Monday, 20 December 2010
I know that at this time of year it becomes pretty commonplace for everyone to start reeling off their Christmas wishes as if you have all the time in the world. I know you have a sled to oil, a workforce to motivate and presents to wrap. I know you have reindeer to exercise and maps to plot. I bet there are a few more people in the world than last year, so I expect you are mighty busy.
I know that people often contact you about things which are a little out of your remit, like Jamie, who I know has already sent his letter to you asking for a Porsche. Any colour but yellow, as I am frequently reminded. One of these days you could slip a Matchbox version into his stocking, just to keep him quiet.
I know that children are the most important people at Christmas, and that you have to get busy acquiring all those snazzy new electronic toys. I remember the Buzz Lightyear saga, back in the 90s, when parents trampled one another to get the figurines in Toys’r’Us because apparently you had run out. I was too old to care for it really, already in my teens and more concerned with make up, shoes and the Backstreet Boys (yes, I know, but I was 13!), but I still remember the news, and remember thinking how crazy it was that anyone could want something that much. I’m not sure what it is this year, but I bet it is a damn sight more technical than Buzz was!
The thing is, what I want won’t take much to wrap. It doesn’t need bows or pretty paper. I don’t want anything more than the next person, in fact, it is a lot less than a Porsche! Mine won’t breed jealousy, envy or greed. Mine is simple, but it would make my year.
I, would like a day off.
Today I woke up high again. I left my breakfast because I wanted to see my sugars come down.
I waited a long time.
Today I did 9 blood tests, most of which were out of range.
Today, I had my third eye appointment of the year, where the drops they put in my eyes make them sting, lose my sight and dappled red.
Today I had every sugar from 6-15.
Today, I felt tired because there is no such thing as a day off.
All I want Santa, is to be able to wake up, brush my matt of a hair into some sort of style, eat my breakfast and get on with my day.
All I want Santa, is to be able to eat a meal - any meal – without first testing my sugars, doing around 3 calculations and taking yet more insulin. Without having to test them again two hours later, no doubt disappointed with what I see.
I would love not to have to worry today. Not to worry about the blood sugars. Not to worry about what cost that mince pie will have, both today and in ten years.
Not to worry full stop.
If I could have one wish from Santa, it would be this. One day off.
Are you listening, and did you get my letter?
Friday, 10 December 2010
Saturday, 4 December 2010
In November, I received my letter from my specialist to advise me that I have been successful in passing my insulin pump trial and will be continuing with this method of treatment.
I'm not sure there is a word in the English language to describe the feeling - but elated, ecstatic, thrilled and thankful are some of the words that come close. All the hard work has paid off and Maggie (my pump) and I will continue to be partners in crime for the indefinite future, something I [and all my nerve endings] are very pleased about.
Appart from the obvious benefits of completing the pump trial (improved BGs, flexibility, reduced complications, reduction in needle jabs et. cetera et. cetera) the other benefit of getting to this point and finally passing the trial is that I now have a little choice about the kind of pump I can have. I have already blogged enthusiastically about the first day of the trial, when I had attended the hospital to plug into 'The Matrix' for the first time, and saw the Medtronic Paradigm VEO sitting in front of me. I had been aware that my hospital in the past had always used the Accu Chek Spirit, which looks a little like this:
Now generally, most insulin pumps look roughly the same, but I really wasn't taken with this one. I had seen it and held it once in person and for some reason felt it was somewhat 'clunky'. Perhaps this was because I was still unsure about pumps in general and this was the first I had seen up close. But also because I had also done a lot of research into different pumps and had always come back to one; The Medtronic Paradigm VEO. I had looked over it again and again, and was completely sold on the fact that one day, when CGM was more affordable, I would have a pump which was ready and waiting to allow me to join the party. Unfortunately I didn't have the most smooth of rides when I did try the CGM, but it remains an extremely useful tool in managing diabetes, and I stand by my claim that it is something every diabetic should have the option of using - let's hope the NHS catch up! Thankfully, I have found the pump itself thoroughly wonderful, apart from the odd kinked cannula frustration, which frankly seem to be part and parcel of using any Teflon cannula as opposed to steel ones. But the pump itself has been like a best friend to me.
