Meal time management and hypoglycemia

A little while ago the team at Novo Nordisk approached me to write a blog and record a video about how I manage my diabetes to avoid hypoglycemia. As food is one of my favourite things in the world I decided to focus on carbohydrate counting and the way that it has helped me to overcome my highs and lows around food. 

Please click on this link to read my blog and watch my video. 

Please also give Novo a follow on twitter for more updates. 

Laura x 

Nursing, Diabetes and Insulin Pumps

Here's a quick video about life as a student nurse with Type 1 diabetes and an insulin pump. 

Enjoy!!

Ninjabetic xx 

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 

I'm a robot

"I'm a robot, I'm a robot!" I shouted as I ran around the lounge, lifting up my top and showing off my stomach. My partner and mum ignored me and carried on chatting.

"I. Am. A. Robot." I said to my dog in my best robot voice, whilst attempting to do the robot dance.

The dog walked past me...

Earlier that day I'd been to see my consultant for a review of my blood sugars. After experiencing a nasty hypo just before New Years Eve, I was feeling quite anxious and had lots of questions to ask him. Looking at my blood glucose meter we could see that in the 2 weeks running up to the appointment 22% of my readings were hypos. Not good. 

Dr C asked if I'd like to wear a CGM (Continuous Glucose Monitoring System) for 3 weeks to pick up patterns of low blood sugars (meaning we could adjust my basal or bolus) and to allow me to catch any highs or lows before they hit. It would mean having another bit of kit attached to me, but that didn't bother me at all. I was used to Iain the pump being attached to my tummy, and the CGM didn't look like it would cause any wardrobe issues or discomfort. 

I jumped at the chance!

In the past I've been loaned a closed CGM which is worn for a week and the data is then downloaded, but the user can't see any readings whilst the CGM is on. They're handy for looking at patterns after using them, but that's it really. 

So for 3 weeks I was a robot and I absolutely loved it. I could see when my blood sugars were going high or low or when they were steady. I felt so much more confident when I was eating because I could see the effect that the food, and the insulin I took for it, was having on my blood sugars. I didn't need to test my blood sugars when I got that low or high feeling, I could simply look at the screen and confirm what my sugars were, then act accordingly. For the first week I felt so much happier and content simply due to the confidence the CGM provided me with. Not only that but at times I felt that I didn't have diabetes any more, because I felt much more in control! Even when I was struck down with a cold during weeks 2 and 3 and my sugars were as high as a kite I could at least see what they were doing and make some informed changes based on the information I had.

The best part... I only had 1 hypo in 3 weeks! Compared to 22% in the 2 weeks before getting the CGM this felt bloody brilliant! 

I don't see testing my blood sugars as being a big deal because I'm so used to doing it now, but what bothers me is that I can't test them when I want to. I've heard so many stories about test strips being restricted that I'm very conscious of how many times a day I test. After starting my pump trial Dr C wrote to my GP explaining that I would need to test 4-8x a day, but I notice that I start to ration my test strips if I've gone over my recommended allowance through fear of being restricted. Even if I'm feeling unwell or my daily activity has changed and I need to test more often, I tend not to. The CGM put this fear to rest (for the loan period anyway) because I only needed to test before I was going to eat. 

Yesterday I handed the CGM back to Dr C (sad times). We discussed the benefits the CGM gave, looked at my data, had a chat, decided on our next steps... Then I think my big sad eyes gave me away... 

"You can borrow it again" Dr C said. 

"Forever?" I asked. 

"Not forever, no, but if you have a week when you think you might need it, or if you think you may need to make some changes to your regime, you can borrow it then."

"Maybe when I'm doing my nursing placement? I'd like to be more aware of my blood sugars when I'm on the wards" I said.

I went home CGM-less and just 3 hours later I had a hypo. Typical. An hour ago I had another hypo... That's 2 in 2 days since handing the CGM back. I know that there are many many more people out there who are in much more need of a CGM than I am, but I can't help wanting my comfort blanked back. That safety net really changed me for the better. I felt happy confident and relaxed. 

If anyone's thinking about funding a CGM or applying for funding I'd say go for it (though be aware that they are expensive - especially for poor students like myself)! Make sure you research them first and speak to people who use them, but for me it was the easiest 3 weeks of the 12 years I've had with diabetes.

Ninjabetic x

7 day working in the NHS

“We live our lives 24/7 and an illness doesn’t stop for anyone.”

This was said by a patient recently at a conference I attended. The conference was a learning exchange involving patients, carers and health care professionals, looking into 7 day working across the NHS.

