Author Archives: vixterpeace

About vixterpeace

A full time working mum of a 6 year old boy diagnosed with type 1 diabetes. Trying to find a new normal.

Sun, Sea & Sugars. 


There are three main events in the Peace calendar that we look forward to every year.  Camping with the nursery gang, Glastonbury  festival and our annual pilgrimage to Ibiza’s Camping Cala Nova which we have been coming to for the last three years, since Arlo was diagnosed. In fact it was right here in 2015 that Arlo started to become symptomatic. Not that we knew that at the time. It is right here in Camping Cala Nova our journey with type one diabetes began. 

I still cringe at the memories of my sister and I trying to get Arlo to eat Jam baguettes when he really didn’t want to, given him litres and litres of water to drink, and loving the afternoon nap times on the beach where we would all fall asleep under the umbrella or I got to read more than one chapter of my book. 

Holidaying Peace style is a family and friends affair. Holidays include Aunties/sister,nanny’s/ mum, cousins, old freinds and new friends. 


 It’s not just us that come back year after year.  In the three years we have been we have met people who have been coming here year after year for up to 10 years in some cases. We’ve made some new  friends in the years we’ve been coming 


Arlo loves it here as much as we do and has made friends along the way who, like Arlo have been coming here year after year. 

Arlo always makes reference to his diabetes starting here, he has spoken of feeling safe here. It’s the one place we can all relax and feel safe. 

Beach life with type one  is tricky for whoever is looking after Arlo and  for Arlo himself. 

It starts with the packing of the beach bag. Packing to spend the day at the beach with kids is always going to involve one big beach bag and 1 or 2 inflatables, now add the diabetic equipment that you need to take. Insulin pen for injection which needs to go in the Frio bag which no doubt you have forgotten to re submerge in the water to make it useable again. So whilst you are quickly making the frio bag reusable you then think about what else you need. Food for hypos, blood glucose monitoring kit and strips, two finger prickers (just in case one doesn’t work), needles and lots of them, a box to put the needles in, Spare cannulas, a box to put all the above in and  then finally another box to put the pump in. Once you have got everything sorted and your down the beach your next challenge is trying to avoid  getting sand in anything to do with type 1 which is no mean feat! 

When at home we use the freestyle libre and Medtronic continuous pump that involves a cannula, however here we have learnt over the years that for a 7 year old boy spending most of his beach life jumping waves and climbing onto inflatables cannulas and scanners will come off or become blocked with sand. Unless we tape them up or continually tell Arlo to stop doing what he is doing or be careful (which we have chosen not to do) there is very little that can be done about it. We have to smile through the annoyance and get the insulin pen and finger prick out. Attempting to use the blood glucose monitor is not as easy as you think in the glaring sunshine you’re trying to see if the blood has hit the scanner, trying to see what the number is on a boy with salty finger tips who just wants to get back in the water. This is the only time Arlo gets a bit pissed at his diabetes, when he has to sit out the waves to treat his hypo. Warm pinapple or sweaty sweets anyone?! 


As I have said in previous posts type one isn’t a  “one size fits all” management style. Every one is different. For Arlo we have learned over the years that beach life makes his numbers low so we throw away our “at home” care plan.  Remove the pump for day time only putting on for the bolus insulin. We don’t have any back ground insulin at all during the day.  The pump goes on at bedtime for the night.  We’ve had the best numbers here whilst on holiday. Which makes all the faffing about with pumps and finger pricks worthwhile.

Every year we are here we ask ourselves the question, can we move here? We tell ourselves let’s move here. We know that one year it may happen but until then we will continue to look forward to our annual pilgrimage to camping Cala Nova, a place that we will return to year after year. A place that holds a special place in all our hearts. 

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Going on a jet plane. 

Going on holiday is always something we look forward to every year. We tend to drive to Europe as for us it’s so much easier when you have to factor in all the equipment that one needs to take with them. We’ve only flown once before since diagnosis when Arlo was first diagnosed. It caused us so much stress that we needed another holiday to get over the airport experience. 
But this year two years on we decided to bite the bullet, be brave and get on a airplane. With some planning ahead and gastapo like organisation it doesn’t have to be stressful. 
Flying Peace style involves 

