Friday, 17 September 2010

What would you do on your day off?

Every week there are a few days we all look forward to. Whether they fall at the weekend, whether they are nestled between Tuesday and Friday or even when they are dotted here and there, we all look forward to them. We make plans for them; we plan for a lie in, we plan to see friends, we go the the movies, we rest, we play, we enjoy.

But there is one thing that we as diabetics can never look forward to: A day off.

We may be allowed a day off from work, college or school. And we may enjoy all of the things that others can enjoy, no matter what our idea of fun is. But from the moment we wake, when our tired eyes open and take in the first snapshot of the day, we are planning.

The first blood test falls about a minute after waking. We pull back the covers, sleepy and a little unsteady. We reach for the light, flick the switch and begin our search. We find our blood testing kit and nervously prick our finger for the first, but certainly not the last time that day. The result of this test will tell us a lot about whether our bodies are going to be in a bad mood today. If the test is high, we have some damage limitation to plan. We must correct, we must hang back on breakfast, we must hazard a guess at what happened last night, we must wait. For this reason, the first test of the day is usually a nervous affair. Mine usually involves looking at the test with one eye closed - similar to how you would watch a horror film when you know you don't necessarily want to see the gruesome result.






The rest of the day trundles on; test after test, dose after dose. My food has to be weighed at every meal, my sugars analysed after each test. If I feel thirsty, I have to wonder why; did I bolus right at my last sitting, do I have a kink in my cannula, is my pump working.

There is no such thing as a 'day off' from diabetes. The closest we can get is not testing our blood for the day. Irresponsible and dangerous - it's but a break, if all else has failed and we just need a break. I think the last time I didn't test for a day was about 3 months ago, when I ran out of strips from testing too much the day before. Technically it was a forced holiday, but a holiday nonetheless.

But I often wonder about how things would be if there was a cure or even something close. How would my first minute of each day compare. When my sleepy eyes crack open, would I look forward to a morning run? One without the pre-jog blood test, sip of juice and portable supply of glucose tablets?

Maybe after I could tuck into a pancakes with syrup breakfast (even saying the word 'syrup' makes my sugars go up at the moment - God forbid some should ever touch my lips). But after tucking into that blood sugar-tastic breakfast for a king, what would be next?

I try not to dwell on these things too much, mainly because 'they' have been talking about a cure since I was diagnosed, all those 24 years ago. Quarter of a decade domineered by a disease which dictates many of my every day decisions.

I still don't know how I would choose to spend my first day off if they cured this disease.

How about you?

Tuesday, 14 September 2010

Compromise? If I must.

There are many things I have had to accept as a diabetic.

I have had to accept that until there is a cure, I will need to inject or wear an insulin pump to help me control my blood sugar levels. I have had to accept that blood testing, insulin pumps, injections and carb counting are going to have to be part of my daily routine, if I am to conquer this challenge. I have had to accept that no matter how small a part of me I once wished it would be, diabetes is a big part of my life, and indeed of who I am.

But there is one aspect of diabetes I have always struggled with: Food.

In truth I have never been the kind of person who takes instruction easily. In fact, if dictionary entries had faces of people who are a 'good example' next to them, I would no doubt be picked for several; stubborn, argumentative, opinionated and always right(!) spring to mind. And I'm sure my friends and family would most definitely be those who vote me in! If I could successfully argue that red was not red, I would give it a damned good try. The truth is I hate boxes. Not the kind my cats hide in, using them as some sort of feline fortress from which to attack passers by, but the kind that are often referred to as pigeon holes. You are this, you are that. You are diabetic.

But the fact is, while I always knew that I had to inject and had to carry out blood tests, food has always been the thorn in my side - because I love it. I have never felt hard done by when it comes to injecting. I have never felt as though blood tests were hard or unfair. They were just 'there'. Something which I show a bit of contempt for, each and every time my skin is pierced in the interest of the condition, but which don't really detract anything from my life. It is the only way I know.

