Variety is the spice of life? Not if you're diabetic...

I've had a week of absolutely shocking BGs. I had a bit of a cold, but no worse than others I've had, and colds don't normally affect me too much. This time, however, I was seeing the high teens at least once a day, even with constant testing and correcting and temp basals. I was starting to get really worried and considering getting in touch with my DSN, or possibly my liver doctor (since the last time my numbers went nuts like this it was a sign that my liver was under attack), when I woke up on Friday with a BG in range, and they stayed like that all day, without need for temp basals or anything.

It got me thinking. I've said before that one of the things that I find most frustrating about living with diabetes is the apparent randomness that creeps in and affects your numbers.

There are so many variables to consider when we see a BG that is higher or lower than we'd expect. Is it a one off, or is it a run of them? If it's a one-off, you start trying to work out why - did you mess up the carb count of a meal? Did you forget to bolus? Have you been doing exercise/sitting doing nothing? Has something happened to stress you out? Is it a bad set? Have you somehow managed to kill you insulin? Is there a bubble in the tubing? What about insulin absorption or the kind of food you had? If it's a series of highs/lows, then a whole other set of considerations come into play - are you getting sick? Is it hormones? Is it a change in the weather? Have you changed weight? What about activity levels? Is there a pattern or is it just random? Basal or bolus? And a myriad of other possibilities.

Then, if you spot a pattern emerging, you have to deal with it. Sometimes it's straightforward - you're rising every day after lunch, you know your basal is right at that time, so you increase your insulin at lunch and that sorts it out. But then there's the other tricky little buggers. The ones where you've notice that it happens when you eat pizza, or do a particular type of exercise, or have a stressful time at work or some such.

So you have to try and sort it out, and the way to do that (like in so much of diabetes) is through trial and error. You can talk to other diabetics to see what they do, you can try altering an insulin dose or use a temp basal, alter carbs, or the timing of bolus. There are so many options, and even within those there are yet more variables - you decide to try a temp basal but how much? and for how long? You try things, test to see how they're working, and then you tweak, or you try something else. It's the only way to really do it, but the cost of making a mistake can be so huge - you end up low or high, and maybe it's only a little bit and quickly sorted out, but then there's the time it goes really wring, and you end up with a low that just won't come up, or you end of with ketones, or something else goes wring and you end up sitting there feeling like crap and wondering why you even bother.

Someone once told me that trying to manage diabetes is like trying to do a jigsaw puzzle when the pieces keep changing, and it just struck me as so true. What fits one day might not necessarily fit another, and we have to do this every single day. Things that other people take for granted we have to think so much about. Going for a wander around town, going to the cinema, having a drink with friends, having a busy day at work, eating, exercising, and a million other things. We do this every day, trying to cover for a part of our body that's gone on strike, that should do this automatically, responding to changes in our body and tiny little signals and information in increments that we can't possibly hope to achieve.

And yet we do it. We soldier on, we do our best, and we go on with our lives and refuse to let this condition defeat us, and (most of the time ;)) we do it without complaining or asking for any kind of recognition, or turning into babbling wrecks rocking in a corner.

And you know what? I think that makes us pretty damn amazing.

Post-holiday ponderings

Stuart and I were on holiday last week. We spent a lovely week in Paris and then London exploring, eating, wandering around and generally just chilling out. I have to say, Chuck made the whole experience much easier than it has been in the past - temp basals are definitely one of my favourite things about the pump!

I've learned a couple of interesting things over the last week or so. The first is that my afternoon basal rates are very much determined by when I take my steroids in the morning. The first day in Paris I slept a little later than usual, and combined with the time change, I ended up taking my steroids about two hours late. As a result of which I ended up running low in the afternoon (although testing and free-carbing managed to prevent hypos), and ended up spiking to 16.7 by dinner time. I'd suspecting this before, on the occasional days when I'd taken my steroids later, but this seems to confirm it. I made sure I took my steroids at the normal time afterwards, and that solved it.

