Sunday, 30 June 2013

CGM/Sensor

I recall writing a post on my CGM before, but I think I rushed it so I'd like to take the time to write a more detailed post on my own experiences with it.

I have been wearing my Continuous Glucose Monitor, or sensor- for the past few days and I'm due to take it off on Monday. I have a Medtronic Paradigm Veo insulin pump so I use the Medtronic enlite sensors in collaboration with the integrated CGM feature on the pump. It's a wonderful thing to have and I love looking at my insulin pump and knowing what my blood sugars are doing, I know the sensor has a bit of a lag time and takes a few minutes to catch up, but most of the time it's only a couple of points off and sometimes it's actually spot on which is very helpful.

I wear the sensor on my stomach, which is the most common site that I use for sensor insertions- it just feels comfortable for me there although sometimes it is annoying trying to get it to stick in a place that is not underneath my waistband as it was recommended at sensor training not to wear it under a waistband as it may affect the connection between the pump and sensor.

The very first time I wore the sensor, it was a blind session as I didn't have the pump- so I couldn't actually view my results in real-time, I wore the "blind sensor" about two times before I finally got my insulin pump. This was extremely beneficial for both myself and the hospital because we managed to see what my blood sugars were doing during the night. However, I did not like wearing the sensor at the time because for one, it didn't have an inserter so the insertion was done by hand which freaked me out a little bit and it hurt, to get straight to the point if I'm honest. It was pretty uncomfortable, but I didn't flinch and the nurses were actually really surprised by my bravery.

Every time my diabetes team would suggest wearing the sensor I would turn it down simply because I didn't fancy going through the insertion as I really didn't like it. Then, a new sensor was released which is the best thing because it has an inserter, it doesn't have to go in at a funny angle and it is much more accurate than the old one- the old ones were called iPro, the ones that I use now are called Enlite. It is simply brilliant in my eyes because it means I am now not so afraid to wear the sensor because it is a more comfortable experience than before. (But I'm still a little afraid of it, even though it hardly ever hurts that much)

When I insert the sensor under my skin, I have to wait for the green light to flash on the "mushroom" as I like to call it, to let me know that it is connected- let me tell you that is a very tense moment; if it doesn't flash you need to remove the sensor and fire it in all over again- No thank you! On Wednesday it took around three minutes to flash, I was just about ready to crawl into a cave. Anyway, then I have to go into my pump and connect the sensor to the pump via it's snazzy little 'Bluetooth' connection that goes underway once I turn on the sensor and it takes me through the sensor settings and then a little funky graph appears on my pump screen and says 'Warm up'. I stick 'IV3000' over the sensor to hold it in place then I'm ready to roll.

It takes the sensor a little while to warm up and then it will alert me to test my blood sugar to calibrate it- once I enter my blood sugar it gets to work and then over the days that I wear it, my blood sugar will appear to me on a little graph and I can see the graph over 3 hours, 6 hours, 12 hours or 24 hours. In the settings, I can also set high and low glucose alerts, so that the sensor will alert me when my blood sugar is too high or too low. I can also do other things such as prediction rates, where I will be alerted if my blood sugar is rising or falling and I can stop a high or low blood sugar before it happens- which is very helpful. Other features include low suspend, where the pump will automatically suspend itself if my blood glucose falls to low- a total lifesaver during the night.

The low suspend feature has come into play a couple of times but there was one occasion in which I believe it probably quite literally saved my life. My friend slept over that night and in the morning she told me that my pump was alarming, she was trying to wake me up but (because I'm such a deep sleeper) I didn't wake up and she didn't know what to do so she just went back to sleep, she told me that when she woke up she thought the noises from my pump were a bomb, I laughed a lot when she told me this. Anyway, I checked my pump immediately after to see why it was making such a fuss and vibrating against my hip...the screen read "I am diabetic. Call for medical assistance" err? I thought "what? I am in no need of any medical assistance?" I soon realised this was the message that my insulin pump gives when it goes into low suspend for a long time with out it being addressed, obviously I was asleep so I was unaware of my low blood sugar- I looked back at my graph and to my dismay my blood sugar had fallen very low during the night to about 2.5mmol.