But when it comes to food, and having to accept that sometimes you just have to say 'no', I have always swum against the current.

One of my biggest pet peeves is when people say to me, "are you allowed that?" I am not a violent person, but now and then some bright spark has caught me at a bad moment, and in the midst of my annoyance, which was being subdued somewhat by the fact that I was indulging in a much needed treat, I could have clean taken them straight off this planet!

But yesterday morning I had the final installment of my insulin pump trial assessment, with my wonderful but long-suffering DSN (Diabetes Specialist Nurse). I have been attending these sessions on a monthly basis since January, in order to review my success with the insulin pump. Something us Brits have to do if we want to successfully make the move onto the pump.

At the beginning of the trial, I had to work with the specialist team to set myself the targets I wanted to achieve by the end of the trial. Now some of these were personal targets, primarily set as a way of taking some emotional control over my diabetes. But some were physiological targets, such as lower my A1c and have less than one BS of more than 20mmol per month.

I have now successfully achieved 4 of my 5 targets. Excellent!

The problem is, that last little blighter always gets the better of me. It is always JUST out of reach. I have managed to lower the frequency of BS levels in the 20s by about 60%, which incidentally I am very proud of. But, on a monthly basis, there are always 2 or 3 which fall on exactly 20. No higher, but high enough.

Well, I tracked them back this month, and much to my horror (mainly because I had to accept that I was wrong - I know, can you believe it?), they were ALL on days when I had eaten something 'I shouldn't'. I'm loathed to say it, mainly because I want to prove all the judgmental onlookers who dare to ask me that question wrong, but I guess there are times when I really shouldn't have that.

Don't get me wrong, by no means am I planning on never having a treat again, and I certainly don't plan on allowing this revelation to change who I am. I will still argue that red is not red. I will still stand firm when I am asked what I think. I am still Anna.

But the fact is, if I wanted to get those sugars well and truly conquered, I think I now see that it isn't the end of the world if now and then, I let the diabetes win, and just say no.

I need to learn that treats are fine, but I have to experiment only now and then, so that I can find out exactly what and when I need to bolus, without sabotaging my monthly targets.

I guess you learn something new everyday.

I guess I can't win 'em all.

I guess it'll make the next time even sweeter - no pun intended!

Wednesday, 8 September 2010

Copied from someone elses blog! (Might as well be honest!)

OK, so the answers are mine, but I saw this on one of my favourite diabetes blogs and thought it might be a nice light hearted break!

What type of diabetes do you have:
Type 1 , Insulin Dependent,

When were you diagnosed: December 1986

What's your current blood sugar: 11.6 mmol

What kind of meter do you use: Medtronic Paradigm VEO

How many times a day do you test your blood sugar: about 8 times a day unless something is wrong

What's a "high" number for you: Anything above 12mmol

What's do you consider "low": Anything under 4mmol

What's your favorite low blood sugar reaction treater: Pineapple juice! It's the only time I can guzzle it (within reason!)

Describe your dream endo: Understanding, non-judgmental and patient!

What's your biggest diabetes achievement: I consider making it to adulthood with no complications and a scrap of remaining sanity, an 'achievement'!

What's your biggest diabetes-related fear: Kidney Failure. I don't know if I could cope with dialysis

Who's on your support team: J-Dizzle, the mothership, my best, my pump!

Do you think there will be a cure in your lifetime: Even though it has been talked about for years with no actual cure ever appearing, I remain hopeful that yes, eventually there will be. There seem to be new ideas forming and evolving every day. I live in hope.

What is a "cure" to you: um, a cure, how many ways around it are there....

The most annoying thing people say to you about your diabetes is: You just have to watch what you eat and inject right? Wrong.

What is the most common misconception about diabetes: You get it from being fat. I was four. I was tiny. I was healthy. I was normal.

If you could say one thing to your pancreas, what would it be: Last one to start producing insulin is a loser. GO!

Tuesday, 7 September 2010

Hope, fear or terror?

