Friday, 20 May 2016

Diabetes Blog Week Day 5: Tips and Tricks

Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) 

For some reason I thought I'd written a post about this before, but apparently not! 

By nature, I can be a bit disorganised, lazy and forgetful. so most of my tips revolve around helping me be organised without really having to think about it and making life a bit easier! In no particular order they are:

  • I love these little bags of jelly beans for on-the-go hypo treatments. They're 10g carb each, they don't take up much space and they're individually packed so you can shove them in a bag/pocket whatever and they stay non-sticky and non-squished!
  • I'm also a fan of having hypo stashes all over the house - next to my bed, in the kitchen, next to the couch - with a variety of treatments (little cans of coke, glucotabs, jelly beans or babies) so that I don't have to go far and have a variety options depending on the hypo.
  • I also carry syringes with me rather than pens in case of pump issues - they take up considerably less space, I don't have to worry about insulin in the pen cartridge going off and it's more convenient.
  • I also have a diabetes emergency stash at work, with everything I might need/break/run out of - I have spare sets, cartridges, hypo treatment, batteries, meter, strips, plasters and opsite - since it's the place I spend most time apart from home. I'm working on having a similar thing in the car.
  • I like to have little "on-the-go" bags in my diabetes drawers (where all my stuff is kept) that I can just pick up and stick in whatever bag I'm using. They're just little food storage bags that have a couple of spare sets, some hypo treatments and a syringe. I also have larger ones that have a bit more that I can put in my bag for weekends away so I don't have to think too much about it.
  • For help with carb counting we have some of these blackboard stickers on our fridge. One has a small table on it permanently with columns for "food," "weight" and "carbs" and then space at the bottom for total and per portion. This means I can just weigh things and stick the info up and then work out the carb while things are cooking. I also keep a calculator next to the scales, and a list of commonly made meals with carb counts.
  • And finally, I have today randomly found out the Bayer contour test trip holders fit 5 fruit pastilles and fit easily into my pocket!

(Also, I swear, I'm not working for Amazon!)

Thursday, 19 May 2016

Diabetes Blog Week Day 4: The Healthcare Experience

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

So today's topic is on healthcare experiences. I wasn't really sure if I had anything to write about this, because I don't really know the answer to these questions, but to be honest, I think that *is* my frustration.

I'll be honest, I don't really feel that I get anything out of my normal clinic visits.  I get my HbA1c done, and sometimes other tests as well if it's an annual review. I get my feet tickled and my eyes checked, and things like that, and I know that these are important, which is why I go.

But I don't feel that I really get anything else.  I do my own reviews, and my own tweaks and experiments and changes, and I don't really feel I need any help with that - and I'm not expecting a HCP who's only looking at recent data to be able to give me any long term solutions as diabetes is, at it's heart, an ever-changing beast.  And the thing is, I don't *want* help with that - at the end of the day, it's my diabetes and I'm the one living with it. The one consultant I did see who was much more hands on drove me up the wall as he was very critical and would make huge changes based on a couple of days results, which very much tells me that I don't want that kind of relationship.

And 'm not saying I don't get *any* help - I've been through DAFNE training, I've moved onto a pump, and I'm using CGM (though self funding, because bringing up the possibility of funding got me a big fat no...) so they're there for the big things, and the medium things, like the checks.  But it's the little things that I feel I'm missing, and I don't even really know how.  I read about other people who have a great relationship with their diabetes team, and how they have these amazing appointments where they go in with a list of things and it's all very productive, and I'm just sitting there like "How?!" I don't feel like I can do that, because I generally don't have a list, and I feel like I just turn up, get test results, and have a quick chat and then go. 

I guess maybe I just feel that I'd like a better ongoing relationship, and I think a large part of that is that, at my clinic, it's a bit of a crapshoot who you see, so I usually see a different person every time and I get that it's not possible to make sure that you see the same person every time, but at the liver clinic I go to, which is ridiculously busy, I see one of two doctors, and so over the past five years there's a working relationship and trust that has built up.  I guess maybe it's just that I'm looking for, and maybe productive stuff would build out of that, but at the moment I'm not getting it.  I'm looking forward to reading other responses to this topic to see how other people feel about it!

Wednesday, 18 May 2016

Diabetes Blog Week 2016: Language and Diabetes

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

This is an interesting one for me, because I feel different ways about different words, so I'm going to take them into three batches:

The Good: Diabetic vs person with diabetes

This is something that I really don't care about, personally. I've been diabetic/had diabetes since I was four, I've grown up with it and it's part of me. I will refer to myself as a diabetic and I don't really feel anything negative or pejorative related to that. I don't feel that I'm being defined by it, it's just a descriptive term, in the same way that I'm short, Glaswegian, geeky or a scientist. To me, it's just another one of the many things I am.  I also lazy, and diabetic is just faster. ;)  However, I understand that not everyone feels this way, and it's something that people can feel quite strongly about, so I try to use PWD or person with diabetes whenever I'm referring to someone else and try my best o be respectful of others feeling on the matter.

