Tag Archives: type 1 diabetes

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

Our Ven Diagram way of Life.  

 

I met my husband 12 years ago in a homeless day centre in London Victoria. We both worked there. He as a homeless outreach worker and me as the nurse. We have both worked in London all this time. Chris continued to work in the homeless day centre and I moved on to work In Islington.

We commuted to work most days,  me a two hour commute and Chris working permanent nights!  We managed ok but we were constantly shattered. We hardly spent any time together as a family.  It was all we knew and that was ok. We were never really big on spending every second with each other, we were like a Ven diagram. We all loved doing our own thing then meet in the middle every now and then & hang out. This works for us this is what keeps us solid. That is until we had an uninvited guest join the family in the shape of type one diabetes. Our old life didn’t work anymore, didn’t fit us or suit us. Anxiety was heightened on a daily basis for all of us when we were away from each other, especially being two hours away in London.  When Chris was on nights he wasn’t around, he hated it. What used to be fine was breaking us mentally, physically and emotionally.

It started with me reducing my hours and days in my job.  We  decided that spending four hours a day (on a good day)traveling to and from London wasn’t worth it anymore and money really didn’t matter, as long as we could pay the bills we would be ok. Chris continued working and struggling with his job and his shifts. We managed like this from October to January of this year. It was a pretty awful place to be not only were the Peace’s trying to adjust to life with diabetes we were trying to make our old life fit and it didn’t.  We both struggled, we hardly saw each other. Conversations became like handovers …“What are his levels.” “Has he had any hypos” “What has he eaten “.

We decided enough was enough I was going to leave my job in London and find a job in Dorking.  It wasn’t that easy though. As much as I know I needed to change my job, my job was part of me I had been working in Islington for ten years. My whole nursing career since 1994 had been in Camden, Islington or Westminster.   I had made lasting friends. I had spent the last ten years with my work colleagues. I loved my job and my team were part of the reason why I loved it so much.   Leaving London was a massive step for me diabetes or no diabetes.

I started searching for jobs and would find some excuse not to apply . But then one day I finally applied for the job that I had kept stored in my inbox , a job ten minutes from my house and Arlo’s school. The time between applying and getting shortlisted I had made up my mind this is what I wanted to do I was determined to get the job &  I  worked hard to get it. On January 13th I was offered the job! That same day sitting in our kitchen half excited half terrified at all the changes that had happened and were about to happen I noticed my husband. He had just finished working nights.

In front of me was man so tired so sad so broken.  This man wasn’t my husband.

“Quit!” I said

“I can’t do it anymore babe I haven’t got the strength.”

“Leave your job it’s not worth it we need you back with us.”

That was on 13th January 2016. Chris never went back to work in London.

Type one diabetes has helped us. Type one has made us look at our life and highlighted that we can make changes if we want. Had it not been for type one  we wouldn’t have done it, we would not have been brave enough to leave our jobs but we had to. Now when we are sitting at the dinner table eating dinner as a family we look at each other and say “Why the hell didn’t we do this before? Why did it take an illness to make us do it?”

I’m currently finishing this post whilst stuck on the underground trying to get home. There are severe delays and I’ve been underground without a signal for an hour now. I feel sick knowing I can’t be contacted, &  that I won’t be home for at least another two hours. Anxiety levels are heightened even though I know he is in safe hands and Chris is working round the corner now in Dorking. He now skips into work and skips home again with a massive smile on his face.

 I’ve got one more week of working in London before I start my new job in Dorking which means our commutes have gone from four hours a day to twenty minutes a day. That feeling of anxiety is slowly been replaced with reassurance that I will be round the corner, not far away from Arlo but far enough away for him to maintain his independence.

Arlo has his dad back and I’ve got my husband back. We are not broken anymore. I guess this is called adjusting and we’ve adjusted in the right way. This is our new normal.

 Our ven diagram of a family is still there type one diabetes hasn’t changed us that much. it’s just that the circles have got smaller.

Type one  diabetes we thank you for this.

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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

 

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

 

 

 

The one about DLA!

In the first few weeks our diabetic nurse specialist – Miss L mentioned that we were now entitled to DLA. For those that don’t know DLA is Disability Living Allowance. Because of Arlo’s diagnosis we were eligible to apply. At the time miss L mentioned it I remember saying to xrss that I was confused, we have just had a week of experts telling us that Arlo will be able to carry on as normal and other than a whole heap of organisation he will be able to continue as he has always done. So why now have we been told we can apply for DLA he isn’t disabled!

