Saturday, 30 July 2011

End of my rope....

As a rule I try and make my blog entries positive and upbeat, much of what I write has sad and serious undertones, but generally I am a positive and just go with the flow. I can't change the fact that diabetes took up residence and inflicts itself on not one, but two of my family members, it is what it is.
However, I find myself in a dark place, and quite frankly am not happy. I have alot going on in my head at the moment and it's not a good place to be but unfortunately you can't ever escape from your thoughts, especially when it's the middle of the night and there is nothing else to focus on.
Samuels levels are out of control in my eyes. He is constantly running high these past few weeks and I can't seem to get them down. I am a control freak and can't bare not being able to control it. It doesn't help that it is the school holidays and the normal routine is out of the window and in it's place is lay ins and laziness. If he could he would play on the playstation all day! This is a constant worry for me as we all know that it's the constant highs that cause the long term damage.
I am tired of it all, and I sit and write this in the half hour I have spare at work I feel sick and could cry. For probably the first time since his diagnosis I find myself asking why? Why did it have to be him? Why is our live now ruled by numbers? High levels, low levels, carb values, insulin doses it is endless. I don't want to keep saying no, and I want him to be care free like his sisters. I want him to run around like a loon and it not make him feel poorly because his levels have dropped. I want him to be able to have a bag of crisps just because he wants them and not to have to look at the clock to see what the time is or what his level is. I miss the days when him and Olivia would get up before us and raid the biscuit tin!! Or, if we decide to go to the park we just go, we don't have to plan for hypos, and don't get me started on birthday parties!!
I realise that this all sounds silly but sometimes it's the simplest things that get you down. Over the last couple of days since I started to write this blog, things have happened to people I know that are truely tragic,a nd it makes me realise that things are not so bad.
So... Onwards and upwards and as Franklin D Roosevelt said "When you get to the end of your rope, tie a knot and hang on."

Monday, 25 July 2011

My panic at work...

For those of you that don't know I do actually have a job. I work at UCLH in pharmacy. Much of my time is spent in the cleanroom which is a controlled area. We make aseptic products such as chemotherapy, IV antibiotics and TPN. Whilst I am working in these areas obviously I don't have access to my phone. For most people this would simply be a mild annoyance, but as a mother of a diabetic child it causes me a huge amount of panic. I like to be near my phone just incase there is a problem at school, especially around lunchtime. I do tend to keep my phone in my pocket, so that although I can't always get to it straight away, at least I know that it has rung, if that makes sense. However, the fact that it has rung and I have missed it also panics me.
Take Wednesday last week for example. I am working in the chemotherapy cleanroom and my phone begins to vibrate in my pocket. I glance at the clock and it is 11:30. My immediate thought is that there is a problem with Samuel. It is almost lunchtime and I know that they were going to test early because they were going to another school for the afternoon. Is his bg level too high? Have I forgotten to sign the dose book? Have I forgotten to even write the dose in? For the record I have actually forgotten .....TWICE!!!!!
A couple of minutes pass and I am starting to panic. I have to find out who called, I can't ignore the fact that it rang, I have to get out of the cleanroom!! What you now have to realise is that I have three layers of clothes between me and my phone. I have my normal clothes on, then I have the firstblayer of sterile clothes. This consists of trousers and a top which actually resembles a pair of pjs. On top of that I have a rather fetching blue all in one suit, boots, a hood, a mask and a pair of gloves. I am sure you have a rather fantastic mental image of me right now!! Anyway, if that wasn't enough I have three lots of interlocking doors to get through. Finally I reach my destination, the changing room, and I look at my phone. It's NOT the school, but it is a local number. In my mind though it could still be school, they have several numbers and not all of them are in my phone memory. I try and call them back I have no credit! I text my husband to ask him to phone me, which he does and I explain what has happened, so, he called the school to see if was them who had called. Thankfully, this time it wasn't the school, so I got myself a new suit and went back into the cleanroom to finish the session.

When Samuel was diagnosed back in March 2009 I was on maternity leave. I struggled to get myself back to work. My Gp signed me off for four months with anxiety and depression, I truly felt that I could not leave him. In September it will be two years since I returned to work, and it is no easier now, than it was back then. I work in London and live in Essex, it task me over 1 1/2 hours to get home from work. So, three days a week I get on the train and I go to work, and I try to push diabetes to the back of my mind, if only for the six hours I am there. However, the anxiety is there waiting in the background and every once in a while it raises it's head and comes crashing in, in the form of a phone call!!

Sunday, 24 July 2011

School trips...The 'red' box..

The school trip is something that the children look forward to. The chance to get out of the classroom for the day. The chance to go on an adventure! That's true for Samuel, as long as you take the 'red' box. What's in the 'red' box? I hear you cry, tell me more!
The 'red' box holds all of Samuel's supplies, things that we need to take with us wherever he goes.
It contains:
  • Blood testing machine.
  • Spare box of testing strips.
  • 2-3 cartons of fresh orange juice.
  • Packet of biscuits.
  • Hypo gel.
  • Glucagon.
  • Insulin pens.
  • Spare needles.
Obviously, depending on where we are going I take a variation of the box. I wouldn't take all of that if we were popping to the shops, I would probably only take his machine. Although, being the forgetful type that I am I often forget to even take that!!

