Saturday, 20 September 2014

FreeStyle Libre - data download



I just wanted to post a few examples of the charts that you can download straight to your computer from the Libre. 

I'm really impressed with the variety available and I feel that this is the first time I've really understood my data. Previously I've been presented with those horrible spaghetti lines that come muddled together on one graph, with only different colours to tell the days apart. I used to sit with my consultant and let him do all the work when it came to picking out patterns - He's always rocked at that part anyway!

However the charts and info that the Libre displays has been a huge eye opener and for the first time I feel that I can make changes to my insulin without the help of my diabetes consultant! I'm like my very own diabetes Health Care Professional (without the letters behind my name)! 

Patient Power!! 



Daily patterns


Glucose pattern insights


Monthly Summary 


Daily Log


Snap-Shot


Weekly Summary


There are also options to view meal time patterns and user data. The software is really easy to use - Just download it from www.freestylelibre.com and connect your Libre to your PC/laptop via the USB cable provided with the reader. 

As I said, I'm really impressed with way that my data has been presented and the different options I have to view it. It's very empowering and I love knowing that I don't need to go through the routine of making an appointment to see my consultant, heading to my diabetes clinic, battling to download my data via the system they use and then sitting with my consultant whilst he number crunches and I go cross eyes looking at the screen.

I'm currently giving a BIG thumbs up to Abbott!


Ninjabetic x







Monday, 15 September 2014

FreeStyle Libre - Flash Glucose Technology








FreeStyle Libre… The new diabetes product that has been the talk of the town, or certainly the Diabetes Online Community (DOC), for the past few weeks.

The technology itself is called flash glucose. It isn’t marketed as a CGM (Continuous Glucose Monitor) or a blood glucose machine, it’s something different… something completely new (and very interesting) to the diabetes market. The way that the Libre works is by reading glucose levels through a sensor that can be worn on the back of the upper arm for up to 14 days. The sensor itself (approximately the size of a two Euro coin) measures glucose every minute in interstitial fluid through a small (5.0mm x 0.4mm) filament that is inserted just under the skin of the arm. A touch screen reader is then used to scan (flash) over the sensor (it can scan through 4cm of clothing) which then gives the user their blood glucose result in a pain free, discreet and convenient way, as many times as you like - No finger stick calibration is needed. A historical trace is then formed over time and the also reader shows the user which direction their blood glucose is heading in – Steady, slowly going down, rapidly going down, slowly going up or rapidly going up.

The Freestyle Libre has been marketed as;


A revolutionary new glucose sensing technology for people with diabetes”

“A significantly advance the field of glucose monitoring”

“Offering a convenient and painless way to get more frequent glucose readings, which should help to improve diabetes management




But we all know that marketing means nothing to a consumer these days if it’s not backed up with genuine user reviews and opinions, especially when it comes to a medical device that we, people who have diabetes and don’t just talk about it, need to use on a daily basis… need to trust every second that we are using it… So that’s why Abbott (the pharmaceutical company behind the FreeStyle Libre) invited me and a group of other people with Type 1 diabetes to London last week, to be amongst the first in the world to be able to try the Libre before it hit the shelves! 


What does the Libre look like?

Ok, so I was given a starter kit to take home with me – 2 sensors and a reader. The shiny yellow packaging with an orange butterfly is familiar to me and told me that it was an Abbott product (I have a few Abbot products at home), but packaging is just a barrier to me getting to what I want and really doesn’t mean much to me at all. After ripping my way through that barrier, I found inside the sensor box the sensor itself (in sterile packaging), an inserter (also in sterile packaging) and an instruction manual. Inside the reader box is the reader, a battery charger and USB cable, along with user guides, starter manuals etc.




The sensor itself, when on my arm is about the size of a £2 coin and about the thickness of 2x £2 coins. It has a super sticky adhesive to make sure it doesn’t ping off and that’s all you can see. The needle comes straight out with the inserter and gets throw in the sharps bin (if you geta Libre you will need one of those MASSIVE sharps bins).




