Sunday, 1 March 2015

64 days on MiniMed 640G: Managing my Type 1 Diabetes. Week 1



Some of you may know that I've been lucky enough to be offered a 64 day trial of the brand spanking new MiniMed 640G by Medtronic. Why 64 days? Because the number 64 is in the pumps name. Why not 640 days? Well, I asked (a few times), but sadly the answer was no. But hey-ho... I'm not complaining! 

So during the 64 days I'm going to be vlogging (it's like blogging but with videos - vlogging!) on youtube about my experiences with the 640G. You'll also find two other patients with Type 1 who are also using the 640G and will also be vlogging - Dave (@SowerBee) and John (@MM640G).

For those who haven't heard about this pump you can find more info on a previous blog that I wrote about it. It goes into a lot more detail about the technology and the aim of the new system,




What can I tell you so far about the pump?

Ok, I'm only a few days in so I want to start with the insulin pump. It's taking some getting used to as I've been using another pump by another company for 2 years now. I found it really helpful to sit down with a cuppa after my training and just have a look around the options and settings, just taking time to get used where everything is and how to access the options I'd be using. It's important to be comfortable with medical technology - There's no set time that you should be used to it and 'flying' through the options. Everyone learns at a different pace. Asking lots of questions helps! 

The pump itself - I love it! 

I'm not just saying that because I'm trialling it - but I really rate it (yes rate, not hate) and after a week of using it I would be more than happy to continue using it in place of my regular insulin pump. As a stand-alone pump (forget the CGM and SmartGuard for now), it's bloody impressive! I've never used a Medtronic product before so I have no idea how similar it is to other pumps they have, but personally I think it has set the standard in terms of what's on the market at the moment.

The pump provides a vast amount of options and functions, offering much more control (in terms of diabetes management) than I'm used to. For some I can imagine that may be slightly intimidating (I was a little overwhelmed during my training session) but don't let the amount the pump can offer put you off - as a patient you are in control. Now that I've had a few days to get used to the pump I can see just how beneficial it can be to my day-to-day diabetes management. In a strange way, as much as it gives me more control, I also feel it gives me more freedom through the choices I can make.

It's the little things that have impressed me...


For example - I can flag specific events that have affected my blood glucose (BG), so if I've had a mahoosive pizza and my BG has shot up I can flag that on the pump. Similarly if I've had a post running hypo, I can flag that too. Then in my appointments when my consultant says to me...


"What happened on this day 2 months ago?" 

my answer won't be... 

"2 months ago? I don't remember what happened 2 hours ago!"


... but it will be flagged in my data which will give us both more insight into what actually happened, rather than guessing. We all know how hard it is to remember every little detail! 


Other awesome pump things... (These aren't all of the options but they are a few of my favourites).

  • It has a big colourful screen - this is a huge help to me as I have retinopathy
  • Sexy design - It looks like an iPod and is very sleek and smooth (does that sound weird?)
  • The belt clip is also the key that unscrews the battery cap! (No more 5p tricks!)
  • It has a back button (this impressed me far too much)
  • The menu is incredibly easy to navigate
  • There are clear sections in the menu depending on which info you need - e.g. history which is broken down into sub-sections - alarm history, daily history, sensor glucose history etc. 
  • The pump will remind you when you need to change your tubing and re-fill your reservoir (no more "when did I last do that?" moments
  • It has a 'reminders' section which has sub-sections that can be personalised e.g. reminders to take other medications, check your BG, a 'missed meal' reminder etc. - I really like how personal I can make this pump!
It also has the regular functions that you would expect from an insulin pump, like bolus delivery options and temporary basal rates.


Are there any cons? 


One biggie that had me worried when I started using this pump was that the blood glucose meter that works with it doesn't have a bolus wizard, only the pump does.

A bolus wizard basically calculates the amount of insulin you need to take for a meal (or a correction dose) depending on your blood glucose levels, the carbohydrate content of your food (if applicable) and other factors such as exercise or illness. Now... my current BG meter has a bolus wizard which does all of this and then sends (via Bluetooth) the amount of insulin I need to my pump which then delivers it, meaning I don't need to fish around in my bra or pockets to find my pump and do this manually. 

