Saturday, 15 December 2012

Diabetes burnout!

It's been a while since I have written anything, and the only thing I can put this down to is diabetes burnout.
After the evening when I couldn't wake Samuel I've been in a bit of a bad place, and its taken me a while to get out of it. I've not really want to know if that makes sense, obviously I can't get away from it, I am Samuels main carer, so I have no choice but to think about it every day. However, I have managed to distance myself slightly, and I've had to do it for the sake of my sanity.
Facebook, is a fantastic place, I've met many people online who are in the same position as me, and have a child, or children with type 1 diabetes, I've joined many groups, but its sometimes too much to handle.
We have just had diabetes awareness month, and world diabetes day, and last year I posted a fact each day, I updated this blog constantly, I put up links, but this year I couldn't face it. I turned my profile picture blue but that's as far as I went and I removed myself from some of the fb groups.

Yes, my son has type 1 diabetes, as does my husband, and yes it is constantly on my mind, but I have to try and distance myself sometimes, otherwise I will drive myself crazy.

Saturday, 29 September 2012


It's not often that I use this word when talking about diabetes. From the moment Samuel was diagnosed in March '09 I have considered ourselves lucky. His diagnosis wasn't stressful or traumatic, he never had a chance to get 'sick' as we already knew what we were dealing with. Ive always thought that if Samuel 'had' to have something wrong then this was ok, it could have been far worse. For the last three we have plodded along with no real dramas, and even when I couldn't wake him from his hypo last week I was still ok, or so I thought.
It turns that what I should have done was give Samuel the glucagon injection when I couldn't wake him. This didn't even enter my head, I can't even say that it was because I was panicking because I wasn't. If anything I was cross, I was cross because for the first time Samuel hadn't responded how he always had before. I'd like to say that I would have used it if I hadn't managed to eventually get him to drink, but I can't be sure.
For the first time I am questioning myself and my confidence has gone. I feel completely rubbish!!
What didn't help was that the blue candles flashed up on fb this week indicating that someone has lost their fight with type 1 diabetes, this time a teenager.
I have spoken to many people about the situation that I find myself in. Becky ( SDN ) has been very reassuring. She said that at no point when I was explaining the hypo to her did she think that I had put Samuel in danger, and that if she thought I needed traing in anything she would tell me and call me in for some. Friends of mine can't see why I have got myself into such a state. Samuel is ok.

The problem is me, it's in my head and I can't shift it.

I am a control freak. I like to be in control of everything.
I can't control this.
I need things to be perfect, I need perfect numbers.
I can't get perfect numbers.
I need people to believe that I am strong enough to deal with anything.

I have never grieved for my healthy child when Samuel was diagnosed because I didn't see why anyone would.

Diabetes has never 'got' to me the way it has this week because I have never allowed it to. It has never made me cry until now.
Maybe it's time to hold my hands up and admit that "this CWD mumis struggling".

Saturday, 22 September 2012

He wouldn't wake up!!

It's been over three years since Samuel was diagnosed, and two years since I started writing this blog. In this time most things I have written about have been quite light hearted and not too depressing. Sure, I have had my moments but as a rule I think I'm quite upbeat with my posts. Be warned, this one is not so cheerful, and could have been a whole lot worse!!

I always test Samuels blood before I go to bed, I admit I don't always test throughout the night, but this post is not about night testing. The way in which Samuel reacts to his hypos is a bit hit and miss, for example sometimes he will say he feels unwell and he is not low, other times he is running around like a loon and he will be under 3, and mostly his hypos wake him if he is asleep. If I have ever had to wake him to treat a hypo he has always been responsive, he may not be completely awake but will always be cooperative and drink his drink. That is up till now. Monday night was a completely different ball game.
I tested before I went to bed and his level was 2.7, this is not the lowest he has ever been but obviously it is quite low. I tried to wake him before I went to get his drink, I do this so he has a chance to wake up a little bit before I try and make him drink. He wasn't playing ball, he would answer me and was completely out of it. I went down the stairs to get his drink and decided that I would need a straw as there was no way he was going to be able to drink out of a cup. I got his juice and went back upstairs and again tried to wake him. I shook him a couple of times, I called his name getting louder with each time. I got no response, I grabbed his wrists to pull him to sitting, and again called him and told him that his sugar was low and he needed to drink. This time he did try and answer me but was flinging his arms around trying to push me away. I managed to get him on my lap and put my arm around him to stop him fighting me but every time I tried to get him to drink he turned his head away and was telling me no!!
I eventually managed to get the drink down him and I laid him back down. I rechecked 15 mins later, his levels were rising but it was not a number that I was happy with so I checked again after another 15mins.
Looking back I should have treated him with the gel as he wasn't really responsive enough to take the drink, and this would have been classed as a moderate to severe hypo, but as he had been that low before I didn't see it has one. What it has shown me is no two hypos are the same, and cant be distinguished by a number. I remember asking at diagnosis 'what number is classed as a severe hypo?' and being told that they are different for everyone.
What this has also shown me is that it is so important for me to test before I go to bed. I dread to think what would have happened if I hadn't.

