Hey folks,
I hope this post find as you all well and it is just a bit of a catch up on what I have been doing lately. I have been spending lots of time writing over the past month as my creative writing course starts to wind down.  I have been like a crazy man with assignments for university, coursera courses, writing for some competitions, sorting out themes for the blog and also trying to get some artwork, photos and other interesting things on the go.
I had a bit of a crisis of confidence and started to question my abilities as a writer but I think they are over now.  I got lots of lovely advice from a writers group that I go to and some good feedback from my tutors.  I am thinking about posting my assignments onto the blog now that I have had them marked to see what you folks think as well.
So hopefully in the next few weeks I will have a lot of new content for you and there will also be some more changes for the blog in the months to come. 
In the meantime please know I haven’t disappeared of the face of the Earth and I hope to post more soon.

Until then,

STAY SAFE AND KEEP SMILING

The post A quick catch up appeared first on Sleepless In Newcastle. © 2012, All Rights Reserved ¦ http://www.keithaddison.co.uk/sleeplessinnewcastle

Hey folks I just wanted to drop you a quick little note to say that I have done a guest post over at Human in Recovery

I talk about some of the ways that I have used to battle binge eating disorder throughout my life and how I had to change my way of thinking to do it.

Please check it out and if you enjoy it then let the lovely Kina know and subscribe to her blog. It is always a good read and I highly recommend it.

Thats all for the moment but I will be posting regularly once I have my final assignments out of the way and I have more time.

Stay safe and keep smiling!

The post Guest Post at Human in Recovery appeared first on Sleepless In Newcastle. © 2012, All Rights Reserved ¦ http://www.keithaddison.co.uk/sleeplessinnewcastle

Undiagnosed Children’s Day 2013

I have thought about writing this post at least a hundred times over the past week.  Each time I have focussed on the different aspects of SWAN UK, undiagnosed children’s day and the people I have met because of having an undiagnosed daughter.  I never seem to find the right words to describe what they mean to me.

When we first found out that our daughter was going to need care around the clock, both myself and my wife stepped up without hesitation or reservation.  She was our daughter, we loved her, so we would be there when she needed us.  Little did we realise just how dramatically our lives would change over the next few years.

We spent the first few years endlessly trawling the internet for diagnosis, support groups, charities or anything else that would give us somewhere to vent our frustrations, voice our worries and find information on all of the appointment we were going to (at the busiest this was often every day and sometimes twice per day).  We were completely in the dark and we felt completely hopeless until we found our new ‘family’.  I don’t use that term ‘family’ lightly because I realise that being part of a family requires a lot of effort and love.

SWAN UK gave us a new family and it is one that spreads from our local city, right across the world.  We are able to talk about our worries, problems and air our questions without feeling bad, stupid or like an abnormal freak.  Not only that, we could share our joys, achievements and celebrations with people who could understand exactly why our daughter holding up her head to look at us was such a tear-jerking, joy inspiring feat.  Every man and every woman that uses SWAN UK has become and Aunt and an Uncle to our daughter and I am sure they would say the same about us.  We all feel joy when one of our SWANs achieve something and we all feel the pain and sadness of the loss of one of our own.  Only this week I learned that one of our swans had passed on and I can genuinely say I shed many tears thinking of both him and the family.   That is how close the community has become, exactly like a family.

I want to mention the ‘Momma Bear’ of the family, Lauren.  She goes above and beyond for the community she has helped create and shape into SWAN UK.  SHe works tirelessly to further the help and support that SWAN UK can offer to families.  Part of that has been the creation of ‘Undiagnosed Children’s Day’ which will be annually held on April 13th.  This is a day when we try to raise awareness of the general public to the hundreds of children and families who are living with an undiagnosed genetic disorder.  On this day we are asking people to simply wear something pink or blue and snap a photo to share via Facebook or Twitter.  We are hoping that doing this will show people that our children may not have a diagnosis but they aren’t invisible either.

Here is a video that was put together to show how many families and SWAN’s there are being helped today.

So all I would like you to do is support this cause and raise awareness of families like mine who would be left wandering aimlessly in the dark if it wasn’t for the hard work and fantastic people who make up the SWAN UK network.

