Dear Diabetes

Dear Diabetes,

Hai, Siobhan here. I know you behave yourself most of the time, but lately, I've noticed that you're not really listening to me. It's as though you no longer want to play nice.

I'm getting a little sick of seeing numbers over 10 (180 for our US friends) all the time. I'm a bit sick of having a constant headache and feeling so lethargic. I don't like to annoy you and rage bolus, but I'm getting close to that point again. If you could just calm down a little and try to stay within target, I'd be eternally grateful.

I promise I'm doing the best for you. I am pre- and post-meal testing and trying to spot patterns (see: high all the time), I am giving correction doses when necessary, I am trying to cut down on carbs a little to make this easier for you. I am getting transferred to Gloucestershire PCT so that we can see a new consultant and a new DSN.

I know you're with me for life, so let's try to get along, okay?

Thanks

Siobhan

Pancreatically challenged since 1991

How things change.

In the last 3 days, despite correction doses, lower amounts of carbs than usual, etc, I cannot get my sugars in range. They are constantly high. Even though I am checking weights, following ratios, leaving time between eating so the carbs can be absorbed and the insulin has time to work...I am still high, all the time. Today I've been above 10 all day, except for 2 hours post lunch as I rage-bolused and whacked a couple of extra units on top of my correction dose.

See:

8am, waking: 14.6. 4u correction, 40g carbs, 8u for those carbs
12, pre lunch: 15.6. 5u correction, 30g carbs, 5u (1.5u:10g carbs)
2pm post lunch: 4.6 but feeling much lower, shakey etc. small glass of OJ.

and I had a diabetes burnout moment earlier and didn't check pre supper. Supper is always an exact science: bread/toast with ham, and salad. Always 40g carbs.

and right now? I'm 16.4 and sending in another 4u.

There are 2 possibilities I can think of:

1. I am pregnant. This is unlikely, but always a tiny possibility.
2. I have had a really bad mouth ulcer for a week or so, and now my jaw bone/tissue is starting to really hurt - as if it's bruised or something. Maybe that is pushing my sugars up?

Ughhh diabetes why can't you just be black and white for once...

Blogs I follow

Hurrah! I have spent the past hour or so reading over a couple of diabetes-related blogs. Here are the newest ones added to my list:

Your Diabetes May Vary
The Diabetic's Corner Booth
Diabetesalicious

You'll notice a common theme: everybody is, quite rightly, up in arms about the FDA's decision not to do anything about the fact that blood glucose testing meters can have up to 20% either way inaccuracy.

I rely totally on my blood glucose machine. When it gives me a number, I will 99% of the time respond to it (the other 1% I wash my hands and then retest). What that number is then changes everything: do I need a correction dose? Do I need something to eat? What am I doing the rest of the morning/afternoon, and does this result make a difference to that?

Why should I put up with it possibly being 20% either way? When I have days where I just can't keep my levels stable, is that because my meter is out by 20%?

So many people have written about this, I couldn't write it better, so I'll link you directly to some of the blogs I've been reading about it. Kerri over at Six Until Me points out the over 20 years ago, it was the same 20%! Surely we have come along in 20 years? Apparently not! Sam over at Talking Blood Glucose discusses whether this inaccuracy could contribute towards long term complications. Kelly at Diabetesalicious makes an excellent comparison to our blood glucose machines being a diabetic's GPS system (and also queries if we should start paying 20% 'either way' on our taxes!). Scott's blog, which I think is one of the first that I personally read, has a very good indepth article which is well worth a read.

My favourite quote, which I think is a favourite of several other people, is Scott's comment:

"Consider the following statement given at the meeting by industry-consultant Barry Ginsberg, MD, PhD, (from the firm Diabetes Consultants, based in Wyckoff, NJ): 

"How much accuracy you need depends on who you are. Those with type 2 diabetes who treat their condition with diet changes and oral drugs don't need to monitor their blood levels as closely as those with type 1 diabetes who take insulin", he said. 
What does Dr. Ginsberg's statement mean, exactly? Allow me to translate: 
In effect, he's saying "Look, 90-95% of patients have type 2 diabetes and they don't require insulin, so the current standards are more than adequate for the vast majority of users".

Screw you, Ginsberg.

Low day.

Today, I have been dragging on the bottom, as Patricia over at Waving and Drowning would say.