The reader is relatively small (see pic below), easy to hold or pop in a pocket or handbag and is very lightweight. It feels like it would bounce if it hit the floor (this is something I won’t be testing out!), the screen, if you push gently on it, is quite flexible and doesn’t seem like it would break if you accidently left it in your back pocket and sat on it. Saying that though, it does feel a bit… cheap. Though at the price it rocks in at I wouldn’t expect to be holding something that would give the iphone 6 a run for its money!

The reader only has 1 button, it has a large colour screen that’s also touch screen, a decent sized text for those who, like me, refuse to wear their glasses, and it well lit (more about the reader later). A nice surprise that I wasn’t expecting when I opened it is that it can also test blood glucose in the way that most of us are used to, with a finger prick, and is also a blood ketone meter!

The Libre doesn’t come with a case or any accessories to ‘funk’ it up but from what I’ve seen, people in the DOC are pretty good at doing that themselves and I’m sure it won’t be long before some of the more creative people have pimped their Libre's.





Is it comfortable? Does it have to be worn on the skin?

It’s very comfortable! I can’t feel a thing when I’m wearing it, sleeping on the side that it’s on or when I’m moving my arm (not that I madly flap my arms around anyway!) The only time I’ve felt it is when I pulled my handbag strap up my arm and caught it but that didn’t hurt, I was just aware that I did it.

When I asked the Abbott staff if it could be worn elsewhere I was told no, only on the back of the arm for now. This has been the 1st time for me that I’ve had anything on my arm (I've never injected there or inserted a pump cannula) so I wasn’t overjoyed at the thought but as I said, I can’t feel it and often forget it’s there.




How much does it cost?

The starter kit containing 2 sensors (lasting 14 days each) and a reader costs £133.29 +VAT

The reader on its own costs £48.29 (with a 2 year warranty) +VAT

A sensor on its own costs £48.29 +VAT

Note – People with diabetes don’t pay the VAT on medical products. Please get in touch with Abbott for more info about this.


Did it hurt putting the sensor on?

Not at all! I didn’t feel a thing and I was really surprised by this! I’m used to feeling a pinch and a slight sting when I insert my insulin pump cannula but the Libre was pain free – everyone else who tried one that day said exactly the same. One of the staff from Abbott who was there on the day watched me as I inserted the sensor and said that I scrunched my face up just before putting it on. I must have been anticipating a sharp scratch, but I was very pleasantly surprised.


When can I get one?

We were told that the Libre will be available to buy online from the end of September/early October. You might want to contact Abbott yourselves nearer the time to see if they have a specific launch date.


What does the reader do?

As I said before, the reader is used to manually scan over the user’s sensor in order to see an instant blood glucose reading - all information is stored for 90 days. The reader also has many options to view the data depending on what you want to know.

The main screen, after scanning, shows the time, battery left, amount of time before the sensor ends, the glucose reading, the trace history on a graph and an arrow to show which direction your blood glucose is heading. Other options include; a logbook, daily graph (with options to look back over other days), average glucose in 4 time blocks (going back 7, 14, 30 and 90 days), daily patterns, time in target (also above and below target) and your personal target range, low glucose events (anything below 3.9mmol/l) and sensor usage showing the amount of times you have scanned.

All of this information can then be downloaded to your computer via a USB which is included. I’m yet to download but I’ll blog about it when I do.







How easy is it to set up?

It was really easy! I’m not one to read instructions but for this I wanted to make sure that I didn’t cock it up so I did have a look at the enclosed manual. Step by step the process of inserting the sensor is explained with text and pictures – If I can do it, anyone can!! When it came to setting up the reader you just need to follow the instructions on the screen – date, time, target blood glucose etc. and you’re all set! The reader takes 60 minutes before you can scan for the first time (and I imagine this is the same when starting with a new sensor) but has a lovely countdown clock letting you know when it will be ready for use. As far as makig changes goes I’ve been able to re-set the time on my reader and adjust my glucose target with no problems. There is only 1 button on the reader, which makes navigation through the menu’s quick and easy, the rest is done via the touch screen.