Just recently, I have watched and read three different forms of media, which have brought the matter of how to tackle young people not taking their diabetes seriously, well and truly into my thoughts.

The first, was a documentary recently televised on Channel 4 about the risks young people take with their diabetes. Shot from the perspective of the toll this takes on the NHS, this documentary received a markedly varied response primarily - it seems - dependent on what the 'watcher' was expecting to see.

The second was a blog post written by the person who - in part - got me blogging. A blogger from America called Kerri Morrone-Sparling. In her post she talked about the way in which fear of complications is often used, perhaps naively, as a way to 'motivate' people to take more care of themselves.

The third appeared tonight, via facebook, in the form of a link to an article about a 47 year old type 1 diabetic. She was also a triple amputee, having had both her legs and one arm removed.

I was about to hit the 'share' button on the laptop, when I realised; this article had terrified me, did I really want to share it? The first thing I did after reading it was check my sugars. But the truth is, the article led the reader very much down the 'it's too late now' route, so even though I'm glad to say my sugars were 5.9mmol (106mg/dl), the article had already convinced me that no matter how they were now, I may well have already done the damage.

I now have that heavy feeling in my stomach. About my weight, about the fact I've been drunk, have smoked, didn't go for a run every night as a teenager. About the fact I am human.

The truth is I realised something just as I was about to hit that button. I realised that there are many people in this world. All of whom have different characteristics and different ways of reacting to something.

For some, that article may have filled them with motivation. Motivation to get up tomorrow and pound the hell out of their jogging shoes. For me, the fear doesn't work. It never did. Truth is, the article made we want to go out, get drunk, smoke a packet of cigarettes and give up all together. Just for a second.

I won't, but only because my attention span is matched only by high functioning amoebas and in all honesty, I knew I could run to my blog and anonymously (sort of), write down all my thoughts and allow them fall onto the screen.

But what about those kids in the documentary? If I had read that article as an angst filled teenager struggling enough to come to terms with the feelings puberty was throwing at me, I would probably have ended up in tears and considered ending my journey. What is the point - if the cards have already been drawn, if the chips are down?

I think I realised tonight, that I am very much in the 'anti-fear' camp. Telling someone that the disease which has already claimed such a marked percentage of their lives that if you don't take PERFECT care of yourself, it could also take both of your legs and you arm, is surely enough to make the strongest person withdraw and hang up their gloves for good. Or to at least send them into a mild surge of depression.

My motivation right now is the fact that one day I hope to bring children into this world; healthy children who can do all the things I could as a child. But more than that, my hope is that I will grow old to see them start play school, junior school, secondary school, college. I hope to see them fall in love, see them fall out of love, watch them find themselves. Hope.

The key word there is hope. I look after myself, because of HOPE. Hope isn't driven by fear or terror. It is driven by positivity and ambition. Perhaps I am naive to hope that I will still be in one piece similar to this one by the time my life draws to a close, but my vision of my future is based on me as I am now. If I was using images of myself with no arms or legs, kidney failure and blindness, what is there to strive for? Being able to feed yourself at the age of 50? Being able to walk at your child's wedding? Being able to get out of bed without help?

The truth is for me, hope is the only way I motivate myself. I know that this isn't the case for everyone, and that some people need that image of a amputee to spur them on. But I wonder how many people, realistically, who are already dealing with their fair share of challenges, are really able to look at that, and not allow it to fill them with fear and dread?

Am I the only one to feel troubled?

For me, hope comes in the form of a cure. That is the plain and simple fact. I know that doesn't reach out to everyone and I know that it is at best still just a dream. And I have no doubt that if by the age of 45 I have had to have legs and arms amputated, I will also be trying to spread the same message I am now arguing as problematic. Perhaps motivations and inspirations change through time - as we grow and change.

Whatever the case is. For now, I will store that article at the back of my thoughts. Tomorrow I will have a good day, because every new day brings a new chance. Maybe I'm already damaged, maybe I'm not. Right now I choose NOT!

That is my hope.