Monday, 30 August 2010

It's the small things which leave the biggest impressions

About a month ago, I started turning a small piece of wasteland at the far end of my mum's garden into a vegetable patch.

Call me old - but I love growing things and people pay good money for a small plot of land like that - why not make the most of it!

Anyway, I was there a couple of weeks ago, digging away and plotting which vegetables would grow best in which spot, when suddenly my supernatural powers kicked in. My 'spidey senses' as a friend once described it. I felt hungry, but not in the 5pm pre-dinner way, but in that 'my sugars are dropping' way which no diabetic can mistake.

I whipped out my accu chek and tested my sugars.

Yep, 3.1 mmol, time for a break. I realised I had not packed an orange juice (*hangs head in diabetic shame*) and headed into my grandmother's apartment (they all live together, a little like the Walton's only without the funny names).

Now my grandmother is also a diabetic, but she is type 2, and although she watches what she eats and takes a tablet once a day, she would openly admit that diabetes has not really changed her life a great deal. She knows she has it, but as long as her yearly checks come back OK, she doesn't let it bother her. She doesn't test her sugars (at the doctors request), she still enjoys all the things she used to, and she doesn't have hypos or hypers.

The fact that I wear a pump and have to glug away on a carton of juice at such short notice, always seems to freak her out a bit. She doesn't really understand what a hypo is or how it feels. And I am quite happy for her not to know. I'd rather that than thinking of her shaking and panicking.

So I went to her and asked her for a cup of water with three teaspoons of sugar in it. She looked a little concerned, but tried her hardest not to let it show. She must have checked on me every 15 minutes after that, just to be sure.

But last week, I was coming to work on the garden again and Nanna was going to be out. She let me know where the key would be and she advised she would leave the garage open, so I could get to all the tools.

When I arrived, I busied myself getting all the pitchforks and shears out. But before I could make it to the garden, something caught my eye.

Because my Nanna is possibly one of the sweetest people alive, she had left in the garage, what I can only describe as a 'Diabetic's survival kit'.

There was a mars bar, parked next to a diet coke, a bag of sugar and a cup of water.

She knew that she would be out and there isn't a spare key to the house. So before going about her day and doing what she needed to. She first made sure that in the event of any wayward sugars, her grand daughter would be safe.

Something that small, has stayed with me for weeks and still makes me smile when I think about it.

Thought that might make someone smile.

Monday, 23 August 2010

I don't know how you did it

I've suffered from a touch of writer's block (or should that be blog?) for a couple of weeks now and it is isn't because I had nothing to write about. Far from it! All those with the condition, or those who know someone with the condition, will know that every day with diabetes brings some degree of challenge. Some days its 10 degrees, some days its 90, every now and then its 360! Since I last posted there have been high sugars, low sugars, ignorant comments, news articles and countless other prods which would normally provoke me to write something about them. Usually in the form of a rant.

The truth is, I have spent a lot of time recently reading other blogs. Those written by my friends, those by 'famous' (...well, kind of) diabetes bloggers and those I have stumbled across while aimlessly surfing the diabetes inter-wave. Whilst doing so, I have been stumbling across many posts about something I know nothing about. Not that I am an expert per se, but having had type 1 diabetes for 24 years, I know a thing or two about this disease.

I know what it feels like to be high. To feel my muscles screaming at me and moving as though I am trying to traverse through thick tar. To feel the unquenchable thirst, scratching at the walls of my throat.

I know what it feels like to be low, shaking, hot, confused and weak.

I know what it is like to wear a pump. To tug on the tubing occasionally, to have to run home at lunch because I ignored the 'low resevoir' warning.

I know what is is like to have days when everything goes right. The sugars are in check, my injections don't hurt, my fingers don't throb.

I know what it's like when they don't. The tears, the pain, the frustration and the fear.

But there is one thing which I have yet to experience. In truth I hope that I never will, but the fact is the possibility is there. Increased ever so slightly by the fact I have diabetes.

When I was a teenager I never gave a thought to how much my disease hurt my mother. At the time I was filled to the brim with teenage angst. Angry at the world because I wasn't taller, slimmer, more like Jennifer Aniston in the 'Rachel' era. I wasn't more popular, my teeth weren't whiter, I didn't have as much money as my friends, Brad Pitt hadn't swept me off my feet yet (I'm still waiting on that one - it will be any day now).

Why wasn't it easier? Why did I have diabetes, yet every one else I knew escaped it.

It was so unfair. Everything was so unfair - for me.

