1 shot, 2 shot, 3 shot…. High

My previous post explained how my weekend got off to a ropey start. Unfortunately it just got worse!

Jhogg and I love monopoly but its not really a game for two players so we rarely get the opportunity to play. Luckily for us, my brother also loves monopoly. We had 4.5 hours to kill before dinner so the logical choice for us was to have a game.

When we play we refer to it as shot-opoly and it has its own special set of rules, no prizes for guessing what is involved. As it was 4PM we didn’t want to be going crazy so we decided to choose a nice flavoured shot with a lower percentage alcohol. You know, those really sweet full of sugar ones?

I don’t know why the alarm bells weren’t going off for me at this point!

About 2 hours later we opened a bag of Doritos. I should have tested at this point, I’m not sure why I didn’t, but I didn’t bolus for the crisps as I know that drinking tends to lower my BG.

Just before 9pm my dinner was placed in front of me in the restaurant and I checked my BG before bolusing. 18.9 came screaming back at me. Bugger.

A correction and bolus for dinner went in for my (high carb rice based!) dinner. I avoided dessert when everyone else had.

It was a short walk home, only 15 minutes, but by the time we were in the door I had dropped down to 5.0 again and had a whole host of insulin still active. Cursing the alcohol, myself and my pancreas I had a snack before bed. What followed was a poor nights sleep punctuated by alarms and BG tests to ensure I wasn’t going dangerously low or sky high.

Sometimes trying to have a bit of fun is just not worth the effort!

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One Lonely Test Strip

The addition of the pump has made my overnight bag even bigger than it was on MDI….. which was even bigger than it was before D. I now need basal pens, bolus pens, needles, sets, cartridges, insulin vial, batteries, the kitchen sink…. All those standard things. I’ve had practice though, like to think I’ve really got things under control now.

Last weekend we were venturing off to Edinburgh to visit my brother. I was a bit rushed in the morning and we left a little late. I didn’t mind though, I felt it was more important to make sure I had my bag sorted. I knew we would be drinking so I double checked I had Lucozade and my glucogon. I double checked dates on pens, grabbed enough haribo to feed and army. Before we locked up Jhogg specifically asked me if I had all my diabetes stuff. I replied with disdain that OF COURSE I did, I’m not stupid right?

Before we even reached the dual carriage way I panicked that I had forgotten my testing kit. I hurriedly checked my handbag and it was there, disaster averted. If only I had thought to open the case for it………

We arrived in Dalgety Bay to have lunch with a friend on the way down. We were having a right old natter and ordered our food. I pulled out my kit to test, opened the little tub of strips to find one left. One looooooonely little strip.

*enter expletives here*

JHogg was left somewhere between being worried, thinking I’m an absolute idiot and feeling really really smug.

Long story short – I used the strip and tried to enjoy my lunch. I know Edinburgh very well so on the way into town I stopped off at the boots and got myself a cheap meter and some strips for the weekend.

I didn’t think I needed a list. I know what I use for my diabetes and I know what I need to pack. I knew I needed test strips, I had commented on it when I checked first thing in the morning. But just because I knew I needed them didn’t mean I automatically packed them!

We are off on holiday next week for 7 days…… I’m constructing my D holiday requirements list now!

Pump – 3 Month Check-In

Yesterday I went along to the hospital for my 3 month check in with my pump.

As I alluded to yesterday I have become increasingly disappointed with my care at the hospital. They seem to have pigeon holed me as “doing fine”. Since I don’t have a scary number of lows or many streaks of extreme highs I feel like I’m being given a pat on the head and then they focus on others. I’m not being selfish, I understand others need time with the DSNs, but in a group session I don’t feel like I’m being given the time to air my queries.

Take yesterday. We have had the pump for 3 months. As those who follow me on twitter well know I have been basal testing fairly intensely! In fact, I had to do the whole thing twice because just when I got the basal settings right my honeymoon threw me a curveball and I had to change them all again and re-check. I have been using the square wave and dual wave features, I have been experimenting with pre-bolusing to eliminate spikes and I am fairly confident I have sorted my bolus ratios. I may have gone above and beyond what was required for 3 months, but it is my health and I will do what is best to keep me fit!

A fellow pump starter was there with me. She and I have gotten on really well at all our sessions and are usually falling about laughing. She is lovely! But has she put any effort in to set her pump up? Practically nil! She has run two basal tests in 3 months…… that is all. Sure everyone’s circumstances are different but I really feel strongly that we have been given a great opportunity with these pumps and we should be grasping it with both hands!