Th Contour Next meter (the one working with the 640G) doesn't have that function, meaning trips to the bathroom or a different room to pull the pump out from wherever I've hidden it in order to use the bolus wizard. There is an option on the BG meter to deliver a pre-set dose of insulin from the meter straight to the pump (no fumbling) and also to give a dose of insulin that you've decided yourself straight to the pump (also, no fumbling). 

For some people this isn't a huge con, but I think it depends on how open you are about using your insulin pump - everyone is completely different. Personally, I don't mind people knowing that I have an insulin pump, however, depending on the situation (a meeting or a lecture for example) I would much prefer not to be fumbling around in my bra for my portable pancreas. 

Currently this is my only con and one that I was aware of before getting the pump. But who knows... at the end of the 64 days maybe this won't be such a big deal for me! At the moment the pros certainly outweigh the cons!



I'll blog about the CGM and SmartGuard soon... I promise! 





Ninjabetic x 


Helpful links

Medtronic





Sunday, 22 February 2015

Blood glucose testing



Blood glucose testing... in a tree... as you do :) 

ps - I did have a hypo minutes later! 







Ninjabetic x 

Tuesday, 10 February 2015

Hid-In Multiway Insulin Pump Body Band Review

                                 


My review of the Hid-In multi-way insulin pump body band.

I hope you like it - feel free to share it :)  



                                      


You can find Hid-In on twitter, facebook and their website



Ninjabetic x




Monday, 9 February 2015

MODZ - The Intelligent Blood Glucose Meter





I remember my first blood glucose meter. It was grey and bulky, living in my bedside draw, only to be used when I was on the verge of a hospital admission. I didn’t understand what the numbers on the screen meant, testing my blood glucose levels was just something that I’d been told I had to do. The message behind the numbers was non-existent, partly due to a lack of education, but mostly due to a lack of interest in the device itself. As a teenager, carrying around a grey and bulky medical device wasn’t my thing. Any gadgets I did have were modern looking and engaging. My blood glucose meter didn’t suit me but that doesn’t mean that I didn’t need it. I wonder how different my diabetes management would have been if I’d been given a meter that I actually wanted to use…

When I was told about Modza blood glucose meter with Angry Birds gamification and eHealth features, I was intrigued. The device was aimed at children and young people, but instantly the big kid that lives inside me wanted to know more!





The meter looks like a lot of fun! It comes in bright, funky colours, with 2 user interface options – Modz or Angry Birds (how cool is that!). The meter can remind the user that they need to test their blood glucose by showing an image on the screen, playing music/whistles or with vibrations, which helps people to be consistent with their testing. The meter stores not only blood glucose results (3000 of them!) but also carbohydrate content, insulin doses, and any exercise undertaken, giving the user a better picture of what affects their blood glucose levels and how. The meter is also motivational, making blood glucose measuring fun by giving points and rewards. Modz have done this because they want to make blood glucose testing exciting, but also with the aim of it leading to, and maintaining, a great HbA1c.  






Now here’s the really cool part… the meter will then automatically send a text message with the results in real time to a mobile phone or email, as well as a designated cloud service to be accessed at any time by the user, their parents/carer and results can be sent to their Health Care Professionals! There is no need for cables! Personally I love the text message idea and was really impressed when I heard about it. I hear from so many worried parents who want know that their child is safe whilst at school, at a sleep over etc and their biggest worry is what their child’s blood glucose is. This seems like the perfect option - peace of mind and reassurance for the parents whilst the kids get on with being kids. Also, parents won’t need to worry about reminding their children to test because the machine does that for them!

After asking a few questions to the team at Modz I found that is not yet available for free in the UK, however plans are in the pipeline for the meter to be available on the NHS in the near future (fingers crossed!). I also enquired about technical support and was told that there is a 2 year guarantee on the meters (just contact Modz and they will send a new one) and there is technical support available via phone on weekdays as well as a list of FAQs on their website.