But the truth is, my mother did have diabetes. And it hurt her more than any of the pain I felt. Every time I sat down to dinner and didn't test my sugars first. Every time I lay around on the sofa instead of going for a walk. Every time I ate sugary foods and just 'shoved in' another bolus. Every time I told her I didn't need her help when she asked if my sugars were OK.

Every time I pushed her away.

I have now reached the point in my life when children are on my mind. I am due to get married, am in a secure job and my health is better than ever. Things are good. But there still remains the fact that when I do decide to have children, there is an increased risk that they will develop type 1 diabetes.

Granted, there is a 1% chance of ANYONE developing type 1 diabetes, and having a mother with diabetes only increases this to 2%, according to the textbook. But you and I know the textbook isn't always the best measure to go by -I know too many diabetics with type 1 who end up with children who develop type 1 - for me to believe the chances are only 2%.

The chances are, my children will develop type one. It's not a given, but there is a chance. The fact is, only now for the first time in my life, do I even have an inc ling of how incredibly difficult it is to care for a child with diabetes. It is the hardest job there is, as far as I am concerned.

Perhaps when they are younger and you have more control over them, the biggest challenges might be squabbling over not wanting to have another shot, which eventually, thanks to your excellent arguing skills and 'I won't back down' attitude, you will win.

But what happens when they reach their teens. When they stop doing blood tests, when they stop taking insulin.

When they are admitted to hospital with more tubes protruding from their perfect body than you can count, as you see them there - struggling.

I knew what risks I was taking. I know them still.

I know that sugary food, no matter how well weighed and calculated, will still have an effect on my body. I know that rather than writing this blog, I should probably be out getting some exercise. I know grapes don't do me any favours, but I like them so I will eat them anyway and hope I got the bolus right.

How parents cope when you don't know what your child is doing, I will never be able to understand until I face the same hurdles myself. How will I cope? What will I say? Will I be able to instill a sense of responsibility into my child, so that even when they hit those turbulent days, they will still take their insulin and test their bloods, even if it just now and then.

Having to watch you child inject and accepting that they have to, because there are no two ways about it, is something I cannot yet understand. Knowing what is is like to worry constantly about anything above ten or anything below four, is something I cannot yet understand. Hoping the pump does its job, and keeps your baby safe for another day, is something I cannot yet understand.

But for the first time in my life, I am beginning to realise how unbelievably brave and dedicated you are. Not you, the children who have diabetes. But you, the parents who go up against diabetes. Who spend every day on the battle field, armed with injections as your weapon, insulin as your sheild, and scales as your steed.

You, Angela, Roxana, Sheila, Lorrie, Clare L, Claire M.

But most of all, You - my mum.

I wish that just for one minute, I could go back and say "Thanks Mum."

I know you don't want to be thanked, I know you don't need to be thanked. But it is only because you took such precious care of me, that I am now in the position that I can start a family of my own.

Thank you mum, you are the bravest person I know.

It's a little late, but I think I am starting to understand now. I understand why you got on at me to test my blood. Looked concerned when you knew I'd eaten more junk, but had no way of knowing. Why you looked hurt when I just scoffed if you asked me had I done my injection.

I hope that if I have a child, they will understand that it is because I care, just as you do. I hope that they will realise why 'now' is so important, just as you do.

I hope I will do what you did mum - it worked, even if it felt at times as though nothing was going in. Deep down - I was listening.

I love you - my diabetes shield.

Tuesday, 10 August 2010

Remote controlled semi-robot

I had a post ready to publish today all about a very serious issue. It is an issue which a few months ago I would probably have shrugged my shoulders at. An issue which I never really considered and never really thought too deeply about. Perhaps I have developed a bee in the bonnet because I now talk to other diabetics on a regular basis and have been given something to think about. Perhaps it is because I too have become frustrated about recently. The issue I was all ready to post about - and subsequently no doubt deal with the backlash from - was the issue of people using the blanket term 'diabetes' when talking about the disease. In doing so often attributing incorrect assumptions to one type of diabetes. Like talking about weight being a contributing risk factor for 'diabetes'. In fact weight is totally unrelated to type 1 and the frustrations which come with that and the confusing messages and poor education which then reach the public is something I have become more and more concerned with.

The problem, something happened today which took precedent over the education thing, and that is:


I know, cool right???