To me it seemed like one of the rare opportunities that I wish would happen more often, so I of course jumped at the opportunity at attend as a patient representative. Those who had the power to make 7 day working a reality were sat on my table, listening to not only my experiences, but those who had shared theirs with me the previous evening.  

Back and forth all day, we listened to stories from patients and carers… some incredible stories of the lack of available specialists leading to life threatening situations. A common theme rang throughout the room… patients who need specialist care fear being admitted to hospital on a weekend or an evening. I certainly sympathised with them… nodding in agreement and sharing my recent experiences that have lead me to sharing this same fear. Any hospital should surely provide its service users with reassurance that they will be safely looked after, however it seemed to me that what is happening is that poor care, for whatever reason, is reinforcing fear in its users.

During the conference I was sitting next to an elderly gentleman called Rodney. Rodney suffered from a stroke many years ago, and thankfully on the day it happened he was saved by a specialist. This is what Rodney said to the room;

“I feel lucky that I had a stroke on a week day. Had it been any other time I would not be alive now.”

Once Rodney had recovered from his stroke he made it his mission to have a 7 day stroke service in this local area. He spoke to commissioners, health care professionals, other patients and the media. He took on the battle to ensure that people would be safe should they experience a stroke out of hours and he was successful!

Personally, when it comes to my diabetes care I feel completely looked after and safe when admitted during a week day because my diabetes team are there. Even if the person sent doesn't know me, they still have the knowledge to make a safe decision. However this year I have been admitted on weekends and evenings and I have had no end of problems. My diabetes team are aware of what I went through and how dangerous it was, and I'm happy to see that something is being done about this. I know that it's not through lack of trying by my D team, I know they are as frustrated as I am, but should it come to this? Should a patient with diabetes go into DKA or hypo due to a lack of understanding before action is taken? 

If you'd like to look at this link you can read what other patients with diabetes have experienced.

Other patients at the conference spoke about the trouble they have had when diagnosed with an illness over the weekend. The diagnosis is made, however it isn’t until Monday morning that the appropriate treatment can be given, leaving patients deteriorating or worrying. I myself was told once on a Friday evening that a scan showed a shadow on my brain, but nothing could be done about it until the surgeon was in the hospital on the following Monday morning. Knowing what this could have meant left me distressed and panicked for 2 days before the surgeon could perform a biopsy. An early diagnosis is of course fantastic, but not if the means to treat the illness aren’t available.

What struck me that day was the willing from the health care professionals to do more. To go above and beyond and to admit that mistakes are made, projects fail, lessons are learnt and ideas simply must be shared. I could sense their frustrations when they heard of the patient stories, and although there are some bad apples out there, I was grateful that in that room was a consensus that 7 day care can be done.

Many concerns were shared by both patients and health care professionals regarding a 7 day service:

• Clarity is needed over the definition of a 7 day service
• What would 7 day care mean to the public and professionals
• Will there be standard expectations/minimum standard across the UK and can this be extended and developed over time
• Is it possible to have a service where standards don’t differentiate between week days and weekends
• How will the public be educated to use the service - e.g. when to use it and how to use it appropriately
• Do health care professionals have the will and desire to make this work
• Will a 7 day service be safe for patients and staff
• How can a 7 day service be implemented when an overhaul is firstly needed for traditional 5 day services

These questions and concerns have been taken on board and will be put to Sir Bruce Keogh before he writes his next report. Let’s hope that this learning exchange has been enough to make positive steps towards a safer future for you, the service users of the NHS.




Ninjabetic x

Am I in charge when DKA strikes?

Catching a glimpse of myself in the bathroom mirror last night I stopped and did a double take. I was shocked to see how different I looked. My usually bright and sparkly blue/grey eyes looked dull and heavy, the skin under my eyes was dark and sunken and the rest of my face was pale and washed out. I looked burned out and realised, as if seeing my refection was confirmation, that I was ready, once again, to give up on the day. It was 7pm.

The previous week I had been in hospital for 5 days with DKA (Diabetic Ketoacidosis). It had only been 2 months since my last admission with DKA and it was the last thing I was expecting, because 2 weeks prior to my admission had been a diabetes dream. My blood sugars had barely been out of my target range (5-10 mmol/L) and the heat wave hadn't caused me any issues with hypos at all. I was content, relaxed and finally feeling like everything was falling into place. 

This recent admission was much like my previous one in May (find that story here). I was vomiting constantly and although my sugars weren't particularly high, my ketones were rising. I was admitted to hospital at 9pm; however it wasn't until 12 hours later that I was put on a sliding scale. 

