Inertia

When I was diagnosed, I was admitted to the children's ward at the hospital close to where I live. That is where I was designated my first (paediatric) diabetes team, and where I got my diabetes education. That is where I switched from Mixtard 30 (yuck!) to MDI of Lantus and Novolog, and that is where I made the transition from paediatric services to adult diabetes services. Then I switched from MDI to pumping Novolog, and from pumping Novolog to pumping Apidra.

My diabetes team are really supportive, and know that even though my a1C is in the high 7s I truly am doing the best I can. They know that I test 10-12 times per day and use a CGMS and run temp basals and adjust my basals every couple of days and bolus for everything I put in my mouth and spot patterns and do all that jazz. And they give me the credit for doing that, even though my a1C is considered sub-optimal (apparently I'm supposed to aim for below 6.5). They realise that my hypo-unawareness is something which waxes and wanes and doesn't seem curable simply by running high for a bit, and understand that my other illnesses can sometimes affect my diabetes control. They have even given me opportunities for public speaking, teaching doctors and nurses from my area about the insulin pump and continuous glucose monitor, which was great.

The problem is, I don't feel like I necessarily get much from them other than an ego-boost. They make me feel like I'm doing the best I can and that is lovely, but also fairly pointless. I may as well just be told my a1C in an email, because it seems that that is the primary result of my appointments (which are every 6 months and usually last less than 10 minutes). Because pumps are so uncommon in my area, they do not seem to know a lot about adjusting basal rates according to patterns, and they know almost nothing about CGMS (I was left to insert it myself according to the instruction manual, and they told me to disconnect the transmitter when I have a shower - bad idea!).

The clinic I could move to is in Cambridge, where I go to university. In terms of ease, it makes little difference to me (I spend roughly the same amount of time at university in Cambridge and at home in Essex). However, Addenbrookes hospital has an amazing reputation, particularly in diabetes care. There was recently an article published about regional variation in amputation rates, and the Cambridge area had the lowest rate, with where I live in Essex having the highest rate. Addenbrookes also have a good history of prescribing insulin pumps, which will become relevant to me soon, since I am coming up on 4 years of pumping and it will be time to prove yet again that I should get a new pump rather than going back to MDI.

However, I am still not sure whether or not I should move. As a person I tend to get stuck in the rut of what is comfortable, and it is certainly comfortable for me to keep going to the D clinic which I have always gone to, and be seen by the professionals who I know and who know me. I am worried that if I switch my team might be more judgemental about the fact that I am failing to reach the targets set, because they do not have a history with me. On the other hand, I know that those worries are kind of stupid - I mean, who cares if my doctor or nurse thinks that I am trying or not, as long as I know that I am? So I think that I will probably switch.

I just need to stop with the inertia and start actively trying to improve things. Now that is a challenge.

Infusion set drama

I feel like my pumping life has consisted of a heck of a lot of infusion set drama. I'm on the Medtronic 522, and in this blog I am going to account what has put me off each infusion set, and why I'm now kind of stuck.

Quick-Set

The Quick-Set was the first infusion set I used. I used 6mm Quick-Sets because I don't have much body fat. My foray into Quick-Sets was awful, short-lived and almost made me quit the pump entirely.

Through this period (several weeks) my BGs consistently ran over 20 (360), however much insulin I took. Occasionally I would put in a new set and come down to the 100s for a few hours, before dramatically shooting back to the 300s. When I removed the Quick-Set, it would inevitably be kinked. It was a horrible start to pumping for someone whose BGs only went over 300 occasionally whilst on MDI. My parents were even encouraging me to go back to MDI.

Luckily I continued with it, and moved to the next infusion set recommended by my CDE.

Silhouette

I used the shorter of the two Silhouette options - I think they are 13mm. They are an angled set, as opposed to the Quick-Sets which go in at an angle (both Quick-Sets and Silhouettes are made of teflon).

Silhouettes were what showed me that pumping really could work. My BGs were beautiful for the first week that I used them. However, on my third Silhouette my BGs ran higher and when I removed it I saw that it was kinked. I kept using the 3 month supply that I had, but found that between a quarter and a third of the Silhouettes I inserted would end up kinking.

