An up and down month

You'll be wanting an update on my experiences with the Dexcom 7+ CGMS. I can only describe it as a rollercoaster, technologically and emotionally.

In my last post, two days in, I loved it. It was the answer to all my prayers, working perfectly and giving me confidence.

On Day 5, we were going to visit friends (it was 2 days after Christmas Day) and I was happy that I would not be worried about my blood sugars because I could see what they were doing at the touch of a button. Yeah, THAT worked!! On the drive over, the display on the Dex started to show ??? which means that the receiver is not interpreting the results sent by the transmitter. In the manual it said this can sometimes happen and to leave it alone and it will come back.

I had ??? for a total of 10 HOURS!!! It totally ruined my day because my anxiety levels went through the roof. We had a pub lunch, never a good idea for me, and I had to do finger pricks all day as per usual.

I rang the support guys and neither of them could explain it. The Dex came back to life overnight and was fine, but the next morning ??? came back again as soon as I got up. Another disruptive day, more phone calls, still no idea. I left the sensor in but by day 7 it was just silly. I changed it.

I had the same start up problems as the first sensor, with a 10-ish hour delay before it started reading properly, but then it was ok. On Day 7 ??? started again. The adhesive had peeled up and none of the tapes I tried would stick it down.

I have concluded after 3-4 sensors that the problem is that once the adhesive starts to give up, the sensor wire moves about under my skin and cannot get readings. I think it has to stay perfectly still to be able to get an electrical signal from the interstitial fluid. After asking lots of questions on TuDiabetes I got some suggestions for adhesives to use on the skin. However these did not prove easy to find here in the UK. I did manage to find Skin Tac wipes on the internet from a company who appears to sell them for the purpose of sticking false boobs on!! Anyway, those appear to help if I use them on the skin before putting in a new sensor. I also got Tegaderm patches from ebay which I cut a hole in so as not to cover the transmitter, and then put over the whole thing. They are large but mostly invisible and very sticky. And thin so they fit the contours of the skin. My 4th sensor lasted 11 days, which was great.

The 5th sensor which is in at the moment is not so great. I put it in on Sunday so that it would be settled and working well for an overnight trip to London on Wednesday. I used Skin Tac and Tegaderm to secure it so there was no chance of movement. Ok, it didn't move. But its not right either. On Wednesday morning it gave me a reading of 6.5 mmol/l but my meter said 11.9. The trend arrows kept disappearing and the results were all a bit wierd. I was going to an award ceremony and was anxious all night because I didn't feel I could trust the Dex.

It is now Friday morning and I still have the same sensor in as it is working. The readings are about 1-2 mmol/l off constantly but I can live with that until I change it.

When it is working well, I am happy and feel more confident at lowering blood sugars. As soon as it doesn't play fair, my anxiety goes up and my mood crashes.

At the moment I still want it to work for me. I am going to keep using it and see how things go. On December 18th my HbA1c was 10.3, and on January 27th it was 10.2. Hmmm, no big difference but hopefully by the next one in March, I can have improved on that.

A good day so far

This morning started off in the usual way with me waking up and immediately feeling anxious :(

But I decided today I would test my lunchtime basal rates so I started testing at 11am, hourly. I started at 10.8mmol/l and it gradually fell until it was 4.5 at 3.30pm. I needed to take the dof out so I had two biscuits (20g of carb) and now an hour later the bg is 6.6mmol/l

Cool, that's what I call good - for me anyway!

Charts

The only way I'm going to get on top of things is by writing down my bgs and carbs and insulin doses. To that end I have just printed off a load of copies of blank bg tables and graphs so I can get on with it. Its a good first step, now I just have to use them.

A good start this morning though with a bg of 6.1. But the fear kicked in and I underbolused for my Fruit & Fibre and now sitting at 14. Sigh!

Back to blogging (again)!

I have been thinking about getting back to this blog for the last few days, but just now I saw this entry from Kerri at SixUntilMe and it touched a chord. I still have my fear of hypos and one of the parts of my fear is to do with people thinking I'm weird or a nutter if they see me having a hypo. But watching Kerri's video has made me realise that non-diabetics probably wouldn't even notice. Thanks Kerri, I don't need to be so self-conscious.

As a quick update, it turned out the raised prolactin level was caused by the domperidone. I came off it and everything returned back to normal, in fact i am more regular now than I have ever been! I now take erythromycin for the gastroparesis, and (touch wood) have not had any vomitting episodes for 18 months.

Hubby is doing well, all his check-ups are clear which is such a relief.

And we have a new family member, Susie, a 4 year old Golden Labrador that we got from Labrador Rescue 4 weeks ago tomorrow


I will go and check in with the blogs I used to follow and see what you have all been up to, and talk to you again soon.

Where does the panic come from?

At 1.20pm my bgs were 13.8. (248) I took 4 units extended over an hour and had about 50g of carbs.

At 2.10pm my bgs were 14.6. (263) I drove to work.

At 2.40pm - 13.2. (237) Brain kicks in, "you are dropping - start getting anxious!!!" So I did!