I'd been told in A&E that I would need to manage my insulin pump and adjust my insulin according to my blood sugar levels. This meant making decisions about how much to increase my temporary basal rates by, how long for and how many units of insulin I should take as a corrective dose. This meant making those decisions whilst on the verge of DKA (or maybe even in DKA at that point), whilst absolutely exhausted, whilst scared and confused. This meant that I could have easily given myself too much or too little insulin, which in my state would have been very dangerous as I couldn't focus on how my body felt. I was then moved to the Medical Assessment Unit where I was told to carry on with what I was doing with my pump, but at that point I had no idea what I was doing. I was so tired I couldn't function - I was very much out of my comfort zone as regards managing the pump.

The next morning I was still vomiting and had been all night. One of the nurses from the diabetes team came to see me and alerted my consultant who came in straight away. He ordered a sliding scale to be put up as my ketones were being caused by the fact that I couldn't keep food or fluids down. Within an hour or two my ketones were lowering and the vomiting had stopped. I was so grateful that my consultant had been there as I was becoming so desperate that I considered leaving. I didn't feel safe at all. 

My sliding scale had been taken down before I'd even attempted to eat anything and I'd been told I could go if I was well enough. I was so desperate to leave (for many reasons) that I went when I should have stayed. This resulted in me coming back in the next morning - straight back into the same room with vomiting, high blood sugars and high ketones. This time it took three hours before any fluids or a sliding scale were put up, despite me explaining that they only way to get rid of the ketones was with a sliding scale. I was asked the same questions that I had been two days before. Had I eaten anything that might have caused the vomiting, had I been around children, what are my blood sugars usually like, how do I manage my pump...? I answered, through tears, and repeated myself over and over again. Finally the sliding scale was set up and finally the vomiting stopped. 

I felt that my insulin pump was being used in place of a sliding scale. I felt that I was being relied upon to treat myself when I was in no fit state to do so. I felt that unless my diabetes team were nearby then I would have been better off at home. 

My consultant was away on the day of my second admission but had phoned to say he was worried and asked one of his colleagues to check on me. Another diabetes consultant came in and reassured me that if I needed anything at all then to ask someone to call the diabetes team who would assist me, then a diabetes nurse came in, then another consultant. Each time I felt more relaxed and looked after, I just wish that 24/7 care was in place and they could have been there from the start.

Last night I gave up on the day at around 7pm, which was fine because I could start over today. I just hope that I still have the energy to carry on if I have another admission, because if last week is anything to go by... I'll need it.

Ninja x 

DKA - Crash Bang Wallop

Perhaps I tempted fate 4 weeks ago with my proud celebration of going 2 years without DKA (diabetic ketoacidosis). Maybe I should have prepared better for when it hit again. I just didn't expect it so soon... not when I had everything under control.

 

It all happened so suddenly - One minute I was in bed, listening to friends drunkenly singing along to a guitar downstairs as I drifted off to sleep, the next I was stumbling around getting dressed and launching myself out of my partner’s house, clutching my stomach and telling him not to stop me from leaving.

 

Somehow I made it home and crawled to the bathroom on the ground floor. My mum slept soundly two floors above me and couldn’t hear me vomiting crying or reassuring myself that the sickness would pass. At that stage DKA hadn’t crossed my mind – I thought it was a stomach bug, but as the hours went by the vomiting continued. 5, 10, 15, 20 + times… each time I was feeling more dehydrated, finding it harder to catch my breath and I was becoming weaker.

 

At 6am I accepted that I couldn’t get through this on my own (even with Iain the pump chugging away). I fell into my mum’s room and she immediately called an ambulance.

The next 24 hours were a blur – I went to A&E and was taken to resus so I could have my own nurse. The intensive care team came to asses me and made plans for another move.

On admission I was leaning towards DKA - Blood sugars were 20.4 ketones were 3.5 and PH levels were 7.33 However IV fluids and insulin were not correcting my levels and after an hour or so this resulted in sugars of 30, ketones of 4.9 and PH levels of 7.21 - I was later told this was because the first response who had initially cannulated me had some difficulty, leading to fluid collecting in the tissue of my hand and arm instead of doing its job sufficiently, causing cellulitis – bring on the Simpson style chubbiness and days of IV antibiotics to correct it. 

 

Cannula number 2 of 6

 

One of my biggest worries was what to do with Iain the pump. I’d only had it for just over 3 weeks and I didn’t know what to do regarding sickness and temp basal rates (TBR) yet. I’d increased the TBR to 130% the night I became ill (this was a guesstimate) and I’d left it at that rate ever since. No one that was looking after me knew what to do with an insulin pump, but what worried me the most was that I wasn’t given any direction with it at all. Should I leave it on or take it off? No one knew! A sliding scale had been set up with 9 units of insulin an hour and Iain was still pumping away at 130%

 

Dangerous? Yes I’m sure it was but I was barely conscious and couldn’t make the decision for myself. The staff were concerned, I could see that, but I could also see that they weren’t confident in giving me pump advice – it was a treatment that they didn’t come across often.