The other thing I learned is how much I rely on my logs for managing my diabetes. I keep my logs using an excel spread sheet, which I keep on a USB drive and I usually just have it open on whatever computer I'm using at the time and add to it throughout the day. Since I don't really keep a paper log, I didn't have access to this while we were away. I'm quite happy to do the daily stuff as I go along, but I really do find it useful to have a glance over my logs to see if any trends are appearing, what I did last time I had a particular food, or what temp basals I used etc. It also helps me to spot when my numbers are starting to rise, because there have been times when I've been pootling along, thinking I'm doing ok, and then when I plug my numbers in I realise my average has been creeping up and is much higher than I thought it was, and logging my BGs regularly helps me to catch that early.

Plus, I like graphs. ;) And, well, colour coding things and seeing my averages and percentages in range and all those other geeky things that I've manage to convince excel to do...

I also have a tendency to put lots of little notes in the comments column of my logs, and I have my own abbreviations for things like extended boluses, so I'm never sure how much sense they end up making to other people (especially when my notes end up being small explosions of rage or confusion over a result...), but I figure that I keep these logs for *me*, and the most important thing in that respect is that I have a system when I can have all the information I need, in a way that I can interpret. After all, I'm the one who has to make the day-to-day decisions based on these results.

I still tidy them up if I have to send them to a DSN or take them along to clinic though ;)

Doctor Pillock and the Wonderful DSN

I had a pump review at the diabetic clinic on Monday. It went...not well. I apologise for the novel length of this post, but I want to get this out of my head.

I didn't see the doctor I normally see, which frustrated me a bit since Dr E knows all about my liver problems/steroids etc, and I find him really easy to talk to. But I've seen a couple of other doctors in the clinic and I've always got on well with them, so I figured it would be ok, I'd just have to do a bit of explaining.

Boy was I wrong.

So, to backtrack a little, one of the reasons I've been a bit worried about this appointment is that I had another seizure about a month ago. No idea what brought it on, I was ok, then realised I was hypo, checked my BG at 2.6, ate at least 40g fast acting carbs (20g first, then more when I wasn't coming up) and was actually *drinking a glass of juice* when I went down. No exercise, it wasn't hot, I hadn't been doing anything out of the ordinary, my BGs had been fine all day. I just dropped and couldn't get my BG up fast enough. Poor Stuart was the one who had to deal with it, and he was amazing - he heard a crash (I broke the kitchen table when I fell), saw me seizing, made sure I couldn't hurt myself, and called 999. A&E couldn't find anything wrong, so they sent me home (after 6 hours...). My theory is that it's something to do with my liver/steroids/insulin resistance changing as the damage to my liver decreases, but I can't know for sure.

Now, I was nervous when I know I was going to see Dr E, because having to explain that I'd had another seizure wasn't something I was looking forward to, but he's been really understanding about the last time and we had a long discussion about the seizure and my liver problems. Now that I was suddenly seeing Dr K, I wasn't sure how things were going to go. So when he asked how I was, I started to tell him about the seizure, which in hindsight may have been a mistake, because he immediately started interrogating me, and immediately put me on the defensive.

He asked me if I turned my pump off if I test and my BG is low. I said no, and he just looked at me. I explained that I'd never been told to do that, as it wouldn't have any effect for a while, and certainly not fast enough to treat a hypo. He looked at my basal rates and kept asking me questions and I felt like I was on the back foot the whole time, like I'd done something really wrong. He asked me three times if I'd spoken to any of the pump educators. Twice who changed my basal rates, and how I'd decided I needed to be on the rates I was on. Despite me saying several times that I'd been doing basal tests, he still asked me if I was doing 'carb-free' testing. He was particularly interested in my afternoon rates (when I have the peak of insulin resistance from the steroids), and when he asked when I'd last done a basal test, I said that I hadn't done the afternoon one in a couple of weeks, but that I'd done a morning one at the weekend, and an overnight one the previous week. And he wrote down 'no carb-free testing' on my sheet...

