Thursday 30 September 2010

Social Networks - Announcing Death?

Last Friday I logged on to my Facebook account and happily read down my home page, updating myself with friends activities. I then came to a few entries made by the same person, in a short period of time. I was stunned and emotional by what I read. Ivan (for protective purposes) had announced his wife's death,that was just 10 hours earlier, on his Facebook page. Not only had he announced her death, but he had made several messages about her fight against the illness, how much he loved her and the pride in their two children. It was emotive reading. 

Ivan is not a random internet friend, he is someone I know in person, but one of those whom I haven't seen for a few years, but with the help of Facebook, complete loss of connection is never quite reached. This made the shock more palpable. I knew this man, he is a good man and I can't imagine the pain he must be feeling. He isn't much older then I and his children are teenagers. All grieving. 

Being teenagers, Ivan's children also have Facebook accounts and made comments of support, love and loss. It became too personal for me and I looked away. 

I voiced my surprise to the announcement being made on the social networking site to my colleagues, and was greeted by one comment that made some sense. "It's an easier way to let a lot of people know at once, without having to keep telling people over and over again" 

A valid point I suppose.

Is there a difference between Twitter and Facebook for social networking and what you can and can't post or what you will or won't post?

I for instance, have put my issues with my son's health, in snippets of information on Twitter, whereas I haven't uttered a word on Facebook. Is it to do with personal allocations of what online places represent for each individual person? Twitter for me is an open network, with all but one person, unknown to me in person, whereas Facebook is that more personal and I know the majority of the people on there. I don't wish to make announcements on Facebook to people who know me, yet don't Know me, about something as personal as my son's health, but am willing to whisper it into the ether of people who do not know me.

I personally felt a little uncomfortable, not with Ivan's loss and grief, but with the further open discussions on the network between him and his grieving son's, when I imagine they were probably in the same house. 

This week, I saw more use and purpose for the medium as Ivan gave quite simple details of funeral arrangements and requests for donations instead of flowers. After his initial outpourings, the Facebook feed was quite quiet. I think it served it's purpose of being a place to let some emotion out, but is Facebook the place to let that kind of personal emotion out? Are we living in a world where nothing is ever sacred, nothing is ever personal, it's just an open world, where humans and computer connect as one and no matter where that leads or to whom it leads in such a vastly open space that is the World Wide Web.

Do we need to draw ourselves in a little or venture further into the open space where there are no boundaries, the world is an open space for all to share, lines of human interactions and living, blurred with the extension that is fast becoming who we are, the open lines of the internet? Do we share too much, do you have personal thoughts and feelings that are yours alone or yours and one other living person? Can you exist in your own little section of the world without reaching out as far as they eye can see and beyond or is who you are intricately entwined with the technology that enables the interactions we are currently using?

What is social networking in today's world? What is the purpose of so called social networking sites and are there any boundaries? How do you know what the boundaries are, if they exist, and what do you use social networking for?

Thursday 23 September 2010

Started writing

Well, I promised myself I would make a concious effort to start writing fiction this year, after many years of putting it off, writing one or two chapters and getting no further or just simply making my life far too busy to do it.

This time I decided that enough was enough, with all the issues going in on my household over recent months I need to do something for me as well.

Yes I do currently have the Open University to contend with, which is why I thought I would try my hand at writing short stories first, just to get some practice in, and also, generally write more, joining the ( I didn't know it existed!) blog community.

This week, though I should have been concentrating on a very rapidly looming Open University final assignment and when I mean final, it's the final assignment of nine months work and if I don't complete it, I fail. Not really an option, it just means I have to work really really hard at the last minute. Anyway, the point being, is that this week, I have written my first short story.

It started out as an idea scribbled down in a note pad, and then promoted to the ranks of my computer screen where I typed idea's, paragraphs and characters. I went a little off course and reigned it back in, edited it, read blogs giving advice, took notice, added things in and then today I was very nearly happy with what I had. I spoke about what I had been doing with two colleagues who were in the office with me at the end of the day.

I enthusiastically offered to send it them via email for their honest opinion and regretted the offer as soon as the words passed my lips as I knew that if they found it bland or just plain rubbish, then they would just be polite to me.

I heard the bleeps on the computers as the story arrived and watched as both female colleagues looked at their screens and started reading. Iris stated she would give critique if I really wanted her to, so I sat quietly yet fidgetly waiting. She finished first and said it was really good, all sentences and paragraphs in the correct tense and she really hadn't expected what was done and that it was really well woven in.

