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).