Who can use it?

The Libre will be available to people in the UK, France, Germany, Italy, Netherlands, Sweden and Spain. Currently Abbott are only able to sell the Libre to people over the age of 18, though they did stress that they are committed to actively pursuing its use in patients under 18. Watch this space!!


Will I still need to prick my fingers?

Personally I have been using my old blood glucose meter but not as often as I was. For me, I need to use my old blood glucose meter to calculate my insulin:carb doses and correction doses, my meter also bluetooths that information to my insulin pump, therefore eliminating the need to go rummaging around in my bra to press buttons on my pump when I’ve stashed it in there.

Abbott did stress that if someone is making decisions about taking insulin based on a reading from the libre they should check their blood sugars on a separate meter as there is a 5 minute time delay from the number you see on the screen to what your glucose level is. There is an option for Health Care Professionals to work with patients who use the Libre which will allow them to set the Libre up to give insulin suggestions, however I haven’t been able to try this feature yet as I’m not working with my HCP with my use of the Libre. Abbott did say that they are trying to reach as many HCPs with the Libre as possible so they can help patients if they have any questions or want to discuss their diabetes management alongside using the Libre.

Something I’ve also been doing when using the Libre and testing my glucose on my meter is comparing the results to see what difference there is in the given readings. So far I haven’t noticed differences that are jumping out at me and suggesting that the Libre is way out when it comes to accurately measuring my blood glucose. As I mentioned earlier, we need to be able to trust technology, which is why I’m comparing it to other meter readings on occasion.


How accurate is it?

This is a tricky one... Upon meeting with Abbott we were told that they were very confident that the Libre was more accurate than the current technology out there, The first day went very well and after making comparisons with my trusted accuchek blood glucose meter I was impressed at how close the readings were - only 0.2mmol/l out at the most!

As the days went by this gap slowly widened and I did begin to question the accuracy (taking into account the 5 minute time delay) and if I would base any insulin calculations on the information given by the Libre.

About 30 minutes ago though I flashed and had a reading of 3.7mmol/l (hypo). I didn't feel low so I checked on my meter as Abbott had recommended we do to make sure we weren't
making decisions solely based on one reading and saw that my meter read at 4.0mmol/l. Which was correct?? I grabbed a third meter which showed 4.5mmol/l! I flashed 20 minutes later and the Libre says my glucose is 3.3mmol/l... I don't feel hypo at all and 2 meters say I'm not, but do I risk not treating in case the Libre is correct? What if I wanted to get into my car? Do I now need to wait 40 minutes based on the Libre but not the machine that I have used and trusted every day for the last year?

I think you would need to make up your own minds on this one... 





What if a sensor doesn’t work?

We were told that if any problems occur with sensors or readers then to get in touch with Abbott who will replace or refund. The staff that I spoke with said that they are confident that the readings won’t ‘drift’ over the 14 days but if someone does find a problem then to contact their customer service team.

My Pros and cons:

Pros: 

  • Convenience - It's so quick and easy to pull the reader out of my pocket or bag, flash it over my arm and look at the reading that shows I just 1 secon
  • It's a pain free way to check blood glucose
  • It has boosted my confidence - I feel much more able to get on with my day knowing that I can easily check my glucose as and when suits me
  • I can 'flash' as many times as I like
  • I can see how certain foods affect my blood glucose
  • I can see which direction my glucose is heading in which enables me to act accordingly
  • I can see trends that I've never seen before - in the last few days I've seen that my overnight glucose is between 9-15
  • It's comfortable to wear and insert
  • It enables me to download 90 days worth of data which I can analyse myself and send to my diabetes team if necessary
  • It's incredibly cheap in comparison to some technology (some readers cost hundreds!)
  • It's easy to set up - I often worry about this as I'd hate to make a mistake and not be able to use it
  • It's aesthetically pleasing - colour screen, charts, large text etc.
  • It's not bulky - one of my worries about having something 'stuck' on me is that it will be obvious through clothes. My pump is easily stored in my bra and I'm pleased that the Libre sensor is discreet enough to cover with clothes if I wanted to
  • The battery life seems to be good, though this will depend on how many times you 'flash'
  • It doesn't need a finger prick calibration
  • It is enabling me to self-manage better and is making me feel much more involved in my diabetes care now that I am more aware of what my blood glucose is doing - It's strange how 'in the dark' I felt when restricted to finger pricking a certain amount of times a day