DON’T SIT AND THINK WEAR BLUE OR PINK!

Snap a photo and share it to the Facebook page on the link below or on Twitter using the hash tag #undiagnosedbutnotinvisible

April 13th is Undiagnosed Children’s Day

(and my birthday too by the way!)

The post Undiagnosed Childrens Day appeared first on Sleepless In Newcastle. © 2012, All Rights Reserved ¦ http://www.keithaddison.co.uk/sleeplessinnewcastle

A friend asks about Binge Eating Disorder

In an effort to try and write about Binge Eating Disorder and dispel some of the myths and misconceptions, I asked a very good friend of mine to put some questions to me about my experiences.  I did this because this particular friend has known me from before my B.E.D got established and we are very close friends so she can ask me the difficult questions that I might have been reluctant to answer otherwise. So here are the questions and my answers:

What triggers an episode?

This is something that can differ from person to person but I guess the common denominator between them all is emotions.  It seems to be that the people I have seen writing about this all have some kind of emotional trigger that sets off a binge episode and for me it has been tough trying to determine exactly what that was.  When I did some of the Cognitive Behavioural Therapy (C.B.T) as part of my treatment we touched upon the fact that I always seemed to binge when I was left alone. I had to work hard and delve into those feelings (which isn’t easy) and it seemed to boil down to separation anxiety for me.

 My parents separated when I was young and I found it very hard to deal with the fact that I only saw my father on a Sunday between the hours of 10 am – 5 pm.  I can always remember wishing that I could have seen him more and had more time to spend with him.  We used to get a phone call every Wednesday evening as well but it never seemed like enough.  Both my parents were re-married and I went to live with my mother and her second husband.  That marriage lasted for about 7 years and just as I had begun my secondary school the marriage ended and they split up.  I guess it was from that point that the binge eating started to manifest itself and by the time I was 13 it had firmly entrenched itself into my life.

Later in my life the separation anxiety took hold with regards to my wife, to the point that I was paranoid that she wouldn’t come back every time she left the house.  The rational side of my brain told me that it wasn’t true but the irrational side of me would binge to deal with it.  Even now it is something that I have to try and deal with every day and I have to be vigilant because a binge can strike at any time.

I guess I will leave it with just the one question at a time as I don’t want to have huge long posts for you all to read through but if there are any questions that you would like me to answer about my experiences with Binge Eating Disorder then please feel free to either leave a comment and ask or drop me an email HERE

Related articles

• Binge Eating Disorder, what is it?
• Binge Eating Disorder – An Act Of Overeating
• What is Emotional/Binge Eating?
• Binge Eating Disorder strikes back

The post Binge Eating Disorder: A friend asks appeared first on Sleepless In Newcastle. © 2012, All Rights Reserved ¦ http://www.keithaddison.co.uk/sleeplessinnewcastle

Alaina Abplanalp Photography/flickr

What is Binge Eating Disorder?

Binge Eating Disorder (B.E.D) is a serious eating disorder in which large quantities of food is consumed frequently.  Most people can occasionally overeat if it is a special occasion or if on holiday.  For someone who has B.E.D. this becomes a frequent occurrence and is often done in secret away from anyone else.

Another key factor in B.E.D is the feelings of shame, guilt, disgust and embarrassment that comes after a binge episode.  As a sufferer I would vow adamantly to myself that I would stop but the compulsion of the eating disorder always pulled me back into the cycle.

Symptoms of Binge Eating Disorder

It is quite difficult to tell if someone has B.E.D because they may be  overweight or at a normal weight and have no obvious physical signs of symptoms.  There are some emotional or other signals that they may be binge eating which includes:

• Frequently eating alone or avoiding situations where food will be eaten
• Rapid eating through binge episodes
• Eating an unusually large amount of food
• Eating until you feel physically sick or experience pain
• Eating when you are not hungry
• Feelings of anxiety, depression, disgust, shame or guilt about eating food
• Frequent dieting without any significant weight loss
• Yo-Yo dieting where you gain and lose weight repeatedly

This is by no means a full list but they are some of the things to watch out for if you suspect you may have B.E.D or if a relative or friend may be struggling with it.  It is worth mentioning that after a binge there may be a period of normal eating or restricted eating (crash diets or no food consumption)  which feeds back in to the vicious cycle of binge eating.