Miss L said we didn’t have to worry about it now as we couldn’t apply until  three months after diagnosis so I put it to the back of my mind and didn’t think much more about it.

It was Miss L who kept asking me “How you getting on with your form? You won’t get it until three months post diagnosis but you will need to make a start”

I had yet to print off the form and knew Miss L was heading over for a home visit so thought better get it printed quickly complete our part and then hand it over to Miss L .

Eighty four pages later I had a book in my hand! Looking at it I thought WTF! I honestly thought it would be a case of sending a medical letter confirming diagnosis and job done. I totally under estimated the level of content that was required.

Miss L was doing a home visit and whilst completing her section kept saying you need to give dates, you need to give times, DWP like examples they like time lines otherwise they will decline Arlo’s application. I couldn’t believe what I was hearing so the government had said that all children (under twelve!) with type 1 are entitled to DLA but it’s up to the local authority and how you complete the form as to whether you will be awarded the DLA!

When I finally got round to looking at the form about two months after diagnosis l began to realise why one might need the DLA.  In the NHS all of Arlo diabetic equipment insulin pens / needles / blood glucose machine are all free on prescription and will be for the rest of his life. This is standard NICE recommended equipment that is used to manage type 1 diabetes. Anything above the standard such as injection ports, diabetic kit bags, hypo juice bottles (post to follow) we will have to pay for by ourselves. I get that, I don’t begrudge the NHS for not letting us have injection ports or sweets on prescription. Two months down the line it was getting quite expensive. Injection ports alone were £78 per month! I could now see the importance of the DLA. It took the best part of two evenings to complete the form ensuring I had placed every minute detail in and documented times of hypos – management of these and what level of care was needed as well as hyper detailing the worst case scenario in all scenarios. Feeling pleased that I had completed the form off it went.

Two weeks later Arlo had a bit of a cold, I say a bit of a cold because really that was all it was a dose of calpol and he would be pretty picture of health. Except he wasn’t that week he had three evenings dangerously high blood glucose levels. We had to do two blood tests for glucose and ketones through the night every 1-2 hours. At one point during the middle of the night we wondered if would need to go to hospital because they were so high. We were pretty broken that week.  It was an awful reminder that scenarios like this would be part and parcel of our life now, they were not going to go away. This was our new normal.

Speaking to Miss L about how week, mentioning that he had wet the bed she immediately said “He was high, that will happen if he has high sugar levels.” I hadn’t registered the bed wetting to high levels but of course how could I have forgotten the period before he was diagnosed where he had high levels and was constantly wetting the bed.

I was starting to understand the need for DLA. Arlo needed care, he needed constant supervision until he was old enough to manage his diabetes on his own. The form had already been submitted and even though every child with type 1 diabetes is entitled to DLA it is so dependent on your area, who is reading your form and more importantly the information that is submitted. In other words your child may be entitled to DLA but your child may not get awarded any DLA. I have had past liaisons with the DWP (Department of works and pensions) through my job as a nurse working with vulnerable people. Not all of it was positive, in fact most of it was negative. I wasn’t expecting much when I contacted them. I was pleasantly surprised when I finally got through to them they were helpful, supportive and reassured me the new information would be added to Arlo’s application.

Three months later the letter arrived we had been awarded the middle rate of DLA, we had been awarded the DLA because Arlo did not have control of his bodily functions at certain times. Seeing it there in black and white was really hard, it made me angry, upset and very protective of Arlo, Our lives really had changed and whilst we were dealing with it and adjusting to it time wasn’t making it any easier. Unless you have a child with type 1 diabetes you cannot understand the complexity of this condition how it affects you as a family, as a parent and of course for Arlo who has to live with this condition for the rest of his life.

Arlo has been awarded DLA until he is aged 12. This is the age that the Department of Works and Pension deem Arlo or any other child mature and old enough to manage his own type 1 diabetes. I don’t know where we will be in 6 years. I can’t tell you now what kind of 12 year old Arlo will be. If Arlo aged 6 is anything to go by on Arlo aged 12 is going to be a pretty amazing boy. I have no doubt that he will be mature enough but as with all 12 year olds his priority is going to be playing with his mates, making music and playing football & not type 1 diabetes.

Links :

 

https://www.diabetes.org.uk/How_we_help/Advocacy/Disability_Living_Allowance/