion very interesting and agree with most of the points people have made. I must admit though, my biggest stress when out and about is kerbs! Kerbs should be banned. Thick lines or completely painted areas of the road to distinguish the pavement area would be so much better! I have encountered kerbs that are absolutely huge and I cannot manage to conquer in my electric wheelchair. I have a relative living in Spain and I can't go and visit her because of the kerbs!

I'm sick and tired of being sick and tired. I spend most of my days in bed because the pain in my back is too much to do any kind of activity.

I'm quite creative. I renovate dolls houses, make jewellery and fridge magnets, I paint and I love home decor. I'm a dreamer not a fighter. I'm brutally honest.

I have an amazing daughter, no partner and no pets.

Comments

  • Kathy_Bramley
    Kathy_Bramley Member Posts: 132 Pioneering
    Hello!
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • bendigedig
    bendigedig Member Posts: 254 Pioneering
  • MalcolmF
    MalcolmF Member Posts: 7 Listener
    "A dreamer not a fighter..." I like that, there's a self compliment in there somewhere... As for kerbs! For me even thickly painted road markings are a challenge, I've raised tripping and falling to an art form! 

    Honi soit qui mal y pense! Onwards and upwards, and occasionally downwards to rise again (and again, and again...)
  • Kathy_Bramley
    Kathy_Bramley Member Posts: 132 Pioneering
    Not that it's a competition. But I enjoy the fact I can fall up stairs. 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • MalcolmF
    MalcolmF Member Posts: 7 Listener
    Simplicity itself! How are you with air?  o:)
  • MalcolmF
    MalcolmF Member Posts: 7 Listener
  • Kathy_Bramley
    Kathy_Bramley Member Posts: 132 Pioneering
    Yeah. My biggest spill. I was running to the station as a teenager, and half decelerated half didn't, tripped on air or my legs or something, and went sliding on nearby thin layer of gravel over tarmac, covered head to toe in grazes. Got up and went on to the station. Not quite as bad as another disorganized headlong rush, a few years before: for my service flash as a Guide, helping out at Brownies: got knocked over by a car and traumatised a few who were also late. I've never thought about it with quite that sweep before though I have meditated sadly on it :blush:

    Inspired by the fall on the way to the railway station and by a story around Uncle Albert from only fools and horses, I taught myself a creative mash up of parachute training, circus skills and martial arts,throwing myself down on bed's, sofas, duvets on floors etc, trying to think it through and train myself, learn to fall safely. It kinda worked. I have had far less spectacular falls. I still haven't cracked organization sadly. Bah. Executive functioning! 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • MalcolmF
    MalcolmF Member Posts: 7 Listener
    You're talking my language, Kathy, we could run away to the circus (well, maybe not "run")...  :)

    You've certainly been through the mill, I can't think of any tumble/stumble I've had that's been quite as spectacular... I'm glad you're around, that my ever sore elbows and knees are all for a good cause   :)
  • MalcolmF
    MalcolmF Member Posts: 7 Listener
    There is, after all, a kind of special otherness we share that separates us from the common bipeds in the regular world, and acrobats train hard to perform the stunts we do effortlessly  :)
  • Kathy_Bramley
    Kathy_Bramley Member Posts: 132 Pioneering
    What's the complex developmental trauma? I struggled with function and related distance from people, but also socially aggressive bullying and sensitivity anyway (part of the reason: I was easily wound up and on odd things, often self righteous or confused, and pulled funny expressions, but I didn't like to give up on anything or anybody, and thus endlessly entertaining, if I wasn't going to be annoying or even perhaps engaged and handled carefully. Alas they weren't able or willing to do the latter. And it was like a tragedy of errors, despite thoroughly believing no one person is ever an error ever. I haven't been diagnosed with complex PTSD and that feels complicated, but I recognise some of how it's described. But then, one of the reasons it's complicated for me is a lot of mental health and developmental criteria hit some familiar buttons. It's hard to see why, it's partly pathological medical textbook phenomena due to self esteem and unsatisfied awareness of difference growing up, partly probably just part of the complexity of me and complex developmental vulnerability. And the fact they hadn't got the will or funding for all kinds of assessment and services and were concerned not to feed the "what is wrong with me" dragon any more then they had to. I think I might have dyspraxia and Aspergers and had some pragmatic language and short term memory problems, sensory sensitivity/integration issues, with aspects of OCD, dissociation, Borderline (self destructive/emotionally unstable, unstable sense of self but with not as much instability as all that overall, married to the same bloke twenty years), avoidant traits (mostly unemployed since failing uni.) I go through phases of negative schizophrenic symptoms, but not really obviously schizophrenic, schizoid, schizo-affective. Anyway, sorry, obsessing about me and my psychology and psychology/psychiatry generally in an untoward overextended way. I can go on. This is about you. 