B.E.D is very similar to Bulimia in that there is a consumption of a large amount of food but with B.E.D there is no purge phase (i.e. no vomiting, use of laxatives or over exercising).  However in the most extreme cases there may be a purge period after a binge episode in which there will be days of a very low, or no, consumption of food

A binge episode is something that can happen over a whole day where the consumption of food is not eaten all in one go but may be ‘grazed’ until the person feels physically sick or experiences pain as a result.

Adapted from a photo by Beverly and Pack

Warning signs

In my personal experience as a sufferer with B.E.D, there are a few things that you may notice if you or someone you are close to may be having binge episodes.  Some of these are:

• Irritation/bad temper  at meal times or whenever food is mentioned
• Food going missing from the cupboards, fridge, freezer etc.
• Finding discarded packaging in unusual places
• Packaging hidden inside one another to disguise how much has been eaten (e.g. I used to put wrappers inside a cereal box or a crisp packet to hide the ‘evidence’)
• Extended periods of time without food and then eating lots of food over a day
• Finding that you have run out of something before you expected to (I used to leave enough in a jar or tub to make it look like it had been used normally or it had been forgotten in the weekly shopping trip)
• Rapid weight gain or loss (I gained 42 lbs in weight over a period of 2 months at my worst)

That is all I will cover for now but I will be moving on to my experiences and some of the stories I would like to share with you about my binge eating.  I hope that I have explained what Binge Eating Disorder is and it helps you understand what I was dealing with. 

If you have any questions that you would like to ask me about Binge Eating Disorder or my experiences then please feel free to e-mail me at sleeplessinnewcastle@keithaddison.co.uk

Related articles

• Food Addiction (danicapelzel.wordpress.com)
• 3 Facts Families Should Know About Eating Disorders (abcnews.go.com)
• Binge Eating Disorder strikes back (keithaddison.co.uk)

The post Binge Eating Disorder, what is it? appeared first on Sleepless In Newcastle. © 2012, All Rights Reserved ¦ http://www.keithaddison.co.uk/sleeplessinnewcastle

Binge Eating Disorder and me

Hi folks,  this is my first of many posts that I will be writing in the future that is going to be about my Binge Eating Disorder (B.E.D) and things that I have to try and deal with to claw back some degree of normality in my life.  I am going to try and be as honest as I can and I am going to do it so that I can hold myself accountable to everyone who reads this and everyone who knows me.  So here goes:

I want to apologise to my wife Zanna and my beautiful girls for my behaviour over the last few months and I mean it with all of my heart.  I have been lying to them and also other people about my relationship with food in the past few months.  You see I have been telling everyone (including myself) that my Binge Eating Disorder has been under control and I haven’t had a binge episode in almost a year but the truth is that I am a liar.  I have had binge episodes in the past few months and even as recent as the past week or so.

The logical side of me is trying to work out why I have been lying about this but the frightened, frail little kid that still lives in me with all of the insecurities is telling me to run away and hide until it all ‘goes away’.  The simple fact is that it doesn’t go away though, it festers inside of me like some kind of hidden demon turning my insides rotten and twisted.  I have lived with B.E.D for so long that my body and my mental state has been so messed up that I am not even sure if I even realise what I am doing sometimes.  Then again, sometimes it is so real it is like my mind is held captive while automatic pilot kicks in to carry out this destructive behaviour.

I realise now that this post is going to be way too long if I try and squeeze in everything that I need to say about me and my relationship with food so I guess it will be better to split it over a few posts so that I can explain and reason my way through things.  I think this is going to be the best way to do it and I hope that you will all follow along so that I can relay my story to you a little better than one post warrants!

I guess for now I want to make a personal statement to myself and everybody else who knows me or is reading this blog:

My reminder of where I could end up again unless I take my Binge Eating Disorder seriously and start to get treatment.