Modz has launched this exciting new product today (Tuesday 10th February 2015) and it can now be bought through their website. Check out their site out for more Modz blood glucose meter information. 






                                      



You can find Modz on a number of platforms: FacebookTwitterLinkedin, Instagram, youtube and of course, their new Website




Ninjabetic x 

Tuesday, 20 January 2015

Diabeto Device - The new kid on the block



Diabeto - Your friend in Diabetes!




Today is an exciting day for people with diabetes as the hotly anticipated Diabeto Device is now ready for pre-order! Diabeto have launched their impressive indiegogo campaign where you can find all the info you will need to know about the product, the ideas behind it and the dedicated team that created it. It really is impressive - You should definitely check it out! 

I have to say that I have been waiting for this device to hatch and spread its wings for what seems like forever (in reality only 2 and a bit years) and I’m really excited that it has finally happened, not only because I desperately want one, but because I’ve seen how hard the team have worked to make this a fantastic product available for people with diabetes. 

The overall aim of Diabeto is to make diabetes management easier for us, to give us a tool that is empowering, to give us insights into our blood glucose levels and what affects them and to help us to have a better quality of life.

What I like about this device (and that's before I've even laid my hands on one) is that is was created by people who went out of their way to involve people with diabetes in the design and build process. All too often I use products or apps and I'm left wondering how much real patient or carer input has gone into them, but with Diabeto I know that it's a product for people, not just for a condition. This is something that's very important to me as the diabetes/tech industry continues to grow and I think many companies could learn a lot from these guys.

Team Diabeto

Diabeto comes in 2 parts - The birdy device (see pics) and an app. The bird plugs into your blood glucose meter and sends (via bluetooth) your blood glucose info over to the app on your smart phone. Readings are then stored onto a secure cloud server so you can access them. Simples! 

Here are some of the features that I really like: 
  • The device itself really appeals to me. It's fun, small and doesn't look like a medical device. Great for kids but I'm almost 29 and I would definitely use it
  • It can be used on the go
  • The app allows you to track more than just your glucose. You can track your mood, insulin, carbs and activity as well as review your blood glucose log.
  • You choose how much or little you want to track
  • The app will plot a blood glucose graph for you so you can pick up trends and patterns. This can then be sent to your health care team in pdf format - putting the patient in the drivers seat
  • The app is free and available on iOS and pebble watches. Android users (myself included) hopefully won't have too long to wait for the app
  • Readings are secure in the cloud
  • Diabeto is compatible with 25 blood glucose meters and the team are working on making it compatible with more
  • Diabeto uses open source hardware meaning that schematic, design files and a bill of materials can be downloaded and used by anyone - The Diabeto team wins some serious cool points for opening it up to the community!




Take a look at the indiegogo campaign for more details on the device and also details on how you can pre-order your very own Diabeto. You'll see that you can also get the device at a special price - The first 100 birds are only $49 (usual price $59)!!

They also have a range of cool perks should you wish to support and contribute to Diabeto including:
  • $1 - A thank you for being part of the family gets you regular updates and your name on the website's 'Thank You' page
  • $15 - Diabeto stickers and your name on the website's thank you page
  • $25 - Diabeto Rockstar t-shirt
  • $29 - Rockstar T-shirt and sticker pack  
and there are a whole load of great offers on Diabeto packs!





You can find Diabeto on:
Twitter - @DiabetoDevice
Facebook - Diabeto 
Website - diabe.to
and of course, indiegogo - Diabeto. Your friend in Diabetes!





Ninjabetic x 


Saturday, 17 January 2015

Medtronic MiniMed 640G and SmartGuard Technology








Yesterday I went off to Medtronic’s UK head office expecting to continue with our usual blogger and patient advocacy meetings. What I didn’t know was that I was actually going to be given an exclusive preview and test run of the new Medtronic MiniMed 640G insulin pump and CGM system with new SmartGuard technology! Now that's what I call a good day! 