 

After having 13 litres of IV fluids pumped through me I woke up the next day to sugars of 5.5 and I turned Iain’s TBR down to 50% (again a guess) as my sliding scale was still up. My diabetes team came to see me and advised me to stop the pump. Hurrah for people who knew about pumps!

My arms & hands took a needle battering so the Drs had to cannulate my feet instead!! Ouch!!

 

The next day I was told that I was out of DKA but I was still acidotic and as I was still vomiting the sliding scale stayed for a further 4 days. I spent the rest of my time on a ward and I was told that I had food poisoning. I was completely exhausted and I felt worse than I ever had done with DKA – not just physically but emotionally. I barely spoke to anyone but was comforted by the fact that Partha (a consultant from my d team) came to see me every day. Although I haven’t been under his care for 2 years now he still came by every morning and checked on me, he sat at the end of my bed when I had my head in my hands and tears in my eyes, he told me that it wasn’t my fault and that I would get better again… It was nice to get that extra mile… that verbal hug.

 

I’m home now and feeling a lot better than I did. I ate solid food for the first time yesterday but I still feel like my tummy has been run over… reversed on and run over again. Iain the pump is happily pumping away and my sugars have settled nicely back into their target of 5-10.

 

My mood is lifting as I’m getting better but I have the worry of DKA’s on my mind now. Call me naive but I thought this would stop… now that I’m looking after myself I thought I’d seen the end of my hospital admissions. I thought about giving up... I felt that I'd let myself down by being sick... let my diabetes team down... I'd become an unplanned admission statistic that they try so hard to combat. Then I realised how much I'd be letting myself and others down if I didn't get back up, dust myself off and try again. There's always something to come back and fight for, even if I couldn't see it at the time.

Ninjabetic x



 

Pump it up!!

Hi! My name’s Laura and it’s been 2 years since my last DKA!

As strange as this may sound, staying out of A&E for two years is quite an achievement for me! If I turned up now I bet none of the staff would say; “Oh you’re back again!” or recognise my face. Often I felt like a part of the furniture. I even knew how to disable the annoying beep on the sliding scale machines.

Although I’m proud of myself for all I have achieved so far, my blood sugars still aren’t where they should be and this is having a huge knock on effect, physically and emotionally.

Despite numerous changes to my insulin regime, CGM loans, regular and lengthy appointments with my (very patient) consultant and a diabetes educational programme, I’m not getting any further towards good control – In fact my results show that I’m going to opposite way!

I knew diabetes wouldn’t be easy but for months now it has been a time consuming, energy draining, unresponsive  pain in the… pancreas!

My a1c has crept up - My frustrations have also crept up with it (can you tell?)

Hypos have become a regular occurrence - In the last 30 days 15% of my blood glucose readings were hypos.  Weight management is distracting and affecting me… even losing a few pounds is an impossible task.

It’s been almost 11 years since my diagnosis and still I regularly wake up feeling like I’ve not slept for weeks. I worry about falling off the diabetes wagon wheel and getting crushed by complications. I still feel faint at the sight of injecting myself… the bruises injections leave on my legs and stomach.

So soon I will start my six month insulin pump trial and hopefully this will be the start of getting me back. I desperately want to feel like me again… I want to be the bouncy, carefree, energetic ninja that I know is inside me! I don’t want to feel that I’m taking one step forward and two steps back anymore… I just want to keep stepping forwards.

Bring on team pump!!!! :)

Ninjabetic x

What a difference two years makes....

After Hannah and I were asked to speak at the Diabetes UK Professional Conference in March this year, it really hit home how much has happened in the last 2 years. Looking back I can’t believe where I am today and how I got here.

In January 2011 I’d had diabetes for 9 years. Diagnosed at the age of 16 I didn’t know anyone who had diabetes. I didn’t know what it was, what it meant or how it could affect me. It was a completely new world to me… a world that scared me. I thought it would take away my independence, my friends, my future… and myself.

For nine years I refused anything and everything to do with my diabetes. Injections, blood glucose testing, HbA1c tests, appointments with health care professionals… I pretended I didn’t have diabetes… though I knew it was always lurking in the shadows, waiting to catch up with me.

 

2 years ago my HbA1c was around 15 and that was the lowest it had ever been.

2 years ago I was in A&E again with DKA (diabetic ketoacidosis).