I haven't seen a level higher than 5.5, and the majority have been under 4. Basically I have been having non-stop hypos since about 9.30 this morning. I'm getting pretty tired, and I'm not bolusing for the slice of thin bread I just had. I know where it will end up if I do.

I saw the practice diabetes nurse today, who was very nice. She is referring me over to Gloucester Royal Hospital, to a Dr Thoman Ullahanan. I'm also being referred to the DSN team over there, to a DSN I was recommended to. So hopefully, that will get me on the way to getting an insulin pump. Who knows. I'll just have to wait and see. I explained to the practice nurse how unpredictable my lifestyle is right now, and MDIs aren't really fitting into it any more. She seemed fairly understanding. Let's hope this referral comes through quickly!

My lovely mum.

I am a type one diabetic of almost 19 years to the day. I am 21 years old (turning 22 next month, gulp). I didn't manage to get my mum anything for Mother's Day as I am constantly broke, so I wanted to write something about her instead.

Throughout my diabetes career (HA!), there has been one constant, omnipresent support vessel for me: my lovely mum.

Mum, doing what she does best - telling Nanny off for running down the stairs behind her!

It was my mum who kept taking me back to the doctors, aged just 2, insisting that something was wrong (she has been a nurse since she was 18). Mum is the one who features in a lot of my 'worst hypo' stories (aka 'funniest diabetes stories'). Two of these in particular stick out;

1. waking up to her shouting "IF YOU DON'T DRINK THIS ORANGE JUICE, I'M CALLING AN AMBULANCE!". It's amazing how fast you move when the word ambulance is mentioned. Apparently by that point, she'd already given me the emergency pen of Glucagon, and I still wasn't responding!

2. walking home from the bus stop with her. I went hypo, walked through a patch of stinging nettles, fell into a post box and then punched my dad in the chest when I got home. I vaguely remember doing all of those, with my mum shouting "WE JUST NEED TO GET HOME SIOBHAN, COME ON!" the whole time.

So thankyou, mum, for being what I consider pretty damn amazing. Thanks for believing in me and supporting me in everything that I do.

Completely off topic...

I haven't really ever spoken about what I do for a living; it would take me a huge post to do that. But I do want to talk about something that I'm really enjoying at the moment.

Two afternoons a week, I work on the farm here. It's a biodynamic farm. As with all farms at the moment, it's lambing season! This afternoon, I helped to tag, tail and castrate the poor little guys.

As a person and an animal lover, the above 3 things were horrific to watch. As a farmer, I could see their importance. They have to be tagged, so we know who they are! Some of the males are castrated, as we only need a certain amount. And the tails are taken off (by means of a very tight elastic band :() for hygiene reasons - if not, the sheep are very likely to get fly strike and all manner of other horrible ailments.

Anyway...the best part of it was when we would take the lambs and their mother out to the field (the first time in the field for the lambs!!). To do this, we would pick up the lambs, hold them in front of the mother and slowly walk to the field, with the aim being that she would follow the lambs. Naturally, when I did it, the mothers ran in the opposite direction! They got there in the end though, with a lot of patience and me putting the lambs on the ground every few feet to let the mother come and sniff them. Ahhhh. This meant though that I got to hold the lambs. They are ADORABLE. Seriously. One of them started to nuzzle on my neck! How cute!

I wanted to put them all in my pocket and take them home. :)

Meeting Richard Lane, and the DUK South Glos Support Group

Last night, for the very first time, I went to a support group meeting. It was fantastic, for a number of reasons.

At the meeting last night, the President of Diabetes UK, Richard Lane, was there. He gave a fascinating talk, a bit about him (he was the first person to have islet cells transplanted - a quick google will tell you more), some about the things Diabetes UK are focusing on in the coming year, a little about the research DUK are doing at the moment. Did you know 80 people are about to undergo islet cell transplants? Amazing stuff.

I passed on the info about the Diet Drinks Awareness Campaign, which he seemed very interested in. Let's hope we hear from him!

I spoke to him about my desire for a pump - he started by asking me (in front of the whole room of people, I was one of 3 type ones in the room!) if I had a pump and sensor. I replied "I wish! I've been told I'm not eligible." He then spent some time talking to me after his talk, he has given me his business card so I can call him about my quest for a pump. He then whipped off his shirt so he could show me his pump and transmitter/sensor!

He spent a moment talking about DAFNE, and asked if anyone had been on it. I raised my hand, then he asked me about how I found it, what it was like etc - so I got the chance to tell everyone how fantastic it was.