My name is Keith, I am a 33 year old man, I have Binge Eating Disorder and I have been struggling over the past 3 or 4 months to keep it under control.  I have lied to my wife and kids about things to do with food and I feel ashamed, disappointed and disgusted with myself for doing it.  I am tired of hiding things and deceiving people about my feelings and about my B.E.D, so I want to make a change and become accountable to everybody.  I promise myself, my family and my friends that I will be honest from this point forwards in everything that I do and I am sorry if I have hurt any of you with my actions.

That in itself has been really difficult for me to say and I wish I had managed to find the courage to say it sooner.  It is only through the support of my understanding, patient, caring and beautiful wife that I can even begin to start coming to terms with this problem that has plagued me for almost 20 years of my life.  I guess the best way to go on from here is to try and explain what B.E.D is for those of you who may be reading and don’t know , and to start working my way towards some kind of treatment and understanding of how I can tackle this mental illness.

I want more than anything to highlight this issue for other men who may be suffering with eating disorders out there and also to hopefully work towards having a healthy relationship with food once more.  I hope that you will listen to my story along the way and gain some insight and understanding to the things that go with Binge Eating Disorder, but also that you will be part of my coming to terms with it and help support me in my efforts to overcome it.

Thank you so much for reading my little old blog and I hope that you will be interested and join me on what I know is going to be a tough journey. I love you all folks!  So until next time please stay safe and try to keep smiling!

Related articles

• Concocting Food a Sign of Binge Eating Disorder (medicaldaily.com)
• 3 Facts Families Should Know About Eating Disorders (abcnews.go.com)
• Eating Disorders in Life with Diabetes (diabetesdaily.com)
• Binge Eating Disorder Included in DSM 5 – Progress or “Medicalized” Gluttony? (uncexchanges.wordpress.com)
• Eating Disorders: Fighting Stigma with Science (psychologytoday.com)
• It’s National Eating Disorders Awareness Week! (healthyheels.wordpress.com)
• National Eating Disorders Awareness Week 2013: Binge Eating Disorder (it’s not just a “willpower” thing) (lyricsonthelake.wordpress.com)

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Welcome to Holland

I wanted to take this chance to talk about a story that is famous in the world of families with special needs children.  It is a story called ‘Welcome to Holland’ and it explains how having a child is like planning to go on holiday to Italy.  It talks about buying guide books, learning some of the language and getting your currency only to find that when your plane lands you are actually in Holland and not Italy.  (You can read the original story here if you would like to).

I got to thinking about this story and how it relates to my family and others who are undiagnosed at the present moment in time.  For us the story is a little different so here I go trying to give my version of it.

Like the Holland story we get on the plane expecting to arrive in Italy but landing in Holland but then the story changes for parents of undiagnosed children.  As we go through the airport to claim our baggage someone kidnaps us. They blindfold us, put earplugs in and put us in the back of a van and start driving.  A few days later we are dumped in the middle of nowhere in a field.  This might sound extreme but let me explain.

When we get told that our child has a disability it is a confusing and frightening prospect but after all the testing has been done and they still have no answers it becomes a nightmare.  You have to learn a whole new language, you don’t know what direction to turn to go for help, you have no idea what the future holds and you have absolutely no concept of what kind of support you are even going to need to get by day to day.  Then, even when you manage to figure out where to try and get help, you are bombarded with medical terminology, jargon and unsympathetic clinicians who are, at best, guessing what you are going through in trying to cope.

If you do manage to stumble on a more helpful source of information you sometimes find out quite quickly that you don’t fit any of the ‘check boxes’ to qualify for help.  You then have to go through a myriad of appeals for benefits, equipment and other items that are extra to the ‘normal’ child that you thought you were going to have.  This is all on top of the usual worries that any parent has with their newborn child.   If you do seek help from any kind of service or clinician you are either dismissed as an overbearing, hypochondriac parent or you are completely dismissed as ‘not knowing what you are talking about’ as you have no medical training (despite the fact that you look after THEIR patient 24/7).

