Message Monday-#DBlog Week Day 1

“Todayโ€™s topic is Message Monday.ย  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)” Karen Grafeo (Bitter-Sweet Diabetes).

What I’m taking from this one is why do I Dblog? The answer to this is going to have a few sections so I am afraid you are going to have to bear with me for a bit ๐Ÿ˜‰

Here is my first video (I’m pretty sure it came before the blog) explaining what I set out to do. In a bit over a year since I think that the bones have stayed the same but had been significantly added to as I’ve grown. So here is what I am all about now.

First and foremost, it helps me. It helps me to process things that happen with my diabetes, to reach out for help when I need it, to make connections with others going through the same thing or who have been there, done that and can offer me advice and most importantly it makes me feel less alone. There is no community based group for people with T1D in my area so I have grown up not knowing anyone else who was living with the same thing and as a result felt very alone and isolated. Being able to connect with other people (even if I never see them face to face) takes away this feeling of being alone and gives me reassurance that I am not the only one in the world facing this and that there are solutions and other methods that I have not tried.

Second of all when I discovered Dblogs it was amazing, a whole new world opened up for me, suddenly I was not alone and others had gone through or were going through similar things but the only problem was they were all American and the American health system is VERY different to the New Zealand one (the terminology is also different but that is less of an issue). I was discovering all of these management methods and equipment that looked incredible but was not available to me and it was really frustrating. I had no knowledge about the New Zealand health system and what was available and what popular management techniques were. I felt like I was flying blind, I kept asking my team for things that they had never heard of or that weren’t available and it became very confusing. I wanted to provide something for people in New Zealand (and other places if they wanted) that explained what WAS available here and using language that was familiar.

Thirdly I wanted to provide a ‘big girl with T1D’ for younger girls. I never had this growing up and I really feel that it would’ve helped me to see someone older who despite all the T1D stuff was getting on and doing things. I feel I may have felt a bit more like I could do things rather than oh but I have T1D so I can’t.

Okay I forgot one…fourthly, I wanted to provide a place that was open honest and real about T1D. I read so many really inspiring Dblogs where people do incredible things and I get all powered up, ready to take on the world and then I can barely make it to lunch time because I have a series of lows overnight and wake up really high. I applaud those who are able to not let T1D affect their lives in any way but for those of us who it provides a daily struggle that sometimes feels far too much I wanted to provide reassurance that it is not just them and for those who have no concept of what T1D is I wanted to provide a glimce of what it can be like (note I use can because everyone’s experiences are so different).

And finally (I know I forgot two!) I wanted to help. I know how horrible it is to feel alone, like no one gets it, that you work your butt off but everything still goes wrong, and I don;t want anyone to ever feel that they are alone in it all or that everyone else is perfect. I want to help educate those that have never heard about diabetes, to give some insight into what diabetes means, how it can be managed, what it means to live with it and to hopefully remove some of the stigma and myths surrounding it.

Dblogging has become part of my T1D care and I am really thankful to be able to share my experiences, thoughts, concerns, failures and successes with an amazing online community while building some rock solid friendships along the way. Hopefully people read my blog and it helps them out in some way but if no one reads it thats okay because it does my soul good to write it and process it.

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Putting a Face to the Name (the High Blood Sugar Demon)

I was recently asked if ย would like to submit a blog post to Diabetes Daily Grind to be published on their site. I was over the moon!!! But rather stumped as to what to write about. Then I had a really bad high and I knew what to write about. What it is like to experience a high blood sugar.

Here is the blog post.

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Please let me know what you think, do you experience highs differently? How do you handle the emotions that come with it?

Make sure you check out Diabetes Daily Grinds site too and some of the other fantastic blog entries ๐Ÿ˜€

Hope

 

Public Lows

This post is ones that is very important for me to write but one that is extremely difficult for me to post. Because of this I ask that you note that this is my personal experience and thoughts on a situation that occurred for me. Everyone has different experiences and thoughts but these are mine so please be gentle with that. Thank you x

Hypos or lows, they happen anytime any place don’t they? We have no or very little control over them. The ones that hurt and scare me the most-the ones that occur in public. 

