Post to follow …
Once I’ve got myself showered and mud free ……
Post to follow …
Once I’ve got myself showered and mud free ……
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.
Mummy and Daddy xxx
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.
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.”
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.
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 1995we 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
car-parts, bottles and cutlery
or whatever i find lying around
it’s become a habit
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
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.