As a Medtronic patient advocate I have been working alongside them, with a group of other patients and carers, to help them move into the world of social media and digital health care, and to offer an insight into what patients really want from diabetes technology. This in itself bought me the opportunity to travel to Amsterdam last year to blog about their Diabetes Junior World Cup, and here I was again, with yet another opportunity!

I should explain something else… I’m not currently a Medtronic user, but what I really like about the company is that this doesn’t matter to them. I have diabetes, I live with it day in day out and I have views about it – the products that I do or don’t use (often this is out of my control anyway) doesn’t matter to them. This, of course, doesn’t mean that I won’t be a Medtronic user in the future and with the new and exciting MiniMed 640G technology, I could be easily persuaded.

So… enough about me… the 640G is what you need to know about!



The MiniMed 640G is a sensor augmented insulin pump. Medtronic has a vision and that is to create an artificial pancreas and their 640G is the next step towards achieving that vision. Their aim is to create technology that gives people more freedom, improved safety and better health when it comes to diabetes. We know that many companies have this same aim but this product (from what I saw) really does deliver those aims.  

The 640G uses a new technology called SmartGuard. SmartGuard is designed to give people advanced protection against hypoglycaemia and hyperglycaemia. The intelligent system has been based on the wants and needs of people who already use the Paradigm Veo insulin pump, providing better blood glucose control and safety, especially when it comes to nocturnal hypos – something that I think worries us all from time to time.



The system is similar to Medtronic’s Paradigm Veo but, as I said, it’s far more advanced. The Veo has a low glucose suspend function in which the pump will turn off insulin delivery for up to 2 hours if a person's blood glucose levels reaches a pre-set low glucose threshold. However, the new SmartGuard tech will turn off insulin delivery before a person's blood glucose hits the low glucose threshold, therefore avoiding hypoglycaemia. It does this by predicting a persons blood glucose levels 30 minutes before they are going to drop (providing they are also using an Enlite CGM - Continuous Glucose Monitor). The prediction is based on how quickly the person’s levels are dropping. The pump will alarm/vibrate to alert the person that the insulin delivery will then be turned off (for a minimum of 30 minutes) and will stay off until their blood glucose starts to rise again or until they feel better and manually override the system to turn their insulin delivery back on. 

When insulin delivery is turned off to avoid a hypo this means that all insulin is turned off - basal and any bolus programmes that are running - e.g. dual wave. If the person would prefer to eat/treat before the auto-suspend starts then they can stop the suspend function and treat the impending low like they usually would. The user is very much in control of how the system works. 

A high threshold can also be set, in which the pump will alarm/vibrate if a person is going to reach their high level, therefore allowing them to manage the impending high (correction, temp basal increase etc). The pump will not automatically deliver more insulin if a person is reaching their high threshold - This is what a closed loop system (artificial pancreas) is but the technology isn't quite there yet.



One important question that was asked by fellow blogger Mike (@everydayupsdwns) was; What happens if a person’s blood glucose drops below the pre-set low glucose threshold but does not rise again within the 2 hours that the insulin delivery has be turned off for? The answer is that the pump will only turn delivery back on after 2 hours if the person has physically interacted the pump e.g. pushed a button, therefore the pump is recognising that the person is aware of the hypo. If, for example, they are unconscious and do not press any buttons, the insulin delivery will be suspended for a further 2 hours, so 4 hours in total. After those 4 hours… well I just hope that the person would be found by then.

We joked that the pump could have technology like cars do which alerts the emergency services if it is involved in an accident and its location. I actually think this is a brilliant idea. Maybe something for the future, eh :) 

We were told that the algorithm that is used in the SmartGuard technology was the same that was used in the Pilgrim Study in which 80% of hypos were avoided during exercise. The remaining 20% were due to levels that were dropping at a very fast rate which resulted in the persons blood glucose levels hitting their low threshold marker. 



This brings me to alarms and vibrations. In the situation Mike mentioned above, alarms will be set off by the pump to alert a person that they are heading towards, or have reached, their low glucose threshold, therefore hopefully alerting someone else to the unconscious person. It’s a scary reality, but something that we do need to think about as people with diabetes.