I then moved my attention to H as she read, and I waited. She stopped reading, looked up me and I saw she was crying! Oh my, words I had written had taken her into the story and she had cared so much she cried. She loved it. What a compliment!

Yes, as a first short story I fully expect it not to be made to publish level, but I need to do this, get plenty of rejections, learn my writing and my own style and keep going. I'm really serious this time. But honestly, it really did have me grinning like the proverbial cheshire cat when H cried.

I think I just started writing!

Wednesday 22 September 2010

Moment of Closeness

Following several ramblings as a demented mother of a teenage daughter, i am blissfully, heartwrenchingly happy to say she is currently laid in bed next to me as i type this. Taking some time to spend together as her dad watches the football downstairs.

Im not going to dwell on the fact that she doesnt feel well, but that she wants to spend some close quality time with me. No real conversations, but i can feel very real love from the little girl i know inside of her.

Shes laying quietly ( ok, a little unwell) but she still turned to her mum and i feel that overwhelmingly sentimental love for her that hasnt been so warm and fuzzy of late.

Im going to switch off now and lay in the dark for a while with her.

A momentous feeling of love and reciprication, well worth mentioning

Goodnight x

Monday 20 September 2010

Open University and decisions.

I'm studying with the Open University, for what was to be a degree in Geosciences. I've done my first two years at level one and am currently coming to the end of the last course, which has been extremely difficult to keep going with, bearing in mind all the health issues and worries I've had with my son and trying to function in a full time job role. I even managed to fit a weeks residential course in Brighton with the OU this summer.

My next step should be to choose a level two course, which is more difficult and whose grades count more if you are aiming for a top mark degree. My problems are now, that the OU have changed their science programme and I'm unsure if my plan can still come to fruition with the Geosciences. It's all to do with money and the lack of support, they along with everyone else is getting from the government. This surprised me considering I pay full wack for my courses and I can tell you they aren't cheap. I think If I'm quick and fit in another residential in 2011 and one more in 2012 I could get my named degree. It's all a bit confusing and no doubt I need to call an advisor, but my mind is currently over active with other issues.

I know what course I want to do next and I looked at it, to see if it had several start dates so I could put it off for a couple of months, focus on my little boy and also see if I have the potential to write fiction. Unfortunately, the geology module I want, only starts this November or November 2011. I don't think I'm willing to put it on hold for a year considering the money I have already put into it and the fact that even with racing deadlines and stresses, I have generally enjoyed what I have been learning.

So it looks as though I am going to attempt to do both, continue my studies with the Open University and start writing and see where that gets me. It's something I enjoyed doing when I was a child, but dreams didn't seem to be encouraged when I was young, so now as I rapidly approach 40, I appear to be trying to fit in as many dreams as possible. I wonder where that will get me? Maybe taken away in a van with square wheels.....

Friday 17 September 2010

Blogging Etiquette?

As anyone that stops and reads this blog can see, I am very new to this blogging lark. So much so, I'm wondering about the blogging etiquette.

Lots of questions run through my head when I log in and look at my "dashboard"

How many times can I post in a day? Is it a one post a day rule? What happens if I have a lot to say and about completely different subjects? I can tend to wander in my own head.

Can I blog about absolutely anything? I have done some of my own browsing and found blogs that appear to have a theme, be they, writing, mummy bloggers or Ehlers Danlos bloggers, they all seem to pretty much flow quite nicely. Unfortunately, my head doesn't flow in such a nice organised way and I tend to want to say whatever it is I'm thinking about, regardless of the huge jump in subject matter. Am I likely to just lose those people who accidentally fall into my blogs way because I'm random, or is that just as ok, as having a theme. By the way, I do love the themed blogs I'm following.

This then trips into another issue. My blogroll is again all random, but to be honest, as I'm thinking whilst I'm typing, life is random, it's not a nicely organised themed event. Yes, I do love the themed blogs I follow, but I don't think I have enough to say about one subject so I'm just going to go with what is me and what I'm comfortable with.

I'm enjoying the little I have done so far, so regardless of making myself popular or not, I think I'm going to just ramble. Some advice on blog etiquette would be greatly appreciated however, to stop me making a complete and utter hash of it all and allow me to maybe build up some followers to converse with on subjects that may interest someone somewhere....

Thursday 16 September 2010

Disconnection from your online life?