As a result we spent most of the session looking over her graphs and trying to spot trends and suggest changes that could be made to her care. My graphs got a courtesy look and a nod and that was all. It felt like I was being punished for working hard I’ve been putting in.

I figured this was going to happen so I wrote down some questions to ask at the session. My main query was around insulin sensitivity factors and what I should be doing to ensure they’re correct. The response of “just try different ones and see” wasn’t cutting it for me. I had hoped we would look at some of the times I’ve corrected and try and work out if the ISF I have set up at various times is correct. It didn’t happen.

I questioned exercise and expressed my concerns with my consistent weight gain that I do strongly believe is linked with the number of carbs I have to eat to exercise. I got a “you’ll work it out” and a suggestion that I invest in a CGM. Gee thanks!

At @DM_Returns suggestion I DID put my foot down on one issue, and that was my hbA1c. My last one was the beginning of June and I am not due to have it done again until the beginning of December. Due to the fact I’ve now got a pump which I didn’t have before I put forward my case for having it taken now. I want to know if the pump has made improvements to my “overall numbers” in the same way it has improved my quality of life. I also aim to purchase a Freestyle Libre once they are available so it would be good to have a before and after sort of thing going on so I know if it is an investment worth continuing with! Thankfully I won that argument and I am being booked it to have it done a week tomorrow.

I’m sorry this post has turned into a bit of a rant, that wasn’t my intention! Yesterday was the last of my group pump sessions, in December I get to see a nurse all by myself. It is a shame that it is another 2 month wait before I get the help that I think I need, but until that day I always have the #doc !

OurD Tweetchat 30/09/14: Hypos

1) What are your hypo signs and symptoms

Personally, my first hypo symptom is anxiety. This can be very confusing because if I am in a situation where I find myself feeling uncomfortable and anxious I then assume I’m hypo which makes me even more anxious! I get very irritable and feel like I have unsteady hands. My heart starts racing and I’m generally all hot and bothered.

When I was first diagnosed my main hypo symptom was a bit odd, my arms would feel very heavy and that’s how I knew to test. To this day I have no idea what made that happen but I’m glad its stopped! I’d say the change to anxiety feeling came about 3 or 4 months after diagnosis.

2) What is your favourite hypo treatment and what works best to bring your glucose back up?

When I am out and about I use haribo or fun gums sweeties for hypo treatment. At home it is normally a carton of apple juice. In my desk drawer and in my fridge I also keep a bottle of Lucozade. Thankfully I’ve only had to use this once for a severe low! I’m not sure if the Lucozade did bring me up any faster than apple juice would have, but I was in the mindset that it had to be Lucozade and that was that!

3) How do you stop yourself over-treating a hypo?

Portion control is key here. I buy my haribo in 10g bags and my apple juice in 200ml cartons. That way once the packet is finished or the carton has been drained I know I’m done and I need to stop and wait. That is all great in theory, execution is the issue. On MDI it was always treat then eat. Treat the hypo with juice or something and then I got to eat a further 10g in the form of a biscuit/toast/whatever I got my hands on first. On the pump that is not the recommended technique. Now I am meant to treat with the measly 10-15g and then leave it alone!

My instinct from a hypo is to want to crunch something. I want the sensation of eating to improve my BG to make me feel better. It doesn’t matter if I know my BG is now in a safe range, I want that satisfaction!

Overall I would say I’m fairly disciplined when it comes to treating hypos. I still slip up at times but I try to keep that to a 10g over treat rather than a 50g one!

4) How many hypos do you have a week? What do you do to reduce the amount if you’re having too many?

Since starting on the pump my hypos have drastically decreased. I had a spell a few weeks back where I went just over 3 weeks hypo free. The issue with that was when the hypo finally hit it hit me hard!

On average I’d say I have about 1 hypo a week now. This all sounds great on paper, but I work hard to maintain that and it’s not without its failures! I am fairly sure my next hbA1c will reflect the lack of lows and unfortunately push me further away from my target. That is not until December though so I have some time to get things on track!

I am a grazer by nature and I think this has helped stopped the hypos. The pump allows me more freedom to snack when I want so its easier for me to eat now. I seem to just be constantly topping up my BG rather than letting it return to range. This is just as bad as regular hypos in my eyes and is something I need to address!

5) Hypo vs Hyper – which do your HCPs seem to concentrate on the most and do you know why?
I’ve not directly asked them, but I get the impression my HCP are more focussed on hypos. A while back I was having a run of high BGs which were concerning me. I called my DSN and we talked it through with the consultant. They were both focused on how great it was that I hadn’t had a hypo in 3 weeks and weren’t at all bothered that my average BG was 12 and I felt cruddy because of it. Of course I’m not going to have a hypo when my BG is out of range all the time!