But perhaps the most important thing about my pump, is the people and service behind it. The aftercare, if you will. From the moment I joined the Medtronic clan, I have known nothing but complete support and care from the company and the people behind it. I have had a number of mishaps with the pump, including one which led me to phone Medtronic in America on a Sunday afternoon, while shaken and a little concerned. The customer service I received that day was second to none, so much so that I took the time to send an email to Medtronic telling them just how impressed and grateful I was for their compassion and outstanding service. Not only did I accidentally hang up on the customer service chappy on that Sunday afternoon, thanks to the mild panic going on in my head, but after getting straight back through to another person, it turned out that the original customer service agent had been trying to call me back (from America no less) for the 20 minutes I was on the phone to his replacement.
Medtronic have also sent me skins and a remote control at my request (despite the fact that the only equipment I actually need, is already right here on my hip - these are just for play), and have also sent me a reservoir after I lost my head and forgot to get some spares from my DSN.
I could not sing their praises more highly, and suspect I always will.
But despite the fact that I have felt very safe in the hands of the folk at Medtronic, a new pump recently arrived on our shores, and as I have now passed my trial and have the option to consider another pump before making a choice which will remain with me for the next three years, I wanted to check this pump out.
It is the worlds first tubing free insulin pump and goes by the name of the Omnipod.
Rather than having a 43 inch tube which leads from the pump to the cannula, everything you need to deliver the insulin is contained within that little white 'pod' (on the right hand side). The PDM (Personal Diabetes Manager, on the left) is used to wirelessly send commands to the pod, which then delivers the insulin as and when you ask it to.
This is the diabetic equivalent of Topshop giving away all their most expensive and stylish lines, with a cherry on top. It couldn't be more exciting.
So in August, when I knew my pump trial result was looking good and that the option of a new pump may be on the horizon, I contacted my DSN and asked about perhaps trialling the Omnipod now that the option was there. After hearing that she would consider it providing the cost was not drastically different, I contacted Omnipod. Almost immediately I heard back from their customer service team, to advise that my details had been passed to their rep, and that they would contact me soon. A good sign.
Sure enough, about 2 or 3 days later, I heard back from their rep, who advised that I could have a trial which would be done with my DSN involved.
All was looking good. However, since this time, I have sent off about 4 or 5 unanswered emails, and have been left very concerned about the level of customer service I have received. To this day I have never once been let down by Medtronic, in fact quite the opposite, they have time and time again surpassed my expectations, and have proven themselves invaluable in making the transition onto an insulin pump, which in all honesty wasn't the easiest thing I have ever done and took a lot of adjusting.
The problem is, due to the fact that it is now December, and my rep appears to be very unconcerned that a potential customer (sale) is ready and waiting to join their club, I have been left very concerned about what aftercare Omnipod can offer. What if the pump stops working? What if their cannulas kink? What if it is 3am, I have ketones and am panicking again? Where will my lifeline be then?
I now have to reach the decision of which pump I want by the 25th January 2011, which will be one whole year since I joined the 'pumping crew'.
As a result, I have had to reach the decision that I do not have enough confidence in Omnipod to make that switch. Tubes or no tubes, what underpins any insulin pump lifestyle, is the option of having help at the end of a phone should anything go wrong. And when it comes to it, the insulin pump is nothing more than a computer. It can succeed just as often as a computer and sadly can also fail, just as any computer.
The fact that Medtronic are helpful, contactable 24 hours a day, knowledgeable and apparently prepared to go to many lengths for the benefit of the customer is infinitely more important than how the pump looks, whether or not it has tubing and whether or not it is fashionable.
I would LOVE to have a pump with no tubing, but not at the cost of everything else which makes the pump a success.
I truly hope that people in other parts of the country have had more success with them, and that perhaps my experience was more to do with my local rep, than with the general customer service. For children and unsure adults, the thought of no tubing and what appears to be a small, streamlined and 'sexy' pump may be just what they need to make that swap - something which will save their life, literally. Unfortunately, I remain unconvinced. I wrote to Omnipod advising them that I was sad about the fact I had to reach the decision not to change to their system due to my concerns about their service. Well guess what, I still haven't had a reply - even to that.
I had a good feeling about Medtronic when I first looked into the pump, and on the day I found out I was getting one ... And when I received my pump skins through the post ... And when I got my remote control ... And on the day all my cannulas were kinking ... And when I sent my email to thank them for their service.
For now at least, my faith (and funding!) remains with Medtronic. I don't have anything against Omnipod per se, and perhaps when my warranty on Maggie is up (generally pump users change to a new pump whenever the warranty has expired, to ensure if anything goes wrong they will still have excellent after care), I will try contacting them again, just to see what/if anything has changed. But for now, I remain confident in the knowledge that I am in good hands with Medtronic and that swapping to a 'sexier' pump, could have been the beginning of a very long four years.