Yeah, by that point I was pretty pissed.

I feel that he looked at the numbers and that's all he saw. He didn't seem interested in listening to anything I had to say. In the first week that he looked at, I'd had six hypos. However, four of these were in the same day, and you know how you get days where sometime you just run low? Two of them were a hypo that wouldn't come up on that same day, so it was a hypo, treated, followed by a test 15 min later that was still hypo. Of the six tests, four of them were 3.8 or 3.9. I'll admit that I'm hypoing more than I'd like, but I'm testing and changing things, I'm using temp basals, I'm being careful not to overtreat hypos so I don't spike afterwards. This is the first time in six months I've been on the same dose of liver medication for more than a couple of weeks, and I know that has messed with my numbers.

He insisted that I speak to one of the pump DSNs before I left (I'd been in the clinic for two hours by this point, and it was after 5 pm), and I was so unsure of what the hell I was doing that I just agreed. I sat waiting for the DSN, and I was so angry I was close to tears. It's been a while since I've cried as a result of a diabetic appointment, and I was adamant I wasn't going to start now, but I really didn't know how I was going to cope with more chastising. Sarah, the DSN, came to get me and, well, she was lovely. We actually sat down and had a proper chat about everything, she actually *asked* what had happened when I had the seizure, and she looked at my logs and pointed out a few things that I could check or change, but said that overall I was doing exactly what they would suggest, and that she could see from my logs I was having less hypos than I was a few weeks ago. It was like a weight of my shoulders to hear that I hadn't been completely screwing up the entire time. She gave me her contact details and said that I could get in touch any time, even if it was just to have a chat about things, and really made me feel that, yeah, I was having a few more hypos than they would like, but she could see what I had been doing to improve things and she was happy with that. She saved that whole experience for me, and actually turned it into something productive.

It took me a couple of days to realise why I was so bothered about this. I have...issues...about guilt and diabetes, mainly stemming from appointments like this when I was younger. I went to lots of appointments where all I heard was that my HbA1c was too high, and that my control wasn't good enough and I wasn't trying hard enough, and being asked the same questions repeatedly because they didn't believe my answer. I went through my teenage years thinking that I couldn't do anything right because no-one told me that hormones mess with your blood sugars. I went through a fairly extended period of burnout because I couldn't see the point of testing - it was always high, and I couldn't do anything about it anyway, so why bother? (I am not condoning this by the way, it's just how I felt at the time).

I still have a small voice in the back of my head that occasionally pipes up and tells me that I'm "cheating" whenever I have a piece of cake, or a packet of crisps at something other than a designated snack time, or a piece of chocolate. It's taken me a long time to get to this stage, where I can mostly ignore it because I know that it's not always my fault when things go wrong, that I am trying. I'm not perfect, I'm the first to admit that, but I've put a lot of work into my diabetes management. I read, I talk to other diabetics, I (normally) have a good relationship with my doctor/DSN and will email and ask questions. I'm also quite independent with it - I won't contact the pump educators unless I have a problem I can't solve on my own. And my clinic is very much behind this approach of being responsible for your own care. They are always there if I need them, but they encourage us to be able to test, look at the results, spot patterns, make adjustments etc as we see fit. It's the whole point of things like DAFNE for crying out loud! And this doctor made me feel like I was a fool for doing this, that there was no way I could possibly be testing and making these decisions on my own, without the approval of someone from the clinic and this infuriated and upset me. (I was so close to pulling the "I have a PhD in biochemistry, I am not a fecking idiot", but I thought that might have been inappropriate). I think part of the reason I was so upset is that I have never been made to feel that way before in this clinic. I've seen three different doctors and several DSNs over four years, and they've never made me feel as small and incompetent as this doctor did in 15 minutes. He made me feel like it was all my fault.

