Freestyle Libre - 7 Months On

An arty shot, if you will.

If you are new to The Freestyle Libre you can read about my first impressions and discover the initial problems I faced here. With that aside, I am here to share you where I am, 7 months on, the advantages, disadvantages and my tips if you are thinking about investing in this technology. Which for the record, is very expensive.

I would like to point out here that I do not fault the company, or their product in the slightest, in fact it's quite the opposite. I truly believe the Freestyle Libre Flash Glucose Monitor is a game-changer for many people with Diabetes. As always, my mutterings here on Diabetesgeek are purely my experience alone, you may feel different and that's awesome too.

Months 1-1.8 (Yes I did just do that)
I was swept off my feet and very much enchanted with my new found freedom when I first got my hands on my Libre. You can read a poem I wrote  about how I felt about Libs, a friendly nickname I gave to my handset, we were a great pair for a while. On our first day I learnt the importance of pre-blousing.. I now shout about this to all of my new diabuddies! It was something I was always told to do as a kiddiwink but never did, I learnt very quickly with the Freestyle Libre that spikes are hard to ignore (understatement of the century on my part).
You'll have noticed by now that I am writing in past tense, of which I feel bad.. I still love this technology. I just wish my brain wasn't wired into overdrive. I jumped into using the Libre with little idea of how it would affect my mental health, which ended up turning into a big black hole. I hope some of you planning on buying the Freestyle Libre system take my experience on board. I learnt the hard way, and I write in hopes others don't have to. 

Months 2-5
By the end of my second month using the Libre continuously* I began running into a few problems, which I blogged about (linked at the top of this piece.) In short, I was seeing data I didn't like and I wasn't sure how to cope with it, so I did as any other would, I carried on using the Libre and in turn was overwhelmed with data. I was putting in all the effort and not seeing the results I wanted or deserved. This cycle carried on for months which led me to my longest Burnout period to date- a hellish 3 months, from September right through to December. In that time my mental health turned to shit, my blood glucose levels were fluctuating more than I had ever known and I felt awful. At no point did I completely stop testing my bloods or stop taking insulin, thankfully I've not done that since I was about 8.

I didn't help myself either, which is important to point out here, I lost contact with my diabetic team for several reasons, I hope to blog about it one day. I wanted no input from health care professionals.. I was frustrated, in every sense of the word.
Frustrated this expensive technology seemed nothing but a horrible experience, frustrated that I couldn't handle this by myself, frustrated that I had to reach out for help and frustrated with, what felt like, lack of solutions.
A huge lesson I have learnt retrospectively is this, if you are going to invest in this tech, please please please work in partnership with your HCPs. For your safety, to preserve any blood glucose control you think you have and to keep everyone in the loop, use all the resources you have. Whilst in my 3 months of burnout I fell into some pretty bad habits, most of which I don't feel comfortable enough to talk about on here yet, which could have seriously damaged my health, so please, just keep yourself safe. 

*we shall speak more about this later.

Months 6-7
I began to take breaks between sensors, almost giving myself some kind of messed-up respite from what was supposed to be this grand piece of technology. I found returning to finger-pricks made me feel more free than the Libre did, which is the opposite of what you expect when you first research the tech. Finger-pricking broke me from this cycle of what felt like never ending misery and shitty data. Shitty data I didn't know how to handle. It went from finger prick snapshots which were never awful, to 24 hour graphs of my blood glucose, I saw every missed unit of insulin, every messed-up correction dose and every over-treated hypo. It drove me to the point of insanity. I literally felt like I was on the verge of a mental meltdown, which looking back on it now, was exactly where I was at in my 3 month period of burnout. I'm not sure if my blood glucose levels are genuinely better when finger-pricking, or if I just don't test when I know I've only just eaten and my bloods are bound to be higher than I'd like. Whichever it is, either is better than the crap I was seeing on my daily graphs, sometimes ignorance is bliss.

Moreover, *I felt bad each day I didn't wear a Libre sensor, because my parents were forking out such a lot of money for it, I almost felt obliged to wear them. Listen to your body, you know it better than anyone else ever will.

Luckily, in December I had the opportunity to complete a 'carb counting education course' through my hospital, another topic I plan to blog about in the near future, so many topics, so little time! On said course, HCPs advised I seriously re-considered using the Freestyle Libre because of the unhealthy habits I'd adopted. I think that was the point where I realised my eating habits had become, to put it politely, screwed. I learnt so much invaluable information whilst on the course but mainly that a lot of others get overwhelmed by the data that us T1's are so immersed in, especially when you're not sure what to do with the information you've collated. So I took the advice given, and since I have stuck to finger-pricking alone and have never felt better. 