The alarms can be turned off though! If you’re sitting in a meeting or your child is in assembly, or if you just want to sleep the whole night through (and you’re other half too!) the low and high threshold alarms can be turned off to avoid that beep beep beeping. The person using the 640G can turn the alarm off themselves, but this doesn’t mean that the low or high thresholds will be turned off. It just means that if a person is heading for a hypo then the pump will deal with it without alarming. If a person turns off the hyper alarm then the pump will not be able to do anything about the levels heading up. Sounds a little scary doesn’t it… Turning off the alerts and letting a device do its thing... but as @LwSweetpea88 pointed out – It’s hard to trust new technology, but you don’t know what it will be like until you’ve tried it.



A few quick bits about the MiniMed 640G

  • It will be available in the UK, Sweden, Denmark and Australia – I believe it will be launched in early February (the 2nd)
  • It’s licensed for use by children 
  • It needs a calibration at least every 12 hours
  • The sensor life is 6 days
  • If a person decided to restart the sensor past the 6 days then it may well result in a calibration error – if the sensor has 2 calibration errors then it will stop working
  • Low level auto-suspend had a minimum suspend time of 30 minutes
  • Insulin delivery will only be turned back on when the trending arrows on the receiver are pointing up (meaning that glucose levels are rising sufficiently)
  • There are a choice of high and low alarms
  • There is an alarm if the user’s blood glucose levels do hit the low threshold (though the aim of SmartGuard is to avoid hitting this threshold)
  • The user can choose to have no threshold at all
  • The pump pairs (via radio frequency) with the contour next link USB blood glucose meter
  • The pump has a bolus wizard, the blood glucose meter does not
  • The blood glucose meter can tell the pump to deliver manual insulin doses (decided by the person using it) or pre-set doses - e.g. 2 or 4 units
  • The pumps come in cool colours (and I think look a little like iPods)
  • It’s not too big and not too small – comes with a clip and you can also buy Lenny the Lion rubber protective cases for it! 
  • The pump has a colour display screen
  • The display on the pump has colour coded icons which let the user know if they are running low – e.g. the battery will be green, amber or red depending on how much battery is left 
  • The screen is a lovely size (really important for me as my retinopathy means I’m always squinting at my tiny pump screen)  
  • Both pump and CGM are waterproof  
  • The system uses the Enlite sensor & guardian link transmitter (the transmitter has been improved - so we were told)
  • The pump has a 'back' navigation button! This may seem like a small detail but my current pump does not have this, meaning I have to scroll through all options if I miss the option that I want
  • 5 basal settings can be used, temporary basal rates can be set and the pump has options for bolus doses to be delivered in different ways (e.g. dual wave)
  • The pump does not need to be used with CGM - It can be used as a stand alone insulin pump (obviously this will leave the user without the option of the low and high thresholds, alerts and CGM trace etc)
  • CGM data can be uploaded via Medtronic's software package, CareLink, and sent to your diabetes team
  • People will be able to purchase supplies through Medtronic's e-shop



Something I haven't mentioned is price... and that's because I don't know it. I did ask the question and I was told that it wasn't a huge step away from the Veo and enlite sensors as a combination, but we will have to wait for more information on that one. 

That brings me to the end of the scribbled notes that I took during the meeting... I suppose the only question I need to ask myself based on what I saw and know is would I use it? 

My answer (if self-funding and CCGs didn't have any influence over my decision) is yes, without a doubt! I'm fed up of waking during the night with low glucose, worrying about what my levels are doing and if I'm going to need to treat a hypo during a meeting or whilst I'm on placement. I'm fed of of the growing fear that one day I might need an ambulance call out or that my driving licence might be taken away from me, that I might end up in a dangerous situation due to my diabetes. I'm also bloody fed up with my constant battle with hypos and exercise! But that's a whole other story.