Thankfully there is an organization out there who has been trying to help these families navigate their way through what is the most terrifying and lonely experience any parent could ever have and that is SWAN UK.I realize that I have talked about them on numerous occasions but they do a truly wonderful job.  They have a Facebook group that has been rapidly expanding over the past few months and it currently sits at a membership of 434 people and it still has hundreds more who are joining every week.  That just shows that there are so many families out there who would be lost without the support that they give.  The most amazing thing is that the community is so strong and it is managed, maintained and promoted by one main representative, Lauren Roberts.
Lauren is one of those people who works tirelessly to help so many people and yet stays away from any kind of accreditation or recognition of the fantastic work that she does.  She is an inspiration and a lifeline to hundreds of families who would have been lost in the darkness if it wasn’t for her hard work and dedication.  I am truly in awe of her and she deserves a medal and I don’t think anyone involved with SWAN UK would disagree.

So I would like to say on behalf of the hundreds of members, and the hundreds more of potential members yet to find SWAN UK, a big thank you to Lauren.  You do not know how much your support and dedication to building the SWAN UK community has meant to so many different people.

Staying with the theme of SWAN UK, I would also like to let you know that we will be celebrating undiagnosed day on April 13th this year and to celebrate SWAN UK are holding a blogging awards ceremony and you can nominate any of your favourite blog posts to take part.  Please show your support by visiting the SWAN UK website at http://www.undiagnosed.org.uk to nominate your posts.

So there you go that was my first post in a long time and I am sorry if it was a little boring or not what you expected but it was something I needed to get off my chest.  Again I apologize for the time I have spent away from my blog but it has been crazy busy in my house with illness, University work and life in general.  I am going to start writing a few posts in advance over the coming month so I can at least have something to go up for you all instead of my blog gathering the dust like it has in the past few months.

Related articles

• Why we love blogging #2 – Why I blog (undiagnosed.org.uk)
• Why we love blogging #1 – Cyber Friends (undiagnosed.org.uk)
• Raising a Disabled Child… (babyjill7.wordpress.com)
• A SWAN UK Poem (undiagnosed.org.uk)

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Hi folks, this post I decided to do something I have never done before but I have wanted to try and do for a long time, an author interview.  I needed a guinea pig to test my interviewing technique and I was racking my brains about how to go about it when I thought about the lovely Athena Brady.    Her first book, Thoughts on Life,  is now available on Kindle through Amazon and she is also in the process of writing another two books with one due to be released in 2013 called ‘Broken’.  Please do go and check out the book as she is such a wonderful person and has a great outlook on life that will truly inspire those who read it.

So without further ado, here is the result of my efforts:

What inspired you to begin writing your books?

When I was a child, I could lose myself in the world of books. I learned so much about life from books and I devoured them. They fed my imagination and then I began writing myself. My English teacher Miss Whittle encouraged me to write and told me I was a natural writer, I just thought she was being nice; but her words still stayed with me throughout my life. I married had four children and wrote them short stories, throughout my life I picked up my writing and put it down. I felt selfish and indulgent, following what I wanted to do. It wasn’t until I moved to Wales UK that I began to write seriously.

I had a good career that paid well. So I dropped to part time. Sometimes the seemingly worse things that happen to us, lead us to our dreams. I had a breakdown and began to write again, whilst I was off work. It was then I decided to give up my job and write full time and once I began to write I couldn’t stop. My writing brought me back to life, gave purpose to my life and I began to heal.

I started my blog, set up my own website, Facebook page and joined twitter. I then joined a social network site for artists called Wana. The feedback I received from my readers was encouraging and uplifting. I realised that I could make a difference and that I had something to offer people. That I could gave back the gift that books had given me.

Do you have a message that you wish the readers to grasp when reading your books?

My message in one word would be Hope.  There are people out there that care and if you can think it, you can do it.  Believe in yourself.

What books have influenced your life the most?

This is a really hard question for me to answer, as I had read so many books. I like spiritual type writers like Paulo Coelho, Neale Donald Walsh, Deepak Chopra, but I also like gritty raw and dark writers Martina Cole and Stephen King. I like them all for different reasons. I also love J.K Rowling, what an imagination, she is amazing. I try to read as many different genres as I can and new authors as well.  I learn something from every one.

What are you reading at the moment?

At the moment I am reading several books to include on my December Book reviews on the blog.