Maggie the Medtronic, it's you and me from here on baby.
Tuesday, 30 November 2010
Tuesday, 9 November 2010
I have had a great time reading about all the things other people want the world to know, and many of them I wish I had thought of myself. So I will henceforth list my 6 things, and will attempt not to plagiarise any of the brilliant answers I have read so far.
1) You aren't made to wear an insulin pump, you choose it. OK, I'm in a restaurant with a friend I haven't seen in a while. The time comes to order my nosh and I begin my calculations of what I might need to dose. Anyone who has ever seen an episode of 'Scrubs' should recognise the facial expression, as mine is usually not dissimilar to the expression on 'JDs' face when he drifts off into his dream world. Only in my head, there are no crazy and entertaining fantasies. Instead I am doing something like this: 65 grams of cabs x 1.3 units of insulin (my evening bolus dose) + 1.2 units to correct for high sugars, delivered over 30 minutes equals...... Out comes the pump, and then the questions start. I usually quite enjoy this bit, because I get to talk about this unwelcome stowaway who dictates so much of my life. But if I could tell you the number of times I have had the question "It's got that bad has it." First of all, 'it' doesn't get worse. The complications might but diabetes itself is incapable of morphing into some three headed, blood sucking, red-eyed beast which now forces me to be 'put' on a pump. 'It' carries on for the most part as it always has done. Sometimes it is predictable and almost seems to like you. Sometimes it is in a mood which could only match that of Mariah Carey when she found out they painted her dressing room the wrong shade of white. Second of all, do I really look that bad?? Can you tell the diabetes has got 'worse' just by looking at me. Just for the record, I chose this lifestyle. Because it made my life easier, because it made more sense than blindness, kidney disease and constantly numb/tingling/painful limbs. I chose this because I wanted it.
2) Yes, I am allowed that. OK, to be fair and give credit where credit is due, this one is not technically the fault of the public. If you were to believe the poorly thought out media campaigns advocating a healthy, seed and grass eating lifestyle, for fear of developing the dreaded 'diabetes' (Type 2, TYPE 2, PLEASE, JUST ONCE SPECIFY TYPE 2!), we would all believe that people with diabetes shouldn't go outside, shouldn't eat anything except vegetables and ornamental garden grass with a tasty side order of Quinoa and shouldn't even look at that piece of cake. Granted, there are good choices and not so good choices. But the fact is I carbohydrate count to within an inch of my own life on a daily basis and have done for 12 years. And for that matter - am very good at it. I am good at guessing and I am good at calculating. For that reason, no food is outside the realms of possibility. If I know how and what to inject for it, the sky is the limit. So yes, I can have that!
3) Diabetic equipment gets EVERYWHERE. When my friend moved house about 5 years ago, she actually took the time to contact me to tell me that she had found 37 sterile needle lids on her floor underneath her bed. This is because I spent a substantial amount of time with her, on many a night out, weekend in and girly get together at her abode as a teenager. I had my own toothbrush and toiletry set at her house, because eventually it just didn't make sense to bring my 'stuff' every weekend. But with that also came the fact that for every day I spent there, there were about 6 blood testing strips, 4 needle covers (small flexible plastic lids which you peel off the lid of the needle before using it), sterile wipes, lancets etc etc etc, that all find there way into the thousands of nooks and crannies that a home has to offer. I was also recently on a walk with the same friend, when we sat on a bench and noticed a testing strip placed just next to our feet. Here, Lauren pointed out that I was a bit like the guy in 'The Shawshank Redemption', who empties out his pockets of stones in the exercise yard, only I do it with diabetic equipment on walks in the country. I cannot tell you how many times my cats have come leaping into the living room with any number of needle cases, cannulas and reservoirs which they have managed to find and mistakenly perceive as a play-thing.
4) Blood tests - SUCK! And not in some vampire-esque blood sucking joke way, but in a real way. I hate them. I seem to be able to all but pass out on every occasion,and while doing so freak out every poor bugger in the waiting room, because no matter how many times I have them done, it never gets any easier. I know they are for a good cause. I know I have to have them done. I know the result will paint a very clear picture of how I am faring against this disease. But it makes no odds to me. The twitching, sweating and shaking starts from the minute my DSN hands me the blood form. Even as she writes out my details on the form, I can feel myself squirming. She has seen me turn white on many occasion, but only on blood test day.
