Monthly Archives: April 2016

Walk a mile in our shoes…..

Diabetes Blog Week

This week is Diabetes blog week. This runs between Monday 16th to Friday 20th 2016. The aim is I & hundreds of other bloggers of all things diabetes write blogs every day about certain topics.

“Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?”

So where do I start there are many important messages and issues that I would like to get across in my blog. I guess for me its getting people to understand the complexity of living with the condition and for people to stop commenting on all things type 1 when you haven’t lived with it or chosen to walk a mile in Arlo’s shoes or our shoes.

We’ve learnt to adjust and live with type 1 diabetes from the outside looking in we majke it look easy . What I have found the most difficult to adjust to is people’s attitudes and comment’s to type 1 diabetes. From work colleagues , children in playgrounds , family members,&  best friends we’ve  learnt  to bite tongue’s, take a deep breathe and move on.

An example of this happened a couple of weeks ago when I was on a course at work .

The subject of kids came up and then I mentioned Arlo.  One of the girls I was talking to started talking about diabetes wanting to know the symptoms were as she was concerned that her son may have it. She then turned around and said:

“Well you know I was worried for a bit but then I thought my son is fit, healthy , doesn’t get ill, not overweight and doesn’t eat sweets or drink fizzy drinks so you know he can’t have it.”

I was gobsmacked but not surprised  this isn’t the first time I had heard words to this effect.   It does happen people can say some very hurtful things without actually realising they are being hurtful.  I can understand it’s not everyday you have to deal with type 1 diabetes and with campaigns such as Jamie Oliver’s or TV programmes citing that sweets and diet give you diabetes you are going to have raise your own awareness and try to not get angry.

Since Arlo was diagnosed our support  network of friends  has reduced considerably and where I was once a social butterfly with Arlo flying around seeing and meeting new people we now tend to stick to a very tight knit circle of friends who have been there with us from the outset  and have walked a mile in Arlo’s shoes and mine. Arlo needs to be around people he can trust, is comfortable with and can speak to at any time If I am not around. Arlo also just wants to be normal. I am at my most proudest with Arlo when I hear him talking to other children in parks. He gets stared at and he knows this, he tells me so. Some children are brave enough to ask him what he has sticking out of his arm or want to know what the tubing is Arlo tells them he is like Iron Man, the children listen with an unsure look on their face. Some kids have tried to kick him where the pump is and others have tried to hit his arm where the cannula is .Thankfully not a lot but enough for Arlo to tell us about it, the look of shock on our faces says it all . Arlo simply shrugs his shoulders and happily says “Its ok mummy I just tell them I have diabetes and I’m iron man or its my phone !! ”

I started off at the beginning of this post saying the most important thing to us was changing peoples attitudes , raising awareness amongst friends. That’s not entirely true I want Arlo to have to continue having a  positive attitude to everything and not just type 1 diabetes. I want him to continue talking to us about what makes him happy, sad & what makes him laugh or cry. Above all I want Arlo to read this blog when he is older and say to himself.

“Yeah I got type 1 diabetes but I had a really happy time as a kid.”

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Hyper Ballad

Its been a week of hypers, hypos, new pumps and sick bugs in the Peace household. Its been a tough week for all of us. The sick bug hit us Thursday evening and terrified us all when Arlo’s levels dropped low and were dropping instead of going up. We didn’t know what to do, we had read the sick day rules had the plan but when it came to it we all just stared at each waiting for someone to shake us and tell us what to do. That happened in the shape of  our Diabetic Nurse. Over the phone she told us what we needed to do, what to do if it all went tits up and ended  with saying “I’m keeping my phone on all night call me or the hospital at any time, you can do this!”

We did we survived the first night, without a hospital admission. Arlo spoke first, “Mummy we didn’t go to hospital!” then Chris spoke ” Well we did it, at least we know what to expect now, that’s that first out of the way.”

We did do it we were not quite out of the woods and didn’t come out of it unscathed. Arlo’s poor finger tips were covered in small blood blisters,  he now screamed ouch when we did a finger prick test due to having so many tests carried out during the night with the sick bug. Our heads hurt trying to work out where we were at with the pump, the insulin and the sick day rules.

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Hopefully next time we would be more on it and less terrified. A text from Penny who had years of experience being a parent of a type 1  made me think that all is ok and that it does get easier.

When things get a bit tough I  find myself listening to a lot of Bjork and Tori Amos. This week a little sleep deprived, fed up and angry at diabetes for what  Arlo had to go through the last week. I found myself listening to one of my favourite songs  Bjork Hyper Ballard the Brodsky Quartet Version. I found myself sobbing whilst listening to the lyrics. They seemed to be quite fitting to how I was feeling now and for the past 6 months.

We had survived the first blip but sadness and anger filled me knowing that this wouldn’t be the last time Arlo had to endure an illness and that there were going to many other firsts to get over.

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Hyper Ballad
Bjork 1995

we live on a mountain
right at the top
there’s a beautiful view
from the top of the mountain
every morning i walk towards the edge
and throw little things off
like:
car-parts, bottles and cutlery
or whatever i find lying around

it’s become a habit
a way
to start the day

i go through this
before you wake up
so i can feel happier
to be safe up here with you

it’s real early morning
no-one is awake
i’m back at my cliff
still throwing things off
i listen to the sounds they make
on their way down
i follow with my eyes ’til they crash
imagine what my body would sound like
slamming against those rocks

and when it lands
will my eyes
be closed or open?

i’ll go through all this
before you wake up
so i can feel happier  to be safe up here with you