    How are you liking us so far? :smiley:
     
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • MalcolmF
    MalcolmF Member Posts: 7 Listener
    I'm liking you very much, Kathy (you're the only one talking sense)... and, despite everything and all those endless trials, you're here and I feel I've inadvertently entered a world I never really knew. Saturday night and I'm home - five years ago, before my metamorphosis, I'd have been falling for quite different reasons, love, alcohol, in varying combinations and strength! Now alcohol is a rare and super-controlled event, and love a vague hope 

    We're becoming poets 
  • GoddessBast
    GoddessBast Member Posts: 3 Listener
    Hi Kathy, I have assumed that you are addressing me with your question about Complex Developmental Trauma rather than MalcomE but if I have that wrong, please forgive me for interrupting.

    I was sexually abused by my step father, for 16 years. This was a secret until I was in my late 20's. A family member confided in someone who confided in their Mum and did what I think most Mums would do in that situation. She contacted my Mum and asked her if she knew she was living with a pervert. My Mum's knee jerk reaction was to have me sued for slander but my sister eventually convinced her that not only had I been victim to our step father but both of my sisters had too. There was a court case and there was therapy and then when he died, there was peace that no other child could be abused by him. And forgiveness. It came out in therapy that he had actually been the better parent. I know its hard to get your head around 'apart from the abuse' but if you've experienced this, it can make sense. My mother fed my step dad's talk about me being his favourite and that my mum didn't really love me. She confirmed this in my child-mind by the lack of affection (especially when compared to how affectionate she was towards my brother) and the constant criticism and moods that affected everybody. It was a childhood filled with pressure to do the right thing, remain under my mother's control, regard any imaginative thoughts as worthless unless it led to something that my mother liked. So, for example, I was in favour when I performed in a play. I always thought she had been supportive towards me in that respect but it turns out that she has an interest in the theatre and that was why she attended, not to support me. This was confirmed by her lack of support towards my brother's interest, and skill, in football. He was no Beckham but he was on the school team etc. My mother was never ever to be found supporting him at the sidelines but she always went to the prize giving ceremonies.

    The sexual abuse had been masking the fact that I was being brought up by a mother who abused her power over us. She didn't so much bring us up as keep us under control. A real devious bully who played us off each other. I am one of 5 children and I think the last time all us siblings were 'in favour' at the same time was when I was about 18 - I'm 50 this year.

    There are certain personality tests that you can try online and I answered one with answers my mother would give if she were to be completely honest. The result showed that she was very definitely suffering the symptoms of Borderline Personality Disorder. Do not be fooled by the term Borderline. This doesn't mean that it is almost a disorder, it means that the person has symptoms from more than one personality disorder. Very difficult to diagnose, even harder to convince the sufferer that they have it and even when treated, not the easiest personality disorder to cope with if you have a relative with it.

    So, in answer to your question; Complex - more than one reason, Developmental - has a profound effect on your formation as a person and your ability to cope with things because you have missed out on some of the learning, one therapist said that it was actually a form of acquired brain damage. Trauama - something that affects in a negative way, something you can't forget or get over.

    It is common, as with my case, to suffer from Complex Developmental Trauma if you have been raised by someone with Borderline Personality Disorder.

    MalcomE - thanks for your comments and in answer to your question, so far, I like it here :-)
  • Kathy_Bramley
    Kathy_Bramley Member Posts: 132 Pioneering
    Hi, it was definitely to you. Thanks for answering. I felt rude and didn't mean to end up having a big separate conversation on your thread. I am so sorry for both sides of what happened to you. And I am glad that you're a survivor. 