Cons:

  • If you don’t scan for more than 8 hours you can’t see a trace history – on the rare occasion I do sleep for more than 8 hours
  • Low glucose events – recorded when bg gets to 3.9mmol/l or below but I often feel hypo when my glucose goes below 4.5 – this eliminates some of the personal element
  • I could become reliant on the technology
  • It could cause me to become obsessive about testing my glucose levels
  • It doesn’t completely eliminate the need for finger prick testing
  • It offers the option to test blood glucose and blood ketones but doesn’t include a lancet, test strips or ketone strips
  • If my HCPs didn’t want to help me with the Libre/didn’t buy into the idea then I couldn’t use all of the options available to calculate insulin doses (to allow access the insulin calculator need HCP access code)
  • When making notes I can only put rapid acting insulin in whole numbers – Not accurate for pump users as we can use 0.1 units etc. on pump and some insulin pen users can use 0.5 units
  • Not as many options for looking at trends as my current meter - accuchek combo which offers daily, weekly, charts, scatter graphs, pie charts, standard deviation etc.
  • Can only put on back of arm – I much prefer using my stomach
  • And the biggie... I can’t afford it. Yes it’s an amazing price compared to current diabetes technology that can be self-funded but as a student who isn’t able to work full time, I can’t spare £96 a month.


So... would I buy this product (if I wasn't a poor student?) At this point in time, the jury's out on that. This is only my 3rd day of using the sensor and apart from the mixed messages with my hypo(?) I have been very impressed. I plan to make a few video blogs throughout the next few weeks so please keep an eye out for more updates. I hope this blog has been helpful for you! If you can afford it then perhaps it might be worth trying it out for yourself as the initial start-up cost is much lower than CGM technology... everyone is different and this may be the product you've been looking for!


Feel free to ask me questions on twitter - @ninjabetic1 or on facebook - ninjabetics and I will do my best to answer them all.



Ninjabetic x 







For more details about Abbott's FreeStyle Libre please visit their website at https://www.freestylelibre.co.uk/

Monday, 25 August 2014

Diabetes - We speak the language










It’s bitter sweet, isn’t it? On one hand, no one wants Type 1 diabetes (or any type for that matter) to come knocking at their door. No one wants a life-time of insulin injections, pump set changes, finger pricks and carbohydrate counting. Within the diabetes online community, I often hear people being welcomed into ‘the group that no one wanted to join, but everyone is glad to be in.’

Why is that? Because on the other hand, the illness itself can be incredibly motivating and, for many, can provide a sense of empowerment. Those with diabetes develop will-power; they develop knowledge about the human body, they exercise their brain 24/7 by staying one step ahead and thinking like a pancreas, they exercise their bodies and treat them well, they become mini mathematicians through carb counting, measuring blood glucose levels, calculating correction and bolus doses… the list goes on and shows that, in fact, having Type 1 diabetes can make us incredibly determined, empathetic and bring purpose to our lives. Type 1 diabetes, through its bad points, allows us to create our own unique skill-set.


This brings me to talk about the incredible weekend that I’ve just spent with 132 youngsters, from 12 countries, who all have Type 1 diabetes. The cause… To provide them with the opportunity to meet other people with diabetes from all over the world, to share stories, experiences, expertise and to support each other throughout a Junior World Cup. The event was organised by Medtronic, showing that we all speak the universal language of diabetes. 