“Thursdays in the Park” by Hilary Boyd

“Casa de Naomi” (House of Blessings) by Paula Rose Michelson

“Widdershins” (Whyborne & Griffin) by Jordan L Hawke

“Messages from Henry” by Rebecca Scarberry

A Rebel Chick Mystic’s Guide: Healing Your Spirit with Positive Rebellion by Lisa Marie Selow

Are there any other new authors who have grabbed your interest?

New writers to watch out for not an easy question. as I am afraid I will miss someone out. Here goes,

Paula Rose Michelson.

Rebecca Scarberry

Christine Lewry

What, if anything, do you find the most challenging when writing?

I found it challenging to be objective in some of my darker characters. To get inside their heads and think like they did.   “Broken” took the longest to write I have been writing that on and off for the past six to seven years and it will be released in 2013. My heart and soul is in this book and it was a hard one to write. Book three is a challenge of a different sort, as I try to stretch myself as a writer. The story will be told by the perspective of the three main characters. As they all journey through the incident, portrayed in the book. This book will be released in 2013 and has a working title of “Prisoner of love”.

Did you ever experience writers block and if so, how did you manage to get past it?

Yes, sometimes I get writers block but I consider it a positive thing. It is a message that I need to do something else, like go into the real world for a while. Sometimes I need a break and to interact with family and friends. I often use this time to look up my friends in the blogosphere and catch up with them. I find they inspire me and help me get me back on track. If I arrange my day with a little of everything in like, Twittering, Facebooking, family, friends, reading; I find I don’t suffer with it too much.

Is the book based on your life experiences or on somebody you know?

My present book is based on my own personal experiences. “Thoughts on Life” is a collection of short articles from my blog and website. It will be part of a series, as a reader once asked me to put these posts into a book that they could take out and look at as they wanted. However, I do not want money to be a barrier to these books, so they are all free to see on my website. I have asked people who can afford to do so, to purchase the book; as I do need to eat occasionally.

How long did it take for you to formulate the idea for your book until it’s completion?

“Thoughts on Life” sort of just happened, after a request from one of my readers. “Broken” took me many years to write as I picked it up and put it down a lot. I started writing it again, over the past four years and finished it. “Prisoner of Love” at the moment seems to be flowing nicely, I have written ten chapters to date. However, it is in the first draft stage. I am a different breed of writer I think, I do not wish to be held down by a specific genre. I plan to write spiritual books, romance, fiction, non- fiction, and who knows what else? The world is my oyster as they say. I would love to write a book on angelic experiences people have had and near death experiences. Unfortunately, I am not getting enough feedback, at the moment. As I want this book to be about real people and their stories. If anyone would like to discuss this with me and contribute you can e mail me at athenabrady1@gmail.com

What resources do you find most valuable when writing your books?  (i.e. internet pages, directories, literature)

I think the best resource any writer has is their readers and fellow writers. It is from them we begin to grow;  to realise what works and what doesn’t. They can lift our spirits with a few words of encouragement and spark that creativity within us all. The internet is a good source to find out things but I think you need to be discerning and research your subject well. Life is a good source of information; we humans are very complex beings. We can all learn a lot from reading and observing the skills of different writers. Writers have to read that is one of the most important ways, we hone our craft.

Do you have a final message that you would like to give your readers and potential readers?

My message to my readers would be follow your dreams. Do a little each day to take you closer to them. Don’t worry what the world says; people will always have opinions, on what you should do with your life. Follow your heart, find your joy and share it with others. For those people who follow a difficult path or who are in pain either emotionally or physically, believe in yourself. The only thing that ever holds ourselves back is us. We are only here for a short time so enjoy your life.

Thank you for being so kind to take part in my first author interview Athena.  I wish you the best success with your books and it has been fascinating to get an insight into the inner workings of you as an author. 

That is about all from me for now folks but I will be biting the bullet very soon and posting some of the work I have been doing up for you to have a look at and give feedback if you so desire.

Until then Stay safe and Keep Smiling!

“Broken” by Athena Brady which will be released in early 2013 is a true story.