Monday, 3 September 2012

Returning to school.

The new school year starts tomorrow, and usually I am not to phased by this event. School are fantastic when it comes to Samuels care, they have been doing it almost as long as I have. The staff know what to look out for, how to trat him and are aware of the tricks that he has pulled in the past. In fact school is the one place that I don't worry about.
However, it is 6:30 in the morning, (at least it was when I started to write this blog!) and I am sitting with the new care plan layed out in front of me, a list of things that I still need to do and feeling totally unprepared and I don't like it.
Samuel left for the school holidays on injections and is returning on a pump. This makes me nervous!  School, as usual have been amazing with two members of staff attending pump school with us, taking time out of their holiday to travel to London for the day. They are also sending another two members up to the UCLH training session for schools. They have done as much as they could have done and for that I will always be grateful. But, for me, I feel like we are starting again, that we are back to when he was first diagnosed and worried about his first day in reception. Samuel on the other hand couldn't care less!!
Fast forward to now (10:30 pm) and things are so much better!! I e mailed school this morning to tell them my concerns, and I was told that if I wanted to pop into school to go through the care plan then I could. I spent an hour and a half with Lucy going through the care plan, with her making notes of additional things to tell his teachers. We also talked about the concerns that I had, what the plans were for lunchtime and PE, and I came away much happier.
Becky, the nurse from UCLH called and we have programmed the pump with different basel rates for school days, as the children tend to need less insulin when they are at school. I have sorted out the hypo box for the classroom, the box for the medical room and the insulins for the fridge.
So, we are set for the new school year!! I just have the small matter of getting four children up nice and early tomorrow and in their school uniforms! Wish me luck!!

Thursday, 30 August 2012

Changing the rules...

Let me start by saying that three weeks in and we are loving the pump. As we had hoped we have better control, less fluctuating levels and a happier Samuel, which is all great. What's taking me slightly longer is the ability to forget almost everything that we have been doing for the last three years. Obviously the 'diabetes' is the same. It's still unwelcome, annoying and doesn't follow the rules. Any parent of a type 1 child would agree. What has changed is the rules in which we follow when attempting to whip it into shape!!
The main rule change for us is the for the treatment of hypos. When Samuel was on mdi, we would treat a hypo (bg below 4) with fresh orange juice, wait 10 mins, re-test and if above 4 we would give two biscuits. Actually, the three girls would quite like it when he was low as they would also get two biscuits.
However, it is slightly different on the pump. 4 is still the floor and needs to be treated but we now follow the 15 rule: Treat with 15g of fast acting carbs, wait 15mins, re-test and if above 4 that's it, not further treatment is required. This has not gone down too well with the Warrington children!!
I also have to remind myself that if the levels before bed are between 4-5 that actually its ok, whereas on mdi, that would be too low and he would need a snack.
I wouldn't change it for the world now though, it just takes a little bit of time to trust the pump, but I am getting there.

Saturday, 25 August 2012

Pumping Insulin....