Looking at the players you wouldn't have a clue that they had diabetes and honestly, 99% of the time I forgot that they did! Leaving the airport with the Spanish team, the kids were beyond excited as they danced, laughed, showed off a few moves that they would be saving for the pitch the next day. It wasn't until I saw a tiny piece of pump tubing poking from underneath of one of their tracksuits that I remembered why I was actually there. Why we were all there. It was diabetes that had bought us all together, however, as someone who has diabetes herself, the best part was seeing them getting on with things and not letting their diabetes stop them. It really was hugely satisfying to see how little their diabetes bothered them and that the most important thing at that time was getting together with their new friends. 

This year's UK team were all insulin pump users. The aim of this was to raise awareness about insulin pump technology and what it can provide for young children and teens. It was interesting for me to watch the team, and their accompanying parents, throughout the weekend, noting that the kids were pretty much in control of their own pumps, their testing and treating highs and low. And rightly so! This technology (especially when linked with a CGM) should allow for parents to relax a little, give them the confidence they need when their kids are off doing their own thing and provide them with some comfort that the kids can safely manage the technology. Of course, the worry will always be there, but one of the aims of an insulin pump is to alleviate some of that. For the kids I could see that the pumps promoted independence with their diabetes, something that I imagine was very important for them as many were heading to secondary school within the next few weeks! 

Not only that but for growing guys and girls; flexibility seemed to be key in their lives!


"I can now eat what I want, when I want."


"I usually take it off for football matches and check at half time."


"The pump allows for my sugars to be better controlled before, during and immediately after sport."


"The CGM lets me watch my sugars closely before and after sport as well as when I am playing."




The bonds that were made looked tight. The team were just that - a team, and despite only meeting each other on the weekend they had a couple of things in common! Diabetes, football and instagram were the main topics of choice. I was even persuaded to re-start my instagram account as I wouldn't be "cool" unless I used it. It was evident that the team had two main goals that weekend, having fun and learning! That's what the event was all about and the UK team certainly did that from what I saw.  

Charging up and down the pitch, the kids took it all in their stride. Testing before the match, playing for 10 minutes, testing and treating a hypo (if necessary) during half time, then getting straight back to it. "I'm 8.8!" I heard someone shout, "Me too!" said someone else as they shared their blood glucose levels after a match. Looking around me other teams were doing the same. Some comparing pumps, pens, numbers, football boots, blood glucose meters... Though I couldn't understand what they were saying it didn't matter. I knew that when I saw someone handing their friend a bottle of juice it was because they were hypo. 




Diabetes and support doesn't always need to be heard to be understood, but it does needs to be seen. Parents will know, people with diabetes will know... Often you just have to look at someone with diabetes to know exactly what they need. I think that's a really important lesson when it comes to gaining more of an insight into our condition and definitely something that this event proved. Type 1 diabetes goes far beyond what has been written in a book or a leaflet, what is delivered in lectures or during sales pitches, and it goes far beyond the 15 minute appointments that we recieve. The condition is personal to each of us, to each of the kids that I saw on the weekend, and can't be treated with a 'one size fits all' approach. Flexibility and understanding are key in the self management of diabetes, whether that's gained through sharing experiences, tips, advice or just sitting back and listening to others. More importantly though, learning through real experiences, through seeing, not just hearing, is what it's all about and I believe this is what the event showed on the weekend, if that was the aim or not. 

So well done to the teams, you've taught me, you've taught your team mates and you've taught many people that diabetes is a language that can be understood by everyone. 


Ninjabetic x 



The UK team - Winners of the Fair Play award



For more information about Medtronic and the products the have please visit their website here - http://www.medtronic-diabetes.co.uk/ 

For information about how you can be a part of the Junior World Cup 2016 please 'like' the Junior Cup Diabetes facebook page or 'follow' them on twitter.

