Wednesday 14 September 2011

Kinky - but it ain't the good kind!

There aren't many things about the insulin pump I don't like; mainly because it is a genius invention which hundreds and thousands of us diabetics rely upon to make life easier, give us a more normal life, make us feel more in control but mainly because it means I stand much better of chance of keeping my extremities attached. Just the way I like 'em!

There are hassles, including finding places to hide it in a skimpy dress, catching the tubing on a door handle as you rush through it only to be pulled back in a cartoon-like way and becoming almost dog-like in your ability to distinguish one beep from another. But there is one hassle which I simply despise and unfortunately, is one of the very few drawbacks of a pump which can't be controlled. Kinked cannulas.

Even the words will probably make those diabetics out there reading this shudder. Not only does it impede your ability to control your own levels even if only for a few hours, but there is also no way of knowing it has happened until your BGs are horrendously high and you're feeling like a crack addict going cold turkey.

So many times I have been asked what a kinked cannula actually is which is understandable considering unless you have diabetes and an insulin pump, you probably wouldn't know what a straight one is, so this post is about explaining it to anyone who has either never had it happen (well done!) or those who don't wear a pump.

The cannula, which is the part of the infusion set which goes into the skin, is how the insulin gets in. Once it has been inserted, the adhesive tape keeps the set in place and the cannula (a tiny thin Teflon tube) allows the insulin to enter your system and do its thing.

It should look like this:

Now the plastic bit at the top is where the tubing which carries insulin from the pump to the cannula, connects. The material is the adhesive 'pad' which is what keeps it all attached and the tiny Teflon tip will be under the skin and allows the insulin to enter your body.

Unfortunately when a cannula kinks, it looks like this:

Now this tiny little change which to those who don't pump probably looks like no big deal, is one of the pumping community's biggest frustrations. This kink will mean that very little - if any - insulin can enter their system. Despite its name, the pump doesn't actually vigorously pump insulin into the body. Mine in particular very gently 'drips' insulin into the body. So unless I bolus (give a dose for food, for example) a large amount, in which case my pump will alert me to tell me that something is not allowing it to release the insulin, I won't be any the wiser. This is particularly the case when I go to bed a time when I won't be giving any large doses - and means that I will wake up at around 3am with BGs of 20 or more and feeling extremely ill as I did this weekend. Thanks to the pump meaning I have far less 20s these days, it also means that those 20s I do have feel a lot worse.

The problem is, as you can see, the bit which can bend (and to this day I still do not know why) is under the skin. As this is a disposable set, the first I will know of it is when it come out of the skin; and a whole new set is required.

Well there you have it. Unfortunately I have no wise words or positive vibes to end this one. But this was more to explain what they are, and what they look like. Hopefully it will make it easier to understand next time one of us is moaning about a kinked cannula, how they happen and why we can't avoid them.

Thursday 8 September 2011

Diabetes just sometimes happens

I have two distinct memories of being diabetic as a child. During one memory, which must have taken place shortly after my diagnosis, I am sitting on my parents bed, legs dangling over the side. My feet don't even touch the floor because at 4 years old, I am but a pint sized person despite the enormous weight I have just been told I must carry; diabetes. My mother is one side of me, my father the other and my younger brother is peering over my shoulder. I am doing an injection in my right thigh with one of those crude hypodermic needles which strike fear into the hearts of those diabetics who have had the condition long enough to remember life before the swanky pens or even more space-age insulin pump. i remember it feeling huge in my hand as I clumsily tried to navigate the needle into my leg. I remember being very proud of this moment when everyone was watching me do my injection, on my own, for the very first time. I remember everyone making a really big deal out of it and saying how impressed they were. I'm not sure if I realised at the time that the pin pricks would continue for the rest of my life, but I remember feeling impressed and a little smug, because I was the only one there who got such praise.

My other memory is lying on a table at the kindergarten with my German best friend, Davina peering at me with a terrified look on her face, because I have clearly lost consciousness. I remember the hallway where I lay being empty except for us and in my memory, very dark. With us is a person - a man, I think - giving me a Glucagon injection (something which causes the liver to release large amounts of glucose) which is used to bring a diabetic around when they suffer a severe hypo. If I close my eyes I can remember it all. Even how I felt; tired.