Yesterday I was out with my new friend from college in a new city where we are both studying for six weeks. I’d tested and was 4.6 so had had some carbs and we started searching for a supermarket to find a cold drink. I began to feel low and explained this to my friend, by the time we reached the supermarket I was struggling with my words and vision and my head was spinning. Upon reaching the drinks isle I was having black spots in my vision and was struggling to stand. Eventually I managed to work out which drink was diet and which had sugar and found the check out, along the way I’d found two king sized crunches, mentos and a creme egg. Reaching the self checkout I somehow managed to scan and pay for it all. By this point I was barely able to see and had pulled my sunglasses down to help and hide me crying. I had black spots in my vision and nothing was in focus; I was beginning to shake, couldn’t speak well and was terrified I was about to collapse. I managed to tell my friend I had to drink there in the supermarket which (thank goodness) she understood and accomodated. I tested and was 2.2 ๐Ÿ˜ญ  

 My friend sat with me next to the checkout for about 15minutes as I tried to get sugar into myself. She said I was really white and looked terrible. I went through various stages of the shakes and being unable to express what I needed all while trying to remain upright and not cry. 

I was humiliated, my friend had asked to hang out and I needed up turning myself into a public spectical who she had to babysit and there was absolutely nothing I could do about it ๐Ÿ˜ญ I felt like a horrible friend and failure as a person.

With hypos at home at least I can lie down and sob while I go through the shakes and the sugar kicks in without anyone seeing. At least I am not in anyone’s way. At least no one has to know what happened. 

For my friend I am so grateful, I will never be able to tell her exactly what it meant for her to sit there with me, talking and making sure there would be assistance if I needed it. But I really wish she hadn’t had to. I find it terribly difficult to accept that this happened and whether I like it or not will probably happen again.

What can I do? Well I can work as hard as I can to control and maintain my blood sugar. I can carry fast acting glucose with me. I can do my best to explain to whoever I am with what happens when I have a low and what I may need them to do to help me. I can wear medical ID so that their conversation with a 111 operator is a lot smoother should they have to have that conversation. And if the situation does arise I can talk openly and honestly about it and its effects afterwards. And I absolutely have to come to a place were I know I did everything I could to prevent and improve the situation. It’s not much but in these situations it’s all I can do. 

How do you all handle your public lows? What do you have in place in case you have them? 

Thank you for reading my thoughts and experince, as always if you have any questions please fire them at me.

x Hope

Relinquishing Control-Blood Sugar Checks

Admit it, as someone with T1D you like to, no, have to control what happens to you with regard to being poked and prodded. We are subjected to so many tests, shots and site changes that are uncomfortable at the best of times, of course we want to be in control of these. We want to be able to control how quickly the needle is put in, or where. the depth of the finger prick and how hard our finger is squeezed. There are so many different aspects of T1D that cannot be controlled, so we really latch onto what we can control and tend to fight off any that threaten this.

For me, I haven’t let anyone test my blood sugar in over 10 years! It’s my thing, it’s personal, it involves getting into my space and and making me bleed for crying out loud! It hurts quite a bit of the time (I have such skinny and bony fingers!) and overall I just haven’t trusted anyone else to do it and do it well (not to mention wanting to be the first to see the resulting number so that I can decide if I am actually going to reveal the real number).

In the past couple of days it has come to my attention that maybe this isn’t as good for me as I was thinking. My Mum, Dad, Boyfriend, siblings and friends watch me test but I do it so quickly that to them it’s really just a 10 second blur, they couldn’t replicate it themselves without direction. Does that matter though? I mean how often am I in a situation in which I am unable to test my bloods? And that was were I stumbled in my thinking. Day to day I’m generally not in that situation but in the past week I have been verging on it quite a few times, leaving my boyfriend sitting there doing his best to make me eat and get my sugars up (which he is amazing at) while not knowing if what he is doing is having any effect because I’m refusing to test my bloods again. Take it one step further to him finding me on the floor or unable to wake me in the morning (God forbid either of these scenarios actually ever eventuate, although they have in the past) and he NEEDS to know WHY I am not responsive so that he can take the appropriate action to help me. I think he had been musing on this too because this morning he asked if I could teach him how to do a blood sugar test.

