Hi Coralkay,
A while ago I wrote a letter to a friend's daughter who had just been diagnosed and finding things tough - I'll paste that below because it is genuinely how I feel about this. I don't know if she is a member here but I hope she won't mind if she is; names/details have been removed.
The short version is that diabetes is a pain in the neck (or leg in your case...) but you can take control of it and you can cope.
Also, it's written to a slightly younger girl than you so the tone is different to how I'd write to you.
I hope you don't mind a bit of recycling!
Best
Dillinger
I know we don't really know each other and it's slightly weird having someone you don't know talk about health matters but I thought it might be of some help to share some of the things that have occurred to me over the years about this condition.
I've been a Type 1 insulin dependent diabetic since I was 10. On diagnosis I was very ill with ketoacidosis and was rushed to hospital in an ambulance. The last thing I remembered about that was thinking 'cool, I'm in an ambulance with the sirens on.' I obviously wasn't a smart kid...
There are a large number of ways of dealing with diabetes but before you can start taking care of yourself as a diabetic there is a crucial thing you have to do; and that is come to terms with being a diabetic. Easier said than done of course.
Possibly this doesn't apply to you and you already are coping with it all but it is completely normal and understandable to be raging against your luck and raging against this condition.
Unfortunately, it will do you no better than raging against gravity when you are stuck up a tree. You and I are members of a club that no one wants to join. What can we do about it? Well a number of things; we can ignore it (but it won’t ignore us) or we can get obsessive about it and let it rule our lives (I’d advise against that) or we can take control of the *******, figure it out, and live pretty much completely normal lives. I often think of diabetes in terms of walking down the street with sunglasses on on a grey day; you think everyone is looking at you because the glasses are so noticeable to you, in fact no one even sees you. You’ll think you’ll have a huge flashing light above your head going ‘DIABETIC’ but no-one will notice and if they do it won’t be much of a big deal. The fact that you have diabetes isn’t going to stop you doing anything you want to as long as you meet the first and greatest challenge; deal with the difficult fact that you are a diabetic.
I don’t think it’s worth waiting for cures or miracles either; ever since I've been diagnosed I've heard talk of cures for diabetes being 10 years away. I'm pleased to have just read a recent article about the promise of an artificial pancreas which should be ready, in accordance with form, in about 10 years. I realised pretty early on that holding out for that sort of thing is a waste of time and probably makes it harder to deal with your diabetes. After all; if this is all going to be taken care of in a few years why bother with the day to day now?
How you deal with this first great test is down to you and your family and friends; but talk about it rage about it, write letters to your diabetes (which sounds monumentally corny; but does work – once you express something in a coherent way half the power of it is gone).
I know of people who never get over having diabetes and as a consequence their control never improves and that can quickly lead to complications. This is one of the very annoying things about diabetes; it will let you mess around with it for ages and all will appear well, but then one day you will be told that you have progressive irreversible complications which no matter the pains you take to get things together cannot be undone. That is a scary thought; it scares me and it means that diabetes is the hardest of task masters as it will give you the test first and the lesson later.
So, all that aside what do you need to do now? First of all you’ve got to educate yourself about diabetes.
I would suggest that you sign up at the diabetic forum at
www.diabetes.co.uk/diabetes-forum/ – there is a lot of info on there and it is good to talk to other people in your position (albeit anonymously). Also it is a great place to ask questions as they rarely go unanswered. I post on there occasionally and have learnt a lot.
Buy the books ‘Think Like A Pancreas by Gary Scheiner. This is aimed at the US market but it is very helpful. Also buy the most recent edition of ‘Dr Bernstein’s Diabetes Solution’ this is also very useful although slightly more controversial and aimed at the US market as well (the Bernstein method to controlling diabetes is the approach I take for what it’s worth). Lastly there is a book called ‘Blood Sugar 101 by Jenny Ruhl which is also very handy.
You should also request, demand, stamp your feet about going on a DAFNE course; this should be provided by your diabetic clinic. This will teach you how to balance what your insulin dosage to your carbohydrate consumption – this is the foundation of diabetic control and I’m pretty astonished that so many diabetics don’t get taught this.
The short version is that your blood sugar will be increased by three things; what you eat, what your liver is doing and by hormones/stress/illness. It will be brought down by insulin and exercise.
I would imagine that you are on a basal/bolus regime – meaning long acting insulin to act as a ‘background’ and short acting to cover what you eat. The rule of thumb is that 1 unit of short acting insulin covers 10 grams of carbohydrate; but that needs to be tested and changed until you get your ratios correctly identified (mine are quite different from that). If you are not on that sort of regime but are instead on once or twice daily injections I’d push to get onto a basal/bolus regime as quickly as you can; this means you control your insulin to cover what you are doing and you are not having to eat to match your insulin.
Carb counting and insulin adjustment can seem a bit daunting but there are lots of iPhone apps that will tell you carb contents of food (I use one called MyFitnessPal which is pretty good as it has a huge database of food and is fairly, although not completely, reliable). It’s also free. If you want to go old school the Collins Little Gem Calorie and Carb counter is pretty good; although slightly puzzlingly set out.
There are lots of different blood testing machines out there and I use one called the ‘FreeStyle InsuLinx’ (as you’ll learn most diabetic things have absolutely preposterous names…) this I find particularly useful as it will calculate your insulin dose for you; you put in how many carbs you are about to eat and (once you’ve set it up with your current carb/insulin ratio) it’ll tell you how much short acting insulin to take by taking into account your current blood sugar levels and active insulin from previous meals (if any).
You may be eligible for an insulin pump due to your age; I would be on one if I could but I’m not within the NICE criteria for having one prescribed. Possibly that may freak you out; but worth having a think about.
Lastly, I would suggest that per the Bernstein book you try and avoid eating any white starchy foods and fruits (especially fruit juice); meaning bread, rice, pasta, potatoes, porridge and so on. These things are the ones that shoot your blood sugar up and even with very careful carb counting and dose adjustment it’s hard to balance your blood sugars whilst eating them. Ignore all that stuff about fats being bad for you; this is categorically not the case if you are a diabetic; have bacon and eggs for breakfast just like your grandparents would have.
Good luck with this; I’m more than happy to answer any questions you may have. Soon you will be more educated about diabetes than your diabetic nurse, then in a year or two more than your GP and after a few years more than your consultant. It’s a horrible old cliché but knowledge really is power here and once you have that knowledge diabetes will be no more of a hassle to you than brushing your teeth.
Best
