Busy, Busy Bees!

Posted on November 29, 2012 by Sleepless In Newcastle

Heya folks, we have all been busy, busy bees in my household recently.

We have all been doing well, except for my sleeping but that is always off so no big news there. I have had some fantastic news today about my Type II diabetes….. I have it managed and under control with NO MEDICATION! This is coming from a guy who, at the beginning of this year, thought he was going to have a heart attack in the next year or so (as my doctors informed me) and was at higher risk of cancer, stroke, heart problems etc.

Top right – 315 lbs, top middle – 308 lbs top right – 301 lbs
Bottom right – 301 lbs, Bottom Right – 294 lbs

I truly started my weight loss journey properly at the beginning of this year in January when a new Slimming World class opened up in my area. I decided to go to the classes just to keep me focused and motivated at first, but even before that I had been desperately trying to lose weight. I am 5 feet and 8 inches tall (a shorty for a guy I know) and at my heaviest I weighed a whopping 315lbs….yes I shock myself now when I think of it! This was through a combination of back problems, pain, inability to do exercise and also some pretty lame excuses really. I never used to pig out on food anymore since I got my binges under control but by then the damage was already done. I did eat the wrong foods when my emotions got on top of me and that was really hard to break away from. I have always used food for ‘comfort’ eating which again, was another habit I found hard to break.

I can say now VERY HAPPILY as well I might add, that I am a massive 78lbs lighter than my heaviest weight and I have lost a whopping 16 inches from my waist! My sister came around the other day and I grabbed my suit I wore last year and put it on and showed her. I was lost in it and I think she got a bit of a shock from it as well. It felt great to be able to ‘show off’ how well I have done but I still find it hard to accept the credit……yet. I don’t want to get too complacent because I still have a fair bit more weight to lose to be at a healthy weight for myself. I don’t want to think that I can sit back and relax and not keep striving for that ultimate goal. In two years time it will be my 15th wedding anniversary and I would love to be able to renew our wedding vows looking like a million dollars. Zanna has been doing fantastically well in losing herself but she really shines at helping me with my loss. She puts up with the grouchy, sleepless monster that waits to lynch her in the mornings sometimes and she puts up with the indecisive, picky, annoying, stressed hubby when he cant figure out what to eat for dinner. It is just another way in which she makes my life a brighter place and I would not be anywhere without her.

So, what else has been going on? Well I have been tapping away at the keyboard loads writing creatively for university and I am having so much fun and I have been reading books, plays, poems etc. like they are going out of fashion. I will hopefully get chance this week to write the piece for Natalie from turkishtravelblog.com after she gave me the words yearning, historic and masterpiece.

We have also been doing a bit of work with Addison Street Carers Association who organise events for the children who use the local short break care unit that our daughter, Pretzel, uses. We have had a spooky Halloween party, we had some of the members in Newcastle Keep doing a sponsored ghost hunt, we have the Christmas fair and Christmas party coming up this week as well. It should be a great time and we always have a good laugh and a lot of fun with the kids and staff from Addison Street as well.

We are also meeting up again with some of our lovely SWAN North East buddies at the Alan Shearer Centre in Newcastle this Sunday which will be fabulous. It is so nice to meet up with other families who can fully understand how intense and tiring caring for an undiagnosed child can be and just how little help is given to us because our children don’t fit a check box. There is no judgements, no comparisons and no prejudices in the group, just a lot of kids and adults getting together and enjoying a good old chin wag!

So by the time we get all that out of the way we should be heading towards Christmas Day itself and then into the New Year. I am starting to think now about New Year’s resolutions after the success of my weight loss one this year. Obviously I will be keeping that one carrying on but it would be nice to challenge myself with something else as well. Maybe write a novel by this time next year? Maybe to get more involved with SWAN UK? Maybe to do more exercise and have more family time together? Who knows, there are so many!

Have you thought about resolutions or goals you want to set yourself for the upcoming year? Tell me about them because you never know we may be able to do it together and spur each other on!

Okie dokies, until next time folks,

Stay Safe and Keep Smiling!

SWANderful days out!

Posted on November 22, 2012 by Sleepless In Newcastle

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

Haiku: getting creative

Posted on November 19, 2012 by Sleepless In Newcastle

Hey again folks, I thought I would let you see some of the haiku that I have been writing as part of my course in Creative Writing. I have been trying to do at least one per day on totally random subjects that happen to come into my consciousness so they are a little strange at times.