This morning I said yes, lets do it. I sat him down and instructed him to test his own blood sugar (he got a perfect 5.4) and then he went on, unassisted to check mine. I took photos to try and distance myself from the whole thing (I was rather worked up) but he did a perfect job! It didn’t even hurt (I wont tell you my number, lets just assume I wasn’t high but it was above his).


Now someone that I spend a great deal of time with (when we are in the same city) is capable of not only treating my blood glucose when it’s low but testing to see if that treatment is required. It has put his and my mind at ease that now,if required he has the knowledge and capability to do this.

I still think that a blood sugar check is very personal (to me at least) and is something which I intend to keep control of but when appropriate and for the right reasons I am now okay with the idea of handing that control over to someone else (doesn’t mean I wont make attempts to snatch the meter before the number appears though).

As always these thoughts and opinions are mine and mine alone, you may find yours to be different and that’s absolutely fine ๐Ÿ™‚ Please feel free to shareย your thoughts on blood sugar tests. Do you always do them? Do you let anyone else? Does a member of your family know how to? Let me know in the comments below or over in Instagram @hopie_duncs or twitter @hopieduncs

Have a great day guys.

Hope

Continuing Connections – #DBlogWeek Day 7

DOC (diabetes online community) is a fantastic way of making connections with others who are travelling the same route as you with diabetes, it is also a great place to ask questions and find out about different technologies, coping strategies and maintenance ideas.

DBlogWeek has been an incredible way of broadening my circle of known DBlogs, there are two ladies that I need to thank for introducing me to #DBlogWeek. First is a lady that I found on FaceBook Arlene who writes the wonderful blog Cut the B.S.!…I mean Blood Sugar!ย I highly recommend checking out her blog, it is easy to follow/read and I enjoy it ๐Ÿ˜‰ The second is the fantastic Karen of Bitter~Sweet Diabetesย who is the founder and host of DBlogWeek. Not only has she got a fantastic blog but she has a list of all the people who have taken part in this years DBlogWeek here so that if you want to find some new DBlogs or just see what else is going on out there you can have a wee browse. I think there are around 200 so plenty to choose from and you are sure to find something that you like among it all ๐Ÿ˜‰

I will, over the course of the next year, work my way through these blogs to find new reading material but this week three blogs in particular stood out to me. First up is The Grumpy Pumper, I feel dreadful admitting this but I have been following the Grumpy Pumper on Twitter for months but have nit gotten around to checking out his blog and the answer is yes, his blog is as good as his tweets! He has a humor about him that I could not possibly recreate and I enjoy immensely, it may not be your cup of tea so go in with an open mind but I do smile when reading it.

Second is The Trials of Type 2 Diabetes. As someone with T1D I have gotten constantly frustrated with people making comments about me or my illness that, I feel, only apply to people with T2D. But as I have ‘grown up’ I have started to research ‘what is T2D,’ what is the disease process, who can get it, why do people get it, what are the influencing factors etc etc. The more I have researched the more I have understood about the disease process, risk factors etc etc but I have never actually been able to talk to someone with T2D to get an idea of a comparison between T1D and T2D. Far as I found (so far) this blog was one of the only ones for T2D taking part in #DBlogWeek (I could be totally wrong about that!)

Third and final was the blog Defining Diabetes and Mental Health.ย This blog seeks to bridge the gap between diabetes and mental health and get talking about how really they go hand in hand. As an occupational therapy student I have learnt a lot about mental health and it’s impacts/correlation with those suffering from physical ailments but it has only been in the past maybe 5years that I have realized the impact that diabetes has on my mental health and I have never found anything talking about it openly. Until now. I have not read all of the blog posts available on this site but from what I have seen and the description they offer I think it looks great and would really recommend it to all PWD because it is an area of life that all too often goes under the radar or people dont want to talk about.

Those are my new picks from #DBlogWeek I hope you enjoy having a read through them as much as I have. A huge thank you again to Karen for arranging #DBlogWeek and to all those who have participated, it has been a fantastic week ๐Ÿ˜€

Hope

Favourites and Motivations – #DBlogWeek Day 6

Finally! I’m only one post behind now, the catch up is working ๐Ÿ˜›

Today is about my favourite bloggers in the DOC (diabetes online community) and/or what motivated me to start blogging.