5) No two days are the same. This is perhaps one of the most frustrating things about diabetes, and people often laugh (they get shot down straight after) because they think I am kidding when I tell them that your BGs are affected by weather, sleep, time of the month, stress, food you ate yesterday, eating fruit, eating veg, even looking at a danish pastry. OK, OK, the last thing isn't proven, but ask any diabetic with a sense of humour and they would agree, it has been known to happen, it's just never been documented 'officially'. The fact is diabetes is affected by almost anything which affects your body, including external forces like heat, noise, and routine. It really is that mean.
6) Yes, you can have diabetes and still have a sense of humour. I have discovered that all of the things that drove me crazy and made me feel very alone, happen to EVERY SINGLE DIABETIC. And these things are possible to laugh at. I'm not saying laugh at diabetes or take it lightly per se, not by any means, but next time you find a testing strip (or 20 of them) at the bottom of your bag, remember this post and laugh about it.
Wednesday, 27 October 2010
I decided to allow myself a month off, a vacation - if you will - because the truth is when you manage something like diabetes, there can all too often be times when the blasted condition takes over. On a daily basis I do around 8-10 blood tests, 4 or 5 boluses, numerous calculations, the odd correction and numerous frustrating moments when I get a bit...'sweary' shall we say. Sometimes, to come home after a day of bad bloods, you just don't feel like writing about it. I always wanted this to be an honest blog about what it was really like with a silent (or sometimes not so silent) partner like diabetes lurking behind every corner, but I never intended this to be somewhere to rant and complain. Primarily because anyone reading a few posts may begin to stop reading the words - about what diabetes really entails - and start reading between the lines. Subtext is hard to ignore when the author of the words are angry, impatient and a little burnt out.
So I come back to you refreshed and ready to get on with it, after having had a busy month which has of course resulted in some downright confusing results. I admit that I have had the kind of month when I could have punched diabetes in the head. Problem is, it doesn't have one. So I have come through 'the dark days' ready to tackle this silly thing head on. The most effective way.
Over the past months not a lot has changed in my body; the weight has remained stable (if a little on the 'cuddly' size), my routine hasn't changed, I haven't been anywhere hot, I haven't changed my diet significantly, and yet somehow my blood sugars have been acting like they are having some kind of party in my body, with a more the merrier attitude. Apparently the worse and more frequent they are, the better the party!
I'll go on to explain a few of the ups and downs as I go on, but it certainly feels good to be back!
Friday, 17 September 2010
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
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
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
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.
Monday, 30 August 2010
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.
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
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
The problem, something happened today which took precedent over the education thing, and that is:
MY REMOTE CONTROL ARRIVED TODAY.
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!
Saturday, 31 July 2010
Most of the time I just get on with things and try not to moan about it too much, partly because if you moan too much people stop listening, and I want people to hear the truth about diabetes. It's also partly because I believe if you keep moaning, you just convince yourself of what your saying and don't have a chance to feel better about anything. So I try to save my rants for moments when it truly does get to me. But under the surface that gives off the impression that I manage it well and don't let it stop me doing what I want, there is always that grey cloud on the horizon - the one which brings a sombre mood, a feeling of defeat and a number of extra boluses (the insulin pump equivalent of an injection).
BUT - I still find something amazing about it every day. By 'it' I don't mean the actual disease, there really isn't that much you can find amazing about this disease other than realising that when you thought the disease couldn't be any more of a pain in the butt, it somehow finds a way.
What I mean by 'it', is the growing list of ways to treat it, the ways to keep complications at bay, the ways to treat those that exist and the amount of cures on the horizon. Granted, if the 'cures' were a little closer than 'on the horizon' I would be a little more enthusiastic, but 'there is a cure just down the road by the semi-detached' doesn't have quite the same ring to it does it?
That being said, even thirty years ago, diabetic patients had to use monstrous glass syringes to inject insulin with. Ones that needed to be boiled and thoroughly cleaned between sittings. Now, I wouldn't call myself lazy, but I do have a distinct aversion to washing up. I would say I'm a little allergic but Jamie would probably disagree! But in all seriousness, if I had to boil every syringe after using it, I would probably have died a long time ago through some sort of nasty infection. PLUS, I have a nasty habit of dropping/falling over/standing on (ask the cats) and losing, all manner of things. If I had to keep track of glass (or as I prefer 'easy to smash') syringes, I would probably have been forceably euthanized due to the NHS struggling under the weight of my cock-ups alone. Also, just take a look at them...