I hope this blog has been useful to you... I'm aware that I have been using notes to write much of this blog but I hope what I have said is accurate. I'm sure Medtronic will be releasing more information soon, but until then please feel free to share this with anyone who might be interested!

Also - Here's a video with some nice visuals 



Ninjabetic x 





Wednesday, 14 January 2015

Diabetes – My Beautiful Disaster




Diabetes – My Beautiful Disaster



There is no knowing when you hear those words spoken,
“Your body, we can’t repair, you will remain broken.”
What this would touch was a mystery to me,
They said it may disable or kill… we shall see.


The years, they slipped by and yet there was nothing,
The admissions, the warnings, they must have been bluffing.
I’m invincible you see, with a layer so strong,
You can tear it down, but I will build it up, though I know that it’s wrong.


“She won’t accept or apply or attend” they said,
“This girl, she’s too stubborn and full of neglect.”
But what clouded my thoughts were those words once spoken,
“Your body, we can’t repair, you will remain broken.”


More years, more admissions, more avoiding the concern,
Then one day it hit, it was time for my turn.
“You’ll be blind within the year” they said, as I lay on a table,
Their masked faces above me, poised with tools, I was unstable.


I drifted away, sleeping soundly as they worked,
Waking to the pain, and a weak voice that once lurked.
“You need to control this, you need to get better,”
“Don’t hold yourself back, it’s now or never.”


Alongside that voice was another much stronger,
“Don’t let them control you, you’ll be free no longer”.
Remember those words that were once spoken,
“Your body, we can’t repair, you will remain broken.”


Why try, why fight, why bring myself pain,
This life thrust upon me, I had nothing to gain.
They said it themselves, there was nothing to give
The fight it would take, would it help me to live.


The months, they passed by, I was reluctant at first,
It’s not fair, why me, why had I been cursed.
I resented my body, my thoughts and my actions,
But I needed to fight, face my fears, escape distractions.


The years they passed by, no blindness in sight,
Had I won a small battle, had I lead the fight.
The fear resides inside me, the tales spoke the truth,
I wish I’d acted sooner, before exhausting my youth.


I took a stormy journey, filled with disappointment and blows,
But on the other side of this disaster is a beauty that grows.
And so, to those words that were once spoken,
It’s my body, it’s my fight and your words… they can be broken.




Ninjabetic x 


Saturday, 10 January 2015

The Language of Diabetes



I’ve been thinking recently about the way that I talk about diabetes and the way that others communicate with me and also about me. Language is a very powerful tool used in discussions about diabetes, and a person’s choice of words can greatly impact on a patient and the way that they manage their condition.

During a recent consultation with a diabetes Professor, he described my blood glucose levels using the words “bad behaviour”...


You can read the rest of this article here


Sunday, 23 November 2014

Red White and Blue - The Eye Of The Ninja



I wanted to blog about diabetic retinopathy and my red white and blue vision... past present and possibly future.

Part one - A non diabetes related issue diagnosed my retinopathy.

In September 2009 I suffered from terrible headaches which lasted for 2 weeks - non stop they pounded on my head day and night, making me nautious, dizzy, tearful and obviously quite distressed. You'll all be relieved to know that this part is not diabetes related! 

After the the first 2 days I went to my GP and was told to take pain killers. I had been doing this anyway, but I didn't want to go against the advice of my GP, so I continued with the pain killers. I returned days later quite desperate but was told that pain is a good thing, that I needed to know it was there to be able to assess if it was getting better. I repeated the visit again a few days later with a swollen eye (Quasi Modo style) and was given cream.

After 2 weeks I finally gave in and went to A&E. I had an MRI scan which showed that I had a lump of swollen tissue behind my right eye which was so large that it had worn a hole through my skull and was pressing on my brain. So much for the eye cream eh?! I was told that cancer was a possibility, and a biopsy would be done to diagnose. After the biopsy the headaches left, the swelling settled, I had a funky zig zag scar on my eye lid (still got it) and I was referred to a specialist eye hospital in London called Moorefields.