I also met a man who had had a pancreas transplant. I had no idea that this was a possibility - when I asked a few years ago, I was told that it wasn't possible to have a single transplant - i.e. it would have to be with a kidney, lung, etc. The guy - I didn't even find out his name! - said that after years on MDIs, a few years on a pump, he was still swinging from 32 to 2 in a matter of minutes. His consultant put him forward for the transplant, and now he no longer takes insulin. He's on 12 anti rejection tablets a day (2 different drugs), but stared out on over 45 per day! He said they also transplanted part of his bowel?! I really don't know the ins and outs of it, but it was fascinating to meet someone like that. I hope he will be at the next meeting. He also gave me the contact number of a DSN he said is amazing, so I will look to get transferred down to Glos asap.

So: I encourage you to find a local support group. Granted, of the 25-ish people there, I was 1 of 3 type 1s. But going to a group, and knowing that the people around you know what it is like to BE diabetic (person with diabetes!) is a wonderful feeling.

Oh, to be 'normal'.

The word ‘normal’ for me is pretty much definition-less, in terms of diabetes. My normal is going to be totally different to yours.

For me, normal is testing 6+ times a day. Packing a 200ml carton of OJ in my handbag is not only normal, it’s almost subconscious. Injecting myself 5 or more times a day is totally normal. Automatically guessing or remember the carb count of every food/drink I lay my eyes on is completely normal (and again, subconsciously. Oh how I would love not to do this!). Carrying a pencil case full of kit is normal for me. Using the term ‘kit’ to mean insulin and a testing kit – as opposed to say, illegal drugs and their paraphernalia! – is very normal. Avoiding pic’n’mix is normal, if not saddening! Injecting in public is normal, as is dealing with any stares I get. Trying to modernise peoples’ ways of thinking is normal (“yes, I CAN eat sugar”). Making frequent visits to Selly Oak Hospital is normal. The constant frustration of being pancreatically challenged is very, very normal.

So I’m curious: what is normal for you? What do you do on a daily basis that you no longer think about?

I like the way we can have these big differences. 

I find people fascinating (I almost studied anthropology at uni, and still consider it an option). I love hearing about different people, different lives, different attitudes. I have a particular interest in and empathy for children with diabetes, as I was diagnosed just before I turned 3. I have spent my entire life with diabetes, or so it feels (I don’t remember not being diabetic). I’m also very interested in the parents of children with diabetes. I would love to chat with both the child and the parents, and see how their feelings and perception of diabetes varies.

Ultimately, there is no such thing as ‘normal’ in terms of diabetes. It is such a personal thing, which can be affected by so many things (oh let’s think...food, drink, exercise, alcohol, mood, general activity, attitude, let the list go on...). It seems that with diabetes, there is no right or wrong, no good way or bad way of doing things. You have to find out what works for you. It’s a constant uphill battle, and the best thing to do, I believe, is to arm yourself with as much climbing equipment as possible, to make it as easy as you can.

My 'kit'

I’m pretty happy with all my diabetes gear; I don’t have any major issues with any of it. It’s with me pretty much 24/7 – be it in my pocket, in my bag, etc.

Short story: Freestyle Lite testing kit, Autolet Impressions finger pricker, Novopen 3, Autopen, 8mm Novofine needles.

Long story: I use a Freestyle Lite testing machine, and I love it. It uses Freestyle Lite testing strips (as opposed to bog standard Freestyle testing strips). The first time I got the strips on prescription, the pharmacist (who worked for a pharmacy beginning with B and rhyming with ‘hoots’) tried to deny that the strips existed. At the time, the machine was pretty new on the market.

“I’m looking at my computer and they do not exist on here. Are you sure you’ve got the right name for them?"

“Okay, if you can’t find them, can you call B-‘hoots’ in –insert next suburb- and see if they have them?” I requested politely. “I’ve got the machine and a prescription here from my Dr, so I know they exist.” He continued to deny their existence for a good 5 or so minutes, then decided a different tactic: to become a salesman.

“Tell you what, why don’t you buy this machine here?” he said. I looked at him, flabbergasted.

“I. Don’t. Want. A. New. Machine. I want the strips for the one I’ve just got!”

This continued for another few minutes. In the end, I decided to leave B-‘hoots’ and head for the next pharmacy – another reputable one, this time beginning with Ll and rhyming with...avoids (??). I explained what had happened before.