Luckily, in about the 1970s, the first US patent for plastic disposable syringes arrived. I haven't managed to find out at this point when they came to the UK, but seeing as we are about 10 years behind them in our treatment options, I would hazard a guess at somewhere in the 80s. Now these may not look much nicer...
But compared to the glass syringes they were light, small and thanks to not having to boil them, Anna is still alive (can I get a 'yay!). Be honest, all you pen and pump users who have had the condition over 10 years, how weird is it seeing this! I thought I had done a good job blocking these out of my mind, but they sort of feel familiar. Thanks for keeping me alive you little orange and white implements of torture!
Next came the 'pens' with disposable insulin filled cartridges. Granted, mine were never quite as 'sexy' looking as those shown below, but oh my what a change!
Now, the world of diabetes has been truly revolutionised by the introduction of the insulin pump. Granted, any Americans reading this will think it's old news (they are already about 15 years ahead of the backward UK when it comes to new treatments), but for us pale skinned rain loving Brits, the insulin pump has landed. Dun dun dahhhhhhhh...
Now I do happen to be a fan of this particular one, because it happens to be the very one that I will be sporting for the next 3 and a half years. And may I add what a fine device it is. I now no longer have to inject, I have a completely tailored (I prefer customized) insulin delivery plan, and most of all, I can have a giant curry and no longer feel like I just hit myself in the face with a brick afterwards. Hoorah!
But this isn't the end of it. Not by a long shot. The one drawback for me with the insulin pump is the tubing. I have no problem wearing the pump, trusting it or relying on it, but I have got a habit of tugging on the tubing (please see earlier comment RE clumsiness - said clumsiness applies here too). It's not generally particularly painful, certainly not for me, but sometime it is a pain in the backside (or arm or leg or wherever my cannula site happens to be).
There is currently one on the market, the Omnipod. Don't get too excited you pasty face rain sodden Brits, it's not 'here' yet, but it is on the horizon (that damned word again!).
There are also plans for an 'artificial pancreas', which will combine the technology of insulin pumps and CGM (continuous glucose monitoring) and will enable diabetics all over the world to take that big step closer to joining the 'normal' gang, as the artificial pancreas will be able to monitor glucose levels and respond by either administering insulin (if glucose levels are too high) or turn off the pump (if glucose levels are too low) . I have no doubt that this is still years in the future, but at least it is there. The ingenious invention in some bright sparks mind. I thank that person, because every step closer we get the more hope I have.
My point of this article I suppose, is that although we are still along way from perfect treatments or dare I say it, a cure, we without doubt must have one of the largest amounts of medical treatment options available. There are diseases out there which people still have no idea how to treat. Even with multiple sclerosis there is no known way of treating the actual disease, just the symptoms after they happen. They take steroids after each relapse in the hope it will absolve some of the damage done during the last episode. Whereas diabetes, even though still treating the symptoms, has a growing number of ways to try and stop those highs and lows before the even happen. I'm not saying we have it any better or worse than anyone else, but every day that I see there is a new treatment available out there, is a day I feel safe in the knowledge that as far as treatment is concerned, this really is the best we have ever had it. It may not be perfect, but it's a damned sight better than over sized glass torture devices and a guaranteed trip to an early grave.
I just can't wait for the day the world press announces the cure has arrived.
There will be tears in my eyes when that day arrives.
Sunday, 25 July 2010
We packed up our stuff on Friday and bid the kids (cats) farewell. We hit the highway excited and keen to get on the move and headed west; Cornwall west.
Normally when I have a trip planned, diabetes is the number one priority. It is impossible for it not to be really - if I don't look after myself, things go wrong. Very wrong. I usually do at least 50% more tests, usually err on the side of caution and let myself run a little higher and usually bulk buy food like Armageddon is nigh! Remember how crazy everyone went when they thought the year 2000 meant every electrical item would fail meaning chaos would strike? Well you know how everyone started storing food underneath beds and in secret cupboards? Well that's how my bags look when I go away. Like the bag of a mad woman who is going to be living on a deserted island somewhere.
This weekend however, there was something else distracting me; The wedding. I did carry out the usual bulk-packing of medical equipment, making sure I had enough equipment to negotiate some sort of tropical disaster, and made sure I had packets of sugar stuffed in pockets and bags, but one thing was different about this weekend. It was almost as if once I hit the road I forgot I was diabetic.
It felt good.
I must have only done about 3 or 4 blood tests all weekend! Now I'm not saying that was the 'best' decision in the world, and I certainly wouldn't go telling people to do the same. BUT, the fact that my trusty pump just carried on doing it's thing, making little clicking sounds now and then and delivering the insulin as I trust it to, meant I was able to just 'get on with things' and enjoy my weekend.