I have only been involved in the DOC for the past kinda 6months (I’m a late bloomer when it comes to technology hehe). The person I have to thank for this is the incredible Ally a.k.a. VeryLightNoSugar click that link and check her out! I first discovered Ally on Twitter (she’s under VeryLightNoSugar again on there) where I clicked on a couple of her blog links. This girl is phenomenal! She tells it like it is, which I appreciate more than I am able to express right now. So many people sugar coat diabetes and down play the tough stuff, while Ally doesn’t make a huge drama of it she does explain it as it is. The reason I love this so much is because I always felt guilty for finding certain aspects of diabetes difficult or struggling to get my head around something, it was like ‘suit up and get on with it’ and when I wasn’t able to do that with the ease I felt I should it was devastating. Knowing that for someone else diabetes makes x, y and z a little tougher was fantastic! Seeing new ways of approaching these different aspects was fantastic too, suddenly I didn’t feel alone and I was normal. These are the reasons I am recommending Ally, this and she is a brilliant writer. So you really should check her out, you will enjoy it, I promise ๐Ÿ™‚

What motivated me to get blogging, especially when there are so many fantastic DBloggers out there already. Pretty simple really, my journey with diabetes is all subjective (from my stand point), no one could turn around to me and tell me I was wrong because it was my feelings and thoughts and attitudes toward something that I was going through. For me this was comforting because I am not one for confrontation or debating who is right or wrong, it intrigues me greatly to see and understand why people experience things differently and I was keen to see if anyone else was similar to me and if so how did they approach things. The main reason I started blogging through, was that I couldn’t find anyone in their 20’s in New Zealand who was doing it. Healthcare is very different here from in the states and while I love hearing how things work overseas, sometimes you just need to know whats going on in your own backyard. I grew up feeling very along in the diabetes world, I had no one my own age, or older to look up to or talk things through with. I feel that had I had this I would’ve grown up with a very different attitude toward my diabetes. Because of this I wanted to try and be this person for younger girls in my neck of the woods (or anywhere for that matter). I attended a diabetes youth camp for younger children at the beginning of the year and this is where I really found my want to help out younger kids with T1D. I was asked a whole heap of questions by the young girls (that I am sure they wouldn’t be as keen to ask a non-T1D) and when they found out I had diabetes it there was a lot of screaming. I want to show people that they can grow up to be whatever and whoever they want dispite having diabetes, that it is a big factor of their lives but it does not have to control them, and that they can grow up healthy and their diabetes not effect them any more than it has to.

It all sounds terribly mushy doesn’t it? But there is the truth of all of it. I do hope that I am making some kind of impact on those that read my blog (a good one preferably!) Even if I never get to see it, knowing that it could possibly be the case is more than enough ๐Ÿ˜‰

Foods On Friday – #DBlogWeek Day 5

Today is all about food…this is a bit of an iffy subject for me, in my world food is for fuel, I often don’t enjoy what I am eating and only eat it to regulate my BS (blood sugar). In saying that there are a few foods that I really do enjoy when given the chance and good BS ๐Ÿ˜‰ so we will see how this goes, I will try and explain why I have chosen what I have to eat throughout the day and I’ll tell you what I have to do in order to be able to eat it and have a reasonable BS afterward.

I thought a good way of connecting my diabetes into this post would be to show you a standard day for me on Diasend, so I have screenshoted Saturdays record and I will walk you through it all ๐Ÿ™‚ I wont explain all the information on the graphs etc because I feel it is pretty self explanatory but if you do have any questions please feel free to ask them (I do understand that looking at this from a non T1D point of view it may seem rather confusing).

Oh and I have used Saturdays information instead of Fridays as Friday got away on me and I attended a friends garden party in the evening which is not my norm and which also entailed a beautiful potluck and alcohol (neither of which is great for a PWD trying to carb count hehe but it tasted so good!) so I figured that giving you a standard day would possibly be of more use ๐Ÿ˜‰

Lets get into it then ๐Ÿ™‚ carbs that I consumed are in the lower table just above but I will tease them out and give explanations of what I ate and why etc etc.