That is not to say I won't ever use the Libre again, I hope be in a place mentally, where I can make the most of this fabulous technology. I didn't use it under the best of circumstances, given I was not in contact with my HCPs which I do not recommend (another understatement). I had issues with my target range, that's another topic for another day as well as trying to change my diet to avoid spikes, all of which I could have resolved if I was in contact with my team at the hospital. Communication is key, especially when it comes to your everyday health.
I still have two sensors to use, but I will be scanning with one eye shut. I still feel so blessed that my parents are in a position to fund this technology for me. When used correctly, and in partnership with your health care professionals, the Freestyle Libre is a game-changer for most. This attitude I still very much believe in.


To summarise, my Top Tips are as follows..


- I mentioned it earlier, but I'm going to say it again.  If you are going to invest in this technology, please please please work in partnership with your HCPs. They can help you, and if they are not familiar with the Freestyle Libre software, teach them or find someone that can.

A note from me, to you. - A

- You don't have to wear the Libre sensors all the time. Don't feel obliged to wear them just because you are fortunate enough that you can afford them. Order the starter kit, use the first two sensors and test the waters, so to speak. Be sensible, you know your body better than anybody else does.

- Take breaks between sensors. If just for a couple of days, let your brain rest from the constant stream of data. Returning to finger-pricks is not all as bad or as hard work as it seems.

- You're doing great.


If you read to the end of this post then have my many congratulations because I've quite literally written an essay, but as always, even if this just helps one person and they find they can relate, then my time spent brain-farting on a keyboard was completely worth it. Thank you for reading!

Amber xx

Twitter: @diabetes_geek 

A Tale Of #DOC Friendship - September 2016

In early September I took a trip to see my friend Niki who lives on the outskirts of Oxford. We decided we wanted to go to the same T1 London Meetup event, so it made sense that we just made a trip of it. Niki kindly offered me to stay with her for a total of two nights and three days. I was having a really tough time with Diabetes from September right through until December, my longest Burnout period to date. I also had a tough time at home so staying with Niki was a much welcomed break.

Day One - Niki met me at the train station and we clicked instantaneously just as we had online. We got over the two minute awkward chat about getting on the correct train and tackling my travel anxieties and headed straight to Oxford. We chatted burnout, traffic and our plans for the next three days whilst on our merry way.

The Botanic Gardens

Here Niki's extraordinary tour guiding skills began, I had never been to Oxford prior to this trip but it was always on my to-do-list. We went straight to the Botanical Gardens. By this point I knew Niki was a very special person, and that her gratitude, funniness and likeability transferred in real life, too.

Niki and I synced BG numbers!!

Whilst strolling around the gardens a man approached us and said he had T1 and spotted us from the Libre sensors on our arms! We had met another Diabetic in the wild - we were both overjoyed that he was nice enough to approach us. He must have thought it was a blue moon!

The Bridge of Sighs in Oxford
Niki why are we wearing the same colour?! 

We ran into a local cafe just as it started raining and took refuge in the incredibly yummy food that they served! Over lunch we talked illness, family and helped one another carb count our meals. We both scanned our Libres post meal and found we had matching blood glucose levels - we found great satisfaction in that!

Niki showed me around Radcliffe Square and we visited The Bodleian Library/The Radcliffe Camera and the Bridge of Sighs which were both key filming locations for the movie 'The Golden Compass'. You couldn't see any modern buildings for miles it was absolutely beautiful, we spoke a lot about the architecture of the universities' buildings as this is a shared interest we have!

We packed a lot into day one, so much so if I were to tell you every detail we'd both be here all day. We carried on being tourists, chatted, laughed and I think we even pushed the boat out and had another coffee - reckless right? We decided it was time to head home so we could get in our pyjamas. Niki had warned me that she lived in a zoo previously, but I didn't take her seriously.. 1 dog and 3 cats. I was introduced to Rubstaaar (that's Niki's brown Staffordshire Bull Terrier if you didn't know) and it was love at first sight. So Ruby and I snuggled down for the evening, I'm not even sure we put the TV on or if N and I just chatted the entire night. We were up until 1am because we just couldn't stop talking!

Three T1D's in a cafe in central London,
what could go wrong??
Left - Claire
Middle - myself
Right - Nikstaaar

Day Two - We got up early as we needed to travel into London to meet our friend Claire and then head to the T1 London meetup at a pub by Hyde Park. Both Niki and I regretted staying up late but wouldn't have changed it for the world. Whilst travelling into London via Reading station, I lost count of how many hypos I had, having to sit in St Pancras station whilst N had to run off to buy me more hypo supplies as I'd ran out on the 55 minute train journey. Niki was my absolute saviour, I'd never hypoed as much as I did in those three days. In fact a lot of my memories are blurred from our time together. If I were with anyone else I would have turned around and gone back home but Niki kept my spirits high. She was just awesome.

