Thursday, 15 May 2014

Diabetes Blog Week Day 3: What Brings Me Down

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

Diabetes sucks.  We all know that, and I think most of us just sort of deal with it and keep going, because, well, there's not really much we can do about it.  We come up with ways to make it suck less, and that's for tomorrow's post, but there's also things that make it suck more, and I'm going to write about one of those today.

One of the things that brings me down is unhelpful doctors/nurses and other health care professionals.  I'm not talking about regular HCPs, the people who don't really have anything to do with diabetes.  While it is frustrating as hell when they ask stupid questions and downright terrifying at times if these people are responsible for your care, those aren't the ones I'm thinking about are the ones who are actually meant to be helping us - our DSNs and endocrinologists.

I've swapped endos recently, due to various factors and the way my clinic works.  The first time I met with my new one he seemed lovely - very enthusiastic and keen to help.  The two appointments I've had since? Not so much - in fact I cried after both of them, and I haven't done that in a while. 

I'm not really sure I can pinpoint exactly what was so horrible about the appointments, but in both of them I felt so utterly incompetent as a diabetic.  The first was rushed - he was running about two hours late, and was clearly trying to catch up, and I had a very hurried appointment which pretty much consisted of him telling me off, both for not contacting the DSNs for help (which I didn't feel I needed) and for not making changes as quickly as he thought I should.  The second was a longer version of the first, even though I pointed out that I had tried to contact the DSNs on several occasions and received no response, and a thorough going over of the previous two days of CGM data and wanting to make several changes based on that - oh and a criticism for being 7.3 (131)  an hour after a meal...

Oh, and my HbA1c? Is 6%

I walked out of those appointments, and like I said, I cried.  I just sat there and thought "what's the point?"  If I get criticised and told that I'm not doing well enough even though I work my arse off to get those results, then why bother?  I might as well just give up and not worry and get told off just the same.  If I get treated the same way with an Hb1c of 6 and one of 10%, then why the hell should I care? (Don't worry, I'm not giving up, I'm just explaining how I felt).  I sat there and I felt all those familiar thoughts come back that I had when I was a teenager and I just...gave up.  If it wasn't for the fact that I'm a bit older and wiser now, and a bit more stubborn in terms of not letting that bastard get me down, I could see appointments like those sending me on a fast track to burn out. 

Because if the people who are supposed to be helping and supporting you through the sucky condition just grind you down, then what chance do we have?  It wasn't even so much what he said, I didn't mind him suggesting changes, it was the way he did it.  The whole attitude that I was clearly doing things wrong, and every number out of range was explicitly my fault.  Who does that kind attitude help? 

Luckily, I have other support systems in place (which is tomorrow's post), but I worry about the people who don't, the ones who go into that office and come out feeling like I did and actually do give up.  Because it's hard to live with this disease and deal with all the crap that comes with it without fighting against the people who are meant to help as well.  It's just one of several things that brings me down about diabetes, but the thing that gets me the most is that it shouldn't be - your diabetes team should be one of the things that tries to make diabetes suck less, not more.

Tuesday, 13 May 2014

Diabetes blog week day 2: dream diabetes device

Today's topic is meant to be writing a poem, but I really suck at that, so I'm going to go for one of the wildcards.

I was initially going to do the short story (I'm sure Garrus* my pump has more than a few tales to tell...) but I decided to go for the dream diabetes device one instead, since I've had these thoughts knocking about in my head for a little while.

The prompt is this:

This continues to be one of the most popular DBlogWeek topics, so let’s have another crack at it! Tell us what your fantasy diabetes device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, or anything else you can think of. The sky is the limit – what would you love to see? 

I wrote about this before a couple of years ago, when I said that I wanted a magic carb counting device (which I still totally want).  This time I'm dreaming of something different. You know what I want? I want some kickass software to connect all of my diabetes paraphernalia.
I want an app on my phone that will talk to my pump, to my cgm, to my glucose meter. One that I can easily add notes to, and search on the go.  I want to be able to pull up when I last had pizza, see what my blood sugar was before, how I bolused, and what the cgm trace looked like afterwards to help me decide what to do this time. I want to be able to look at the data on a computer,  and combine ir however I want to spot trends, and send it to my clinic. I want to be able to pull out my phone and check my cgm, or bolus without needing to pull out my pump.