08:46 – Breakfast – 24g = porridge. I try to always have porridge for breakfast, I find it is a good slow release and doesn’t contain any added sugars or sweeteners. I also have the problem of feeling sick in the mornings and not wanting to eat anything at all but having diabetes doesn’t let me act on that feeling, when I do have breakfast I often have very distorted taste and I figure porridge is bland so it’s not as upsetting to my taste buds hehe. This feeling is always exasperated when I wake up with a high BS (I don’t know if any other PWD have this or if it is just one of my irritating qwirks?)

12:53 – Lunch – 30g = cheese toastie. Now I realize that not everyone reading this will be from New Zealand and we have very different terminology from the USA so I shall expand on what a cheese toastie is. You take two pieces of bread and butter them on both sides (this will make sense in a sec), next you place cheese and pineapple inside like a sandwich. Finally you place all of this in a toastie maker (I think this is also called a sandwich press?) What you end up with is toasted bread with melted cheese in the middle that is about 90 Degrees Celsius and burns you as you bite into but you are caught in a trap because as you pull away you realize the cheese has stuck to your mouth and is now stringy and looping everywhere. It is hilarious to watch people eat and tastes really good!

16:40 – Afternoon Tea – 21g = Cheese roll. Another New Zealand phenomenon hehe, this time you do the same thing but instead of pineapple you put chives and spring onion and you roll the bread into a roll before toasting (so good!)

17:36 – I was hungry – 27g = lammington (sponge with icing and coconut). Basically I hid two of these in my room so my younger brother wouldn’t eat the whole packet and I would actually get one, anyway, it was staring at me and I was hungry so it made sense.

18:09 – Curiosity – 16g = sour jelly beans. I found these fancy jelly beans I was given for Christmas and felt the need to try them then and there without having to wait for a hypo ๐Ÿ˜›

19:46 – Dinner – 30g = grilled chicken and steamed veges. It’s fair to say I was not overly hungry at this point but needs must ๐Ÿ˜›

20:03 – Lack of Self Control – the jelly beans were calling…

22:19 – Too Much IOB (insulin on board) – 10g = jelly beans. I tested and was perfect but I had over 1unit on board which was enough to send me into a hypo, it was logical to eat enough to cancel that out.

22:28 – Where is my brain?! – 21g = another lammington! At this point I must confess something, I was skyping my boyfriend and so was completely preoccupied when I was eating the jelly beans 10mins ago, I bolused for them, when the entire point of eating them was to cancel out my IOB! (Men! They just mess with your sugars!) So as a second cancellation of IOB I had my last lammington.

Whenever I had any of these things too eat I have to calculate the carbs that I am consuming I do this one of three ways: I weigh my food and enter it into Calorie King, here is the link if you want to have a look (I think it’s fantastic); or if it is something I eat regularly such as an apple I know the carbs and can just enter them from memory; or for things that come in servings I will weigh out a serving portion and use the information provided on the packet ๐Ÿ™‚ after I find out the carbs I enter the total into my pump and a calculation is run based on my I:C ratio (insulin carb ratio, how many units of insulin I need per gram of carb) and that insulin is given to me.

When I am at college I will make myself a packed lunch and when I was learning to carb count (and if I have anything new in my lunch box) I will write the carb total onto the gladwrap of the food item. It looks a bit daft but I find it very helpful when I am on the go or trying to concentrate on other things and busy.


The main thing i would like you to take away from this post is that PWD can eat anything that they want, we aren’t allergic to sugar and we wont die if we eat it as long as we have the appropriate insulin to cover it. I don’t normally eat so many sweets but every now and again it doesn’t hurt ๐Ÿ˜› ย Some people do this via carb counting others have other methods. For me I HAVE to have three main meals a day and if I do not have a small snack mid morning and afternoon I will go low (as I did at lunch today because I didn’t have morning tea). Everyone has certain things that they have to do every day to keep themselves healthy, mentally and physically, everyone’s list is different and mine includes having to eat at certain times and calculate what I have eaten. It feels really overwhelming at first but as you do it, it becomes second nature and a lot easier.