  1. Travel letters much like a passport with this letter you won’t be able to get through customs with all your equipment. Insulin can only be stored in cabin luggage due to the freezing temperatures that occur in hold luggage. The travel letters are issued by your diabetic team and will list every item that you will need and take on the plane. 
  2. Insurance : Make sure you have the right insurance and you have disclosed that you are flying with a type 1 diabetic passenger. It does cost slightly more which pisses me off every time I renew it, but without it if anything was to happen you are screwed. 
  3. Contact the flight company in advance. In our case we are flying with EasyJet. They have been brilliant so far in reassuring us. Ive used twitter , Ive used the special assistance contact number ( I’m pretty sure they are getting sick of me now!) all so we can have a stress free airport experience . You are allowed to take as many “medical bags” as hand luggage as you need. In our case we have ended up with one hand luggage bag and our normal daily diabetic bag. 
  4. Keep your wits about you and keep calm. Customs at the best of times is not the best place to be even when you don’t have to deal with type 1! Throw in a Saturday afternoon in the middle of August and you are in customs hell. You are being sternly instructed to put all items in the box to go through the X-ray machine  all whilst  trying to make sure you are boy doesn’t go through the scanning machine with the pump. I must say most staff are really helpful and understanding. Some will appear to be not so helpful, they are just doing there Job you will not be taken any equipment through with you without it being scanned. The checking of equipment is not the bad part it’s the queue waiting to get equipment back. This year we were met with a certain staff member telling us to just queue and wait our turn. For those that know me you can imagine what I said to this member of staff when she then finished her statement with …. he doesn’t look ill to me in front of Arlo who had only 5 mins before had said “mummy I don’t feel very well.” All ended well and we managed to get the bag and scanner back. But as I said keep calm and try not to panic. 
  5. Equipment: I’m in the “Just in case” group so I admit I probably take more than we need. I take treble of everything! Insulin comes in glass botttles and I always have the fear of the bottles smashing or breaking! We had an experience last year where we switched from pump back to pens we found we had not brought enough pen needles with us. Panicking slightly that we would be stuck on a Spanish island on a campsite with no needles we counted them out, we knew we had enough of for normal doses but would run out if we needed corrections etc. ( Another first time for us!) 
  6. If like us you use the freestyle libre to check numbers be prepared for these to come off or stop working before they should. We found last year when our boy was in and out of the sea, playing in the sand …. just generally being a 7 year old on holiday that the scanner came off rather to easily. I wanted to tell Arlo to be more careful, not go in the sea as much, not play in the sand but hey it’s his holiday as much as ours so in the end after going through 2 scanners in 7 days we went back to finger pricking.
  7. We use a pump to administer Arlo insulin. We have found on ourlast two   holidays that 7 year old boys on holiday ( much like most kids ) don’t want to be tied down to a nagging mum constantly saying “put your pump back on” “Arlo watch your pump!”  I can’t speak for all type one kids but Arlo just doesn’t like his pump when on holiday. We have found a solution that works for us which is doing a combination of pump and pens. We pump at night and pen during the day.  We find that our boy actually needs very little insulin during the day when running around in the sun and swimming most of the day so for us it makes it a lot easier. We’ve had some of our best numbers working to this method . 
  8. Don’t forget the time differences. This will mess with your head, your pump and your pens but it will get easier. 
  9. Don’t forget the sharps bin! 
  10. Check you have a fridge where you are staying. 
  11. Write down or learn some phrases of the language of where you are going. 
  12. Have fun and try not to stress! 

FYI … 

As much as I love the scanner. 

It certainly has been a game changer for us. I can assure you that the cycling, smiling all whilst  trying to scan ones child is not something I can relate to. 

The reality is more like trying to catch up with the little man on the bike, once caught up wheels from my bike get caught up with the wheels from Arlo bike resulting in one big crash ending with me falling down a ditch of stinging nettles with bike on top of me…… and scanner still in hand! 

Did I mention the sudden onset of a torrential downpour as well!

The Two year mark …

We are now coming up to two years of living with type 1 diabetes. Arlo you are 7 almost  8 years old. I look at you and no longer see the baby but see the grown up you are developing into. I’m going through a phase of not wanting to let you go, wa

nting to hang out with you and wanting to be with you all the time …… you on the other hand just want to be with your mates and be on the  iPad!  


So where to begin 2 years down the line? 

 We still lie awake at night sometimes and ask ourselves why Arlo ? What did we do? Of course there is no answer. Of course I know there is nothing we did or we could have done to prevent this. 

Arlo and his numbers are the first and last thing I think about everyday. The numbers between 4-7 and his insulin keeps him alive everyday! If I think about this too deeply it terrifies me I wouldn’t let him out of my sight. It’s exhausting physically and mentally.  It takes all my strength to let him go to put my trust in the people who are looking after him when my boy isn’t with me. For me the letting go is the hardest thing to deal with. For Arlo he needs me to let him go. He doesn’t want to be anymore different that he knows he already is. 

I keep saying to myself that Arlo is too young to manage his diabetes. It’s far too much pressure for a 7 year old boy. It was Mrs P his diabetic support worker at his school that said to me ” Mrs Peace you don’t give that boy enough credit he is amazing at managing his pump and numbers when he isn’t with you!” 

Two years ago we had people saying to us soon you will get used to it.

“It will just become part of his life.” 
I guess they were right. 

I on the other hand don’t think I will ever get used to it or maybe I’m just not there yet.

We have learnt so much about our amazing boy , ourselves and this horrible condition in the last two years. Not all of it is bad.