    I know quite a bit about borderline as I wasn't quite diagnosed with it, but my psychiatrist team had mentioned traits, and there were some different kinds of opinion while I was trying to seek help for post natal depression. I'm officially without diagnosis at the moment. It's looking more like ASD in some ways. But I don't know. But anyway, I have empathy enough to suspect you don't want to get into a conversation about all the ins and outs of that those diagnoses and others, or my life experience. Not in your face like this from the start straightaway at least. It's probably too hard. I am just here to wish you well and was trying to be welcoming. But yes, you can check me out and have a conversation whenever and if ever you feel like it, if I am able to follow up my notification at the time or soon after. 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • Kathy_Bramley
    Kathy_Bramley Member Posts: 132 Pioneering
    I hadn't heard of the exact phrase of complex developmental trauma before, but it didn't make you any less valid, you don't need to defend yourself to me.  I have friends who have had different similar lives. And I have been in BPD and other mental health forums where badly affected family have come in to the support group. Ha, trying to be a calm help in that sort of storm and manage my own feelings of applying the questions to me wasn't easy. I was somewhere in tbe midfle and neither side were altogether bad people it was the impact and the storm each side was dealing with. I've read up and around, I found walking eggshells so hard the first time. I can see why I might not look like a friend. And I am strange and unreliable in lots of ways. I don't want to be somebody who is doing something similar to my family and my anxieties and limitations are problems I am scared you can't help but want to shut down. But I mean to be a friend, if I can. And stay at an appropriate distance otherwise. And like I say, I don't have the actual personally diagnosed disorder, despite asking carefully (as they used to not say sometimes to avoid destabilizing people, making things worse, because if you feel bad about yourself and chronically obsessed with who you are and your security, processing that mirror takes a lot). 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • GoddessBast
    GoddessBast Member Posts: 3 Listener
    Kathy_Bramley Thanks a lot for your comments. I really appreciate your empathy and am sorry for your lack of diagnosis. If it helps, I know that the mental health service are not allowed to lie to you any more. Patients have lots more rights these days. My ex husband is schizophrenic and he had the right to have his medication dose lowered. It ruined our marriage. 

    I have physical disabilities that were much scarier before I had a name for them. Once I had a diagnosis, I was able to find out more about my condition and join appropriate groups of people with the same problem. Ehlers-Danlos Syndrome is a rare condition. Actually, I don't think I'm alone in thinking that its not actually rare, just grossly under diagnosed. When you get told that what you have is rare, you don't expect to come across other people who can relate to you but I was amazed at how many people do suffer from EDS and I have made some good friends from being a member of a group. 

    I'm not sure if I've offended you Kathy. If I have, I sincerely didn't intend to and I apologise if I have. 

    MalcolmF said:
    I'm liking you very much, Kathy (you're the only one talking sense)... 
    MalcolmF I'm mildly offended. I'm also mildly flattered. I pride myself on my nonesense talk. Not in this thread though. Thanks for your comments though, there is nothing worse than writing a thread and not knowing if it has even been read.

    I'm liking you guys and thank you all for the welcome. I hope to be a regular contributor but my health often stops me in my tracks. I am just recovering from a week of being in bed in a lot of pain. I have so much to do as well! I can't afford to be laid up for a week. I have head dresses to make for the wedding of a friend and her bridesmaids. The wedding is at the end of April. I'm really looking forward to it and kind of ignoring the possibility that it might be a 'bad' week. The wedding is 150 miles away so my daughter and I will be staying in a hotel because of my wheelchair. Unfortunately, the north of Scotland is not blessed with lots of disabled friendly hotels so my daughter and I are booked in to a hotel in Aberdeen and will be getting the train , the 30 miles or so, back and to the area my friend stays in. I'm delighted to discover that buses now have facilities for transporting electric wheelchairs and, of course, if you're travelling in Scotland on a concession card, the journey costs nothing! It means a saving of about £70 as that is what the train would cost.

    Sorry for rambling. I've only seen one person this week. My daughter got home last night but it was late and I was asleep. She is studying at uni in Stirling but at the weekend, she comes home and works in a bar in Glasgow. She also changes my bed, cooks our meals, hoovers and cleans the floors and does ironing if she has time. I'm so proud of her. She is a very genuine person. She is beautiful inside and out and I just know that her life will be a success because I believe she is the reason I am here. 

    Rambling again. I should be moaning about things that need improving for disabled people. So, ok, here's another one. Cobbles!

  • Kathy_Bramley
    Kathy_Bramley Member Posts: 132 Pioneering
    Mmm - cobbles!! Although I do like the look of them, my walking gait and ankles don't! And neither do wheels really! 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • Kathy_Bramley
    Kathy_Bramley Member Posts: 132 Pioneering
    Your daughter sounds awesome! 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • Kathy_Bramley
    Kathy_Bramley Member Posts: 132 Pioneering
    Being isolated sucks. How are things this week? xx
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • bendigedig
    bendigedig Member Posts: 254 Pioneering
    @GoddessBast
    I nearly went to study at Stirling when I was a lad.
    I visted the city years Later.  I quite liked the place.  I was sorry I turned them down.
    @Kathy_Bramley
    Yes Isolation sucks like a very powerful Hoover.

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