I have been on two school trips this week. The first was with Samuel, the rest of year 1 and reception. We went to the beach, and the trip involved lots of walking. Now apart from the worry that we might misplace a child, as they do like to wander off, the worry was that all the walking would initiate a hypo. It was ok though because I was armed with the 'red' box, just in case. Thankfully nothing was required from the box all day, well apart from his injection at lunchtime, oh, and a couple of biscuits for me, as in the excitement I hadn't made myself any lunch and I was starving!!! Samuels levels actually were on the high side, probably due to the excitement of going on a double decker bus and a train! Oh to be 6 years old!
The following day I went on a school trip to the zoo with Olivia and fellow years 4 and 5s, and minus the 'red' box. This was a much less stressful trip food wise. Although spending the whole day at the zoo with eleven 9 and 10 year olds, with too much attitude for my liking brings a whole different level of worries and stress.

On reflection, if the truth be told I enjoyed both trips, even if I did look like a pack horse with everything I was carrying on Samuels. All the children on both trips enjoyed themselves.
School trips are an important part of learning, and the children gain so much from them. Having type 1 diabetes obviously complicates things slightly, but its not impossible. All it needs is a little more planning, and me, armed with the trusty 'red' box!

Sunday, 17 July 2011

All in the name of research (D-GAP)

Monday 11th July I took my two youngest daughters, Victoria 4, and Elizabeth 2 to have their blood taken for the D-GAP trial. I have mentioned this trial before in a previous post, but if you haven't read it, which in itself is quite frankly shameful! Where have you been?! I will explain it again.
D-GAP stands for Diabetes - Genes, Autoimmunity and Prevention. It's looking at the genes and the immune system of siblings of diabetic children who were diagnosed under the age of 16 years. The trial involves taking two samples, a saliva sample which gets sent to Cambridge where it will be used for the study of genes relating to diabetes and it's complications, and a blood sample which will be sent to either Cambridge, London or Bristol. Here the white cells in the blood which determine immune responses and chemicals such as auto antibodies which could relate to diabetes risk will be studied. So, that's e science bit taken care of.
Olivia took part in this trial last year and her results show that she has two or more of the four antibodies. This means that she has a 1 in 5 (20%) chance of developing type 1 diabetes in the next five years. Now being the 'geek' that I can sometimes be I was very excited to hear that D-GAP had arrived at my local hospital, I was even more excited to discover that they had dropped the age from 5 years to 18 months!!! This meant that both my girls could take part, I would get results and be able to compare my three girls!! I was beside myself!!!
So, I made the appointment with the trials nurse, Kelly and off we set. I had tried to explain to the two girls that they were going to have their blood taken, and that they were doing it for Samuel, thankfully they were both happy with that.
We arrived at the hospital with some time to spare, which is most unlike me as I am usually late! My mum had come with me so that she could entertain one as the other one was being tested. We were met by two lovely nurses Kelly and Vicky. The all important 'magic' cream was applied to both girls and they waited with colouring books in hand whilst their medical history was taken and I signed the consent forms. This did take slightly longer to complete than it should have as anyone who knows me well, knows I like to chat!!
The time finally arrived for the blood to be taken, Victoria was up first. Now, we had decided that we would play rock, paper, scissors to distract her whilst the blood sample was being taken. Vicky was armed with bubbles.....what could possibly go wrong? Well, actually quite a lot. Victorias viens were not playing ball at all!!! The blood point blank refused to flow. Kelly was trying her best to get the sample without hurting Victoria, who was bored of playing rock, paper, scissors by now. I was sitting there thinking that it wasn't going to happen. We were not going to get the sample, she wouldn't be able to take part, and I wouldn't be able to compare my girls!!! Bugger!!!!
However, that was not the case and with careful manipulation of the needle the blood began to flow....success!!! Victoria, by this point was looking very sorry for herself, but two plasters, two stickers, a packet of iced gems, juice and some bubbles soon fixed that.
One down, one to go. It was Elizabeths turn. As she was that much smaller than Victoria I sat her on my lap. My first thought was that this was going to be stressful, and Elizabeth was not going to allow it to be done, but she surprised me. She sat on my lap and didn't make a fuss. Thankfully her veins were much more cooperative and the sample was taken with far more ease. Elizabeth also came away with a Dora plaster, a sticker, some chocolate and the all important bubbles.
Kelly gave me the bottles for the saliva samples so I could do it at home as the blood tests had taken so long, and we went on our way. Getting that sample was a whole lot harder than collecting their blood. Trying to get both girls to dribble, so that I could collect it with a swab was NOT easy. Anyway, I managed it, the samples have been posted and now we wait.
The results should be back in about three months, and I for one am very excited to see what they are.

Without trials like this how are we ever going to find out the reason why so many children are being diagnosed with type 1 diabetes. I am very proud of my girls for taking part, and we all hope that one day we may find that all important cure.