At the T1 London Meet-up with 'Twitter friends'

We met our friend Claire and headed to a cafe to grab a small bite to eat before the meet-up. We had been chatting on a group Whatsapp for months before we all met so it was easy to chat and gossip. Once we'd talked kids, business ideas and carbs we found the pub and went straight in for the diabetic meetup. We stayed there for the majority of the day and spoke to people that we had interacted with on Twitter,  it was cool to see them in real life as opposed to behind a computer screen. We headed home and debriefed each other on the days happenings. Niki and I were absolutely exhausted, we'd had such a busy two days so far.
If you hadn't guessed by now, we were up until the early hours of the morning chatting, regretting not even a minute.

Day Three - For the entire three days I spent with Niki she literally waited on me hand and foot, I was so emotionally fragile with the hypos being the least of my worries. Typing this retrospectively has bought all of my emotions back, I was in such a vulnerable head-space and I am so lucky that Niki came into my life when she did.

On our final day Niki drove us to Portsmouth so we could meet up with our friend Laura, who also has T1D. We got chatting and settled on Southsea Common and chatted about a whole range of things such us; dating, hospitals, work and friends. We watched the sun set and our bodies get colder as we tried to chase the sun and our day drew to a close.

Niki and I came to my HQ and sat on the sofa, trying to drag out what we knew had to be a goodbye. I can't delve much deeper into that part of the day because it's still raw for me. I had the most wonderful time with Niki meeting such wonderful people and exploring Oxford, that I didn't want to return back to normal life, which at the time happened to be pretty crap.

'Home is where all your attempts to escape cease'
<3

Meeting other T1's who you have spoken to online, in the real world is a feeling I could never do justice. I have never felt so safe and content than when I was with Niki so much so that I had a breakdown when she left. Within said breakdown I remember saying that I felt completely at home with Niki, and that was emotional stability that I was lacking elsewhere. I thoroughly enjoyed our three days even if they did fly-by!

"It's not a goodbye, just a see you later.."

When You Don’t Really Have An Eating Disorder, But Kind Of Do

TRIGGER WARNING: This post contains sensitive content regarding eating disorders.


I am happy with my weight and how my body looks.
I am not underweight or overweight, I am average and in-proportion.
I have no desire to lose, or gain weight.
I do not self harm.
I do not obsessively exercise, in fact I make a very poor effort.
I do not spend my time looking at 'thinspiration' accounts on Instagram.
I cannot remember the last time I stepped on the scales, I have no issue with my weight.
My eating habits have not changed drastically. It has been a very slow process that I have only picked up on recently.
I spend some days eating whatever I want and I do not feel bad.
I do not count calories, only carbohydrates.
I have never been on a diet nor have I thought about it.
I have never had a 'goal' or 'target' weight nor have I thought about it.

I don't think of myself as having an eating disorder, in fact I feel I am far from that. What I do have is disordered eating. My relationship with food is not healthy, and it hasn't been for over a year now.

I eat when I feel I deserve food.
I eat when I feel I have the energy to deal with the fluctuations it causes for my blood glucose levels.
I eat after I remind myself that if I carry on this will turn into an eating disorder.
I eat when I realise I have not eaten in 12 hours, and that I really should eat even though I am not hungry.
I treat food like a reward rather than a basic human necessity.
I treat food like a punishment, I think I have to eat or else others may begin to pick up on my unusual habits.

I eat when I absolutely HAVE to.

I see eating as a challenge.
I see eating as guilt.
I see eating as a way of losing control.
I categorise food into 'good foods' and 'bad foods'.
I do think seeing a counsellor would help change my thoughts about food.


And even after typing that, and hearing it for the first time, I still don't think I have an eating disorder. You wouldn't look at me and think 'eating disorder' and I don't look at myself and think 'eating disorder'. When does disordered eating become an eating disorder? Where do we draw that line?




Useful Links
Where do we draw the line?
Disordered Eating
What is the difference?

Please note - I fully intend on exploring my relationship with food in relation to diabetes specifically as this is the root of my issues. I also intend to continue this idea of mental health and the blurred lines between each diagnosis, or lack of in some cases.
I also do not want to worry any of my close friends and family with this post, rest be assured I am in contact with the relevant health care professionals. My complicated relatoinship with food is only something I have explored over the past 3 months, this is new for me. And in Amber's world, 'new' means scary.

All the best!

Amber xx

Twitter-  diabetes_geek