Sweet Bitter Survival

This morning at 10am, Carbi went to heaven.

After a long pain filled battle he is finally resting and pain free.

We love you Carbi and we miss you already.

I would like to share with you all about two very close and dear friends of mine and Lilly’s. The lady in question is Kate and the bravest kid I know called Lance. Both of these people graced our life about a year ago. Through this time me, Lilly, Kate and her amazingly resilient son have grown close. The ordeals Kate and her son face each day amazes me and from talking to Kate I have fully grasped the difficult time faced by people who care for not only people with diabetes but anyone with a medical condition needing care for.

Lance is a seven year old who sufferers from diabetes. Lance also suffers from coeliacs. The combination of the two makes it difficult and I fully sympathise with Kate.

Lance is the smartest chap I know, I can imagine one day soon I will be asking lance answers to questions that I can’t answer. Through Kate I have learnt more about a condition I have had for 10 years.

Kate and Lance write a blog called “Why Did the Insulin Die in my Pancreas?” please take a minute to check it out.

I have been thinking about myself in great depth lately. This is something new to me. I have spent so long, as long as I can remember thinking of others over myself. It is who I am. However I need to shift some of my thought of others onto myself. Thinking of things to come and things that have tainted my past.

I have to admit though, I don’t feel as sick as I do on paper, and maybe that’s a good thing. I see my condition on paper and I see all the auto immune aspects associated with it and I think “wow that sounds terrible” but I don’t look at the condition and say “that’s right, it is terrible”.

Is this a bad thing to think though???

It is both, I think its good for me to not feel burdened by everything affecting my health but I don’t want to sound like I think I’m coping perfectly with it and that its not important to me.

Today finds me full of a cold and feeling miserable. I am probably over the worst of it so its not too bad.

I would like to share with you all a quote that says what I feel. Well my feelings today at least.

“Within each of us lies the power of our consent to health and sickness, to riches and poverty, to freedom and to slavery. It is we who control these, and not another. “  Richard Bach (Illusions)

Now to me this says to me that no matter what happens to you, or no matter what is expected of you, the only person who decides the fate is the person it affects.

Tonight I am going to write about a thought I had when I couldn’t sleep last night. Last night I began a train of thought about competition. I began to connect competitive sports for children and computer games. Society has decided that computer games [(especially ones of a violent nature) with the exception of educational games] are inappropriate for children but playing competitive sports like soccer is ok and actually encouraged. Now I can agree that physical activity for a child is important, especially for young children, teaching action re-action, for example “I kick ball, ball moves”, however in regards to a computer game a child will get similar action/reaction with “I press button on the left/character jumps”.

Now to come back to my connection between video games and sports. Both activities are beneficial. Computer games can promote good hand eye co-ordination, as does sport. Both activates have competitive attributes, to explain games will more than likely have a goal or objective as do most team sports. Admittedly active sports played in a team will encourage socialisation but most games now days have the option to be played as a group and I know from recently purchasing the Xbox 360 that one can play in a group against or with people from all around the world.

I have read an article that told of some video games have an ability to make the player become so engrossed in the game that the player’s heart rate will increase and breathing rate will rise causing the player to get an almost work out sitting in one spot. I can agree to this from experiences playing halo and battlefield 2 for example. These games will make me jump and re act to the game. I have not yet taken my pulse mid game but I can ensure that I will next time I play.

In addition, I know that the Nintendo Wii has interactive games like tennis and bowling, I do not have this console so this is only from what I can gather from television commercials and in store advertisements. With this in mind if one could jump up a little and move arms about will add to the above mentioned benefits associated with computerized games.

With this in mind playing a computer game offers socialisation, exercise, promotes hand eye coordination and also offers this with little or no risk of physical injury that could happen from being a part of competitive sport.

However, with this article in mind I would like to add that even though playing video games can provide the player with all these benefits I would like to add that sitting and getting a work out in a lounge chair, sports enable the player to stretch muscles and move muscles one would not be moving/stretching sitting still. Happy sports!

Today finds me back home, with my wife and our two puppies. Liz and I had a wonderful time in Hobart, we saw some interesting things and most importantly we got to spend lots of time with each other.

However….. whilst driving from Hobart through the middle of Tasmania back towards the north coast where we live I began to ponder our future. I had plans about our future, mine and Liz’s, I had a fairly good idea where I wanted to be in 1,5,10 years. Because of the big changes in my present medical state has caused me to re-evaluate certain aspects of my/future.