If you have any questions about carb counting or how I do things or need clarification on anything please feel free to ask. I’m not a Dr so cannot give you any advice or direction that regard but I have learnt some tips along the way that make things easier ๐Ÿ™‚

Changes – #DBlogWeek Day 4

Changes that I would like to see in the world of diabetes. Well if I could change anything about diabetes and an illness I would make it non-existent, ย so I guess there is not much to talk about in that area hehe. Instead lets talk about the equipment and technology available for PWD (people with diabetes) and my (very limited) thoughts on those ๐Ÿ˜‰

Lets start off with the technologies that I use on a daily basis:

Glucose Meter

Insulin Pump

Diasend (an internet platform for uploading and looking at the information/history of my pump)

Calorie King (for counting carbs)

I am extremely thankful that I have these technologies available to me instead of having to pee in a cup and and taste it or use a horse needle to to inject an un-calculated amount of insulin in the hope that you get it all more right than wrong.

I’ll start with the glucose meter (excuse me I am about to get very very excited here!) Have you seen the new Abbott Freestyle Libre?!! Oh my goodness if you haven’t click the link and have a wee look before you finish reading thisย http://www.freestylelibre.co.uk/ย basically it is a glucose monitoring system that has two components: a receiver and a reader. The reader is a small disc that is inserted into the upper arm (it lasts approximately 14days) you can then scan this disc with the receiver (this part can be done through clothing and takes 1second) to receive a glucose reading. No pricking, no waiting for the monitor to count down, no only having a certain amount of strips available every day or trying to coordinate yourself when your low or on the go. Anytime you want a reading, just scan yourself! This is beyond brilliant! I cannot talk this system or idea up enough! (can you tell I’m excited about this?) The only downside is that I am in New Zealand, which is pretty much the last inhabitable place on the bottom of the globe, so the rest of the world (it feels) has access to this technology and there is absolutely no release date set or even planned for New Zealand. It is beyond frustrating but something I am holding out for so desperately! And if anyone who is reading this has any experience of this tech please, I would love to know what it is like and whether you like it or not ๐Ÿ™‚

Insulin Pump, I have the Animas Vibe Insulin Pump. To be honest there is not a great deal I would change about my pump. I would love if it was slimmer as I find there are some styles of clothes that I have stopped wearing because they look quite silly with my pump, so I feel it does effect how I look in more ways than just having a box attached. My boyfriend thinks there should be a form of pump that is a set and forget, so that you don’t have to carb count and input info etc etc. Now this would be absolutely fantastic but there is a small part of me that has come to rely on the control I have over being able to choose the amount of insulin I have etc. The Dexcom, now that can link in with my pump and send it a glucose reading every 5minutes but, it is up to me to keep an eye on this info and choose what to do with it. I would love if my pump would register the readings and give me corrections based on the readings, taking into account IOB (insulin on board) etc, this, I feel would make my control super ๐Ÿ˜‰

Diasend, this platform takes all the information my pump has collected and does some mathematical magic to come up with pie graphs, charts and stats all about my carb intake, insulin taken and BS (blood sugar). It’s fantastic, I can email it through to my endo or DN (diabetes nurse) and they can sit wherever they are and give me advice on what I need to change. It’s brilliant. the only thing I would love to see with it is some sort of introductory video that explains what you can do and how to do it, it’s a bit of a have a play and see what happens kinda set up.It would also be quite handy to have it as an app for the HCP (health care professionals) as they could look at it easily on the go.

Last but not least is the app/website that I use to calculate my carbs so I can have the appropriate insulin. Call me too controlling if you like but I weigh everything I eat, unless it comes in single servings and the packet lists how many carbs is in that single serve. I find that with a pump it pays to be exact and the only way i can do this effectively is through weighing. Calorie King allows me to search a particular food or ingredient. There are some staples like wholewheat or brown flour that for some reason are not in Calorie Kings data base, which is slightly frustrating. On the whole I find the website a great deal easier to use than the app but if I have my way with carb counting I would have a tiny device that I could scan my food with and it would send the carb content directly through to my pump and my pump would give me the required insulin ๐Ÿ˜›

I know, I know a lot of what I have said is rather futuristic and largely unobtainable (especially the later) but I do think that there are many elements we could add to today’s technology that wouldn’t necessarily take a heap of brains to do (well more brain than I have but I’m positive you can find that out there) and those changes can and will make a huge difference to how diabetes in managed and (I think) change the lives of PWD for the better ๐Ÿ™‚