The kinking of Silhouettes was not as bad as that of Quick-Sets. Because the Quick-Sets tended to kink at a 90 degree angle and block all insulin flow, I would rapidly end up over 300 or even 400, with ketones. The Silhouettes, on the other hand, would make my BGs run a little higher (in the 200s, usually), but there was clearly not a total blockage of insulin, just some kind of impediment in flow. However, I still felt that I could do better; having kinked infusion sets a lot of the time felt sub-optimal, even if the insulin delivery wasn't totally blocked. So I called my CDE and we decided that I would try out a new infusion set, that I had been wary about.

Sure-T

The Sure-T is a 90 degree infusion set (like the Quick-Set) but it has a steel needle which remains in the body, rather than a teflon cannula. A steel needle clearly will not kink in the same way that teflon is prone to, but I was wary of having a needle in me all the time. What if I bumped it on something and it poked me and really hurt, and surely it would leave a bigger bruise and more damage than my other infusion sets. Also, it just felt kind of creepier to have a piece of metal stuck in me than a piece of teflon. These worries about the Sure-T are not uncommon, I've seen a lot of people worried about it over at the CWD forums. But in the name of science, I decided to go there anyway because I didn't like the whole kinking thing.

Sure-Ts actually really aren't that bad. There are two 'stickers', one which sticks on the actual needle, and then another further up the tubing. This means that if you catch your tubing on a doorhandle, it doesn't pull the needle itself out (unless you tug really hard, which I actually did yesterday..) but only pulls on the sticker further up the tubing. That is a really good feature, because if you think it hurts to accidently rip a teflon cannula out of your skin, it HURTS to rip a steel needle out. Extra security is good.

It seems that I have used Sure-Ts for longer than 3 years of my diabetes timeline. For the vast majority (more than 3 years) of that, I had absolutely no problems. They removed a whole factor from my diabetes care. When I used teflon sets and I was troubleshooting a high BG, I always considered the fact that my set could be kinked, but steel sets never kink and for a large part of my Sure-T usage I didn't even have a blockage. I didn't have any set issues at all, which was amazing.

Sure-Ts are also really easy to insert, and wearing them is hardly ever painful. The insertion is just like doing an injection (no horrible insertion device). Having the needle in the skin is surprisingly painless, unless you hit a particularly sensitive area (my infusion site sometimes hurts a little for an hour or so after insertion, but that is not unbearable and it is very rare for the pain to go on longer). I'm not involved in contact sports or anything, but I am hugely clumsy and have hit my site with things more time than I can count, and it was never a problem.

Sadly, my love affair with Sure-Ts is over. In the past 6 months or so I have had serious problems with blockages (not in the main part of the tubing, but either in the needle or in the shorter part of the tubing, the 'tail' at the end). These occlusions end in 400+ BGs, no delivery alarms and ketones. I have been trying to ignore it but my overnight nausea filled ketosis on Monday night has meant that I'm really going to have to do something.

With my last shipment of Sure-Ts I ordered two boxes of Silhouettes so that I could try them out again.

Silhouettes, take 2

I weigh a bit more than I did last time I used the Silhouettes, around 135lbs rather than 115lbs (at 5ft 5). This means that I do have more of a layer of fat, and that probably helps (perhaps I should try the Quick-Set again!). I've gone through 20 Silhouettes and only had 1 kink. 1 in 20 is not a bad failure rate, and certainly better than I'm getting with Sure-Ts (especially because that was only a small kink, I didn't have any ketones or a markedly high BG).

In so many ways, I like the Silhouettes less than the Sure-Ts. They are less comfortable for me, insertion is more painful and sometimes the teflon causes itching. They also seem more prone to inflammation (perhaps minor infection, although nothing that I've needed antibiotics for).

However, I can't deal with any more of the Sure-T problems so I think for my next shipment (which I will order some time this week) I'm going to have to get Silhouettes.