I scrambled through my bag for my tester and my blood sugars were 9mmols, exactly what it said on the sensor. It was scary to think that if it wasn't for my sensor suspending my pump and stopping insulin delivery plus, my trusty glucagon producing liver, things might have been a whole lot different. That event made me truly appreciate how lucky I am to have a CGM.

There are some drawbacks to wearing a sensor but they all depend on how the person can cope with annoying alarms, an extra needle to conquer, wearing another object on their bodies (if they already wear a pump)...things like that. On occasions the sensor may stop working but for me this only really happens when it is coming to the end of it's six days of action, or sometimes it may lose connection with the pump but it soon reconnects after I move them next to one another. (it did this yesterday and I had to move my insulin pump over to the same side as my sensor, but then once it reconnected I could move it back)

A frustrating thing about the CGM is that it needs to be calibrated, I don't mind doing this during the day- but it's the times when it needs calibrating during the night that are the worst. If it doesn't get calibrated it will stop receiving blood sugars as it needs "updating" so to speak, to help it along the way in staying accurate. If I don't wake up to it's alarms during the night I will be missing readings for a few hours which annoys me, plus it makes my graph look ugly!

However, those small annoyances are a small price to pay for the benefits that the CGM brings. It has helped me so much. To be honest, it has also helped me mentally to control my blood sugars- seeing good sensor graph results really encourage me to continue doing the best that I can do to keep my blood sugars in a normal range, it makes me really happy to see good results and it also really reassures me that I'm on the right tracks.

For example, the other day during my hospital appointment, we changed my basal rates during the night because the results from my CGM revealed that during the early hours of the morning my blood sugar peaked from what is known as the "dawn phenomenon" but then around 7 or 8 in the morning they begin to fall and if I sleep in late on weekends or days off school- I find that I almost always wake up low. So adjustments were made to try and fix this problem and now I am wearing the sensor to see if these basal rates are working for me and so far so good- the line on the graph stays pretty stable all throughout the night which makes me happy and I haven't been waking up low or going high during the early hours of the morning!

Now, when I take off the sensor on Monday, I can send off my results to my diabetes team at the hospital and they can take a look at them and know that we are heading in the right direction with my basal rates and blood sugar control. It's just very reassuring to have something that really helps me to gain tighter glucose control, especially because I am always doing different things and experiencing different factors that will affect my blood sugar such as hormones and stress- my sensor helps me to get to know my body better and the effect that different activities have on my blood sugar to make way for an easier life with type one diabetes.

I am very tired now though so I am going to head off to bed; I hope you found this useful and gained some insight into how the sensor works. If you have any questions please do not hesitate to ask me any questions because I love answering questions c:

Goodnight.

-Ellie
[Peace&Insulin]

Friday, 28 June 2013

Low blood sugar and a T-shirt

Earlier I had the worst hypo that I've had in a very long time. My blood sugars went right down to 2.5 mmol during which I was playing Sims 3. It was one of those low blood sugars where you just literally stop everything your're doing to wallow in all your low blood sugar and sweet wrappers. I stopped playing Sims for you, diabetes...I hope you're happy! I missed the marriage of my Sims...

Basically, the low blood sugar left me feeling like my whole body was jelly...forget jelly legs, I was jelly body for about twenty minutes. I sat on the sofa shouting "Daaaad! Daaaadd!" then he came in and I asked him for some Orange Juice which tasted heavenly- then he went back into the other room and five minutes later-
"oh Daaaaddyy!"
"Are you ok?"
"Yes, but can I have some bread please I'm hungry now"

I devoured the bread because low blood sugar makes me ravenous, and I mean ravenous. It's hardly an exaggeration, I literally get so hungry. My hypo decided to happen before lunch though so when it came to eating lunch which was a couple of hours later it proved rather challenging. Once my blood sugars had come back up to around 3.8 I mustered up the energy to drag myself up the stairs to go and lay on my bed- with my orange juice in tow- once I got to the top of the stairs I was so exhausted I was ready to fall on the floor so I made a half-sprint into my room and just flopped on to my bed.

Then I heard a large crash...woops. I accidentally broke the wooden slats under my bed- they are very annoying and fall out of their positions if you sit on the bed too hard, but I didn't care at the time so I just ignored it and then my sister called up "Ellie, what did you drop?!" I had no idea what to say "err...my phone!" she believed me so all was well. Anyway my bed was caved in and I just lay there because I was too weak to lift up the mattress and put the wooden planks back in beneath my bed.

