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!

I would like my immune system to start behaving properly now please...

I haven't posted on here in ages, mainly because life has been a bit hectic - buying a flat with Stuart at the moment, holidays, and to top it all off apparently my immune system is not content with trying to destroy my pancreas and my joints, and so it has now decided that my liver must die. As a result of which, I'm currently in the process of being diagnosed with autoimmune hepatitis. So I've been feeling quite pants.

It's been...interesting. It all started when I had my hypo seizure at the end on June, when they noticed that my liver enzymes were a bit elevated (apparently the proper medical term in "deranged" *grins*), so they asked me to follow it up with my GP, who ran some tests and couldn't find anything, and so referred me to the liver clinic at Addenbrooke's. At this point, I was feeling fine, so I wasn't too fussed, but then I started feeling ill, and turned a bit...well...yellow. And then I saw the doctor at the liver clinic who said that my liver enzymes were now really quite high, and suggested it might be autoimmune hepatitis. Basically, my immune system wants to kill my liver, for reasons best know to itself, which is resulting in liver inflammation and general dysfunction. It's taken a lot more tests, including a biopsy, to confirm, and even now I still haven't actually seen the AIH specialist to question him about everything, and that's not happening for another couple of weeks. The liver doctor I saw initially called me back in to get me started on medication, as he didn't see any point in hanging around while I was jaundiced and feeling like crap. Apprently the results suggest I have an unusual form of AIH, in that it's a kind normally seen in children but not usually in people my age, so they're a bit surprised.

My blood glucose levels went through the roof when I started feeling ill, as a result of which I ended up on about double the insulin I was on before. The diabetic clinic aren't hugely surprised (apparently liver inflammation will do that to you), and have generally recommended testing lots, using corrections and temp basals where necessary, and getting in touch if/when I feel like I need help. This is what I've been doing for the last couple of months, and my BGs in general haven't been too bad. However, I've just started on the treatment, which is corticosteroids, and I've been told that this is likely to be a long term thing, although hopefully on a decreasing dose.

My main concern is the effect it's going to have on my BGs. After 24 hours of being on them, I woke up with a BG of 17.8, which just refused to come down. I corrected, used temp basals, and kept an eye on my ketone levels, and managed to get things into a somewhat reasonable level by dinner time. It's been a lot of juggling trying to get things all to match up, and even now I still don't think things are quite sorted. I'm not sure whether there will be some kind of transition period while my body gets used to the steroids, and then my BGs will come back down, or whether they're going to stay up. Despite the fact that AIH is apparently more common in people with another autoimmune disease like type 1 diabetes, I can't find much information online about what to expect, which I'm finding slightly frustrating. I'm looking forward to my appointment with the AIH specialist so I can ask him everything. I might have to get in touch with my DSN before then though, as I'm currently using 90 units of insulin a day on basal alone, and I have no idea if that's going to go up... O.O

I have to say, though, I've been massively impressed with my GP and my diabetic clinic, who have been really on the ball and helpful, chasing things up, explaining what's going on and generally offering lots of support. I had a pump/annual review just after I saw the liver doctor the first time, and when I explained to my diabetic doctor what was going on, he spent ages going through everything with me, and was really quite lovely about the whole thing. I am very much YAY! NHS! at the moment! ;)

Good news everyone!

Things have been busy in my little world - Stuart proposed last week and I said yes! :) He got down on one knee with a slice of homemade mars bar crispie cake, how could I say no? ;) So there has been lots of phone calls, and excited conversations, and grown up things like picking a ring and spending lots of money on domestic stuff in John Lewis as an engagement present from Stu's parents.

I thought I might as well write a post about diabetes and how it's involved in our relationship. In most ways, diabetes isn't involved at all, but there are a couple of ways in which it's ever present. Stuart and I met online, and I completely randomly dropped the fact that I was diabetic into an msn conversation we were having before we're even met. Stuart, to his credit, barely twitched, as he has several friends who are diabetic. One of the things you should know about Stuart, though, is that he's a little bit needle phobic. And by "little bit" I mean talking about needles makes him feel queasy and actually seeing one makes him go very, very pale. So, as you can imagine, having a diabetic girlfriend isn't the easiest of things! I asked him right at the start if me being diabetic would be an issue, and he said no, it was part of me, and therefore we'd just find a way to deal with it. We quickly developed a system where I'd yell "hide" whenever I was about to do an injection, and he'd quickly find something else to occupy his attention.

We'd moved in together by the time I got my pump, and he was very supportive of me getting one, even though he admitted that the whole idea freaked him out. He doesn't complain about me getting up at weird times during the night when I'm basal testing, and he'll often ask if Chuck's been behaving himself.

For the most part Stuart takes a very hands off approach to my diabetes, which is how I like it. I get a bit territorial about my diabetes sometimes, because it's been *my* diabetes for longer than I can remember, and I don't really appreciate people interfering, however well meant it is. I think a lot of it stems from being a teenager with diabetes and always being told what to do (yes, I have issues :P), but Stuart is very good at being supportive without being overbearing. He'll ask if I'm ok if my BG is low or high, and I've noticed him telling me to go eat something when I'm on the low side but haven't quite registered yet. He never tells me to test or asks if I've had my insulin - he trusts that I'll do that myself. He weighs out things like pasta so I know the carb count of meals at home, and he never comments or judges when I decide I want that extra big piece of cake. He listens to me rant when my BG is misbehaving and makes soothing noises. He accepts my diabetes and me without ever judging, and I'm so happy that we're facing the next step in our lives together. :)

Horses or zebras?

I was out shopping yesterday afternoon, and when I got home I was gasping for a drink. Really, really gasping, so much so that I thought I should test my BG, as that kind of thirst usually indicates that I'm high.

So I test, and my meter beeps 5.4 at me.

Huh, I think, I could have sworn I was high, why else would I be so thirsty?

Yes, I had completely missed the obvious. The weather here has been a little bit on the tropical side. Wandering about all afternoon in 27 degree heat? Could that perhaps be the reason why I was thirsty??

I've been guilty of this before, and we had a discussion about how we've all done this during my DAFNE course. I've been diabetic so long, that if there's anything wrong I automatically assume it has something to do with the diabetes. If I feel sick, I first assume that I'm high and not that I might have a bug, or have eaten something that disagreed with me, or any other reason. If I'm thirsty, or tired, or feeling wobbly, I do the same thing.

I wonder if it's a preservation thing - if the problem is caused by diabetes then I want to get on top of it right away, whether it's by taking insulin or eating something. I'm very aware of how quickly things can go wrong and I've had it drummed into me since I was a small child that I shouldn't ignore things like hypo symptoms. In some ways, it's an easy answer as well. If I feel sick because my BG is high, then I can take some insulin and bring it down and feel better relatively quickly, whereas if it's a bug, there are no such guarantees. Either way, sometimes I really shouldn't ignore the obvious!