In case anyone is interested, here is my ranking from best to worst on different factors:

Comfort: Quick-Set, Sure-T, Silhouette
Low failure rate (overall): Sure-T, Silhouette, Quick-Set
Low failure rate (right now): Silhouette, Sure-T (haven't used Quick-Set recently)
Ease of insertion: Sure-T, Quick-Set, Silhouette
Adhesive: Quick-Set (they stuck really well for some reason!), Sure-T, Silhouette
Attractivness: Quick-Set (adhesive rarely peeled up), Silhouette, Sure-T (I just don't like how they look)
Itchyness: Sure-T, Quick-Set, Silhouette

The funny thing about my rankings is that Quick-Sets actually win at quite a few things. They just had SUCH a poor failure rate that I can't imagine them working for me. Although I do still have a few lying around, so perhaps I should try again (I like going full circle).

Sweatbetes Week 2

I'm planning to run a 10K in September (with my mum and a couple of other people from work). I've been running for a little over a week now, and before I started I was fairly out of shape (not overweight, just hadn't done any cardio exercise for about a year..). When I first started I couldn't even run 2K, needing to walk about 0.5K of it. It was my breathing which stopped me rather than my legs, and I would get blurred vision and feel like I was going to throw up, which isn't something that's ever really happened before.

I ran the full 2K circuit for the first time on Sunday, one week after I began training. Then today I managed around 2.5K. I'm tired out by the end, but I'm still standing. I think that most of the time I'm doing slightly better emotionally as well, although I find it difficult to tell.

I've had to lower my basal rate quite a lot, from a total of around 19U throughout the day to around 15U. Primarily I've needed to lower my overnight basal between 9PM and 2AM (I've been running at 5PM). Before I run I eat a few spoonfuls of frosting - not healthy at all but I have been finding that eating that rather than drinking juice makes me feel less sick; I find it easier to run on a more empty stomach, although not too long after eating because I do need a certain level of energy. It's all pretty complicated to manage alongside the D, but it seems to be working out at this point.

I think my BGs might even be more stable since I started running, except for my 400s and ketones last night, but that was due to a site failure and requires a whole new blog post!

Flying the nest

When I left for university, I repeatedly searched the internet for experience and information and I didn't find that much in the way of personal anecdotes, which I find tend to calm my fears a little. So I thought I'd make a vlog on my own experience of leaving home with diabetes.

"You don't have to tell anyone"

"Diabetes is your own condition. If you want to keep it private, that's fine. If you want to tell your friends about it then that's fine too, but you don't have to tell anyone if you don't want to."

I wondered why I wouldn't want to tell anyone. I was 14 years old and I was texting my best friends to let them know that I was in hospital, that they didn't have to worry but that they could come visit if they liked. I'm pretty sure that one of my best friends announced my new diagnosis to our German class because that's where she was when she found out, and I didn't care. It's not like diabetes is anything to be ashamed of. It's a condition which I did nothing to cause and says nothing negative about me, and it might be a bit confusing to people if I have to keep disappearing to do injections and test my blood glucose.

A bit over a year later, I started to feel like I was being smothered with attention. I've never particularly enjoyed being the centre of it all, and it was just too much for me. I asked my teacher if she could ask the class to stop looking at my BGs and asking me questions all the time. It was just so frustrating for everyone to be knowing and questioning when my BG was a little high or a little low whether I wasn't taking care of myself properly and making judgements about it. I began to wish that I just hadn't told anyone in the first place.

I spoke to my teacher at lunchtime on one day, and she said she'd talk to them at lunchtime the next day. But the next morning, during registration, this happened.

Let's just say I was very glad that my friends knew that I have diabetes, knew what 'LO' means and knew that I needed glucose gel right away. Needless to say, I went and spoke to my teacher and started to view the whole situation in a newer and more positive light. Perhaps it was kind of awesome that people knew what to do.

From the age of 14 to 18, I was in high school with the same people who knew about my diabetes since the day I was diagnosed. Although I sometimes got frustrated when they looked at my BG numbers or questioned my judgements, my friends were the sort of people who I could look to when I needed help and they would know what to do. They even learned how to use glucagon.

In  October I left home for university and for the first time I was with nobody who knew me, and nobody who knew about my diabetes. I have to say, I have never had a huge problem with disclosure. I talk about diabetes as and when it naturally arises.