So where does my diabetes come into this? I was told when first admitted that I had early stages of retinopathy and I would need laser treatment. I was told that the swollen tissue could be diabetes related, but it might not be and it would be assessed. I didn't see anyone for my diabetes while I was there or after I was discharged. Naievely I thought that if people weren't worried enough to see me or talk to me about my diabetes and the first stage of retinopathy, then I didn't need to worry. Naievity is the bigggest regret that I will ever have.

Back and forth I went; seeing different specialists, having my eye poked and prodded, photos taken to be used for educational purposes. scans, blood tests etc but nothing came of it. The last corrospondance that I had was a letter that I was copied in to. It explained that the nature of the swelling was extremely agressive but it had gone as quickly as it had come. I wasn't diagnosed - no one knew what it was, and that was it. Done. Finito. Months of panic stress and worry were followed by silence. Not complete silence though, I was still reviewed every six months - eyes checked, progress was made and no more talk of retinopathy. I thought I was in the clear. I thought I was invinciable!

Little did I know that my journey was only just beginning...


Ninjabetic x 

Tuesday, 18 November 2014

I hate hypos


Recently I've been noticing, a lot more than usual, how my diabetes makes me feel. In the last few days the highs have been making a big impact and it wasn't until a few days ago that I remembered one of the biggest reasons for why I used to purposely keep my blood glucose levels high - The hypos... I hate them.


They crop up at awkward moments (in a meeting, exam, during a date, important presentation etc) but I always try to carry on as normal.

They mean I have to eat sugary snacks after exercising – this seems counter-productive to me. 

They’re never the same – some are surprisingly easy to deal with and some are just plain nasty, taking me down in every way they can.

They cover me, my clothes, my bed etc in cold sweat. Having to leave the room so I can take off my top isn't always easy/appropriate/legal(?).

They give me the giggles at a time when I shouldn’t be giggling. This is usually during one of those awkward moments mentioned above. They also make me cry in public or turn into an angry ______ (insert word).

They make my legs turn to jelly and my head turn to lead - waking up with low blood glucose levels means a day of suffering from a headache that doesn't leave, no matter what you do. This is known as a 'hypo hangover'.

They put me on edge, making me overly aware of how I feel and what's happening. I start to be very careful about what I say or do. Even moving a cup requires all my concentration at times. 

They give me 'hypo hair'. This is when you wake up from a low blood sugar with what resembles a birds nest on top of your head, usually with that lingering damp feeling (see cold sweat hypo). 

They ruin a run of good blood sugars. Obviously, good blood sugars aren't appearing on my meter at the moment, but on the occasion when I do have a good run (and I feel oh so proud about it), a hypo messes up all that hard work I've done. 




      Ninjabetic x 






Friday, 14 November 2014

Insulin For All



"November 14, as many of you know, marks World Diabetes Day. World Diabetes Day is celebrated throughout the world by people living with diabetes, their friends and families and their carers. It is a day when we raise awareness for the relentless and demanding condition that we live with 24/7, the seriousness of living with a long term illness that requires careful attention to detail, meticulous planning and a lifetime of dedication..."


Please follow the link below to continue reading


Wednesday, 12 November 2014

Diabetes is tough



I was prepared for clinic yesterday. I knew what I wanted to say and how I wanted to say it. I had planned to have a serious talk about my diabetes control and management, an honest and open discussion that would provide insight into how I could work with my consultant to get to where I wanted, and needed, to be. I had rehearsed it over and over in my head the night before and in my head the outcomes had been good.

As I sat in the waiting room I flipped my phone over and over in my hands, looking at the new art work on the walls. For that brief moment I felt calm and composed, soaking up the vibrant colours as I felt my heart beat slow down. When I was called in by my DSN I realised I wouldn’t be seeing my consultant that day. No problem – My DSN was always kind, understanding and never judgemental. I was in good hands.