At 3.00pm - 12.2. (219) Brain says "YOU ARE DROPPING FAST, PANIC AND DRINK LUCOZADE!!!!!!!!!!! So I did!!!!!

At 3.20pm - 13.2. (237) Phew, going back up, think "Stupid woman, now you are full of Lucozade and you'll have to correct later!!!!!!!!!!!

What happened was my immediate panic response kicked in. I believed that my stomach wasn't absorbing the food (gastroparesis kicking in) and that I would drop right down and pass out at work and have to have an ambulance, etc etc, big hoo hah!!!!

The fact was that had not happened, my brain just convinced me that it had. I was already too high to start with and had a LONG way to go to end up hypo.

HOW CAN I STOP THIS HAPPENING?????????????? I am seeing my GP on Monday about some dizziness I've been having so I may ask if I can be referred to the psychologist for some help or I'm never going to get these bgs down.

hands and floods

I went to the physio yesterday about my hands. I have been referred on now to the orthopaedic surgeons. So I have another wait for another appointment. The physio thinks that the little finger would respond to a steroid injection but that the high blood sugars that I run would make them think twice about giving it because it can raise the bgs even higher causing ketosis. The thumb however, will probably need surgery. Hmmm. It will be a day procedure if it happens though.

I have decided that I would probably go completely to pieces in a natural disaster. In the UK we have been having some dreadful flooding and on Friday we were almost caught in it. We were travelling down the country to visit a friend and about half way we got involved in the flooding. Luckily we turned around and headed back home before it got too bad, but the area where we were is now completely cut off. While we were in it, I got in a right old panic, and felt trapped in the car, with visions of going hypo and passing out and emergency vehicles not being able to get to me! I didn't tell my husband it was this bad but looking at my face told him enough to turn the car round. Just imagine if I actually had been cut off, what a state I would have been in. We are lucky really here in that we don't get massive extremes of weather like other places in the world, but with global warming it is only going to get worse.

Or is this just a case of me worrying about something else that probably will never happen to me?

Numb

I have been experiencing some numbness on one side of my face recently. Well, not exactly numbness, but I don't know how else to describe it. Not tingling, not pins and needles, so I guess it is numbness. I can feel if I touch my face though, so its not completely numb, just an odd feeling. Anyway, I am going to see my GP about it on Monday morning.

I attempted to test another set of basals today.
7.30am - 8.0 (144)
8.30am - 8.1 (146)
9.30am - 7.9 (142)
I then left to drive to work. There was a lot of traffic built up in town so I turned off to go the long way round. As I drove up onto the bypass, I felt really hungry and my stomach was growling, and I started to get that tingly feeling in my arms. I got anxious because I was driving at 65mph, but knew I was only 15 minutes from work. I came off the bypass still feeling a bit low, and when I was stopped at traffic lights I had 3 mouthfuls of Lucozade from a bottle that I keep in the drinks holder. (It tasted yuck, I can't remember how long its been there but I must remember to replace it with a new one.) Five minutes later I was in the car park at work and checked my bg - 7.4 (133). So I wasn't low after all. I doubt it had risen from a low in 5 minutes (less actually), so it was probably the anxiety that made me feel odd, and the fact that I hadn't had any brekkie was why I was feeling hungry and tummy rumbly. Anyway, that put paid to my basal test as it rose to 10.7 (192) by 10.45am.

However, since my appointment last week I have been (mostly) bolusing correctly and doing these basal checks and my confidence has been increasing. My 7-day average is now 10.8 (196). I will be really happy to keep all my bgs under 10 (180) if I can and then lower that number in about a weeks time. I'm sure I'll be fine as long as something doesn't happen to frighten me and set me back to square one. But I am thinking positive, so that isn't going to happen. I AM going to get that HbA1c down again, I AM I AM I AM!!!!

What was I THINKING?????

I realise that all my posts up to now are kind of on the negative side. So I apologise in advance that this one is going to be along the same lines. However, after this one I will pull myself together and DO SOMETHING ABOUT IT!!!

Anyway I just wanted to talk about how stupid I am..........

I have high blood sugars. Fact.
I need to get them down. Fact.

What did I do this morning? Wait for it.........

I woke up at 9am with a bg of 12.8 (230). What would you do? Correct the high, right? Not me. I have a worry that my gastroparesis will kick in and not absorb my breakfast, so I eat first. I then wait 45 minutes until my bg is now 15.5 (279). Now I take a 2 units bolus plus 2 extended over 45 minutes!!!! This has no correction bolus built in, and is probably not enough to cover the carb in the porridge anyway. I then go out to the Post Office and back a walk of twenty minutes tops. When I get back I test again, still around 15. I fancy a biscuit so I take 2 units and eat 20g carbs.
Half an hour later bg is 13.5 (243). Instead of thinking "oh good its coming down", I think, "Oh god its coming down, I'll keep an eye on it."
Another 20 minutes, bg 12.9 (232)
Another half hour, bg 11.3 (203)

Inside my head, "Oh no, the biscuit didn't absorb, my gastro is playing up, the insulin is in and going to keep working until I drop to zero, panic, panic, panic, drink Lucozade, NOW!!!"