Samuel has been pumping insulin for a few weeks now, he went 'live' on Tuesday 7th  August 2012. We started this journey with another family, Magda, Ben and 7 year old Kita. Samuel and Kita became firm friends straight away, which was lovely to see as Samuel doesn't really know anyone his own age with type 1 diabetes, and I feel very lucky to have met Magda, it feels like I have always known her and it is lovely to have someone who is going through the same process at the same time. I have lots of support from the diabetes on line community, but it isn't the same.
Pump school had arrived very quickly for us as we were given a cancellation appointment, so although I had some idea of what it entailed I didn't really have a chance to get myself worked up about it. Olivia had made a countdown chart so that Samuel could cross off his remaining injections, and week were all, as a family excited. It would mean a better quality of life for Samuel, better control and more freedom.
The night before I have to say I had got myself in a bit of a state, even though I had been fighting for this for a long time I was overcome with nerves! What if I did something wrong? Did I push Samuel into it? Was it really the best thing to do?
I really shouldn't have worried, everything went really well!
Samuel loves his pump!! On our way home from the hospital we let him have a bar of chocolate, and he looked at us and said 'it's been so long since I have had one of these (mint aero) I can't remember what it tastes like' he enjoyed every mouthful!
He is a completely different child, he doesn't have the mood swings that he used to have as we don't have the huge blood glucose swings. His levels are much more settled, in the first two weeks I think he has only 4 readings over 14, which for him is amazing!

Was the fight worth it? Absolutely!
Was the two hourly testing worth it? Yes! (although I won't lie it was a killer!)

The team at UCLH have been amazing, the support for the first two weeks (daily phone calls) was fantastic, they have given me my son back.

My only regret is that I didn't do it sooner!

Friday, 3 August 2012

Pumping saline!!

Now, I realise that I have been really slack these last few months with my blog, sorry, however I have some truly fantastic news.
I have wanted Samuel to have an insulin pump for the last year or so, he hadn't shared my want! We had been plodding along for three years, and I knew it was time for a change. Our local hospital do not provide a pump service so in order for us to get a pump I had to change Samuels care. This worried me to begin with. The DSNs had been fantastic since Samuels diagnosis and I almost felt if I was betraying them by going elsewhere, but I knew that if I wanted a pump for Samuel that I would have to do it. As luck would have it I work at the hospital that some say is one of the best in the country as far a treating children with diabetes, and the Prof is the best in his field. So I requested that we be referred.

It then went completely crazy and I was totally overwhelmed!

I had a phone call to say that we had an appointment on the 16th July '12 to meet the nurses. I had discussed this with Samuel and he was keen to go, although he had not confirmed that he was indeed going to have a pump. We went to the appointment and after sitting the the nurse, and playing with the play therapist Samuel gave us a double thumbs up!! We were then given an appointment to come back for Samuel to try a pump, to see what he felt about it being attached, if he could sleep with it etc. I was expecting the appointment to be after a couple of weeks, but no we went back on the 18th July '12. At that appointment we were told that there was a place for us at pump school on the 31st July '12 if we wanted it. This meant that Samuel would be pumping insulin on the 7th August '12!!
I was completely overwhelmed! I couldn't believe it was happening so quickly....
So, tonight as I write this,  Samuel is pumping saline! So far, so good!

We can't wait until next week!

Thursday, 28 June 2012

Diabetes fail!!!!

This episode occurred a couple of weeks back. Saturday mornings in our house are always quite chaotic. I had always said that the children would not take part in activities that occurred at the weekend, however things haven't quite turned out like that and now my eldest daughter has a tutor on a Saturday morning. So, we had a busy day planned, the fire station were having an open day and I was taking the children with my friend and her two girls. I had got them all up, Samuel had checked his blood and his level was on the low side, not hypo, but I decided that I would give him his injection after he had eaten his breakfast instead of before. They finished breakfast, I took daughter to tutor, came back, loaded the dishwasher, put some washing on. It was then time to collect from tutor, so I did, came back and got everyone ready to go to the fire station. I had decided to buy them Mc Donald's for lunch, so off we went. Now, the more observant among you have probably already noticed my error.... We sat down to eat, Samuel tested his blood 26!!!!!!! Yep!! I had forgotten to give Samuel his insulin with his breakfast!!! DIABETES FAIL!!!!

Saturday, 19 May 2012

A quick round up....

I have been rather slack in the ole blogging department lately. So here is a round up of what has been going on in our diabetic world. My friend and I held a charity curry night for JDRF (Samuel) and The Muscular Dystrophy Campaign (her son Oliver). We raised just short of £1900, which was an amazing amount of money and everyone enjoyed themselves (I think!!). Three days after the four children, my mum and I flew to Ireland. We went with JDRF to talk about the D GAP trial. Those of you that follow my blog regularly will know that my three girls are part of this trial. I was meant to take part in two talks. However, I couldn't go to the first one as Samuel was residing in hypo city!! I did talk on the second day though, and for these of you that know me in real life will know that I don't like public speaking. That said, I managed to talk to over 60 people, and I actually felt ok about it. Although, two adults, four children travelling on a plane was not easy!! What came next? The Brighton marathon. Again, raising money for JDRF, I was absolutely thrilled with my efforts in the marathon this year. I managed to run it in 5hrs 22mins!! After the disappointment last year of hurting my knee at mile nine to say I was happy with this result is an understatement! So, I already have my place in Brighton for next year, and I have entered the ballot for the London marathon. So my challenge next year is if I get my London place I will run both marathons in one week. If I don't get a London place then I will aim to complete Brighton in under 5 hours. That's it, I will make more of an effort from now on!

