The Other Half of Diabetes

“Our topic today is The Other Half of Diabetes.  We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)” Karen Grafeo (Bitter-Sweet Diabetes).

I’m so far behind in Dblog week, my apologies, this year it happened to fall amongst my assessment week and they have had to take priority. I will write all the blogs planned they will just be really late 😛

Emotion, thefreedictionary.com defines emotion to be:

1. A mental state that arises spontaneously rather than through conscious effort and is often accompanied by physiological changes; a feeling: the emotions of joy, sorrow, and anger.
2. Such mental states or the qualities that are associated with them, especially in contrast to reason: a decision based on emotion rather than logic.

So how does that tie with diabetes? How does your body not producing insulin link with you being angry, sad or happy? Honestly, at a chemical or biological level, I don’t know but it does have a huge affect! More than I to care to acknowledge, looking into some stats for this blog I discovered that people with T1D have two to four times the chance of developing depression. Whilst I cannot explain why there is is link o what that link is, I can describe/explain what happens to me and my methods of trying to deal with it.

Last month I was asked if I would mind contributing a blog to Diabetes Daily Grind it could be on anything I liked, there was only an approximate word count that I had to comply with. I spent a few days trying to come up with a subject to write about and then I had a really bad high and ended up blowing up at someone (I have a feeling it may have been my Mum but I can’t rightly remember 😦 ) Mum and I had a big talk about what happens when I am high and how much I have changed emotionally since going on a pump and gaining some form of control over my bloods. I realized that I cannot be the only one who experiences intense emotions with blood level changes and I felt like it needed discussed. So that was my blog Putting a Face to the Name (the High Blood Sugar Demon)  I have linked it in so that you can go and have a look at it rather than post the whole thing. Keep in mind in that post I am only discussing high blood sugars.

I also want to talk about low blood sugars and what I experience with them because whilst my coping methods are similar to high blood sugars what I actually experience is totally different. I want to link in a blog post written  by someone else here because I believe the author has hit the nail on the head and I am not able to describe any more accurately. The post is called ‘Everything was in slow motion. Even my brain was going slow. (A hypoglycemic event explained)’ written by Neel Jadeja on the blog ‘LifeLoveandInsulin.’

Having to deal with such an emotional roller-coaster everyday is exhausting, especially when there is the opinion that if you worked harder and controlled your bloods better then you would not be experiencing the emotions caused by highs and lows. It never stops, you don’t get a holiday, you don’t get paid and there is very little reward for the effort required in comparison to the flack you will get when you are deemed not to have done enough. It’s normal to feel confused, irritated, sad or frustrated about it all and on the whole those feelings come and go as your management changes but sometimes ruts form and those feelings don’t go away, they get worse and start effecting how you manage your T1D, or in some cases don’t manage it. If this happens one of the best things you can do is talk to your DN or endo, let someone know you are struggling, it sucks to admit it and have to talk about it (trust me I know) but if you don’t no one can help. Generally hospitals will have a psychiatrist on the team who specializes in chronic illnesses and you can be referred to talk to them. Being referred to them doesn’t mean you are sick, it just means that you need some support and you may only need this a few times or you may need it over a longer period but if its what you need in order to manage your T1D most effectively then it just has to be part of your management system. If you can find out if there is someone available who specializes in chronic illnesses (or even better T1D) but if not then a general councilor or just talking to your DN or endo is a fantastic place to start.

Most importantly, know that you are never alone in how T1D makes you feel and there is always someone who can talk it over with you and take some of the strain.

 

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Message Monday-#DBlog Week Day 1

“Today’s topic is Message Monday.  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 😉

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.

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

I was recently asked if  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.

arguments

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 😀

Hope

 

My First Year Pumping

I’ve done it! 365days with this little doofer. At week 12 I was seriously doubting my decision take on a pump but I am so thankful that I decided to nut it out! Looking back I do not know how … Continue reading

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 🙂 Please feel free to share 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! I highly recommend checking out her blog, it is easy to follow/read and I enjoy it 😉 The second is the fantastic Karen of Bitter~Sweet Diabetes 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 😉

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. 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 😀

Hope

Favourites and Motivations – #DBlogWeek Day 6

Finally! I’m only one post behind now, the catch up is working 😛

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 🙂

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 😉

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,  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 😉

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 this http://www.freestylelibre.co.uk/ 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 🙂

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 😉

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 😛

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 🙂

Clean It Out – #DBlogWeek Day 3

Clean it out, well I guess depending how you approach it this could be interpreted two different ways.

