{Interview} Claire, Founder of Organising Chaos
Time for another T1D interview with Claire
Roll up, here’s another interview with type 1 diabetes superstar. I spoke to Claire, founder of Organising Chaos, a diabetes accessories brand. Claire and the Organising Chaos team offer products to decorate your diabetes supplies make managing the condition a little easier and a little more fun.
We discuss her T1D journey, what diabetes burnout can feel like, Claire’s favourite blogs/pods/places to find support and - my favourite - a quick-fire round at the end.
Claire’s a bright star in the diabetes community. If you want to follow her online [you should], check out her Instagram here, her blog here and her online shop here.
Without further ado…
Hey Claire! Thanks for coming on. Can you start by telling us your T1D journey?
I was 6 when I was diagnosed with diabetes so have reached diabetes level 22. My parents tell me I had flu-like symptoms along with erratic behaviour. I would be fine one minute and slump the next. So they decided to take me to the doctors who agreed it was a cold and sent me back home. But when we arrived home another doctor had checked my notes and thankfully called us back in. After doing some tests I was sent to the hospital in DKA, but they weren't equipped to care for me so I was transferred by ambulance twice before ending up 50 miles away from home in a hospital that had an ICU equipped to deal with me.
Wow, Claire, I’m sorry - that sounds like a really distressing time for you.
What do you wish you'd known when you were newly diagnosed?
Since I was so young, I wish my parents were given more support and education on diabetes. It wasn't until I was an adult that I learnt about the impact of nutrition and how to carb count. It would have been great to have been taught this growing up. It would have avoided many years of burnout.
What is the worst thing about T1D?
For me it's the emotional burden. Dealing with T1D 24 hours a day, 7 days a week can really take its toll and I regularly find myself trying to avoid burnout.
(Curveball) What is the best thing about T1D?
It might be surprising but there are several things for me... Top of the list has to be the diabetes online community. Becoming part of the community saved my life, having other people who understand what it's like to have diabetes and having a support system is invaluable!
This also led me to start Organising Chaos and after working in jobs that I hated and organisation that never supported or understood my diabetes I'm now doing something I love and get to be my own boss!
What are the main challenges of living with type 1?
Just as easy as it is to become complacent with my control, I can also become obsessed with my numbers and this can quickly lead to burnout. Having a CGM is a blessing but as a perfectionist I want to always see a 5.5mmol on my screen. I find it quite challenging to find the right balance.
Me too! How do you deal with these challenges?
Speaking to my diabetic team (my DSN rocks!) and reaching out the online community, I realised I wasn't alone in seeking for perfection all the time. Any time I have a high/low I tell myself that it's okay! It's okay not to have perfect BGs all the time and I am doing my best! I also give myself "days off" where I don't constantly look at my blood sugars.
Where do you find support and how do you access it?
I struggled with this for years! After not seeing a diabetic team for about 5 years and completely ignoring my diabetes, when I finally wanted the support I had no idea where to turn. I began at my GP, who referred me to the local diabetes team. I then asked to be referred to a consultant to get more support but it took a lot of fighting and waiting before I was referred. Now I am on a pump I see a pump consultant and a DSN regularly. But honestly the biggest support is the online community and my diabuddies!
Can you recommend any great podcasts or blogs?
There are some great blogs and podcasts out there for diabetes depending on what you are looking for...
Mastering Diabetes (Insta account) is amazing for nutritional support
Nerdabetic does YouTube videos centred around diabetes tech.
Kerri from Six Until Me is the OG diabetes blogger and whilst the blog is no longer updated, it was one of the first blogs I came across and has archives of great information!
Have you ever 'hidden' your type 1?
Omg yes! I hid my diabetes for most of my life! I went through at least 10 years of burnout from my early teens to my early twenties. I rarely checked my blood sugars or took my insulin and I definitely hid my diabetes from the world. It wasn't until I joined the online community and saw other people embracing their diabetes that I decided to do the same! I took back control and I've been wearing my diabetes with pride ever since!
How do you think type 1 has affected your relationship with your body?
This is a tough one! I remember as a teenager a nurse, who noticed I had lost a little bit of weight, asked me whether I had been avoiding taking my insulin because that can make you lose weight fast! And from that day on, I regularly avoided taking shots to shed those extra pounds. I have always been "bigger" and I guess for years I blamed my diabetes. When I finally got back in control, I piled on so much weight and honestly resented my diabetes for it. But now I embrace who I am, injection bruises, pump scars, extra weight and all!
How do you think type 1 has changed your approach to life and living?
I think diabetes has made me value things more. Value having a slice of cake with friends or doing a work out without going low! I have become more compassionate about what other people are going through and realised that we are all fighting invisible battles!
T1D is classified as a physical condition, but we all know there is an emotional burden too. Could you describe your experiences?
As I mentioned before, I regularly sit on the edge of burnout after becoming obsessed with my numbers and striving for perfection. It can be really hard sometimes, but I have a list of things I do regularly:
RESET: I take it back to basics. I use a diary to log my blood glucose, carbohydrate and insulin. It's great for accountability and getting back on track with carb counting and injecting correct doses.
SELF-CARE: I take some time out for myself! Things I love to do...read a book, listen to a podcast or take a bath.
THINK: I remind myself of the diabetic related complications and the horrible laser treatment I had for background retinopathy. I think of all I've already put my body through and how awful I used to feel before I took care of myself!
EXERCISE: This a new found concept for me... exercising to feel good and be healthy and not to lose weight! Going for a swim or taking a walk with the Diahubby & Bolus (my Cavapoochon puppy) are great stress relievers and do wonders for my BGs.
ACCEPTANCE: Knowing that it is okay not to be okay! It's alright to have a high blood sugar now and then. Not having perfect blood sugars does not make you a bad diabetic.
Amen to that. When did you launch Organising Chaos and what was the reason behind that?
I launched Organising Chaos in 2018, right after I suffered my first miscarriage. I had the idea for starting a diabetes related company for a while, I saw companies in other countries decorating diabetes but there wasn't anything similar in the UK and I was tired of paying the postage! I used my grief and loss and decided to channel it into something positive.
That’s amazing, Claire. What is your favourite product from Organising Chaos online shop?
Hmm, that's a really hard question! I love the enamel pins, I think they are pretty unique and are great for decorating diabetes kitbags or clothing!
BONUS: Quick-fire round!
Pump or pens?
Both ;) (I'm on a pump but use pens for large boluses)
Finger pricks or CGM?
CGM
Juice box or jelly babies?
Juice box
Balmy summer nights or crisp wintry mornings?
Balmy summer nights
Porridge or pancakes?
Pancakes
Diet Coke or Kombucha?
Diet Coke
Novorapid or Fiasp?
Fiasp
Chasing Unicorns or Dia-bee-tes?
Dia-Bee-tes
Morning bird or night owl?
Night owl
Breakfast, lunch or dinner?
Dinner