That's what I want. I know there are apps and programs out there that do parts of this,  but I've never found anything that does everything I want (and I'm a demanding little bugger). 

So that's my dream diabetes device. What's yours?

* My pump is called Garrus for very geeky reasons relating to the fact that he's blue and calibrates my CGM... ;)

Monday, 12 May 2014

Diabetes Blog Week Day 1: Change the World

Today's prompt: Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.

I've been pondering this topic for a few days, because there are plenty of diabetes-related issues that I am pretty passionate about, and have ranted extensively about - a small sampling includes, but is not limited to: diabetes myths (no, I didn't have too much sugar as a child, yes I can eat that...); pump access (while I don't believe everyone will get on with a pump, I believe everyone should be given the option); CGM access (ditto); and the word "compliance" (grrrrr...)I don't really formally advocate for anything, but I was trying to think of something that I, personally, feel is important, and what it came down to is this:


I think that education is one of the most important things that a person with diabetes needs in order to best manage it  - we have a condition that requires daily decision making in order to prevent it from kicking us in the ass (and despite our best efforts sometimes it does that anyway!)  How can you make the best decisions if you're not informed?  I really feel that everyone who has diabetes, or cares for someone with diabetes should have access to an education course at diagnosis, and that information should be updated as necessary.

I think that everyone should be taught carb counting, and how to adjust their insulin if necessary.  I think that everyone should be taught how different factors can affect your blood glucose levels - alcohol, exercise, hormones, stress etc.  How these can make your blood sugars go up or down, and how to help manage the changes.  What to do if you're sick, or if you're hypo. 

I appreciate that when you're newly diagnosed this is a huge amount of information to take in, and I'm not suggesting that a newly diagnosed person gets handed a huge folder with all of this (!) but I do think people should be made aware that education is available, and encouraged to ask questions and find out more.  And I think education is just as important when you've been diagnosed for 10 years, 20 years, 50 years.  Information changes, medication changes, better ways become apparent, and newer technology makes life more manageable. 

One of the reasons that I feels so strongly about it is that I was that uneducated person for a long time. I was diagnosed in 1988.  I was put onto Mixtard, taught to carb count, how to test my blood sugar and inject, and that for exercise I should have some glucose tabs before it.  And for almost 20 years, that was it.  The information was never updated, no-one ever told me about things like MDI or how things like hormones might affect my BGs.  Instead, I went on doing the same things, even when those things were clearly no longer working, because I wasn't aware there might be other ways of doing things - I'd assumed (silly me!) that if there were new things that I should know, that my doctors would tell me.  I went to clinic, got told off for HbA1cs that were too high, and sent away again.  Rinse and repeat for long enough and you hit burnout and stop caring (or at least I did anyway).

Fast forward to 2006, I moved to Cambridge, learned about MDI, and found the DOC.  The DOC was a revelation for me, in many ways, but especially for opening my eyes to new information and better ways of doing things.  The idea that I could adjust my insulin, ways of dealing with exercise, insulin pumps, and so much more!  This was all new to me, and it sparked a fire to become so much more proactive about my diabetes management, with obvious results in my blood glucose levels and HbA1cs.  It taught me to question my doctors, to research for myself, and to learn enough about my diabetes that I could manage it (mostly!) successfully by myself.  I try and help, and pay some of that back, by sharing that knowledge wherever I can, but it never feels like enough.

I see people on twitter and facebook, in forums and mailing lists, and in RL as well, who have such little knowledge about their diabetes that I find it terrifying.  I don't blame them - I was much the same in some ways - but when you find someone who's on a pump who has never been told about ketones, or someone who has never been told the importance of matching carbs and insulin, or even that you have to worry about more than just how much sugar is in something, it's scary. I worry for them, and I despair at the thought that there are HCPs out there who think that it's perfectly acceptable to let someone go with such a potentially dangerous thing as insulin with no education - or who blame the diabetic for out of range results without helping to understand ways of improving things.  There's no excuse for that in my book, and it's one of the reasons that I think the DOC is so fantastic - because it helps to provide that education, even when the professionals who should be doing it are failing so miserably.