As much as I love having a good rant and expressing (I hope) an intelligent opinion about more serious and important aspects of diabetes, I also love the lighter side of it. The side when I can write about how girls have it better because we can hide out pumps in our over-the-shoulder boulder holders, or how I get a little kick out of putting a new skin on the pump and in doing so jazz it up a little. These little anecdotes may not change the world, and they may not educate anyone about anything, there has to be a lighter side to diabetes - whichever type. There has to be some silver lining somewhere and if you achieve a little chuckle while you are at it, then you are already winning the battle.

I usually store my pump in my bra - mainly because it means I can hide it without anyone have a clue where it is - a grasp at 'normality' I suppose. But there is one drawback: When I am sitting next to my boss at work or in the middle of a meeting, grappling around at my chest and pulling wires and pumps out of my bra is perhaps not the most professional behaviour I could be displaying. It doesn't give the best impression of me and certainly draws some stares. Many people know that I am diabetic but unless they ask, I don't tend to share the fact I am on a pump and very few are privy to the fact I store it between my knockers. As such when I do start fiddling with my bra, it looks pretty odd.

I told my DSN about this and she mentioned to me that Medtronic have a remote control ( I know - could have told me sooner!) that can be use with Medtronic pumps! You can't use the Bolus Wizard with it - which is the function when you can put in your blood sugar levels and the pump will make a dose suggestion in order to bring you back to your ideal level - but it does mean that I can give myself a bolus without even having to fondle inappropriately with my bra anymore! Whoop!

I contacted Medtronic and asked them how I could buy one. They advised a very pleased me that in fact they offer them free of charge. Thrilled at the thought of a new piece of kit to try out and the notion that there would be no more uncomfortable moments at work, I was avidly waiting its arrival. And there it was this evening, new and shiny and ready to be played with today.

It is a very simple device really, with just three buttons to mention. It has a 'B' button (Bolus) which allows you to draw up how much insulin you want, an 'S' button (Suspend) with which you can suspend the pump and an 'ACT' button, which all those who are familiar with Medtronic pumps will recognise as the button you have to press when asking the pump to perform any kind of function.

The first thing to do before you can use it is to enter the code on the back of the remote into the pump. The reason you do this is to make sure that only your remote controls only your pump. I mean, can you picture the havoc caused if every remote talked to every pump! Granted, I am the only person in my office on an insulin pump, but what if I went to lunch with my pump buddies? Or worse still - went to a pump convention?! I can just see it now, diabetics dropping like flies left right and centre because we all ate lunch together. I can just see the headlines:

"450 diabetics commit mass suicide by dosing 4500 units of insulin during pump convention!"

It may sound entertaining but in reality, it is VITAL that only your remote controls your pump. That is the purpose of the ID number on the back of the remote.

Once this is done, your remote is up and running and ready to go. All you have to do when you want to bolus any amount is hold the 'ACT' button down until it flashes and the pump 'beeps'. This means the pump is 'awake' and ready to go. All you do now is press the 'B' button for however many units you wish to deliver.

Now as a default, the 'easy bolus' function on the pump is set to 0.1 units at a time. The problem with that is that if you want say, 7 units, you would have to press the button - which in turn causes a 'beep' - 70 times!! Slightly annoying if you are mid-meeting. But luckily the easy bolus function can be adapted, meaning you can set it to increase at a rate of whatever you like. I have now adjusted mine to scroll at a rate of 0.5 units at a time. So when I press my 'B' button, it will rise at a rate of 0.5 to 1.0, 1.5 to 2.0 and so on. This means I can still have reasonably precise doses (still vastly more precise that injections) but only have to press it twice per unit of insulin I want. Once you have selected the number of units you want, you click 'ACT' again. The beeps are then replayed (just to make sure you have the right amount), and if you hit 'ACT' again, it begins to bolus. It is as easy as that.

It also comes in the form of a key-ring, so I can keep it on my set of keys (probably the one place I won't lose it) meaning I have easy access and am likely to have it wherever I go.

Well let me tell you - it's been great so far. I'm sure I will get bored of using it at some point and will just use it when I am in public, but with a new 'toy' to play with I am one happy cat. It will take a little while to get confident with it, seeing as I can't actually see what I am dosing, but provided I am concentrating there should be no hiccups. That is one of the reasons I have chosen to set the scroll rate 0.5. As long as I don't decide to fiddle with it, there should be some sort of limit to what I can ask it to deliver!

Anyway, any day now I will post my 'serious' post, but for the meantime I wanted to share something a little more light hearted. And for all those Medtronic users, give 'em a call, there's a remote control waiting for you to play with!