“Alright,” she said, “let me give our suppliers a call.” Off she tottered towards the phone. A few minutes later she reappeared.

“Right, they’ll be here tomorrow for you. It seems that they’re so new, they haven’t been added onto our databases, but they are available.”

One phone call, and I was sorted. Take that, B-‘hoots’!

Back to the machine: I love it. I love how small it is – it fits very easily into the palm of my hand. It has a relatively large display, which whilst I don’t have issues with my eyesight, I appreciate not having to ever bring it closer to my face to read! It has a great backlight, which first lights up the main screen, then light shoots out from the test strip hole when the light button is pressed again, then a final push to bring it back to the main screen. Which, as mentioned by many people, is great for night time testing – although I would like to point out that to get the light to come on you first need to either put the strip in or press one of the other buttons, -then- press the light button.

For the finger pricking device (also known as the torture device, especially if you have cold hands) I use the Autolet Impression, although this may change soon. However, for the most part, I like this finger pricker. It’s the one that has a set of raised bumps around the pricker bit (maybe now is the time to learn some terminology?), which is supposed to distract your brain from the pain. It thinks about the bumps, not the pricker. In theory, it works. In practice, it doesn’t, if I’m honest. The first few times I think it did, but now my brain is not fooled. I think I will switch back to the finger pricker that comes with the Freestyle Lite soon, I just need to get some lancets for it.

Right. The other stuff! I use Novorapid for my fast acting insulin, so I have a Novopen 3. Can’t say I’ve got many complaints...I have it in a lovely red and blue combination (as opposed to the plain old silver). However, I’ve noticed recently it’s looked really, really battered. Time for a call to nursey I think! Or perhaps my doctor could prescribe me one? He’s pretty nifty at sifting through his prescription generator thing to find what I need.

I use Lantus for my slow acting, and I use an Autopen Classic. I’ve gone through 2 or 3 of these in the past couple of years, and I’ve found that sometimes the mechanism that pushes the plunger goes really slowly on a couple of the pens I’ve had. Not stupidly slowly, just slower enough to notice it.

I use 8mm needles, which is what I’ve been using forever. I have tried using 5mm but I am really uncomfortable with such a short needle – I’m always scared I’m going to pull it out accidently if my hand shakes (or one of my cats rubs against my arm). So for the moment, 8mm it will be.

That’s the lot, I think! I’m pleased to say I’ll be testing out the new Contour USB testing kit from Bayer soon, so I will be sure to review it. Who knows, my precious Freestyle Lite may soon be my backup kit!

(please note, I took all my own photos to share with this post, but for some reason they will not upload)

thankyou, Sam!

Thanks to the lovely Sam over at Talking Blood Glucose, I should hopefully be getting my hands on the new Contour testing meter from Bayer. I look forward to trying this snazzy piece of kit and reviewing it! As much as I love my Freestyle Lite, I'm happy to give other things a try!

The Diabetes Police: much blogged about, finally at Click of the Light

2 days ago, I had an encounter with the diabetes police. Well, it was a cross between a diabetes police officer, an ignorant person, a know-it-all and a stubborn person. (I’m just referring to one -actual- person).

I work in the same house as her (I live and work in a community of people with and without learning disabilities, which is set up as a set of houses), which means I see her 5 or 6 days a week, and we eat around 10 meals a week together. Every meal time, I test my blood sugar at the dinner table (point being: she has definitely seen me test my blood). A couple of days ago, I was doing my 2 hour post meal test.

“WHAT IS THAT?!” she yelped.

“I’m diabetic, it’s my blood testing kit,” I replied.

“Oh, my mother has the diabetes. How often do you do that test? Every couple of weeks?” (bear in mind we have been working together for just over 2 months). In steps another of my colleagues –

“Er, no, we see her do that every meal time?”

“Well, my mother only tested every 2 weeks.” (inner eye roll from me.)

“Was your mum a type 2?”

“Yes, she had it for 5 years and then it went away.”

The woman in question is from a different country, so I have no idea what type of diabetes education and treatment they have. But I get the feeling this is more her know-it-all thing, rather than a case of just genuinely not knowing.

“So you just don’t eat sugar?” she continued.

“That’s a bit of a myth...as long as I know what I’m eating, I can eat anything I like.” 

The worst thing was, she came over and tried to look at my test result. Back off, lady. That result is mine, and mine alone.