I do not meet people and blurt out that I am diabetic before I say anything else. On the other hand, my friends all know about diabetes. Sometimes diabetes comes up in conversation because somebody sees me testing my blood sugar, or because they see my pump clipped to my jeans. Sometimes they see me eating a glucose tablet for a low or they see a sensor or infusion set on my arm. Sometimes someone makes a comment about diabetes and I say "I have type 1 diabetes, and...". Sometimes someone makes a comment about something other than diabetes, and I feel that my experience with diabetes might be relevant.

On the whole, I try to tell people about my diabetes as soon as possible, but not before is natural. That fits into my general project of making diabetes a part of me but not the most important thing about me. If people didn't know I had diabetes, then they might not understand why I act like I do sometimes, checking my BG and wearing a pump. On the other hand, I want my identity to consist primarily in being a philosophy student, a painter, and all the other many things about me, and not in my diabetes.

__________________________

This post is my March entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/march-dsma-blog-carnival-2/

Sweatbetes

Exercising isn't really my 'thing'. Most kids at school are into gym class, but I tell you, I would have taken math or English over gym any day. Exercise is supposed to release endorphines and make you feel good about yourself, but I can tell you that it does not make me feel good about myself; it makes me feel incapable, uncoordinated and out of breath.

Recently, probably due to a combination of leaving home for university, depression and hypothyroidism, I have gained a few pounds. Although my weight is still perfectly normal and I'm not worried about it as it stands, I don't want to keep on this trajectory so I figure that I probably should start exercising some.

I came home on Saturday for my vacation from university, and my mum has been going running a few days a week. She asked me if I wanted to go with her, and I reluctantly agreed because I know she'd rather go with someone. Additionally, my doctor told me last week that exercise might be a good coping mechanism for me.

Diabetes always puts me off exercise a bit. My blood sugar plummets and I don't feel it and I inevitably end up consuming more calories than I burn off. However, I know that exercise is still good for my cardiovascular health and that I should try to work though it.

The best time for me to exercise is around 4 hours after a meal. That way I don't have IOB to drive my BG down, but I'm not totally hungry and unenergised. So me and my mum went on a run around 5PM today. We didn't run that far, maybe only around a mile, but it's okay. It's been a long time since I went for a run.

Before going I had a small glass of orange juice mixed with 3 teaspoons of caster sugar (I know it sounds gross, but it totally works for my BG). My BG before I left was 9.8 (176) and when I got home it was 9.2 (165), so that was a win as far as I am concerned. So I might go out more with my mum. I know that I can make it work and I know that I should; it just takes a stupid amount of effort. And perhaps one day I might even enjoy it.

I shouldn't be scared

I had an appointment with the doctor on Friday. Not a diabetes apppointment, but a depression appointment - I have them every two to three weeks so that he can check up on how things were going. I don't want to go into all the details of the appointment because some of it is not stuff that is ready for the internet (for now, at least), but I left in tears, and I knew that when I went back up to my room I would have to see my friends so I ended up just sitting on the grass outside for a minute and crying.

I have been on Citalopram for over 6 weeks now. When I started on the medication, my depression was diagnosed 'moderately severe' (somewhere between moderate and severe) and 3 weeks later, it was simply 'severe'. This is according to the questionnaire (PHQ-9) and I had actually only gotten a couple of points worse, so the doctor decided to keep going and see where I was at in a few more weeks.

This week I went into my appointment and he asked how I was doing. I said that I honestly had no idea. I have been having some not so good thoughts and I have been crying a lot, sometimes inappropriately. My emotional symptoms feel just as bad. However, I am more able to get out of bed in the morning, and I feel more able to participate in social activities. It seems that I am outwardly getting better, although I still feel awful.

He asked how my work is going. I'm at this crazy academic ridiculously pressurised university. I said that I don't feel like I'm doing as well as I could be, but that all my marks and results have been good, which is true.

He said he could tell that I am better. Apparently I am now actually engaging in a discussion, whereas before I just seemed kind of dazed, or out of it. The way he said it, I imagined that my eyes had before been glazed over and now they're all sparkly and full of life.