Since diagnosis:

  1. Our work life balance has improved. We both work locally, home by 6pm and hang out a lot more than we did when we were both commuting to London. (Two 1/2hr commute!)
  2. We sit down at the table  to eat dinner together everyday and not just at weekends. 
  3. We talk to each other about good things, bad things and funny things when at the dinner table. 
  4. Arlo is very good with numbers and maths. 
  5. Ive learnt that one can actually survive on blocks of two hour sleeps and still manage a day at work.
  6. Cereals for breakfast are rubbish at keeping numbers down. 
  7. Eggs, and  freshly baked pain au raisins are however great for stopping breakfast spikes. (Great on a school day …. NOT!)
  8. The 2 days in between cannula changes really feels like 24 hours it comes around so quickly! 
  9. Friends and family are there to be used to keep you sane.
  10. It’s ok if not everyone who looks after Arlo doesn’t manage his diabetes in a gestapo like fashion much like me. Everyone is doing the best for Arlo.
  11. We don’t have to queue anymore.
  12. First times are manageable and becoming less scary.
  13. The freestyle libre scanner is a game changer in managing Arlo’s diabetes. 
  14. Arlo is a happy, patient, likeable, sociable special little ( not so little ) boy with some pretty special buddies who look out for him.

Arlo you are a pretty amazing boy it’s through you and your attitude I get the strength to stop myself from shouting.

 “it’s not fucking fair!” 

“Why you!”

Dear Arlo 


Dear Arlo

I hope when your older and you read this blog you have finally come to terms with being a pretty amazing boy who is brave and makes us proud every second of the day. You will have crappy days and you have had some pretty crappy days . You are 6 now as I write this and there have been times where we have had to scoop you up both physically and emotionally from the bottom of the floor that you have sank into and tell you everything will be ok .

Last night was one of those nights . Having our pillow talk you turned around and asked me why you couldn’t be normal like all your friends . You hated your pump at nights and couldn’t get comfortable lying down. Through tears you said the one thing that you wished you could do more  than anything in the world was to eat something without having to think first or ask. Through sobs you said that you hated being different to everyone else at school you  wanted to stand in line just like everyone else did.

You said you wanted a pancreas that worked.

I held back the tears and told you we are all different in our own ways and that the world would be a boring  place if we all the same. We have these conversations a lot and you feel better afterwards and tell me something nice that happened with your friends or at school.

 

You tell us most of the time your happy and you love your friends ,family and the dog we have named but not yet actually bought .( It’s Headley Hudson for those that are interested! )

What amazes me about you Arlo now aged 6 is that you are open and honest with us and whilst sometimes you may say things that break my heart you are telling us and your not bottling it up . I hope that we have taught you that things can feel a whole lot better if you talk about them . I hope that when you read this aged 16,17 or 18 that you are still open with us , your family and your friends . You will still have type 1 diabetes , you will still have crappy days .

I make no apologies Arlo Huxley Peace you will still be a  amazing brave boy who we are beyond proud of.

Love

Mummy and Daddy xxx

Our amazing team.

Diabetes blog week – Thursday’s topic. 

 Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!


I consider ourselves really lucky. When Arlo was first diagnosed in September,  the very next day we were met by a team of paediatric diabetes speicialist. I will never forget that first week I was walking around on a black cloud and in a black cloud beyond terrified of what the next week may entail let alone the future. 
I work in healthcare and have some experiences of dealing with hospital consultants . Some are great but sadly most of them float in on a ward round give you 5 mins and then any questions are answered by their team of doctors behind them. So I was sceptical at first that Arlo consultant would just be a name we would hear and rarely seen. How wrong was I . From day 2 our consultant sat with us sometimes in silence he didn’t budge he didn’t make any movements to leave … He sat , he talked and he listened . He talked honestly and openly and said he and his team were available at any time. 

Then came the nurses at the time there was two of them in that first week of being in hospital we spent some time with both of them. I will never forget one of the nurses putting her hand on my knee and saying ,

“Vic  you can still do everything you did you just going to have to stop winging it and be a bit more organised .”
Of course She was right  we pretty much do everything we used to )apart from sleepovers.) You do have to be organised and remain one step ahead of type 1 which I can’t tell you how exhausting it can be to never be able to switch off from it but there is also a element of “winging it.” 

We ended up being allocated to Mrs L the way clinic days worked and our days we naturally fell into the caseload of Mrs L. 

Mrs L has been our lifeline really – always there to help us on a crisis and always ensuring we know what to do when she is away . I could go on forever about how amazing Mrs L has been and then rest of the team but the most important thing Mrs L has done for us is empowered us to have the confidence to deal with the day to day managing of diabetes and those  crisis moments .

When I told Arlo about my job one of the the first things he asked was if I was going to be an important nurse like Mrs L! To Arlo Mrs L is a superheroe in some ways she is . 

Our team doesn’t stop here we have access to dietician’s and counsellors which are available to use at anytime. 

Clinic appointment s are a chance to for us all to get together – Arlo hates these appointments and never stays in the room. He hates people talking about him and hates being called brave. 

He always asks the same question at the ends to our consultant .

“When will my diabetes go”

The consultant always replies with , 

” that’s a very good question , the scientists are busy working to find a cure and hopefully when your older that might happen.” 
I hope and pray that this is the case. 

The Peace gang including Arlo will be running on June 11th to raise money for the JRDF charity which works really hard and trying to find a cure . 

Please click on link to sponsor us all. 

http://www.justgiving.com/alongcametype1?utm_id27
Just giving / along came type 1