However….. despite the fact that some aspects of the foreseeable future have changed, there are some important and fundamental aspects that have not or will not change.

Liz has been so supportive and helping me a lot, she has been telling me how to deal with it and basically what to expect. Although it’s a big change and its is new to both of us so we both don’t know what exactly will happen but we know what to expect.

Eye sight…. Mmmmm…. Well its something used on a day to day basis but… does one need it??? I mean eye sight makes life easy but doesn’t make life… I challenged who ever is reading this to try and perform a task that you normally use your sight without it. Now I am not suggesting the task you perform with your eyes closed is driving or heart surgery but just something simple like getting dressed. If you choose dressing try it from start to finish, including choosing items from the draw to tying up shoes, including finding out which shoe goes on which foot. Now reading it sounds simple enough but try it and see if it’s still seemingly simple.

But on another note attached to the above mentioned I don’t want to come off a charity basket… I can still see and with any luck will do for months… years to come.

Today finds me in our capital, Hobart. We ventured down to the south of the island by our selves and met up with Lillie’s parents and aunt and Nan. This afternoon when unpacking our stuff from our car I stood and marvelled at the enormity of the bag of medicinal supplies we brought with us. If anyone looked at this bag and knew of its contents one would think we were planning on staying away for a month, however we will only be away for 4 days. To describe how large this bag is it would be about the size of two pillows side by side.

Today we had to leave our two “boys” in a kennel whilst we are on this trip, for those who don’t know or anything about our dogs they are ex diabetic assistance animals. I have a Chinese crested and my wife has a Shetland sheep dog. My boys are my babies.

Now in the car coming down I began a train of thought. For years I have noticed dogs and how they will have behaviours that they seem to be born with. We had Carbi , my dog, from birth and for a while he only associated with other dogs at the vets or on walks. Now I remember Carbi would urinate on posts and growl at people coming to the door and burry bones. Carbi began to do these things without seeing another older dog do them, and what really baffles me is the burring of bones, Carbi would always have access to fresh foods and bones, now why did he feel the need to bury a bone for a later date??? Then I sat in the car thinking about the different behaviours that are bred into dogs and then my thoughts shifted to what sort of behaviours are bred into humans? I thought of things like people will have a block of land that they will defend from others, and I also thought back to cave man times when the man would claim a woman for himself and defend the woman in a way similar to the way he would defend the block of land. And my thought also began to come up with prisoners and that society will refer to prisoners as animals, and I began to think of the pecking order that animals endure to determine the ranks of the members of the group / pack and that prisoners will squabble and fight to obtain similar ranks. Now I have never been in prison and all I have to go off is the interpretation of prison from what I see on the tv. Now before I continue I want to add that I do not always believe what I see on the tv. In prison movies there are shots of gang rape and that got me thinking of animals will also dominate another animal in a similar way. Thus identifying the correlation between animals and prisoners.

On another topic, still in relation to human behaviours, is the way humans will strive to fulfil the basic needs. I am speaking directly about Maslow’s hierarchy of needs. Of the top of my head I can’t recall all of the needs that a human needs to fulfil / obtain but I do know that the basic needs are food, water, shelter but the needs extend into social acceptance and acceptance of others. I will have to research the list of needs outlined by Maslow, but I am beginning to wonder what of the needs (if any) could be needs bred into us as humans. Social acceptance isn’t something humans need to function but it is something that humans need to get by in life on a day to day basis.

To whom it may concern and to whom it may interest. I am going to write to you all about the life I have and the effect it has on me and the people I love.

I will start by telling you all that I am a married 24 year old male living in Tasmania, a state of Australia. I was married to a lovely lady in July 2005, her name is Elizabeth, but she prefers Liz, my name for her is Lilly though.

Lilly and myself bought a house in Tasmania about 23 months ago, we moved into this house about 11 months ago, the time between me and Lilly buying this house and moving into it we had it rented. However we have lived in this house for less than a year and we already have to sell it. They say that owning your own house is the great Australian dream. Well with that in mind I guess its safe to say that my medical condition has robbed me of this dream, for the time being at least…

I have a very rare condition called autoimmune polyendocrinopathy candidiasis ectodermal dystrophy. Abbreviated to APECED, or APS 1. To describe it in a few words it’s a pain in the neck. But they say life is what you make it and I fully intend to not be just a sufferer of APECED, instead I want to be known as James, a 24 year old male who has APECED.