Then after all that my blood sugars thought they would go up to 13 after lunch because diabetes thinks that it's actions are appropriate.

It's okay though because Diabetes UK made me happy. A couple of days ago they sent off a shirt to me that arrived today. Which has made me very happy indeed and I'm wearing it right now because I am the proud owner of a Diabetes UK shirt. So, thank you very much again Diabetes UK if you're reading this. You're all awesome people!

-Ellie
[Peace&Insulin]


Tuesday, 25 June 2013

"You're going in the right direction"

My Hba1c has fallen from 12.3% to 11.3% and for the first time in a very long time, my average boluses every day are 5 a day. Which I'm very happy about, I could be happier about the Hba1c but it's coming down which is a start.

When my consultant told me my Hba1c I literally let out the biggest disappointed sigh, but he said "no no it's actually very good because you're heading in the right direction" I suppose he has a point! My Hba1c had been creeping up for the past few months but he is happy that I've stopped the gradual rise.

Today was actually a very positive appointment despite my Hba1c still being high. We changed some of the basal rates on my insulin pump because I realised that if I lay in bed until about 11am I will always wake up low but my sensor graph revealed that in the early hours of the morning my blood sugar shoots up; so my consultant figured that my 12am basal rate is too low and my 7am basal rate is too high.

I'm hoping that the basal rate changes will keep my blood sugars steady through out the night and stop me from waking up all sweaty and shaky in the mornings if I lay in late.

I was pretty moody about my Hba1c earlier but I'm okay now. My blood sugars have actually been really good and stayed below 10 all day. My consultant recommended that I wear the sensor for a week to see how the basal rate changes affect my blood sugar; so I am off to go and put on my CGM now and see how things go from here!

Never give up, I am not giving up on my Hba1c and by September it WILL be down.

"Anything is possible if you just put your mind to it"

And remember, if at first you don't succeed, try and try again.

-Ellie
[Peace&Insulin]

Hba1c test today

Today is the day, people.

I have to go up to London for my hospital appointment this morning and in this appointment I will find out what my Hba1c is. I am so nervous because I know that it's going to be really terrible. I started off doing fantastic and I really felt that I had got the control back but it's all gone down hill this past month and a half.

It's such a slippery slope for me when it comes to controlling my blood sugars; I don't know why but it is. I just wish I knew! Why do I struggle so much and other people don't?! It frustrates me so much. I really wanted a bunny rabbit too but I know that's not going to happen now because my Hba1c is probably going to be so freakishly high again like it was the last time. I'm not saying this in a "I've given up" way, this is just a little rant.

This morning I woke up at 6.3mmols which I couldn't be happier about, and I actually did my insulin and I tested after breakfast too and I was 7.0mmols, so that's a start. I have to do this! I just need to get my Hba1c down by September which is most probably my next appointment. Wait let me check my blood sugar now and see what they stand at...they're 7.9mmols. You see!? I woke up at 6.3mmols all I ate was a yoghurt for breakfast, gave my insulin for that, tested after...7.0mmols, test now and they have crept all the way up to 7.9?! How!?

Oh well, I suppose I will just have to correct. It will come down, it just takes time. I WILL get a Hba1c lower than 7%. Never give up.

-Ellie
[Peace&Insulin]

Sunday, 23 June 2013

21st June- Four years

My life was changed completely on June 21st 2009. That day will be forever implanted in my mind- it is a day that I will never forget, it is the day that I was diagnosed with Type One Diabetes. 

I was diagnosed with the incurable disease that means I now prick my finger multiple times a day until they get calloused and rough, I wear an insulin pump that delivers the insulin that I need just so I survive the day, it means hospital appointments and the constant fear that my blood sugars will go too high or too low, the very real threat of complications like kidney disease, heart disease, blindness...it also means that I deal with my own life every single day, I can't take a break because it demands constant attention, constant monitoring...with that comes frustration, anger, but it can also bring happiness and the feeling of pride that I managed to get my blood sugars in control despite my body lacking a fully-functioning pancreas. 

No one knows what the future holds, no one knows which path their life will take and I would never have imagined that I would be living with Type one diabetes.