I can’t say I fully understand why, partially because I don’t agree with them. Hypo’s have an immediate danger but the effects of repeated hypers will be evident over the coming years.

My last hypo was 10 days ago. I have the hospital this afternoon to discuss how I’m getting on with the pump. I’m hoping they will have something constructive to say about it!

Hands Off!

As you can imagine, the sight of Peter the Pump gains some level of attention.

I have been attached now for over 2 months. This little guy has sorted some pretty nasty highs for me, he is on me in some form for usually about 23.5 hours per day! He is my life line.

Last night I was out and saw some family friends. C has T2, her father was T1 and her mother was a T2 on insulin. She knows the drill. It was no surprise then when she wanted a closer look at Peter and wanted to see how it all worked. I showed her my site, explained moving them around etc….. And then she wanted to hold Peter and see the weight of him.

I was not prepared for my own reaction!

Outwardly I oozed comfort (or at least I hope I did!) as I handed him over, but on the inside I was in turmoil. He is MINE. Someone touching Peter feels very private. Very few people have held him, why would they need to?

Although it is hard to control diabetes itself, Peter is the one thing that lets me feel in control. If I don’t like the way something is going I can change the settings. Although I openly share BG readings and hba1c results with those who understand, I’m slightly more reserved with other people as I fear their judgement incase they misunderstand the complexities. Peter is just one of those complexities.

I understand my own reservations with letting other handle Peter, but it is something I’m going to continue to do. No one ever said advocating is easy, but the best way for people to understand a pump is to get up close and personal!

Motivation

I haven’t blogged in about a month. Its not through lack of want, but I haven’t felt like I have had much to say.

Nothing significant has changed. I’ve had high BG and low BG (although thankfully the lows have been few and far between). I’ve tried (and failed) to eat healthily and make good choices. I’ve gone to the gym. I’ve changed sets, reservoirs and checked blood sugars. I’ve had phone appointments with the nurse. I’ve been active on the DOC.

So why does it feel different?

I’ve been feeling a bit “off” this week. I can’t quite pinpoint why. I’m not exactly a crier, but yesterday I thought I was about to burst into tears at any moment. Today I’ve also felt fairly emotional but thankfully less like I’m going to erupt!

I have not been happy with my weight for some time now. I have been steadily gaining about 1lb per month. At first I put this down to increased muscle due to the exercise I was getting, but it has been getting increasingly clearer that it is not the case. I have gone up in dress sizes and certainly wobble a lot more!

Sure I could spin you all a nice story about how I need to eat 40g-60g in order to get a workout in the gym (as well as reducing basal) making it really hard to lose weight. I’m sure some of you would feel sympathetic. But there are other who, like me, would know better. No one is to blame apart from laziness on my behalf. I need to stop eating as much rubbish if I want to start feeling better about myself.

It is too easy to pass the buck and lay everything down in the “its because I’ve got diabetes” pile. Sure, I’ll toss things on there at times, but if I do that now it would be a lie.

As far as my diabetes goes I am remarkably well controlled most of the time. I’m not trying to blow my own trumpet, my logbooks have the evidence. It is due to hard work and a fairly intense level of control. I want other people to see that and hear that, not to hear excuses about weight gain.

And this (see I am getting to a point eventually) is why I think I’m feeling a bit off right now. I put all my energy into getting those BG numbers I want. I’ve been basal testing for the pump settings and working on my bolus ratios, I’ve used all my motivation to sort out a condition I didn’t want. And now? I’ve run out of reserves to get me out of a healthy eating rut!

Please someone come here and give me the boot I need!

What am I benefitting by posting this? Nothing really. Why am I posting it? Because I am not the first person to feel like this and I know I won’t be the last!

OurD Tweetchat 29/7/14: Sugar Buddies

I (once again) missed last night’s tweetchat. As a relatively newly diagnosed diabetic support is very close to my heart. So, as usual, here are the questions and my response (probably for the best I’m not being restricted to 40 characters!)

Question 1: Was there any support/advice missing when you were diagnosed?

As I have blogged about previously, my diagnosis was all very civilised. Sure I was ill and sure I went to the hospital, but I wasn’t in DKA and I was able to go home in just under 2 hours. I was never admitted, simply handed some insulin and sent on my way.
So what support/advice was missing? All of it. I was completely alone with a condition that I suddenly had to deal with. The doctor phoned once a day for the first 4 days and made changes to my fixed bolus doses, but he didn’t explain what he was doing or why. I think I am strong and independent, but that was pretty much stripped away from me because I didn’t understand the choices he was making and 5 minute phone calls weren’t sufficient to explain them to me.
Many people would have found that acceptable for the initial stages, as they came to terms with things. Personally, I didn’t need that. I just wanted to know what to do to get myself back to “normal” and carry on with my life. Everyone approaches things differently.