I've been debating whether or not to actually post about this, but it's been eating at me for a few days now, and I think writing about it might help me to get it out of my system. I don't want to seem like I'm just throwing a tantrum, because I do feel a little bit like a child that's been told to sit in the corner and not touch anything, and I'm aware that my reaction might be to that feeling. I don't want to be one of those people who takes any kind of criticism by throwing a fit. The thing is, I don't think I am. I can deal with criticism, as long as it's constructive and I can see why it's happening. I can deal with a doctor saying that I've made a mistake, I can admit that. But there's something about the way this doctor treated me that just rubbed me the wrong way. Maybe if I felt he didn't just have a knee-jerk reaction to the word "seizure" and the fact that I'm on quite a lot of insulin because of the steroids. Maybe if I'd had an actual conversation or discussion with him instead of feeling like I was being interrogated and then talked at. All I know is that I've never walked out of an appointment in that clinic feeling like I did on Monday, and that included the first one where my HbA1c was too high, and I was still struggling on Mixtard. If it hadn't been for Sarah, I'm not sure what I would have done. He knocked all confidence in any ability to manage my own diabetes, and she gave it back (mostly, I'm still a bit...wary).

You'd think after 22 years of being diabetic I'd avoid the rookie mistakes, but no...

I decided to treat myself to some chocolate after lunch and completely forgot to bolus for it, which lead to a lovely 15.1 at break time, and me making confused faces until I realised what I'd done (thank goodness for the bolus history on the pump!).

I managed to end up back down to a more reasonable 6.9 within three hours though, which I was rather pleased with! :D

Positive attitude

I've had a few people say how much they admire my attitude in dealing with diabetes and AIH, and while I don't really feel that I'm doing anything special, I do try to be positive and just get on with it. Mainly because I think if I let myself get depressed and pessimistic and "woe is me" about things, I don't think I'd be able to deal with anything, and I refuse to let diabetes/AIH rule my life that way.

However, that doesn't mean that I don't have days where I get pissed off, where I wish it would all just go away, or at the very least behave itself, and I think that's ok as well, it's all part of the dealing process. I love xkcd in general, and when I saw this comic today, it really resonated with me, because it's so true.

In a completely random note I've just discovered that I actually have comments on some of my other entries! I do apologise for not responding, I wasn't being rude, I'd just figured that Blogger would send me email notifications if I received comments and apparently it doesn't...

Help! I've fallen over and I can't get up!

I have this weird territorial-ness about my diabetes. I've always seen it as *my* disease, since I'm the one who has to manage it, and who has to deal with the hypos, and the highs, and the decisions, and the consequences etc, etc... I'm always looking to expand my knowledge about diabetes and ways of living with it and I love chatting to other people and swap tips and advice and I get on great with my diabetes team, and I *love* being part of the DOC.

But there's a big part of me that hates asking for help. I'm not sure why, because one thing I think we're all aware of is that diabetes is not an easy thing to live with, and sometimes we all need a little help. I think it's something I grew up with - that attitude of just getting on with it, and in a lot of ways I think it's helped, because I refuse to let this disease get me down or prevent me from doing the things I want to do. However, I think I've also inherited this sense of not wanting to ask for help along with it. The whole idea of being able to manage on your own seems to have developed in my head into meaning that if you need to ask for help then somehow you've done something wrong or failed in some way and it's your fault. And I *know* that's wrong, and one one of the biggest challenges I've had to face in with diabetes is overcoming that attitude.

Because the thing about diabetes is that sometimes it forces you to ask for help. Like on Friday when I was in the supermarket (Tesco's this time...) and my BG dropped through the floor with very little warning (stupid steroids). I shoved 20g of jelly beans down my throat, and then realised it wasn't doing anything. I decided I needed I needed juice, got confused, and about the time my vision started going and I was having zone outs, realised the I needed to ask for help. Luckily I was with my fiancé, and as soon as I found him and said "my blood sugar is really low I need juice" he very calmly but firmly took control on the situation. He led me over to the juice, got some, paid for it and then made me drink it while he scanned the rest of the shopping and kept an eye on me. He was awesome, especially considering that was the first time he'd had to deal with me like that.

