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!

 

 

 


 

 

 

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.

goodbye-london_4162

 

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.

blog pic 2

Back to blogging.

I started this blog when Arlo was first diagnosed. At the time I needed somewhere to vent my anger, & talk about how his diagnosishad affected us all. For those that know me well I’m not one to hide in the corner and not talk about my feelings or what’s on my mind. I can’t pretend that all is ok when it is not and I can’t put a smiling face on when all I want to do is cry.

I didn’t realise how affected I would be writing this blog. It stirred up all kinds of anger and turmoil in me writing retrospectively about our new normal. So much so that I had to take a step back, block out what had happened and just take each day as it came to us.

It’s now been six months since Arlo was diagnosed and three months have passed since my last post. A lot of changes have happened since my last post,a whole heap of good and bad has come our way. I’m now ready to share our story again and fill you in on the last 3 months all the tears, the tantrums the highs and the lows.

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/