Monthly Archives: March 2016

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!

 

 

 


 

 

 

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.

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