To view more pictures and videos of the event take a look at my facebook page, Ninjabetics, and twitter account @ninjabetic1




Thursday, 21 August 2014

A smile goes a long way



In comparison with my other blogs this will short and sweet (no pun intended!)… It’s just something that I wanted to note down because saying thank you to someone goes a long way… but saying it in a blog means it goes even further.

I’m the first to admit that when it comes to my care and treatment, if something goes wrong, if something isn’t quite up to scratch, I don’t tend to sit and dwell on it. I openly talk about my health care online; often to see if something is the norm, to gain different perspectives, to let the professionals learn from my experiences…

So today I thought I’d share an experience that helped me gain a little perspective, possibly even changed my mind about the decisions I have made recently to move my care from Secondary to Primary. That experience was down to the reception staff at my diabetes clinic.

Getting out of my car I knew that I would only need help from the receptionists today and I knew, from experience, that I would get a first class service from them. As expected, I was greeted with a smile and a kind welcome, no job was too much despite a queue behind me of people wanting to book appointments, my enquiry was dealt with quickly and professionally and I was thanked (why was I thanked?) more than once for coming in.

Looking back at other health care settings I often leave feeling frustrated and angry (once or twice in tears!) at the lack of help and sometimes lack people skills that I’ve experienced, feeling that I'm just getting in the way. On occasions I've been left without insulin, test strips or refused appointments during an emergency... Also, we all know that a clinical environment isn’t the most relaxing and welcoming setting. Often they are cold, quiet and sterile looking rooms that are in desperate need of a new coat of paint. Often people feel anxious about going to see a health care professional, worried about getting test results or having to discuss problems that have been affecting them… Even so, a warm welcome is all it takes to make the visit a little better for the patients. 

If impressions are made within the first 5 seconds of meeting someone, I’d definitely say that the impression I get from the Queen Alexandra Hospital “front of house” diabetes staff is right up there! This goes far beyond the reception desk, and I feel that the happy, kind and caring nature of the reception staff must rub off onto others who work there. It certainly rubs off onto me!

So credit where credit is due… well done and thank you – Keep up the great work!



Saturday, 2 August 2014

Basal Check Time



This is a joint blog between myself and Pete Davies (@swelldiabetes), a Diabetes and Endocrine Consultant from Sandwell. Pete is always keen to engage with patients and listen to their ideas about how diabetes care and self-management can improve. He wants to find ways to make basal testing easier and more enjoyable for people, so we gathered our thoughts on the subject and put them on paper. 

What Pete and I are hoping to do is to set up a live basal test via social media. We don't have the logistics just yet, but we do have a few ideas in the pipeline, so watch this space.

We would appreciate it if you could comment at the bottom of this blog (or on facebook/twitter) with the 1 thing you find difficult about basal testing. It'll give us some ideas on how we can make basal testing easier for you!

We hope you enjoy our blog :) 



Pete's blog

Good ideas can come at any time & I feel at my most creative when I am with groups of PWD (People With Diabetes). Last week we had a DAFNE course for insulin pump users. One of the games us educators like to play is to tot-up the number of years of D experience in the room. 

6 PWD. 
136 years experience of living with diabetes.
Humbling.

We talked about loads of things & they had plenty of questions. These days I always take the opportunity to do a gentle sales pitch on social media as a means for getting on-going support, practical and emotional too. The reception can be mixed, this group seemed quite open to the idea. One person was already using Twitter, two others use Facebook. None of them presently use it to get support with their diabetes.

HCPs a have a strong belief that regular basal checks help PWD keep their pump therapy on course. At the same time, realists accept that it's rather like those stretches we know we should do after exercise, those five pieces of fruit and vegetables we know we should eat each day... It all sounds so easy and nice, in principle…

During our conversation, my sales pitch about Twitter and about the need to promote easier basal checks seemed to meld together into a Dragon's Den pitch:
Group Twitter chats could be just what is needed to help support PWD to complete their basal checks and to make the right to changes to their basal insulin doses when they are armed with good information.