2 years ago I was diagnosed with stage 4 retinopathy and told I would lose my sight.

2 years ago I’d never met anyone else with diabetes.

2 years ago I regretted every single day that I hadn’t looked after myself and my diabetes.

 

But no more!

Today my HbA1c is 7.8

Today it has been 20 months since my last admission with DKA.

Today my retinopathy has halted in my left eye and is slowing in my right.

Today I’ve met amazing and inspiring people who have diabetes.

Today I still regret every single mistake that I made… but I hope others can learn from them.

“A dead end can never be a one way street; you can always turn around and take another road.”

It’s not easy… if it was then I wouldn’t have ignored it for such a long time. But for me, anything that I do on a daily basis for my diabetes has now become second nature. I barely think when I’m reaching into my bag for my blood glucose meter. I don’t flinch when I see a needle going into my skin anymore. Carb counting has become easier now that apps are available at the touch of a button. Appointments are something that I look forward to, because I get so much out of them. I lap up the information that I’m given by my consultant instead of just smiling and nodding like I used to. I ask questions constantly, I challenge methods of treatment and changes to my regime because I realise now just how precious my health is.

Now that I my health and my life back I want to make every option and opportunity work for me if I feel it’s right.

 

On top of daily diabetes management I study Monday - Friday, volunteer, work long evening and weekend shifts and involve myself with as many diabetes projects as I can… conferences, events, meetings, more volunteering, research projects, writing etc. Then I look at other people who also do so much on top of their daily diabetes lives and it makes me smile to think of what can be achieved and how diabetes doesn’t hold people back. It’s definitely worth the work and it really does pay off.

This blog is to demonstrate to anyone who is struggling that they can accept their diabetes and find a positive and healthy way to manage it. There is always a way out, there are always people to help and guide us, and there is always a light at the end of the tunnel. If I can do it then I think anyone can!

Hannah's story....

on the 26^th November I got an early Christmas present. For a long time me and Laura (aka ninjabetic) had been asking , ok more like annoying, our leader at diabetes uk to be allowed to attend the diabetes uk professional conference in March . on the 26^th Alex came back with some even better news - we were being invited to speak at it! So on the 14^th march me Alex and Laura will be speaking to hopefully a number of hcp about our work as young leaders and the use of social media. Frankly I’m a little scared about this but it did make me realise how far I’ve come in the past 2 years with some sheer determination, some great friends and a pretty awesome (and very patient) diabetes team.

2 years ago this month I was at rock bottom with my diabetes and self-confidence I was sat in the hospital with my a1c at 10.5 % I was on a very slippery slope with my diabetes. The way I was going I would have had severe complications by my 20s and wouldn’t of made my 40^th . I was doing maybe one bloodcount a day, was skipping injections and the injections I was doing I was guessing the dose of. All the locums I’d had previously had written me off as non compliant and didn’t even bother trying to get through to me .I’d had several scary hypos but nothing would get through to me every time my doctor or nurse would try to convince me to do things properly it would go in one ear and straight out the other. Then I got told if I didn’t sort myself out I wouldn’t make my 40^th suddenly the reality hit me that I needed to take care of my diabetes

2 years later I’m a young leader for diabetes uk mentoring teens and annoying , sorry advising , doctors on trying to improve care for type 1 whilst studying for my a levels in the hopes of being a children’s nurse. 2 years later I’ve met some of the most amazing friends I could of wished for and been given opportunities I could never of imagined when I was rebelling. i confess I don’t work anywhere near as hard as Laura does on ninjabetic because my blog was never set up to be a support site (I love that teens will come and talk to me though!) it was set up to provide a very unsugarcoated account of what it’s like to live with type 1 as a teenager, the good parts and the bad. 2 years on from my a1c of 10.5 im on an insulin pump testing  seven times a day with an average bg of 7.8 (just after exams it will get better) and with less hypos.

I’ve already been told that my team will be on the front row and also my pump rep.the fight for the insulin pump was something that took nearly 2 years and was so so worth the fight. I went from having to be completely obsessive over my diabetes to actually being able to relax a bit. It’s not perfect I can still have phases where I have 3 or 4 hypos a day or sometimes be hypo for up to 3 hours.  The pump gave me my life back and that may sound like an over exaggeration but it really isn’t for me. Before the pump I was spending every minute trying to control my volatile bloodcounts the pump has let me be a teen again.

4 years ago when I first heard about the professional conference I dreamt that I could speak at it speak about what its really like to be a teenager with type 1. I never thought I’d actually reach that dream , at the time it seemed so unrealistic  but with the help of diabetes uk I am gonna reach that goal.