Sorry the posts haven’t been as frequent as they have been in the past but I am battling with new medications and for some reason my brain won’t allow me to sleep at all lately so I am suffering all of the side effects that go along with that as well. A big thank you has to go to my wife and the kids though as I can imagine I am a complete nightmare when I am tired, run down, ill and grouchy. I love you girls loads and thanks for putting up with Mr. Grumpy-chops!

The time I have been wide awake has been spent reading loads of books on loads of different subjects and in loads of different styles and genres. It has made me realise just how far I still have to go to be able to write as effectively as I would like to be able to. It has been a thoroughly enjoyable experience so far though and I will try and share what I can with you lovely folks when I get the chance.

So here we go with a selection of haiku written by yours truly (oh, a Haiku is a 3 line piece of prose that has a 5 syllable, 7 syllable, 5 syllable line structure):

(Haiku)
俳句

(A rainstorm)

Swirling, Twirling Round

A fresh wind blows through my mind

Rain pours down ideas

(Break time)

Hot, Steamy, Milky

Sugar sweetens up the brew

Crossword time at last

(Cheesecakes)

Sharp, Fruit filled

Buttery biscuit bases

Creamy Goodness, Yum!

(Daughter playing Minecraft)

Clicking, Tapping fast

Block after Block building more

Will the game end soon?

(Werewolf film on tv)

Pitch black, moonlight skies

Changing, morphing, quite close now

Screams pierce cold night air

Books, Books, Everywhere

So many things I must read

Shh! Quiet time please!

Granted they aren’t anything spectacular or anything particularly deep and meaningful but it has helped me to look at things around me in a totally different light and it has definitely made a difference to the pieces I have been playing around with.

What I would love for you folks to do though is give me 3 completely random words or phrases that you would like me to write a short piece about. I will try to write a nice short descriptive piece about the story it formulates in my mind and then I will post it up here on my blog. If you really like the sound of it I can then look at trying to expand it into a longer story and see what comes out of it all.

So if you fancy having a go leave a reply for me with your three words and I will try and get something back up here withing a couple of days or so.

Let’s get creative together!

Until next time folks, Stay Safe and Keep Smiling

Creativity Journal

Posted on November 7, 2012 by Sleepless In Newcastle

Creativity Journal

I am going to let you in on what I have been doing for the past couple of months that has kept me away from the blog in the past couple of months. I have been keeping a creativity journal which means I am writing every single day on a wide variety of subjects.

I am studying creative writing at the moment through university and I have been having a blast with it. One of the things my course asks me to do is keep a writers journal. A writers journal is a book of observations, ideas, random quotes and pretty much anything else that has interested me or has popped into my head for some reason. It is a good exercise to get the creative juices flowing and it is also very therapeutic to empty my head of all of the things I would bottle up inside and obsess about for ages.

Ideas, Sharing and Blogging

So that got me thinking about my blog and what I could do to tie in both the things I have spoken about before and the creativity journal that I am keeping each day. I thought I could share some of the things that I have been writing each day and let you tell me whether you like/dislike them and it also may give me an idea to try and write some short stories or hopefully a novel!

I also thought about having a day where I will take suggestions from you folks of 3 different objects or ideas and then I will write them into some kind of short story. I reckon this would be a good challenge and it would get me into a good habit of writing and would also let me give you guys something that I have created just for you! I could try and use the few photography tips that I have been given to try and take some photos that tie in with the story that I have written as well.

Another idea buzzing around my head is to do a photography scavenger hunt, for those of you that blog, so we can share photos about our local areas and link up to promote each other. I think it could be great fun and I hope you guys are on board with it as I would love to see some of the places that you visit in your local area.

Sunset over mountains taken from the plane

This doesn’t mean that I am going to be changing the blog completely to talk about different subjects though, I am just hoping to include you all in some of the things that I like to do to relax when the pressure of my own pain and Pretzel’s disability get on top of me.

So what do you reckon? Are you guys up for putting your toes into the pool of creativity with me and coming on a journey? I hope so and I reckon we could have a good laugh along the way as well.

Until next time folks, Stay Safe and Keep Smiling!