So PWD on #ourD & #doc, I'm looking for £100,000 for a 30% stake my business... 

What's that you say? Have I registered my intellectual property??  


Pete (@swelldiabetes) 




My blog

As Pete mentioned, basal tests are something that people with diabetes *should* do, but sometimes... don't. We each have our reasons for why we do or don't chose to follow the 'rules' or advice that our HCPs (Health Care Professionals) give us, and of course we should all be free to make our own decisions, but perhaps there is a way that basal testing could be easier? Maybe even fun? Would that encourage people to basal test for our own benefit AND keep our HCPs happy?

I can count on both hands the amount of times I've done basal testing, and since starting on the  pump I've really slacked doing it only once in the last year. Some of my reasons for why I haven't done as much as I perhaps should have are:

Timing - Is there ever a good time to basal test? I'm constantly on the go, whether I'm at Uni, studying in my own time, working, looking after my patients on placement etc, I often find that my mind is on other things. It's not that my health isn't as important, but a lot of the time I need to pay full attention to what I'm doing and give it all the energy I have. I like to have a quiet day to do basal testing and that in itself is a very rare thing for me.

Hypos - They nearly always seem to crop up when basal testing is about to commence! Obviously if a hypo occurs during a basal test this indicates that my background insulin may be too high and allows for changes to be made, but 9/10 if a hypo's coming it comes before the test starts. Then, once the hypo has been treated we have to wait again until we can start the basal test again... what if there isn't time to do it again?!

Food - I don't want to be hungry for 4-6 hours! It's as simple as that. If I do basal tests I tend to do it on a day off and days off are for relaxing, enjoying the things that I can't enjoy whilst I'm at work/Uni/placement and charging around at 100mph. Abstaining from food is the last thing I want to do.

Rules - What are they exactly? One HCP will tell me one thing, another will tell me something different. Can we eat zero carb food whilst basal testing? How long do we wait after a hypo to start the basal test again? Which blood glucose level should we start the basal test at? What happens if I happen to be rushing around that morning/afternoon/evening and it affects my levels? So many questions... and so many different answers.





Sunday, 20 July 2014

Show me your pump






#showmeyourpump is making the news after Sierra Sandison proudly strutted her stuff and showed off her insulin pump during the Miss Idaho competition. Now people with diabetes all over the world are doing the same and posting pictures of themselves wearing their insulin pumps on facebook, twitter, instagram and more. Not only is the hashtag going viral, but at the same time it's raising awareness for Type 1 diabetes, inspiring others to feel more confident with their insulin pumps, and encouraging people to try insulin pump therapy. 

I'm not one to be shy about getting my pump out and have been posting pictures of my beloved pump (Iain) on twitter and facebook from day one! Nor should I be shy about it... In fact, I love any opportunity to show it off, give a demonstration and answer any questions people have. Some people may think it's strange, but I'm proud to have a portable pancreas - It's far better than my original pancreas. It's an expensive bit of kit that many people want but aren't able to have, for lots of reasons, and it has given me the chance to have more freedom when it comes to living life with diabetes. 

So here are a few pictures from my facebook page of me, proudly showing off my pump!






Wednesday, 9 July 2014

Back to Basics



The 15 healthcare essentials… a check list for all patients with diabetes (devised by Diabetes UK) to show them what they should expect, in terms of basic care, from the HCPs (health care professionals) they see.
So what are the 15 healthcare essentials?
My monthly column for The Diabetes Times

Thursday, 26 June 2014

D-eye-abetes



A few months ago, at the end of a blog, I said that I had some good news. I was hoping to write about it (and celebrate it) much sooner but sadly almost 4 months passed before I had my news confirmed in writing.

In 2012 a consultant from my local eye department said these words to me; "You have stage four diabetic retinopathy. It's very likely that you'll lose your sight within the next 12 months."

