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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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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.

bjork 3

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.

bjork pic

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

Then this happens …. 

My mum had been looking after Arlo for us whilst we partied like it was 1999 two hours away in London. All was ok the night went without a hitch and for a short period of time type 1 diabetes wasn’t the only thought in my head, I felt relaxed and was having a great time. I fell into the door in a drunkern stupor around 3am a happy drunk . 

A couple of hours later I woke feeling the pains, aches and cringes from the night before. Chris was on his way to work and my mum was still here. The sky was blue the sun was shining but my head was a big black grey cloud. 

I suggested to my mum that she take Arlo home with her and we could try a sleepover. Arlo was desperate to go he loved going to nannys and since September had not been able to have sleepovers. Mum was more then capable of managing and we needed to try it at some point so why not now I thought. 

I changed the cannula packed his bag and bombarded mum with enough information both our heads were going to explode. Off they went. 

I spent the day lying on the sofa the pressure was off I didn’t have to think about diabetes, didn’t have to count carbs and manage a pump  for a day.  Regular updates from mum I knew his levels were creeping up. I put this down to excitement at being at Nannys . 

5pm came and I still not moved from the sofa had managed to watch two movies and the new episode of Line of Duty I was feeling suitably relaxed. Chris was home from work, the plan was to get takeaway  and watch a movie. 

Then mum called, “Arlo’s levels are 25.6 with ketones at 0.6!!” Ok I thought not a problem we can do this . Lots of water and check in one hour. I looked at Chris who was looking at me with a panicked look on his face saying “this is why we quit London ! We are two hours away from him !!” 

An hour later and his levels had not changed. Mum was going to have to change his cannula and give him some insulin via the pen. Having never done it before and seeing Arlo on FaceTime jumping around and acting hyper I knew this wasn’t going to be easy. So one very fraught FaceTime conversation later with our diabetic nurse on the other phone I  talked mum through a cannula change. The new one was in and the old one  removed clearly bent  at tip. For eight hours or so Arlo had not been getting any insulin. 

Having seen the bent cannula tip for myself I felt slightly relieved that the problem had been solved,  now our main concern was Arlo crashing so low because of the amount of insulin he had. Trying not to frighten Arlo or mum we calmly said check in an hour. Away from FaceTime Chris was pacing the room  and I was mentally getting myself awake and alert ready to drive to Milton Keynes to be with Arlo.  

Hour later mum rang “Victoria he is now 29.9, I’m bringing him home.” 
Coming to a compromise we arranged to meet in the middle at Arlo’s God mothers and then stay at my sisters. It took an hour to get there. Having spoken to Lorraine our Diabetic nurse enroute I had a plan In place. 

Arriving to a traumatised mum who kept saying “it’s all my fault I’m sorry ” and a hyper six year old.  We got to work. Another two units by a pen and another cannula change ( the third today) we could see that the cannula had yet again kinked at the tip. 

By now it was 10pm. I was blaming myself for taking the eye off the ball and allowing myself a day off to have a hangover and to not think of diabetes. I felt awful, mum felt traumatised and Arlo had gone through three cannula and two injections today. 

It was nobody’s fault though. I realised that I can never take a break from diabetes and Arlo can never have a day off. Type 1 diabetes is here for life and it doesn’t switch off when you need a break no matter how tired or hungover you are. Arlo can never switch off from diabetes and try as we might to ensure that Arlo does everything he used to before type 1 came along, sometimes the truth is there may be things such as sleepovers at nannys, parties where we leave him, play dates at Friends houses where we may have to wait a little longer. 

Type 1 diabetes sucks and it’s not going away we are just going to have to learn to live with it and hope that when Arlo is old enough he will understand why sometimes things just didn’t work out as we wanted them to. 

 

Set change or Sewing?

 

Until today set changes for the insulin pump would be up there as one of the most stressful activities of my week. That is until I finally got round to sewing the badges on Arlo’s beaver jumper. It has been a task that I have put off.  Each week we would  get to Monday Beavers club and each Monday at five pm I would look at Arlo’s badge free Beaver jumper, pull a face, mumble a swear word and send a memo to myself to sew them on for next week. Here we are at Sunday and his jumper is still badge free! Off to mums I grabbed the badges and the jumper and thought how hard it can be I can sew them in the car or at my mums…..

Beaver Uniform v5

HOW WRONG WAS I!!!!

Firstly said badges need to be placed and sewn in a certain place on the jumper. I clearly can’t sew as three hours later and a lot of swear words mumbled I had rather badly managed to sew on only four badges! Those three hours included me sewing the arms together and then having to unpick it, and then putting the badges on the wrong arm! Then there is the fiddly tiny badges you need to sew on. At one point I could be heard saying to Arlo “Is Beavers something you really want to do?” Doing a quick google of the amount of badges that one can actually collect I started to hyperventilate at my future of sewing badges. I did ring my friend to ask if there was some secret Beaver badge tip that we were not privy to being the newbies. Sadly she replied no it’s sew or nothing!

Medtronic-Mio-Infusion-set-1I can do finger prick tests on Arlo, changes his cannulas and fix his pump. I have worked in some stressful and difficult times as a nurse and in all these situations have remained calm. So why is the task of Sewing badges onto a jumper in a neat not wonky but correct way starting to feel more stressful than insulin pump set changes and finger prick testing in the dark at 2am! It was also taken a lot longer.

All done and feeling relived and proud that I had completed task  all without asking Mum to do it. I wasn’t expecting that the next day when Arlo all dressed and ready to go to Beavers that Chris would turn around and say “Would you be offended if I took some of them off and asked my mum to sew them!!”

“No! Of course not.” I Said through gritted teeth.

Until they invent iron On Beaver Badges I’m leaving all beaver Badge duties to the experts i.e. our mums!

 

 

 


 

 

 

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

 

The one about the toilet

All that talk about toileting and bodily functions reminded me of the Radar key.

 

For those that don’t know The National Key Scheme (NKS), previously known as the Royal Association for Disability Rights (RADAR) Scheme, was developed because some public toilets designed for disabled people had to be locked to prevent damage and misuse.

 

For those that don’t know The National Key Scheme (NKS), previously known as the Royal Association for Disability Rights (RADAR) Scheme, was developed because some public toilets designed for disabled people had to be locked to prevent damage and misuse.

It is a large, conspicuous, silver-coloured key that opens more than 9,000 accessible toilets in the UK like magic.

 

A couple of weeks back we had a rather exciting day out which involved party like food and party like excitement. Parents of Type 1 will know that anything “party like” brings on unimaginable panic and the feeling that you’ve lost control and your now ten steps behind instead of a few steps ahead!

 

So there we were in our party like environment and Arlo who is manic with high sugar levels needs to pee. We are in Selfridges at peak Christmas shopping time and the queues to the toilet are out the door on every level. We struggled to find somebody to open one of the disabled toilets which would have been ideal for us. Luckily Arlo didn’t have an accident and we managed to get to a toilet next to a cafe and stayed put until levels were corrected and the risk of toilet accidents was no longer an issue.

 

When I was relaying the story back to a friend she mentioned the RADAR key. I had never heard of these keys and upon doing some research kicked myself that had we had one of these keys the scenario that had happened a couple of weeks back would have been much more easier to manage.

 

 

Please click on link below for more information on the RADAR scheme.

https://crm.disabilityrightsuk.org/radar-nks-key

http://www.bbc.co.uk/news/blogs-ouch-22602836