Diabetes is so much more than what people who don't have it, see on the outside; they see diabetics in the street but only realise the bleeding finger and the drawing up of insulin dosages or insulin pump tubing peaking out from under their shirt; but most of the time it gets passed off as an MP3 player of some sort. 

But they would never stop to consider the emotional bearings of Type one diabetes because they don't know, to others the number on a blood sugar monitor is merely a number; it is just a number that makes the diabetic, a diabetic. For the person who deals with it day in and day out- that number can mean everything, the number means their future. I know it means mine; I know that every high blood sugar reading that appears on the screen, my future is being tarnished. 

I've had so many ups and downs with diabetes and will more than likely continue to do so. I've been frustrated, unwell, angry, sad- but it all makes me stronger. I've had times where I have just felt completely stuck with diabetes and I think "I am not cut out for this" but then I remember that I can do it and I have done it before. The phrase "you can do anything if you put your mind to it" has never had so much meaning to me. 

The past four years haven't been awful though, I can have fun,  I can mess around with my friends, run, jump and I know I have every opportunity to live my life to the fullest despite the challenges that I face living a life with Type one diabetes, because of diabetes I even had the chance to speak in the House of Commons for an event with Diabetes UK and I have met some amazing people through diabetes too. 

I know that life could be worse, although my diagnosis changed my life and means I will have to deal with both the emotional and physical pain of Type one diabetes until they find a cure, it doesn't mean the end of the world.

Being diagnosed with diabetes didn't change who I am, I am still exactly the same person I was before diagnosis. Sure, diabetes has meant that I am stronger now, I know the true meaning of hope and I appreciate the life that I have (not that I didn't before!) but I see things in a deeper light now. I have gained more wisdom in the past four years than I ever thought I would in my whole life and I have probably grown up beyond my years- but diabetes has never done, and never will define who I am.

I like cats and drinking frappucinos from Starbucks and Costa. I love my family and their support means the world to me. All my friends are fabulous and my friend Tia has been there for me from the very beginning which means so much to me. I love the sky especially because it looks pretty early in the mornings and late at night when the sun sets, the smell of fresh air in the morning is glorious and I am such a fruit lover. I love to act and I like singing too. 

None of which have anything to do with diabetes, because although I have it and always will until it is cured, it does not make me, me.

I know I am strong enough for diabetes and I will never let it get me down because I know that I can do it. The hardest thing is just finding the courage. Sometimes, having diabetes makes it hard to see the light and life can get tough but it's okay, there is always a way that life gets better and life could still be so much worse. Every morning I will wake up with a smile on my face because I am lucky enough to still be living my life to the fullest. 

Four years has gone by quicker than I ever imagined.

Stay strong my fellow diabetics, we can do this c: 

-Ellie
[Peace&Insulin]

Tuesday, 18 June 2013

Scary needle?

So, yesterday I went to change my infusion site. I use Mio inserters for my pump, Maurice.

Anyway, as I pushed down on the sides of the inserter- it didn’t fire in straight away so I had to try again. Suddenly, I just froze. I was suddenly overcome with a sense of apprehensiveness that I had only experienced once or twice before- but this time it was different.

This time, I couldn’t do it because I was just too afraid. Before it was some slight worry about how it would feel but that was when I was new to the pump. Nearly two years on and I found myself feeling somewhat afraid of the needle which had pierced my skin many times before.

I don’t know why I felt so anxious about pushing down those buttons for the second time- but I did. I suppose we all feel fear at some point in our lives and maybe at that moment I let fear break through. I am not afraid of needles but yesterday was strange- to feel a sense of hesitance in inserting the cannula was an usual feeling for me.

Thankfully,  I found the courage to carry on and inserted my infusion site which caused me hardly any pain, which made me more confused as to why  I got slightly scared of the insertion.

Oh well, we all have our days.

-Ellie
[Peace&Insulin]

Sunday, 16 June 2013

Race for life 2013

Today was the Race for Life!

Every single year the event is really fun and the atmosphere is brilliant. When you walk up to the park all you can see is a sea of pink tutus and bunny ears. We had a big team this year, all sporting the name of my mum's running group: Breakthrough Runners.

My blood sugars did not feel like co-operating today. 