I started to talk. I admitted to letting things slip, pointed out my mistakes and gave my own suggestions for I could rectify them. I was asked how I knew things had slipped, and I realised I didn’t. We tried to get blood for a HbA1c – it didn’t happen. I sat sobbing, as always, whilst the nurse tried to reach a vein before it moved. I felt selfish as I walked back through the busy waiting room. Why should I be crying when every one of these patients is going through the same (if not more) as I am. Why should they see my tear stained face as they sit, probably feeling anxious themselves, waiting for their turn. How selfish of me.

The tears didn’t stop. “Is it the blood test or something else?” I was asked. Soon I was crying harder. I talked and talked, letting everything come out. What I wasn’t doing, what I was doing, why I was choosing to make those decisions, why I’m scared, what my future looked like, what’s stopping me from asking for help. I was asked what I wanted to do next. I didn’t want to do anything. I didn’t want to set any goals, plan for the future or create any expectations. I just wanted someone, somewhere, to be aware for when I am ready. I left my DSNs office and in the corridor were a group of consultants, amongst them was my consultant. I looked at him with my mascara stained eyes and then looked at the floor. One of the things I hate most about diabetes is that it makes me feel I’ve let him down. People will say this is a silly but it’s how I feel.

Later that night I had a text. “Everything ok? Clinic looked tough?”

Everything’s not ok but clinic isn’t tough. Clinic is a safe place, it does its job and more. It’s diabetes that’s tough. 


Ninjabetic x 


Saturday, 4 October 2014

Asking for help



I find that my biggest struggle when it comes to diabetes is asking for help. Those who know me well know that I can occasionally be incredibly stubborn (or as those people would say, a massive pain in the arse) and that admitting that I may be in over my head, or even just wandering down the wrong path, is very unlikely to happen. Then, I reach that moment when my persistent denial or refusal to accept that a situation has reached the point where I should have handled things differently, ends with me reluctantly accepting the help that has been there from the beginning. Often too late.

I was born in the 80’s and in the 90’s was plunged into a world of Brit pop, girl power and iconic independent feminists! Perhaps I take things to the extreme by being so very reluctant to accept help, perhaps it was (and always has been) a way to keep some distance between myself and my health care professionals or perhaps I just don’t want people to know that I’m not as good as I think I am, or as good as I would like to be.

It’s funny how people handle things in different ways. I could, with open arms, welcome and embrace the support and advice that is available to me. Hell, my health care professionals are the best around and I know that there would never be an instance where I would be turned down should I need them. I could suck it up, shake my hair, shout “girl power” and get right back in the game… but isn’t it scary to know that getting back in the game requires one of those big conversations. One that involves admitting that there is something wrong. It’s never as easy as clicking your fingers and hey presto – the broken pieces have been fixed.

The other option, the easy way out (or so it seems) is to walk. Walk away from the problem, from yourself and bail when things get too real.

One of the things that I do is to drop hints, rather than admitting that things are on a downward spiral. It’s a well-known fact that health care professionals, whilst training, attend detective classes… right? Just like when they’ve qualified they take a year out to practice mind reading… Obviously, dropping hints to a consultant who works god knows how many hours a day and has god knows how many patients to see, is the right way to go about addressing a problem. No? How about spending time with them, dancing around the subject of diabetes, dipping in and out, trying to pluck up the courage to speak up only to leave 45 minutes later the same as before?

Ok, so I know that’s not the way to go about things but isn’t it scary to admit something… something you wanted to deal with yourself but can’t… then have someone confirm and reiterate it? Not only that but to then have it confirmed with blood, with data from a questionnaire, with patterns on a graph, with a letter to your GP and a copy sent to your home? Knowing that the problem you once had will always be with you wherever you go... on file as a constant reminder. I think for me, the biggest blow is realising that I’m not as self-sufficiant as I once thought. After 12 years of living with diabetes I should expect to be getting something right, to be finishing at least a few days out of the week feeling well and in control... not worrying about what the next day will bring. On the other hand though, doesn’t being scared just mean that I’m human? Fear is a universal human reaction, right?

I suppose when it comes to health there are really only two choices. To own it… or to abandon it. Either way, I think that admitting you’re not heroic is when you’re the most heroic of all.