This is Susan’s story of her journey from despair to healing. Susan begins to experience a feeling that leads to childhood memories of sexual abuse in middle age. Memories she has no recollection of, that begin to haunt her in the present. She embarks on a journey of discovery, which challenges everything she thought about her life previously. There are times she thinks her dark night of the soul will destroy her and all her closest relationships. Once she has opened Pandora’s Box, it cannot be closed until she has come full circle. This book is a gripping, tense and sad narrative that you will not be able to put down, until you have finished it. A must read for those who dare to explore the grey and darker areas of life.

Related articles

• November 2012 Athena Brady’s Book Reviews
• Would you like a free review for your book?

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Yesterday was one of the worst times for feeling cold in my life.  We were heading to the SWAN North East get together for Christmas at the Alan Shearer Centre in Newcastle and we were really looking forward to it.

Firstly, we had to navigate the path to get to the car which we didn’t realise was covered in a film of thin ice and it almost had me flat on my back when my walking crutch slid out from underneath me.  Almost simultaneously someone further down the path slipped and hit the floor with a thud.  Luckily they were fine and I managed to get into the car without breaking my own neck as well.  It was so cold though.   It was the kind that seeps into your bones and makes you freezing cold from the inside out.  Not even the car heaters could touch how cold my ears, nose and cheeks had become.  It got me thinking about when was the worst time I had felt cold and that was when I lived in a house with my mum and sister in the Fairways Estate.

It was one of those houses which had the traditional outhouses but the outside toilet had long been put out of use, nothing was powered by coal anymore so they had become storage areas for bikes, tools and all the other rubbish that you accumulate in a house.  I would hate to think how bad it would have been to use the outside loo in the freezing cold weather we get here!  Anyway, the house was fairly large with 3 bedrooms and a bathroom upstairs and a living room, kitchen/dining room downstairs which had a passage leading to the back door and the rear garden.  The house was in fairly decent repair apart from two things,  the first being the hideous wood panels that lined the wall of the kitchen/dining room.  They were horrendous.  You know that typical 1980′s style ‘fashionable’ panels and they sat about a foot off the actual wall surface so it made the room smaller than it should be.  The second thing was the windows.  They were the really old single glazed kind of window which was divided into squares but they had another key thing wrong….they didn’t close properly.

The windows did close to a certain extent so that you could lock them but for some reason the frames were a little warped and  they had large gaps that would run around them.  This  meant that the outside temperature often dictated the inside temperature of the rooms.  We were having a really cold snap one year and that meant the cold air would seep in through these gaps into the rooms.  I was about 12 or 13 at the time and was doing what most teenagers do, hibernating in my room.

I vividly remember waking up one morning and I could see the breath coming from my mouth as I exhaled.  Looking over to the window I could see the ice that had created a film over the panes of glass and it had a distorting effect similar to that of a bathroom privacy window so nobody could see in.  It was only as I got closer to it that I realised it was on the INSIDE of the window.  Yup, the room was so cold the inside of my window had frozen.  I knew I had to get out of bed to go and warm up in the living room which was the only room that seemed to retain the heat.  Fortunately, by this point I had developed a system of getting dressed with minimum exposure.

It was a shuffle to the underwear drawer and wardrobe with the duvet wrapped tightly around my body.  A darting hand grabbed whatever clothing I could get my hands on and then it was a quick shimmy (still wrapped in the duvet) to put them on and finally a sprint downstairs to the warm air of the living room. Ten minutes by the fire was enough to warm you up and banish some of that lingering cold.

It wasn’t just the bedrooms that were cold though, imagine getting a bath in those conditions!  I think we all had the quickest baths of our lives in that house, never more than a good wash and sprint to get into bed or get clothes on so that you didn’t get a film of ice on your extremities. (I just laughed out loud thinking about icicles on your ‘you know what’.)  The kitchen was pretty bad as well.  I can remember boiling a kettle to make tea or coffee and holding my hand above the steam, not too close of course, to try and steal some of the heat to carry the cups back into the living room.