I tested my blood sugars before the race: 10.6 mmol ..."okay, not too bad" I let them be because I knew running the race would bring them down. This was about half an hour before the start of the race. Just before starting the race, I checked them again and they had gone down to 8.9 mmol...it was still okay because once again, I knew they would come down a little bit. 

Off we went following the big flag that said 'Runners' if there was a flag that said 'crawlers' I would have gone to that one. The race for life is about 5 kilometers/ 3 miles. Of course, everyone in the running group had been training twice a week for this race and they all ended up doing brilliantly, apart from me. 

Literally about 15 minutes into the race, having started off really well, I had a good pace going...then my blood sugars went low. I checked my blood sugars and I was at 3.9 mmol, so I called to my sister to wait for me but then my mum came up behind and told my sister that she could go off; having munched through a teacake I waited for a few minutes then started up the race again. Too bad my legs felt like jelly. After I have a low blood sugar it always takes me about half an hour to start feeling like a fully-functional human being again but I wanted to finish the race in good time. I was really frustrated because I wanted to do well this year but clearly diabetes had other ideas. 

I feel bad for my mum too because she stayed with me while I jogged/walked at a pace similar to that of a drunken snail and she knows, and I know that she could have run way ahead of me and finished the race in a brilliant time; but she didn't, she stayed and that is just the kind of wonderful mum she is because she sacrificed a good time to make sure that I was okay. 

After 42 grueling minutes me and mum finally crossed the finish line. The commentator thought he was funny by saying "You two are in the top twenty!" to be honest, I was in a bit of a bad mood so I didn't find him funny in the slightest...a bit obnoxious actually. Then he said "only joking, just to make you feel better"...no. 

So yeah, I'm not happy with my time but I tried my best in the circumstance. 

Then again, I won't feel disheartened because I know that diabetes doesn't always get in the way of sport and exercise because I look at diabetics like Gavin who ran 30 marathons in 30 days and it inspires me and I know that I can do anything- it's just annoying because sometimes diabetes gets in the way a tiny bit and it knocks you back, but like I always do; I'm dusting my shoulders off, ready to do even better in Race for life 2014.

Today I raced for my mum and my nan who are survivors. My mum survived breast cancer and my nan survived kidney cancer and non-hodgkin's lymphoma. I also ran for everyone else who has cancer, who had cancer and for those who lost the fight.

So far our team have raised £1,685 for Cancer Research UK. 
Together, we will beat cancer. 

Saturday, 15 June 2013

Tumblr.

Earlier I decided to make a Tumblr because I got bored, really. If you have a Tumblr please follow me on there: elshuckle.tumblr.com - some will be about diabetes, some won't be; but yeah.

-Ellie
[Peace&Insulin]

Monday, 10 June 2013

When the going gets tough

I have been doing so well with my blood sugar control this past couple of months or so; it took a lot for me to get back on top of my diabetes. Then once I finally did it, it felt amazing. I don't know how I did it- something in me just clicked and I could do it all with fluency. I didn't struggle to bring myself to give insulin or test; I could just do it.

So when I write this post now, I'm not going to say I can't do it, because I know I can do it. I've done it times before and I will do it in the future. It's just, for now, I can feel it slipping out of my grasp. I've had a tight grip on my diabetes for a little while now; but gradually I knew I was falling out of the routine. I am feeling rather frustrated at this because I just want to see a hba1c below 9. I know 9 is still really high but that's an achievement for me because I don't know why, but every once in a while I go through times when it gets really tough.

I can't even explain it. I know people around me would think "What makes it so hard to grab your testing kit and test?" "What makes it so hard to press a button and bolus?" I couldn't answer that question if I tried. I just. don't. know. I wish I knew; if I knew i'd take whatever it is and throw it out of the window. No matter how hard I try, I have not the slightest idea. A few days ago I was eating an apple and I said to myself "come on Ellie, bolus for it. Just bolus" I did it, obviously, but it took more effort than it has done.

The motivation just goes. I hate it and I wish I could deal with my blood sugars as great as everyone around me seems to. Days like these I sit back and think "I am not a very good diabetic" You see, my mind-set towards my diabetes is hardly ever negative, I believe in having a positive attitude. I don't see any point in sitting around wasting time in life. You only get one life and one chance to live it. So even though I think that, I sometimes think "But, all this makes me stronger" it sort of builds a fire in my belly to really get back up and dust my shoulders off to show diabetes just who's in charge.

