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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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Six Months ….

 

It’s now been six months since that awful day back in September 2015.

A lot has changed since then. It’s been a week of reflection, tears, anger and smiles as we look back on how things have changed for us in six months. We’ve learnt a lot since type 1 diabetes joined our family about ourselves, diabetes and life some good, some bad….

 

  1. It doesn’t get easier as time goes on:

Type 1 diabetes in children changes daily. You can never predict when it’s going to happen or what is going to happen. After a night of testing you wake up and analyse your data go over the carbs, food for the previous day, wonder if you did something wrong or if illness played a part. The truth is that’s just diabetes and it will never settle.

 

  1. Pumps are not the cure of diabetes:

You develop a love hate relationship with the insulin pump. Its function is to keep Arlo alive and drip insulin into his body twenty four hours a day. It stops the need for injections up to four to six times a day, and it stops Arlo legs getting infected injected sites. It doesn’t stop type one being there and it doesn’t let you forget. Watching your child play and catching a glimpse of the tubing or pump, catching the eye of a parent or child wondering what is wrong that child is heart-breaking.

 

  1. Arlo is a pretty amazing person:

I make no apologies for gushing about how truly amazing Arlo is on a daily basis. We like every other parent used to fret about his behaviour, his hatred of doing homework, was he behind at school?  None of that matters now. Arlo has had to battle and deal with “grown up shit!” On a daily basis with his diabetes. He takes cannula changes and finger prick testing in his stride, he hates doing it but knows he has to. He knows now that if his levels are too low or too high come bedtime that we will be doing night testing. Arlo says that hypos feel like “I’ve got no bones in my body” and hypers feel like “I’ve got loads of gasses trying to escape from by body and all I can is run around and be manic to get them out!!”   He hates being called brave. When he is having a really bad day he sobs “it’s so hard being brave all the time mummy!” He inspires us every day.

  1. You have to let go:

Every day I want to keep Arlo at home to protect him. Every day we want to stay in our Peace bubble. But instead every day we put on our smiles and let Arlo know that everything is ok.  Arlo is bought up to be social, and to know that there is a whole world out there that is filled with family, friends and adventures. We say to him every day you can do whatever you want yet sometimes in the past six months we’ve not neseccarry been true to our word. Type 1 wasn’t part of the plan, neither was bringing up our boy in an environment where we constantly kept saying you can’t do that or having one of us constantly there to watch him when he was at afterschool clubs or parties. So little by little we’ve learnt to let go and trust Arlo & the people he is with.

  1. What matters is your health, family & friends :

Nothing else matters in the grand scheme of things. Since type 1 diabetes we have both left our jobs in London for jobs 10 mins away from where we live. We are close by to the school, and to Arlo when he is on play dates and we now spend most evenings eating dinner at the kitchen table the three of us at a reasonable time. We may not be earning big bucks but we are here for Arlo. We are despite everything very happy and ironically have found a much healthier, happier work life balance since type 1 diabetes came into our lives.

  1. There is Never a high five moment :

if you are lucky you may get a whole three days where levels have been good, carbs have been kind and you’ve not had to night but just as your about to high five and give yourself a pat on the back, sigh a big breath of relief something will happen and levels will go sky high or too low that dinner from two days ago that gave you perfect levels before and after is now making the levels go sky high.  Half an hour of PE doesn’t affect the levels that much last week but this week you’re having hypos for 8 hours no matter how much insulin you’ve given. A cut to knee, a cold with a slight temp … yep you’ve guessed it back to square one. Growth hormones that list is endless. When you’ve racked your brains as to why this has happened, you’ve gone through the list in your heard, panicked called Mrs L the diabetic nurse and Penny you have to come to the conclusion that this is diabetes and without no rhyme or reason it can change just like that.

  1. You become experts at making it look easy:

Every single waking moment we are always five steps ahead of type 1 diabetes. I’ve predicted and planned for the occasions where there may be food, the treats come out on playdates. The stares from other as we do levels and pump. The comments that you learn not to get angry about because people are not unkind they are inquisitive.  It is now an activity of normal daily living for us and even though we make it look easy it’s not.

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New Normal= New Friends.

I am 41 years old , have been in my job for past 10 years. I have lived in Dorking for the past 8 years. I have a very close group of friends, a husband, sister and cousin  all of  whom I am  lucky enough to  consider my best mates. I guess you could say I am pretty settled, happy and content with what I have.  When Arlo was diagnosed it felt like my whole world had just ended and a new one popped up to replace the old one. Everything looked the same but it was different, My settled, happy content life had been taken away from us. Or at least that’s how I felt in those first couple of weeks following diagnosis. I felt very isolated, very alone. The day after Arlo was diagnosed two friends texted me saying they knew someone whose child also had type 1 diabetes and did I want their contact details.

I remember reading the texts and even though at the time I was still trying to get my head around everything. Just knowing there was other parents out there made me less lonely.

One of the mums – Penny lived in the next village to us. Like us Penny had a six year old girl with type 1 diabetes, unlike us she also had a twelve year old boy with type 1 diabetes!

Numbers and emails were exchanged and then three weeks later we arranged to meet.

I was slightly nervous to begin with. I had no idea what the outcome of our meeting would be. Weather it would make me feel better or worse about our situation.

We clocked each other and before even speaking Penny just grabbed me and said ” I just need to give you a hug and tell you it will get better.”

I spent most of the time switching between sobbing , ranting and staring in total bewilderment as Penny passed over to me a Smiggle case ( see end of post for information),  snippets of information, and a whole heap of paperwork  to help us when Arlo went back to school all of which Penny had compiled herself to help and support the school.  Arlo had just gone back to school for mornings only with 1/2 hourly telephone calls from us to check everything was ok.  I had not even contemplated how we were going to mange the school and work when Arlo needed to go back full time. Penny motivated me into looking at the future and to start thinking about a back to school plan.

That was six months ago and Penny and I still meet as often as we can. I didn’t know it back then but Penny much  like Mrs  L- Arlo’s Diabetic Nurse  are two people who have come into my life and have become friends as well as a huge support .  Being thrown a curve ball that changes your life path makes you think.  Had it not been for Type 1 Diabetes our lives would never have crossed. Had we met in different circumstances say at school / school clubs / though our kids I’m pretty sure that we would have connected and become friends.

Perks of diabetes #1 = New Friends smiley face

Smiggle Pencil Cases. 

Penny introduced me to the world of Smiggle. They are pencil cases that make excellent cases for kids and diabetes equipment. They are perfect size for kids to carry or to keep in there school bag, they are also perfect size to chuck in your bag when you are heading out.

You can easily  fit into your bag :

  • Blood Glucose machine
  • Finger pricker
  • Test Strips
  • Diabetic levels diary
  • NOK and Hospital information /medical alert information
  • Insulin pens x2 in our case it was novorapid & Lantus
  • Glucose sweets and glucogel
  • Carton apple juice

These are the soft cases which are £12.00

http://www.smiggle.co.uk/shop/en/smiggleuk/pencil-cases