My mum had an accident due to the cold one day though when she was cooking something in the oven.  She had taken the grilling pan out of the hot oven and put it on the worktop.  She didn’t realise she had touched it with her skin until she tried to pull away and found she had slightly stuck to it and burnt herself.  It was that cold there was literally no sensation in her hands.  Thankfully there was no permanent damage, but it just goes to show just how bad that house really was!  Thankfully I wasn’t there for too much longer but I can honestly say that I don’t think I have ever been as cold as that any other time in my life.

When in your life have you been the coldest?  Was it a certain situation or a certain place that you can remember?  I would love to hear yours so drop me a message and let me know or write a post on it and I will stick a link up to it here.

Until next time folks,

Stay Safe and Keep Smiling (Keep Warm as well).

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Hello there folks, I thought that I would write a post about having an undiagnosed child and the support (or lack of it) that we have been able to find for our family.   Nobody ever seems to be forthcoming with this kind of information and it is something that is vital for any family who was going through a similar situation as the one that we deal with on a day-to-day basis.

When Pretzel was officially determined as disabled, we were given no information on any kind of support groups, families or any other kind of services that could provide us with support, guidance and help in dealing with the news. Even now, because Pretzel has no official diagnosis, help can be sporadic and also withdrawn for any number of reasons, whether it be funding or that she did not ‘ fit the criteria for their charity to be able to help.’

There are a number of organisations local to where we live who attempt to provide day trips and outings, play areas and other recreational activities for disabled children, however, not all of these places or activities are suitable for children who have extensive special needs or those who do not like busy and noisy environments. This is the reason why families with children like Pretzel often feel isolated, cut-off and that they are dealing with their problems on their own.

This is why the idea that Swan UK has had of creating separate groups for each area of the country (we fall under the north-east category) means that families local to one another can get together in a social and caring environment which caters for all of the children and their particular needs. My family recently attended a North-East get-together for a picnic in a local park and it was fantastic to get to know some of the faces behind the forum names and also meet the children and let them play together with no form of judgement or ‘sympathetic’ looks that make the children and their families very self-conscious.

It was amazing how quickly the children engaged with each other and also how quickly the families started talking to each other about all kinds of aspects of caring for the children but also everything that they like to do that isn’t involved with caring for the children. This last point is probably the most important because when you deal with children with complex medical or physical needs can be very tiring, it can bring your energy very quickly and can often lead you to use shying away from social interaction of any kind with anybody including other members of the family and friends.

It is saddening thought to think that there are not more places but can offer this type of help to families in our situation but it makes me feel hopeful that organisations such as Swan UK can provide such an opportunity for children and their families to do activities together but in an environment where there are other families experiencing the same situation the same worries, the same anxiety and often the same opinions on how to get through the toughest of days that others who are not in this situation can find difficult even to imagine.

It is funny to think that a network of people who’ve never met each other, or, who have had very limited contact with each other, can be so close to each other as a family. Swan UK has a fantastic group of members who send birthday cards, get well soon cards and who offer words of support to each other through the good times and bad times 24 hours a day, seven days a week, 365 days a year.  The sad thing about this is that this type of support relies on charity and donations and is not something provided by the government. It often demeans carers and also the people they care for to have to rely on charity to be able to purchase essential equipment, services and facilities.

I do hope that Swan UK managed to secure the funding for these local get-togethers as it has been the first time that my family has been able to go out and enjoy themselves without any kind of ill feeling or embarrassment to simply ‘be who they are’ and be understood by other people’

We have another meeting on 1 December this year where we will be attending the Alan Shearer activity centre in Newcastle which has the facilities to allow our children to play in a hydrotherapy pool, ball pool and soft play and a sensory cave together.  This will probably be the only opportunity for our children to experience this kind of phone over the Christmas period as it is often difficult for us to organise all of the essential things that we need to be able to take pretzel out to enjoy these activities on her own.

If you would like to help out Swan UK and support their wonderful work which includes these types of days out and activities for children like pretzel to enjoy, then you can donate at: https://uk.virginmoneygiving.com/fundraiser-web/donate/makeDonationForCharityDisplay.action?charityId=1002602&frequencyType=S

If you do make a donation then please could you please comment in the Message Box stating that it did for Swan UK. That will ensure that your donation gets to the correct part of the Genetic Alliance.

Thanks for listening folks,

until next time Be Safe and Keep Smiling

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