The Bad: Checking vs testing

This is something that I feel relatively strongly about with regards to how *I* use the words, mainly because I think it does change how I see and react to blood glucose levels.  In the same way, I also try very hard to look at the numbers as data, and remove the words "good" or "bad" in relation to what I see on my meter - it's information that's helping me decide what to do next.  I spent a long time as a child and teenager getting beaten up emotionally by "bad" numbers on a machine, and I've said before how I think it led to a form of burnout or apathy towards my diabetes care, and I'm trying very hard to change that. Notice I said try ;) I'm better at it that I used to be, but it's still a hard mindset to get out of.

And the Ugly: Compliance

Now this, this is a word I feel strongly about, and I know I'm not the only one. I hate this word, I think it's a bullshit word used by lazy HCPs to dismiss patients who are either not meeting the targets set or not doing things the way the HCP thinks they should.  I think it's very easy to just label a patient as "non-compliant" without really going any further or asking the questions that should be asked - mainly why is the patient not meeting targets? Is there something else going on? Are the targets something set by the HCP in discussion with the patient?  (and if not, why not?) Does the patient need extra help or education? And a million other things that should be asked.  I went to so  many clinics as a teenager to be told "your HbA1c is too high, get it lower!) and made to feel like a failure, without anyone ever, ever suggesting anything to help.  Additionally, just because a patient is doing things differently doesn't mean it's wrong - maybe you could learn something from them! I've learned a lot from the DOC in terms of different ways of dealing with situations like exercise, spikes after meals etc, and I'm not afraid to try new things - if they fail, fair enough, tweak and try again, ore try something else - but I've heard of people who get labelled as "non-compliant"  because they don't just follow the textbook that their doctor is using.   It's a horrible, judgemental word, and I hope it gets drummed out of use.

Tuesday, 17 May 2016

Diabetes Blog week 2016 Day 2: 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!)

I was going to talk about burnout for this, since it's something I'm struggling with a little at the moment, but then I realised I don't really know what to say, and I think lots of people have posted about this, so I thought I'd talk about something a little different, and since the topic is the other half of diabetes, I thought I'd talk about *my* other half and his relationship with me and my diabetes.

So, my husband has a fairly severe phobia of needles, which he's had for a long time. And I'm not talking about the "oh I don't really like needles" (I mean, who does?) type of thing, but the passes out when having vaccinations, gets really queasy even thinking about them kind of phobia. So you can imagine that it's not easy then having to face that phobia on a daily basis.

He has a couple of other friends with diabetes, who had just moved away shortly before he met me. Now, we met online, and there was nothing in my profile about being diabetic, and it never really came up, until one day we were chatting online (before we'd actually met) and I mentioned something about blood sugars.  At which point, I realised I hadn't actually said anything about being diabetic at roughly the same time that he came to the realisation that I was.  And then he tells me about the needle phobia thing, and I wondered if that was going to be the end of things there and then. But we talked about it and he said that he had ways of dealing with it that he'd worked out with his friends, that mainly involved warning him any time I was going to be doing anything with a needle.

We've been together for seven years now, and there have been many diabetes related things for us to deal with. I was on MDI when we started dating, but have since moved onto a pump. I've started using CGM, and I had two seizures due to low blood sugar (one of which happened in our flat). I've had laser for retinopathy (that was fun. Not.) He's considerably less freaked out by my needles now, and he's had to learn all the "wonderful" aspects of living iwth diabetes that you just don't really *get* unless you're doing it, and it's been a learning process for both of us - I've posted before about how I'm usually quite private about my day to day diabetes care, and it's taken a while to be able to share that with him. He's learning when to offer help and when to just offer sympathy, when to let me vent and when to step in on my behalf. He knows where all the hypo stashes are, and how frustrating some diabetes professionals can be.  He's been to a diabetes conference, and is going to another one in June. I think it's opened his eyes to a whole other "normal", and he's I've learned that I don't have to do this alone. I can't imagine it's easy watching a loved one dealing with the ups and downs of diabetes, particularly those times when there's nothing you can do, and I'm always grateful that he's willing to go through this journey with me, both of us learning as we go.

Monday, 16 May 2016

Diabetes Blog Week 2016 Day 1: 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? 

I don't think I have a particular message or theme that I try to get across in my blog, other than "you are not alone", which I think is common across a lot of diabetes blogs.  I've been part of the DOC for a long time now, starting on forums and gradually moving over to Twitter and Facebook, and blogs happened somewhere along the way.

For me, blogs continued the whole "wow, you too?!" thing that had begun in forums, and I loved being able to read about someone's story, particularly if we were going through similar things.  When I started, there really weren't that many blogs around, and most of the ones that were around were from the US. I thought that maybe I could offer a slightly different perspective coming from the UK, and I've been blogging on and off in one way or another ever since.

I keep coming back to the idea that I'm blogging to send a message, and I guess in some ways I must feel I have something to share, otherwise it would be a private blog, but I don't feel that I blog because I want to stand up and shout about something that's particularly important, it's more like I'm sat in a quiet corner in a bar telling stories about my experience. Hopefully some of those experiences will strike a chord with some people, and they may find something that helps them, even if it's just that other people have crappy days, and horrible clinic appointments, and also take joy in small things that no-one else gets if they don't live with diabetes.  I think I probably blog partly for myself, because there's something therapeutic about writing things down, and partly in the hope that I can maybe help someone else.

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... ;)