I was beyond devastated. I was so scared that I couldn't reply or ask him any questions. I couldn't absorb the diagnosis I'd been given or make sense of it in my mind. The consultant didn't seem to understand the impact if his words, spoken in a small cubical with only a with a brightly coloured curtain separating us from other patients. He asked me to sign a consent form and then left me sitting alone to prepare for an hour long session of laser treatment on my eyes. That was the first time we met... I didn't even know his name.

In the months after this diagnosis I began to turn my diabetes around. Yes, this diagnosis was ultimately due to me neglecting my diabetes. I'd been warned of the complications that could occur if I didn't take care of myself, but I hadn't believed they would happen. I'd managed to slip through the NHS system roughly a year after my diagnosis and up until 2012 this had suited me just fine. I had no interest in attending diabetes appointments, they were incredibly generic and I felt that I was nothing more than a box that needed ticking twice a year.

But I was in trouble. Serious trouble that I couldn't turn around on my own. I refused to accept that I would lose my sight... I refused to accept that it was too late for me. The moment the consultant had spoken those words I truly began to appreciate what I had always taken for granted - my sight. I knew that I needed to fight incredibly hard to ensure I could beat this diagnosis, and that's what I did. My vision took a turn for the worst soon after the diagnosis, it was a period of time that took a lot of getting used to. I had to leave my job, temporarily, as I couldn't see my computer screen well enough. I couldn't drive, couldn't watch TV, and couldn’t leave the house without having someone with me. I lost a lot of my independence. 

It's true what they say... You don't know what you have until it's gone. The amount of treatment I'd been having for my eyes was certainly taking its toll on my vision but I knew that ultimately it was the best chance I had to stop them from deteriorating. Bright lights and dark rooms took a very long time for my eyes to adjust to, but after I'd had a lot of laser treatment, injections and operations, things started to turn around.

Over the past few years I've been having constant checks and tests to make sure I was on track and that my retinopathy wasn't progressing. I was aware that the stage I was at couldn't be reversed, but I could slow or stop it. I tried to form a link between my diabetes team and my eye team - I needed the communication between them to be strong but it didn't seem to form. This meant that I was passing on messages between the two which, at the time, caused unnecessary stress. Tightening up my blood glucose control had caused more problems with my eyes (something I hadn't been warned about by either team) but in the long run having better control was the best option, not only for my retinopathy but also to prevent any further diabetes related complications.




So the good news... In March this year the DVLA asked me to have an eye test to see if my retinopathy, or the treatment involved, had caused damage that would stop me from driving. Up until that point my consultant had said that he had no worries over me driving, and the DVLA had been informed of this, but it's always nerve-wracking having the fate of my driving licence in someone else's hands. Not being able to drive would cause me all sorts of problems and I expect it would cost me a lot of money to get around. Something that I can't afford at the moment. The DVLA took 4 months to send their answer (though they state on their website and forms that this process will only take 6 weeks!) and I finally found out this week that I've passed all their tests!! The field vision test that checks my peripheral vision was absolutely fine (laser treatment can cause this to deteriorate) and I can read a licence plate from the required distance :)

Finding out this good news after being told 2 years ago that it was likely I'd lose my sight has been wonderful! Although getting on track with my diabetes hasn't been easy it's definitely paid off. If I could pass on any kind of message from this journey it would be that I really wish I hadn't ever reached the stage where I was in absolute panic thinking that I would go blind... I wish I'd done something much sooner to prevent it from happening. If anyone else is going through a similar experience then I'd say hang in there, talk to your diabetes team and ask them to liaise with your eye team, research treatments and ask about what's available to you (Avastin was purchased by my hospital Trust but isn't used by all) and slowly tighten up your diabetes control... Quick changes can sometimes cause problems, so it's best to be slow but steady - that's why it's important for your diabetes team and eye team to talk to one another.


Ninjabetic x