I read an article today on the BBC News website, about people disconnecting from their online lives. I found it extremely interesting as I am currently building my online life, having recently starting blogging for myself and also following others blogs with interest. I'm an avid tweeter, loving the quick interactions and the speedy flow of information. I love people and people watching and being able to connect in some small way, with people I would otherwise never have "met" is amazing.

Yet my thrill at these world wide interactions is at odds with others who are actually paying a company to completely wipe out their internet life, deleting friends, images, all connections. The article states;

"People just want to get rid [of online profiles] because they noticed they spend way too much time in front of the computer," says Mr Savicic. "They are basically getting their analogue life back."

I study with the Open University, which is an isolating way of studying so being able to connect through the provided online forums, Facebook and twitter has been an immense help and at times has provided me with much needed motivation. That and the impending deadline I'm usually rushing to meet!

I have a dream I have carried with me from childhood, of writing and that has led me to blogs and all that the internet can open up. Do I think I spend too much time on the computer to the detriment of my face to face relationships? The short answer is, no. My real relationships come first, I have a family I adore, but they also have their own interests, particularly the children, so that leaves me some time to do my thing and here I find myself. It's not taking over my life, it's just another aspect of my life. An open world for me to explore and connect with and lets me do many things and provides me with so much information, and learning and knowledge can never be seen as a bad thing, it's just maybe a different way of going about it, but that's what the Open University has latched onto, accessibility and the power of the internet.

Maybe one day I will find myself tiring of some of the things I find interesting now, I can be a little bit fickle, but for now I won't be using the services of a company willing to wipe out my very existence, if only the online version of it.

Wednesday 15 September 2010

Teenage Parent Barrier

How to break that parent, teenage barrier?

I read an article today from one of the popular press websites, well it was printed out for me by a colleague after I brought up the subject of difficult relationships with teenage daughters.

My problem, is my fear of never getting back into a stable loving relationship with the person I brought into this world and whom I broke my heart over, on leaving the hospital without her as she was premature. How did we get to this place, a place where conversation is a distant memory, an echo of a past we once shared and is now splintered by hormones and opinions, which are based on little more than the first thought that pops into her head.

She's silent, like a ghost ship in the dark, only little chinks of light remind me my little girl is still in there. The silence is foreboding and I'm now unsure how to break it for fear of breaking something so fragile, that which is or once was, our relationship.

I see her self worth is low, I see her try to be someone she thinks she should be, I see her want to be loved, but know that currently the love she craves is not from me. The love she craves is from those who chatter and laugh about boys and clothes and from the good looking boys far to old for her to understand the complexities they will bring with them. I have to stand by and watch her find her way through these years and hope that she makes it through relatively unscathed. Protecting as best I know how, in as subtle a way as I can so as to not break what ties us.

I have to admit to being affected by this. I feel I now exacerbate the silence with my own as I fear responses and maybe ashamedly, rejection by the one I love. Yes, I've told her time and again I love her, I've said the words, but it now feels as though I say them to myself. I hope she knows I'm here for her should she ever need me, but I'm at a loss on how to be, so I don't be. I watch as she goes out to her friends, and watch as she comes in and goes to her room. I'm a watcher.

It breaks my heart right now and it hurts to know this is a long haul and I hope with all that I am that we make it through this.

The article I read, tells me all this is pretty normal. Teenage girls get hormonal, get silent and moody and have difficult relationships with parents, but knowing it's normal doesn't help. I need to know that we can get through this. I need to know that she knows and actually KNOWS I love her and that one day we will hug and we smile together, but right now, today, there is a huge silent barrier in our way and it's showing no signs of moving.

Monday 13 September 2010

Introducing Bob

I thought I would do a post introducing my little girl Bobbie. She's a seven year old Springer Spaniel and she is the laziest springer in the world. Springers are usually very energetic dogs, but Bob takes every opportunity to lay down and sleep. (Maybe taking after her owner?)

She has a boys name as we let our daughter name her when she (our daughter) was only 6 years of age. It does suit her now though.

I love my puppy, she is comforting, cuddly, smells yummy and has the most gorgeous ears around.

This is my favourite photograph of her.

Sunday 12 September 2010

Migraine and the working woman

I suffer with migraines. Blinding, crippling pain over one eye, nauseating, that makes me want to leave my insides on the floor beside me when I move, migraines. Not the most pleasant image to conjure up, but a pretty real one to live with.