Friday, 13 April 2012

Samuels 3rd diabetic birthday.

This occurred the day after our clinic appointment this year. It went by without any drama, he went to school and I was given strict instructions to buy sweets and take them into school for his friends. He is like the Queen and has two birthdays each year!! Basically anything goes on this day and he chooses what we have for dinner, which with Samuel usually involves the words 'take-away'. If you were to ask any parent of a diabetic child about this day you would probably get a mixed response. Some find it a really upsetting and traumatic, and others are more laid back about it. However, we all will use the day as a day of reflection. Three seems to have gone so fast, and although I remember his diagnosis as if it was yesterday it is hard to remember what life was like before. Everything is different now and we have learnt so much. I have a great network of friends, who, even though I have never met I know I can turn to for help, who understand, as they are in the same position. That said I also feel that I have so much more to learn and that we are only at the very beginning of this long journey. As yet, Samuel has never been ill, so I have not had that to deal with. He is not old enough to rebel as such, I can't wait for that stage, and at the moment I am in control. I know that as time goes on I will have to hand some of that control over, maybe on his 10th diabetic birthday. What I know for sure is diabetes keeps us on our toes, but another year can be crossed off, another one under our belts. One, where we can hold our heads up and say that it will not get the better of us, we are stronger, and every year that goes by, the stronger we get, because knowledge is power, and we are learning every day.

Sunday, 8 April 2012

Left clinic feeling a little disappointed

Well, March has been busy in the Warrington household with regards to diabetes. So what follows will be a series of shorter blogs because each event deserves a title of its own.

Let's start with clinic *sigh* I have to admit I came away from this particular appointment feeling a little disappointed. Despite the night testing, the correction doses and really trying hard to get ontop of Samuels random levels his HbA1c went up! Not by much, 8.4 from 8.0, but still it is going in the wrong direction.
Yes, I know it is only a number, and yes, I know it is not a big leap, but any parent with a diabetic child will tell you that this number is a big deal, well it is to us! This number is what we feel we are being judged by. Who won this quarter? Did diabetes win or did we? Diabetes did! Has all the hard work, the carb counting, correction doses paid off? NO! Do I feel like I have failed? YES!!
I should point out that absolutely no one in clinic makes me feel this way, this is my own personal battle, mummy vs diabetes!!

We came away with only one change and that is moving Samuels lantus back from morning to evening, which is causing me no end of trouble, I keep forgetting!!

The other outcome from clinic is that they are no nearer to providing pumps, well I say no nearer I think that they have made some progress, and apparently Samuel is top of the list to have one, so we will just wait a little longer.

Saturday, 25 February 2012

Night testing....what have I learnt?

Before I start this blog I want to make one thing very clear. This is not a blog saying that you must test, nor is it one saying that you shouldn't. Only you can decide what is right for you and your family. It is a very emotive subject and the cause of many a debate on some of the facebook groups that I am part of.

So, Samuel has been diagnosed almost three years, and up until the last month I wasn't night testing. I did it for a couple of nights when he was playing up with his machine at school but it has never been a regular thing. However, over the last few weeks he has been having the most random of levels, so I decided to start testing, before I go to bed, which is generally around 10pm and again at 2am, and it has been a real eye opener!

What have I learnt?........Well, I have learnt that 2am testing does not agree with me, and my ability to function as a normal person, by lunchtime I am now yawning my head off! Not good when I need to concentrate  at work!
Seriously though it has been really interesting. Samuels levels seem to rise between 2am and 7am, my thoughts about this are that this rise is caused by the lantus dipping during this time. We give Samuel his basal dose in the morning when he wakes. Also, when his machine works out any correction dose during these hours I increase it by half a unit.
The result is that Samuel has been waking with much better was 7.0!!! Woohoo