Is that not just shit? What is the fucking point of getting better if 'getting better' just makes me act better? Why is it that he only cares about how my work is going and not how my mind is going? I felt like I had been discounted somehow, as if he could read everything about me from a 5 minute conversation. Does being a psychiatrist mean that he is allowed to know more about me than I do about myself?

Apparently the next step is counselling or cognitive behavioural therapy, but I don't feel ready and I'm absolutely terrified. My mum said that I should do it, like it's that easy. My doctor said that's really the only next thing he can recommend.

I'm getting over how upset I was initially about what the doctor said.
Maybe the drugs have helped, because if I can at least maintain a pretence of normality I guess that does mean I've gotten better, even if I don't really feel any better. But counselling just makes me feel so much worse. If it were just that it didn't help then that would be fine; I would go just to humour everyone and on the off-chance that it could do good.

So I have no idea what to do. I feel like my only next step is a really dangerous one to take, because when it's already like this I'm walking on eggshells, trying not to do anything to make it worse, and I know that counselling has a high chance of doing that. People keep telling me to do it, and I'm so scared. People make me feel like I shouldn't be scared, but I'm so fucking scared.

Those Conversations.

I was out on Friday night with my friends, celebrating an old friend's 21'st Birthday. I had already had 4 alcoholic drinks and was a small bit tipsy.

My cousin and I were giddy and excited as we both squashed into the same bathroom cubicle of the busy nightclub toilets. The noise outside was muffled and there was some sort of weird silence now inside the cubicle, although we were still hyper, laughing and joking.

My hand brushed over my infusion site as I placed my handbag down and it felt odd. I could feel that the adhesive was hanging on by a thread, but wasn't sure if the cannula was still inside me. My cousin, who is also called Kate, knows what she needs to about Diabetes. Here is how the conversation went:

Me: "Kate, is the tube still in my skin?"

Kate: *clumsily pulls up my shirt and tries to focus on my site* She went quiet, and I turned and looked at her and she had my site in her hand, and giggled, "Am, no, it's not in your skin, just the plaster was hanging on, the tube was out."

We both stopped for a minute. We weren't two young carefree women having fun in a nightclub anymore. Diabetes popped it's head up to say "HEY!! I'm still here ya know!! Don't have fun without me!!".

She knew that this was dangerous because I had been drinking and I knew it was dangerous.

My beverage of choice is very sugary, I don't like beer or ales or stouts or ciders, or even wine. I don't drink often but when I do this is what I drink.

Kate: "Damn, do you have to go home now?"

Me: "Nah. I'll be okay. There are 3 hours left, i'll just stop drinking and i'll be fine."

I knowingly had no back up insulin but for some stupid reason, I refused to be different that night. I was having so much fun, dancing the night away, celebrating with friends. everybody was happy, I was not going home, I was not letting diabetes ruin this night for me.

We carried on with our business in the packed nightclub bathroom. Then she stopped and said to me, trying to sound serious because we weren't the soberest that we have ever been.

Kate: "So, if you pass out, is it because you are high or you are low? Because the lack of insulin will make you high, the alcohol that you have had could make you go low."

Me: "Erm, good question. If I pass out, which I won't, just test me."

I was so ashamed of myself right there. I didn't know what to say to her. Bad Diabetic. Can't take care of herself. Doesn't know what she is doing.

 I haven't been testing my blood sugars at all in the recent weeks. I'm struggling and DRehab is just non existent right now.

I continued the night, telling myself Diabetes wasn't going to win. But it did. It was always at the back of my mind. The thirst was unbearable and I could feel my eyes wanting to close. I must have been off the charts.

I got home at 2am and went straight upstairs to put a new site in and test. I was 32.9. (592). I didn't even know what to do about that. I had no ketones, but I wasn't sure how aggresively to correct because of the alcohol. Eventually I contacted Lindsey and she told me what to do. I just took 5 units and gently cruised down the rest of the night, setting alarms every 3 hours to make sure I didn't go higher or too low.

I don't know how to get out of this stupid phase i'm going through. I'm just so scared all the time and I don't want to have to deal with it. I am so ashamed. I feel a lot of things. Fear, guilt, blame, to name a few. I just need to keep pressing on, and hoping sometime soon, something will come to me and give me strength to grab it by the horns.