So I did!!!!!!!!!

Guess what? 20 minutes have passed and I'm up to 13.1 (235). What a surprise!!!! My stomach is fine, I wasn't going to die, I'm not panicking.

This is how my mind works all the time at the moment. What am I doing to myself acting this way? More importantly, how do I get over it?

Other diabetes blogs - friend or foe?

Over the last week or so, since I decided to blog about my diabetes, I have been checking out other people's. There are some good ones out there and some of the ones I like I have listed in my sidebar so I can find them again easily.

What I'm not sure about is if it is a good idea to read other people's blogs or not.

On the one hand, it is wonderful to know that there are other people out there who are going through the same as you. People who understand the ups and downs, and who also have them too. I used to think I was the only person without a HbA1c of 6.5 or less, or who was frightened of lows. I now know I'm not. This is very reassuring. It is also lovely to get comments on my blog from total strangers who are very friendly and helpful. This is only my 5th post and I have already had 9 comments. Thank you to all who have left them.

On the other hand, I have been reading about things that have possibly made me a bit more nervous about my condition. People passing out and waking up in the hospital for instance. This is one of my worst fears (apart from not waking up at all!!) and to be reminded that it does happen is probably not something I want to read. I have never passed out from a hypo, probably because I keep my sugars too high on purpose, and check far too many times a day.

There are also the people who are really good at being a diabetic and it makes me feel bad that I am struggling so much with it.

I will keep reading though, because as my husband says, these people are still around to blog about it, they did recover from these hypos. And I will too.

Therapy

Over the last 18 years or so, I have had quite a bit of therapy.

It started with a session of hypnosis after my first hospital admittance with ketosis. This was about 3 years after my fear and anxiety started. While I was in the hospital waiting to be let out, a hypnotherapist came to see me and set up an appointment at my flat. I was convinced it wouldn't work. When he came he first tested my susceptibility. He made me think that my arm was really heavy, and when it came to lift it, I really couldn't. It was quite strange.

He then made me squeeze my hand tight, and did whatever he did so that if I felt anxious I could squeeze my hand and the feelings would go away. It kind of worked, if I wasn't in too anxious of a state, but if I was in full panic mode, all thoughts of squeezing my hand went out the window.

And this is how all the therapies I have tried since have gone. It's all fine and dandy deciding on what coping mechanisms you can use, and talking it all through with a therapist/psychologist in a calm way in their office, but when it comes down to the nitty gritty of a hypo (or even the thought of one), I completely forget all that, and panic! "Replace your negative thoughts with positive ones," they say. When I am having a panic attack, all I can think of is "Oh my God, Oh no, what am I gonna do, what if I pass out, what if I die, Oh God!!!!!!!!!!" Not really anything positive there, is there?

I have tried Cognitive Behaviour Therapy (CBT) - I get the theory, and the strategy of slowly exposing yourself to the thing you are scared of. But I'm too scared to do it!! So I don't get anywhere.

I tried Eye Movement Desensitisation and Reprocessing (EMDR) - that was pretty successful, but as soon as I had a scare, it all went out the window again.

I tried hypnosis again recently, but was too wound up to relax, in case I went hypo during hypnosis even though I had made sure I wouldn't.

I am now going to have another go at CBT by working through this book, Mind Over Mood. It has had some good reviews.

The irony of the situation is that my husband is a clinical psychologist, he fixes other people all the time, but because he is too close to me, he can't be my therapist. It is VERY frustrating!!

The homing diabetic

When I have a low blood sugar or feel I'm going to have one, I become like a pigeon. I get an overwhelming urge to get home. In the most direct line possible with no distractions.

This afternoon I went to get my blood tests done at the hospital for my review in 2 weeks time. When I left work at 2.45pm my bg was 13.0 (234). I didn't correct because
1. I was about to drive,
2. I was going to be walking to the hospital in about half an hours time, and
3. My bloods tend to fall later in the afternoon anyway. (I need to recheck and sort out the basals).

At 3.15pm it was 10.1 (182). I walked over to the hospital and had the blood taken, and then checked again. 7.5 (135). A drop of 5.5 (99) in an hour. Although I wasn't hypo I started to feel very anxious and took some Lucozade. I just wanted to get home, before the hypo hit if it was going to. How MAD is that?? I was INSIDE a hospital, and I wanted to get home. The hospital was full of doctors and nurses and I was 50 meters from the diabetes dept. My house was a 15 minute walk away and empty! But I left, and headed home. Part way I went in to collect a prescription in the supermarket pharmacy, and checked my bg which was now 8.7 ( 157). Good, going up.

What is this urge to be at home? I guess I see it as my "safe place". I am in control there, and know where everything is, and that it is mine. And my husband is usually there too. But to rather go there, than stay in a hospital for a quarter of an hour longer, what is that all about?

That is an interesting word though - control. I shall revisit that at a later date.............