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Hi, my name is GoddessBast!
GoddessBast
Member Posts: 3 Listener
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.
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.
Replies
Guess my diagnosis,
It may help, but
Don't guess my kids's
Honi soit qui mal y pense! Onwards and upwards, and occasionally downwards to rise again (and again, and again...)
Guess my diagnosis,
It may help, but
Don't guess my kids's
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!
Guess my diagnosis,
It may help, but
Don't guess my kids's
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
How are you liking us so far?
Guess my diagnosis,
It may help, but
Don't guess my kids's
We're becoming poets
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 :-)
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.
Guess my diagnosis,
It may help, but
Don't guess my kids's
Guess my diagnosis,
It may help, but
Don't guess my kids's
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 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!
Guess my diagnosis,
It may help, but
Don't guess my kids's
Guess my diagnosis,
It may help, but
Don't guess my kids's
Guess my diagnosis,
It may help, but
Don't guess my kids's
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.