I felt...odd...for most of the night, and it took me a while to realise that the oddness was that I didn't feel embarrassed. I needed help, and I asked for it, and I didn't feel that Stuart thought any less of me for it or judged me. And you know what? That felt pretty damn good.

Steroids and insulin resistance

I've been on steroids for my rebellious immune system for about two months now, and, ignoring the effects they've had on my BG, I feel so much better! I don't think I really believed a couple of pills could make such a difference, but I actually feel pretty much back to normal now, and there was a time a couple of months ago when I wasn't sure if that would ever happen. I've been seeing my liver doctor every couple of weeks for monitoring, and it's been amazing to watch my liver function tests improve. They're still not completely back to normal, but they're a hell of a lot closer than they were. He's dropped my steroid dose, and has introduced azathioprine, which is another immune suppressant that should allow me to bring the steroid dose right down, possibly all the way to zero, and then I'll most likely end up on a kind of 'maintenance' dose.

The reason I wanted to make this post was mainly to talk about the effect that the steroids have had on my BG/insulin resistance. When I was diagnosed with AIH and started on the steroids, I found it quite difficult to find any information on the effect it would have on my diabetes control other than 'it'll probably make your BGs go up" which, while useful, is a bit limited. There seems to be lots of information on people who have been diagnosed with type 2 as a result of long term steroids, but nothing on type 1, or really anything on what to expect in people who are already diabetic. The kind of information I was looking for was things like how much of an increase are we talking? Is it something that changes as my body gets used to the steroids? Is it an overall increase in BG? I wasn't really looking for a medical opinion, just some stories from people who had experience of this that might reassure me that what I was seeing wasn't unusual.

So I thought I would do a post about my experiences, just in case it helps anyone else out there. :) The first and most obvious thing is, yes, my BGs did go up. And I mean UP. I was hitting the high teens/low twenties pretty much from the first couple of days, and they were resistant little blighters. I made a lot of use of temp basals, and then figured out where I needed the increase in insulin. This seemed to happen twice - I had an initial jump the first few days after I started on the steroids, and I increased my basals and things settled down, then I had a second jump about ten days after I started. I'm not sure how normal this is, and I was really wary about increasing my insulin, but I went with it and managed to get things settled back down again. I've also had 'dips', where my insulin resistance takes a drop and my insulin requirements and BGs go down, and I think that might be to do with the steroids actually working and my liver getting better, so taking some stress off of my system.

This is where my basal rates have ended up after all of that. The blue line is what they were before this whole thing started, and the green line is what I'm on now. Yes, that really is 12 units an hour at one point...! The highest I needed was 14 units/hr at that time. I've noticed an overall increase in insulin needs, but the main increase is the huge spike in the afternoon. I take my steroids in the morning, so I suspect the afternoon peak is the steroids kicking in (I'm finding the whole thing quite interesting from a scientific point of view!). I've also had to increase my insulin to carb ratio over that period, as I seem to be quite sensitive to carbs at that time, so my insulin:carb went from 1u:8c to 1u:5c, and in addition my evening ratio went from 1u:9c to 1u:7c.

I have to say, the pump has been indispensable during this - I can't imagine trying to deal with this on lantus! Being able to use temps basals, and respond to things quickly has really been instrumental in helping me to keep my BGs in a reasonable state. Don't get me wrong, they're not perfect, and it's been a lot of work and I still tweak and get things wrong, but I really feel that the control I've been able to maintain would not have been possible for me on MDI.

And now that I feel my basal rates are sorted, my dose of steroids has just been reduced, which will screw everything up again. *rolls eyes* Oh well!