These two very different but very clear memories will no doubt stay with me until my mind lets me forget. I don't feel any overwhelming sense of anything when I think about them, but the very different memories highlight that my childhood wasn't like other people's I knew. Four year old children don't normally pierce their own skin with an inch long needle, or need to worry that going to school in the morning may be followed by a lift home from hospital that night.

But all being said and done, there is one truth which shines through when I think of my childhood. One thing for which I am eternally grateful -mainly to my parents - because it is clear to me now just how hard they worked to achieve it. And this is the fact that my memories of having diabetes as a child are few and far between. They do exist, but today diabetes dominates an enormous amount of my time and energy. It demands a huge part of not only my own, but of all the lives of my loved ones. There is never an hour in the day which goes by where I don't think about a blood test, a high blood sugar, the next meal or whether my pump is hidden.

When I was a child however, I remember very little about my diabetes. Instead, I remember playing cricket on the grassy area outside my house - I was always wicket keeper, because I couldn't throw - or catch - particularly well. I remember when I was about 6 I climbed a tree in the garden so high that I cried because I was too scared to climb down. I remember melting chocolate on the radiator in a pan with my older brother and being there for about 45 minutes because as it turns out, radiators don't heat pans all that well. I remember lying on a mattress with my younger brother, while my older brother folded it in half and jumped on us, because this kind of clumsy, violent fun was what made us giggle the most. I remember Christmases, Birthdays, swimming. I remember pretending every horse we drove past in a field belonged to me. I remember trying on shoes which were way to big for me and wondering if I would have shoes like this one day.

I remember being a child. And I remember that diabetes sometimes just happened.

About three weeks ago a friend of mine told me that she had managed to get a job in a school working with two young children and that these children both had type 1 diabetes. She told me that she would be 'looking after them' and was going to monitor what they ate and give them their injections. In truth at first I wasn't quite sure what I thought of the idea, seeing as the way I was given a 'normal' childhood was never to make an issue of my diabetes. It was something we dealt with, but never highlighted. I didn't have someone watching my every move, I just got on with it.

The thing is - and I know this now all too well - I did have someone watching my every move. I had parents, teachers, friends. My parents already had knowledge better than most professionals, about the workings of the body and how their daughter 'worked'. Do you know how your child converts food into glucose? My parents did. My friend will.

It is only because I had other people watching over me and taking away that responsibility, that I was able to build ten million more memories about horses and melting chocolate, than I have about diabetes. That I can look back and say that diabetes didn't take anything away from me. Because my parents took it away for me.

When I talked to my friend today as she eagerly told me about the carb-counting course she would be put on, the injections she would be trained to give and the psychological awareness training she would receive, to help her fully understand the emotions these two children may go through, I realised just how lucky these kids are. Because for them, they now have someone watching over them at school and allowing them to remain children. It means their parents need not worry. They can scuff their knees in the playground with friends and imagine they own pets their parents won't really let them have. They can go home at the end of a day to a parent who is a bit less stressed because their child is in good hands.

We've come a long way since I was young and now we appear to be recognising that having someone take away the incredible responsibility there is in taking injections, doing food calculations and worrying about that next blood sugar, is what allows our diabetic children a shred of the innocence that other children are just awarded.

I don't remember there being a specific person looking out for me at school. I am lucky that my parents just managed it all, somehow. But I ended today feeling thrilled, because I know that there are two very lucky children out there, being allowed to live their lives. My friend will take away some of that responsibility and will make some of the decisions they are too young to deserve. Just as my parents took it away from me.

I know that we are not yet at the point where every school can do this and I certainly don't think that my childhood was lacking in some way. But to see the world moving on and beginning to provide this level of care for at least some of their precious children, gives me a huge sense of achievement. Those children will hopefully just look back one day and remember that lady they used to work with at school. The one who encouraged them in their school work, made them giggle and occasionally, gave them an injection.

They can go on to remember that when they were a child, diabetes just sometimes happened.