And that's me. I'm in charge.

It's my life and I'm not going to live it twice so that is what frustrates me even more when I find my control slipping- I feel afraid of what could be. I can't bear knowing that all the days I struggle are tarnishing my future and it annoys me. Diabetes angers me in that sense; it's not something like, for example...the flu.

When a person has the flu, tablets will make the symptoms go away- then eventually the flu will go away. If a person forgets a tablet for flu- then they begin to feel bad again, but that's it. If a diabetic forgets their insulin, they feel terrible, diabetes will always be there and the missed insulin means a tarnished future with every high blood sugar that comes about.

Anyway, I know I'll get through this rough patch with my mum and my dad to support me along with the rest of my family and my friends. I try not to get too down about diabetes anymore like I used to, but people just need to understand that it's tough and it will get monotonous for me and I am still a teenager and distractions can push diabetes out of the way but I'll get there in the end.

One conversation I won't forget is one I had with a man at the Parliament event with Diabetes UK. He came over to me and said "I have had diabetes for 54 years. I still have my arms, I still have my legs and I can still see you!" He beamed with pride at what he had just said and at that moment I honestly felt so inspired. I thought, it is people like him that remind everyone else with diabetes of some very special things- Courage, perseverance and hope.

Every cloud has a silver lining guys.

And remember,

"When the going gets tough, the tough get going"

-Ellie
[Peace&Insulin]

Thursday, 6 June 2013

Parliament with Diabetes UK

I realise I haven't posted in a few days but I'm back now. To tell you about one of the most brilliant days I have ever had. It was also my dad's birthday; which was fab.

Yesterday was the Parliamentary Lobby for Diabetes UK's Type 1 Essentials campaign: http://www.diabetes.org.uk/Get_involved/Campaigning/Type-1-essentials/

I had a really lovely day and enjoyed every second of it. It was great to finally put faces to names, like Joe and Helen. My speech (by the sounds of it) went really well. I'm glad I didn't fall over whilst walking up to the microphone or one of the other ridiculous thoughts I had running through my head before my talk. Everyone was really friendly and it was nice to meet Richard Lane and Barbara Young, and well, everyone else from Diabetes UK too and the families and MP's. I had a brilliant time. I even got to speak to my local MP Andy Love.

I was surprised how many said to me they had read my speech and really liked it. I was so happy. and to my surprise a lot said to me "Are you Ellie?" It was fabulous to be so recognized by people. I am sad that it is over but I have been left with great memories never the less. I hope I can do something similar and talk to people for Diabetes UK again. I will never forget Wednesday 5th June 2013. And, thank you to Diabetes UK for the opportunity; I never thought I would say I've done a speech in the House of Commons.

Anyway, this is only a short blog post! I just got back from Westfield and found my prom dress which  I am very happy about. Scroll down for some pictures from the day.







 -Ellie
[Peace&Insulin]


Sunday, 2 June 2013

Sunrise

Last night my twin sister and I were still up at 4:00 am for some reason; probably because last night was quite muggy...anyway, we couldn't get back to sleep so we got up and opened up the window and the sky was getting lighter. I think the simplest things in life are the most beautiful- and this was one of those things. I just loved the way it looked, the world was waking up.

Then we searched up what time the sun was due to rise at: 4:49 am. I really wanted to watch the sunrise, I've never properly seen it rise and I just really wanted to see it so we stayed up. I sat up in my bed and I was listening to music; we had the window open and the air was so fresh and just smelt so crisp. The birds had been tweeting ever since we woke up, it was just so tranquil. Before I knew it, the sky was light as day and we could see the sunrise to our left. It was just so beautiful. 

I watched the sunrise on June 1st 2013; the month that marks the end of my GCSE exams, four years with Type 1 Diabetes, my third time doing the Race For Life, my hba1c appointment, Parliament with Diabetes UK and a few family member's birthdays, including my dad's on June 5th. All in all, June is going to be a pretty hectic month- so it was nice to start it off with the peaceful sunrise. 

Pinch, punch, first day of the month.

-Ellie
[Peace&Insulin]