1. Cleaning out the emotional pa-lava that seems to accomplany T1D

or

2. Clean out the stash of diabetes paraphernalia, medicine, devices and god knows what else that every PWD seems to have hidden somewhere.

To attempt to ease myself into this weeks blogging I have gone for the later (and for your sake too as I am sure neither of us would cope too well if I unlocked that other closet!).

So here it is, the ‘diabetes stuff’ from my draw, cabinet and a banana box under my bed, everything that I could find that was diabetes related that I own…must say I am slightly embarrassed.

Here’s what we have: 3x novorapid pens (from when I was on MDI and in case I ever need to go back); 1x humalog pen (since when did I use humalog?  I mean I have reactions to it! Well the three packets of humalog insulin in the fridge state it was at least 6years ago and yes for some unknown reason I still have those vials of insulin too); 5x blood glucose monitors, 1 from about 9years ago, 1 from 8years ago (that I didn’t like), and three from the past 8years, 1 that I am using and 2 back ups (you know in case one dies and the other is eaten by a hermit crab, or the company goes out of production!); 6x finger prickers (I think I have hoarding issues with these wee gadgets); 2x packets of lancets (surprisingly enough I am steadily working my way through these, as I change the lancet every two-three days); 3x boxes of pump cartridges; 5x boxes of pump infusion sites; 2x boxes of pen needles; 7x boxes of ketone strips; 1x container of ketone sticks (thats right, when I was younger if you got sick you had to pee on a stick to find out if you had ketones! As if being sick needed to be worse!); 5x boxes of testing strips (I have a serious fear of running out of these!); a heap of emla patches and cream (I had a huge fear of needles and it took every numbing agent and nice talking nurse out to get me to have a blood test and even then it ended in an anxiety attack, I have managed to overcome this paralysing fear in the past three years but for some reason I still hold onto these, whether it is to remind myself of how far I have come or in case I ever go back I am not sure); 4x manuals (I think I flicked through one once to find out what the reading E-3 was, seemingly it means my meter is too cold to function hehe); heaps of these little red ‘I have diabetes’ alert cards that my Mum is always trying to get me to carry with me; a container of insulin that has surpassed its used by date (I always feel so guilty when this happens 😦 and I never know how to dispose of it safely so it just gets kept); 80+ alcohol swabs for site changes; hyperfix (a medical tape for creating safety loops with my pump tubing…turns out I’m allergic to the stuff); another form of medical tape (same purpose but so far no reaction); 2x glucagel (for when I go really low and cannot eat jelly beans or drink coke); a bag of jelly beans; a packet of gingernuts (these are my post hypo carb); my blood kit (this contains enough of everything to keep me going for probably a week hehe, you kknow just in case we get invaded by zombies at school and I don’t get home for a while or something); and I have a fridge compartment full of insulin and glucagons.

Do I need it all? I mean really? It seems like a ludicrous amount of stuff to keep one person running, doesn’t it?

So I went through it all, sorted out expiry dates and removed things that I haven’t used in years or is not a backup/will be needed within the next three months (and still be in date when it is needed). I amanged to dispose of a box of used site inserters and three boxes of out of date ketone strips. Thats it! The rest I will use within the next three months or will need should something break, die, explode, be dropped etc etc.

It’s confronting, to me, a PWD (someone who has been a PWD for 18years), that this is what it takes to keep me standing, to keep me breathing. And all because my immune system decided to wage civil war on my pancreas, one tiny act and the life of life support needed after is this. I admit, I try not to look at it all very often, that is probably why it is stored in different places all over the house and why things run out of date without me realizing. I don’t like to see it all because it reminds me of what I have to do every day to stay alive, reminders that I can do without and often have wanted to hide away from the world. But this is it, this is my life and I will embrace it, run with it, collaborate with it, fight with it, live with it and love with it. It is not all that I am but it is a component. One thing I will change however is making sure I regularly check my expiry dates and throw out or giveaway what I am never going to use or what is expired hehe.

So there you have it, I’ve cleaned it out and done a bit of reorganizing as it went back in, but some of it is getting biffed and is staying out permanently 😛 Have a great day guys!

Hope