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!

Basal tests are not my friend

I suspect that my basals and perhaps even my ratios may need tweaking, which means that most dreaded of things: basal tests.

I have a bit of a love/hate relationship with basal testing. As a science geek, I like gathering data and making pretty graphs and figuring out what's going on. I also like that being on a pump gives me the fine control to adjust my insulin where needed.

However, I hate the restrictions of a basal test. I hate the fasting, because I'm the kind of person who tends to graze throughout the day, and if I'm basal testing I can't do that and I get really hungry. I also hate that I can only really basal test if certain conditions are right - I should be in range at the beginning, I shouldn't have eaten or taken insulin within a certain time period, I shouldn't do it when I've just changed a set, if I'm more stressed or doing more exercise than usual. These are the things that particularly frustrate me, because sure as hell I'll decide to do a basal test and I'll randomly wake up with a BG of 14, or I'll ending up running about like a blue-arsed fly at work, or something will happen.

I have decided this has to happen though. I have to just knuckle down and do the tests, and then when I'm happy with my basals I can try and figure out if the reason I spiked so high after the last three meals is because my ratios need changing, or rice is just being a pain in the backside. I suspect a bit of both!

Ups and downs

My little diabetic world has been a bit topsy turvy recently, and it's left me feeling a bit out of sorts.

I think I was a bit more shaken by the seizure last week than I originally realised, because I have completely panicked and overtreated two lows since then. And then yesterday I ran high all bloody day, and had site issues (my first gusher, and another site I wasn't convinced was working). I worried all day about trying to get my BG down, wondering if the same thing was happening with absorption as I suspect happened before my seizure, and being very cautious about trying to bring it down, but being incredibly frustrated with the whole thing. I think I would have been less concerned if I hadn't had the seizure last week, and, while I know I have to take what I can from the experience, it's bothering me that it's having this much effect on how I'm managing things.

In addition, I'm still a little bit worried about my liver and I'm feeling like crap because I stopped taking tablets for my hayfever. The doctor had given me the names of some other things I could take for the hayfever, but they're nasal sprays and I really don't like them, so I figured I'd just deal with it. Except it's kicking in properly now, and I felt like pants all day yesterday so I caved and picked up some Beconase today. I also have a bit of sunburn from the weekend, so all in all there's about a million things that could be affecting my BG right now and I don't like it. *scowls*

However, it's not all bad. The reason I have sunburn is because I went to the DS meet up in Brighton on Saturday, and had a fantastic time. It's so nice to meet up with people old and new, and there's something about talking about diabetes (among many other things) with a bunch of diabetics that is just amazing. No-one else really *gets* it the same way, and I had a great time on Saturday chatting away, and also sitting on the beach, wandering along the pier, and eating ice cream in the sun. :)

Well, that was new

So. I had a bit of a scare of Wednesday night, in which my blood sugar dropped so low I passed out and had a seizure in the middle of Sainsburys. I'm still not entirely sure what caused it. I'd been running high all day, and correcting on the advice of my pump, and then I'd gone shopping. I was 11 mmol/l when I left work at around 6:30, and I called Stuart at about 7:30 to say that I was nipping into Sainsburys before heading home. Fifteen minutes later and I knew something was wrong, so I checked my BG and got 2.9. I had four glucotabs and waited for them to kick in. Soon after that I realised things were getting worse instead of better, and my vision was starting to do weird things. I had eight more glucotabs, and I could feel myself getting woozy. The last thing I remember thinking is that I needed to get help, and then the next thing I know I'm being woken up by a paramedic, who told me that I'd passed out and I'd had a seizure.

They didn't give me glucagon, because when they checked my BG it was 5.6. They packed me off to A&E, where I spent the rest of the evening getting poked and prodded and tested before they let me go home. Two of my liver enzymes are elevated, but that's unrelated to what happened, just something they want me to follow up with my GP. Poor Stuart had no idea what had happened until I managed to get in touch with him at about 10:30, when he then had to come all the way out to Addenbrooke's to look after me. He also took yesterday off work (as did I) to make sure I was ok.

I spent yesterday going to see my GP and just generally feeling completely wiped out. My BG kept dropping, so I was deliberately running it high, and oh god, my muscles are still in pain! I also bit my tongue quite badly, so I'm now talking with a kind of lisp and it's bugging me when I try to eat. I'm adamant it's not going to stop me going to Brighton tomorrow to meet up with my fellow diabetics!

I'm still not sure exactly what happened. In 22 years of diabetes, I have passed out once, and that was when I was eight and being stupid, and I've never had a seizure. I think it was an unfortunate combination of the heat, the exercise, and something weird going on with my insulin absorption, so maybe some of it was pooling and then all kicked in at once. Otherwise where the hell did all those glucotabs go??

I don't know where my towel is...

I seem to be having a day of over-reacting to things. I woke up to a lovely blood glucose reading of 16.7, which appeared out of nowhere. I was due a set change, and looking over my logs it occurred to me that I've woken up high on the third day of the last three sets. I'm normally ok changing every 3-4 days, so this is unusual for me, but maybe it's due to the heat or hayfever or something.

Anyway, I make a note of it, and change out the set. Now, the last couple of highs I've had like this have been stubborn, and it's taken extra corrections and an increased temp basal to bring them down, so I decide to be a bit aggressive and increase my correction by about 20%, and put on a temp basal of 140% for two hours, similar to what I'd ended up needing before.

Only, two hours later we're about to go for coffee, and I check my BG and discover I'm at 4. That's a drop of 12.7 in two hours, and I still have insulin kicking around... I grab a handful of skittles, bung some sugar in my tea and have a couple of slices of toast, since I missed breakfast, and underbolus for it all, ignoring the little voice in my head that's telling me that I'm usually quite sensitive to carbs for a while after a high like earlier.

Two hours after that and I'm sitting at 11.5. Damn that little voice, I should have listened to it. I correct, have lunch and bolus as usual, and three hours later I'm 12.9. Dammit.

If I hadn't overreacted to the morning high, I probably wouldn't have got the midmorning lowish number, and then I wouldn't have panicked and overfed it. I *know * that I tend to be insulin resistant for a while after waking up high, so the sensible part of me knew that I should have bolused for what I'd eaten at break. It's so hard to fight that panic when you think you're heading for a low, though.

Ah diabetes, it's never simple, is it?