Question 2: What improvements could have been made when you were diagnosed?

As I prepared for the pump I was introduced to the psychologist. Apparently this service is available to anyone and you simply self-refer by calling them up. Over a year since diagnosis I am less interested in that right now….. but where was that option at the start? Again, personally, I doubt I would have used it, but the option should definitely have been mentioned up front in case I wanted to have a chat with someone.

Question 3: What do you wish you had been told when you were diagnosed and why?

That it helps to talk. I powered on for quite a while only discussing diabetes occasionally with friends who will listen, but trying to be careful not to bore them with it being my only topic of conversation. I then found the diabetes UK forum which kept me sane for quite some time and I went on dafne and met some diabetics in my area, and then eventually found the DOC on twitter.
Kids at diagnosis have the option for d-camps etc, but there is nothing for adults. It would be great if there was something, anything, local for us to go to and hang out.

Question 4: What aspects of having diabetes do you find most difficult?

The day to day living does come fairly naturally to me. I am a very disciplined person and so testing and bolusing when required is fine. My issue is more on the OCD side. I don’t have OCD, but I can definitely become fixated. This has applied to many things in my life, but I am most conscious of it with my diabetes. I have to consciously step back sometimes and just let the day happen. I try really hard to not let D run my life and I think that most of the time I succeed, but it is not without effort.

Question 5: What do you think Sugar Buddies should offer to people who have been newly diagnosed?

For me, open discussion is key. Making sure they know there are no silly questions, if they’re not sure then that probably means someone else has been unsure in the past too!

Health MOT

JHogg bullied me into joining the gym with him. He claims it is to keep him company, but I think in reality he wanted to be able to use my work discount!

As part of the joining process you get a health MOT. You are meant to go away and work out for 3 months then be checked again, if you improve your health score then you get free stuff. Seems simple right? It covers things like BMI (which I don’t agree with), waist to hip ratio (not sure I understand the benefit), cholesterol, resting heart rate, VO2 max (something to do with your lungs…), blood pressure and blood glucose to “see if you’re at risk of diabetes”. As far as the MOT went, I’m fit healthy and good to go. There is limited capacity for me to improve on my health score so my target is to maintain it. However I’m not sure I will be returning in 3 months, my confidence with the staff was shaken somewhat.

In the health questionnaire I filled out at the start I mentioned I had diabetes, mostly because it directly asked me if I did but also because I had my pump clipped to the back of my neck. Getting a bit obvious that I’ve got something going on! I by no means expect people to understand the ins and outs of diabetes, other than those who experience first hand. However, if someone is about to test my blood glucose level with the intention of advising me whether I’m at risk of getting diabetes (for the purposes of this test I assume they are hoping to catch type 2) I would hope they understand the basics of the condition.

The man started the blood glucose test by asking if I’d ever had one before. 10 minutes or so had passed since I had said I was diabetic so I assumed he’d probably forgotten. I told him yes I had and reminded him of my condition. He looked puzzled “So that means you have to do this every day?!” I’m pretty sure my sigh was audible at this point. I gave the guy a quick 30s crash course on type 1 diabetes as he did my blood glucose test. Once his ancient machine gave the result (4.4) he declared me not “at risk”. Of course I’m not “at risk”….. I’ve already got it!!! It was like he hadn’t listened to a word I’d said to him.

I sometimes wonder why I waste my breath!

(A little part of me really wished my BG has been up in the high teens just to see his reaction, and also to see what he advised I do!)

Pump or Snake?

Overall The “attached” part of having Peter the Pump hasn’t really affected me. During the day he is just chilling in my pocket or clipped on to my bra. Discrete and efficient we get the job done!

Despite night times initially being my main issue, we have them fairly streamlined now and I can go to sleep confident that I will wake in range. I mostly wear men’s pj bottoms so I started out trying to put the pump into my pocket. That lasted all of about 5 minutes as it usually fell out. So now I simply place it next to me in bed (more often than not I end up lying on it), if the set is on the left then peter goes on my left, if the set is on the right then Peter lies to my right

In the last few days though, Peter seems to have been possessed by a Boa Constrictor. Set is on my right and so was he….. but only after wrapping around my body once first. Seems I’m going to have to keep a closer eye on this guy!