I can't be sure, but I didn't feel like at any point I went overly high or worryingly low. This can only be a guess as my blood tests would have confirmed it. But the freedom I have found with the pump is such a breath of fresh air.
Of course I didn't really feel like I wasn't diabetic, and of course I didn't ignore it all together. I did have one low on the evening we arrived after misjudging what I needed to bolus for dinner, but generally I felt just great!
That just never used to happen to me on injections. Injections meant highs lows, having to eat at certain times, waking up to inject even if I wanted a lie in and having to religiously weigh and measure every damn thing I eat.
This weekend I had a chance to just let the pump do what it is paid to do. Keep me alive.
And it did a damn fine job!
Wednesday, 14 July 2010
I have been eagerly awaiting the arrival of my shiny new iPhone for days. As of yet, I haven't really bought into the whole iPhone crowd thing, primarily because I don't feel the need to belong to the messy-haired, NME reading, skinny jean-wearing, must-have-an-iPhone-or-you're-not-'cool' crowd. But I do have a confession; I can't help it, but I do love the feeling of slicing the sellotape away from a shiny new box containing a new phone. One which I invariably won't be able to use without being all fingers and thumbs for days (why does every mobile phone have a different space bar or punctuation button?), one which I will probably drop in a puddle days after saying I would be more careful with this one, and one which I will no doubt have to spend hours transferring numbers to, because as much as I love technology, it always gets the better of me. But, just as you get a new pair of shoes and can't stop looking at them, or get a new car and can't stop finding reasons to drive to the shop (it's five minutes away but it's dark outside - it's the safer thing to do, right?), I just have a thing about new phones.
Today at work, my insulin pump was running low on insulin (the clue is in the name - it's kind of the key feature!). I had done the rough calculations in my head to make sure I had enough to get me through the day: In other words, 1.5 units per hour x eight hours = 12 units, plus the six units I use for lunch = 18. I had 19 units left so thought I would be safe. One problem, being the human (and occasional scatter-brain) that I am, I had forgotten to calculate my morning dose for my breakfast (4.5 units). That means I was now 3 hours short of insulin. Hmmm, I know that I can take an hour off the pump safely, so I can get through until 4.30pm without worrying too much. I agreed with the wife (he's a good wife) that we would leave work at 4pm today (thank the Lord for flexi time!) so that I could top up the reservoir in the pump and harmony would be restored.
Turns out, I am more excited about getting my new iPhone than I am in making sure I have enough insulin. You know, the 'stuff' which keeps me alive and stops me going into a coma (!). I got home with all the best intentions. But not intentions of filling my pump, Nooooooo. Instead, I had intentions of getting acquainted with my lovely shiny new friend - the stuff of dreams - my iPhone.
Unfortunately the phone of dreams hadn't arrived. I have no doubt that any normal non-obsessed person would probably have given up there, but I am no mere normal person. I, managed to spend about 2 hours staring at the tracker screen on the DHL website (useless, by the way) watching it say "out for delivery". After having some dinner and trying to accept (and failing at it) that my shiny new companion wasn't arriving today, I went to meet my friend for a drink. We strolled along Langstone harbour for about 45 minutes, chatting about anything and everything under the sun, enjoying the summer evening (aren't they bliss?).
We strolled back and sat down for a drink. After about another half an hour, my pump made the most disturbing sound.
BEEP, BEEP, BEEP, BEEP, BEEP.
"What the hell?!"
"SHIT!" (excuse la French).
"I haven't filled the reservoir! I have to go."
It was 9.30 pm at this point. I was currently in my sixth hour of no insulin, having eaten 85 grams of carbohydrate for dinner and injected for it (or so I thought).
I raced home with Lauren in the car behind - following me to make sure I was OK (she's a good lass). I raced in doors, grabbed my testing kit (weirdly enough I never leave home without the damn thing - except for today when I forgot it) and tested my levels.
I don't know how, but after 6 hours of no insulin and having eaten a dinner which should have warranted 8.5 units of insulin (which I never received), I managed to be at a reasonably good level!
I have set the pump to release 150% the amount of insulin I normally need and have tested three times since getting home, but nevertheless have some how managed to avoid a potential nightmare! In fact, I may need to eat something before bed because my levels are dropping!
For all you diabetics out there I have one message:
IPHONES + PUMP REFILL DAY = DISASTER.
I still can't wait to open that box though. Fingers and thumbs at the ready!