I've lived with these abominations for years now, since I was a child. So many doctors appointments with so little help that eventually I stopped complaining about them. In fact I think I last mentioned them approximately 12 years ago and just got on with them when they arrived. Not actually getting on with anything other than putting my head down in my bed, swallowing painkillers regularly in the hope that they may, one time help me in my pain ridden hours of need, which needless to say, they didn't.

I work hard so timing is everything with these. They are such a regular occurrence that I need them to not happen during the working week as it's near on impossible to function so instead I hope that if I'm to be struck yet again with the debilitating pain and nausea that is migraine, it is a weekend so I can lay in my room, ask my other half to look after the children and let the weekend pass in a haze of painkillers, buckets and occasionally wailing in self pity.

So here I am, blogging from my bed after again managing to obtain a weekend migraine that started Friday. Happy it will be gone in time for work tomorrow, unhappy that yet another weekend is wasted and this weekend being a sunny one I could have enjoyed.

Nothing eases these attacks, nothing prevents them. I live with them and then as soon as I can, I get up and get on with my life again.

Saturday 4 September 2010

Tick in a box

My thoughts, feelings and actions from Wednesday are disjointed and all over the place,so writing a blog entry about it, that makes any sense, could prove difficult. This morning, however, I am going to give it a bash before I get on with an Open University assignment.

We saw, according to her, one of the top two Ehlers Danlos consultants in the country.

She started by asking a few questions about my sons developmental speed when he was young, etc and then did the hypermobile tests again. She said he was more hypermobile than the original Doctor had stated, and that he scored a 4 maybe a 5 on the Beighton score(he refused to touch the floor, which he can normally do). He is very hypermobile in his knees. She also said I scored higher than the original Doctor said, but didn't tell me what it was. (I was a 3 last time)

She asked me about his chest wall shape (I think you would call it a pigeon chest) asking if it has always been this way. I said it had. She asked if he had trouble breathing when he was born, which I replied, temporarily as he was premature, but a Doctor was in delivery room and he was soon ok. I'm not sure on the relevance of his rib cage shape, but she didn't say anything else. She also didn't mention the veins you can see across his chest.

She said he is a little stretchy around his face, but that is the only place. She asked about scarring from injuries, which he has none and then regarding the hypermobility, she stated he was either a little hypermobile or just a little more flexible than most people and she wasn't comfortable putting him the EDS box.

She said he didn't have Vascular EDS because large joints (his knees) wouldn't factor in that. I queried his leaking capillaries and she said no known case of Vascular EDS has ever presented to her with capillary fragility so she doesn't believe it is a part of the syndrome. He did have some petichae rash for her to see, which she said she could biopsy to look at the capillary walls to see what was causing it, but didn't want to do it that day as it could have come back inconclusive and he would need more of them and she didn't want to scare him off, so she is seeing him in a year. She also said that Doctors all over the country send their biopsy's to them for analysis and that they ask them to tick certain criteria boxes to make sure that the biopsy is warranted.

When I was informed that I was seeing this consultant, the phrase "Ehlers Danlos can be difficult to diagnose" was said, in realtion to the fact that this consultant was more knowledgeable. Yet here was the top consultant, just ticking boxes. Not looking at any wider picture, considering all things, she was just going through the ticky box test as the previous Doctor had done. There is nothing difficult about ticking boxes. I have read so much about this disorder now that I could do the ticky box test! I thought she was bringing a more experienced overview to the consultation, but all she saw when she looked at my child were ticky boxes.

She said he doesn't have EDS but is seeing him again.

I'm unsure about this, it just seems strange he is a little hypermobile, skin stretches around his face, his rib cage is misshaped, and his capillaries leak. (plus he has quite a bit of nausea(he has a comfort bucket rather than a comfort blanket!) and some leg pain)

I'm a "little" hypermobile, I'm having quite a lot of pain in my small joints as well as my hips and my gall bladder was removed as it wasn't emptying properly (could this be eds related?)

I'm worried something is wrong and it's not being picked up, but after a second opinion I suppose I have to let go of it for a year and see what happens then. I have started a diary of sorts for my son now, keeping photo's and lists of things and will keep a close eye on him.

I have also researched on the internet "ehlers danlos" + "capillary fragility" and "ehlers danlos" + "petechiae" both bring back links, recent links, of patients presenting with this as EDS. I have also researched "pigeon chest" and it would appear, that can be caused by a connective tissue disorder.

I will continue reading, gathering information and then assess what I have to do with it, whether that is to wait a year or push harder. I don't want my little boy to have this as I've said before, but he sure as hell is not just a tick in a box.