Tuesday 30 November 2010

Food for thought

About a month ago, I discovered a blog. This in itself isn't anything special, seeing as my Internet D travels often lead me to stumble across others people's stories about their diabetes, either by virtue of recommendations, becoming 'friends' with another person with diabetes online, or via the old fashioned way - browsing. This was no different, I happened upon it with a few simple clicks of the mouse. But there was something different about the content of this blog. Instead of talking CGMs, pumps, frustrations and high points like most other blogs I follow, this blog talked about managing type 1 diabetes without the use of insulin. Now, I have seen my fair share of scams, fraudulent claims and tall tales around any number of so-called cures for diabetes and in all honesty, my initial reaction was that this must be another one. Perhaps they are selling another 'cure'. Drink this potion (at the very [un]reasonable cost of £79.99 per 20ml bottle) and you will be free of diabetes. But this was not the case - nowhere was the mention of potions or magic beans.
So I read on with interest - and in truth, a little caution - as I read about a little girl named Kylie. Kylie's parents had suffered the same traumatic news that many other parents across the world have had to come to terms with. My parents did. Maybe yours did, or maybe you are the parent who has had the same devastating news.
"Your child has diabetes."
Just as with many other parents, Kylie's learnt in time that their daughter would rely on daily injections, blood testing and countless appointments with specialists each year. Only this couple were different; they decided very early on that they would try anything and everything to spare their child from this fate. They started researching, reading and experimenting; they toyed and juggled with all kinds of foods, until they pinpointed which foods had the greatest impact on Kylie's BGs. Slowly they started to remove all those foods from her diet, until eventually, Kylie no longer needed injections. This, was the blog that started to change my view of food.
Contrary to my suspicions that this must be a one in a million case, I soon found others online who were also experiencing life without injections. Many were children, but there are also the odd adults here and there. They all had one thing in common; they had caught the disease and started lowering their carbs during the 'honeymoon period', when they're body still had a reasonable percentage of functioning cells. Something I doubt I have. But still I set about contacting as many people as I could, with a little [perhaps naive] hope that maybe one day I too could live without injections. As much as I love my pump and as much as it has changed my life and as much as I sing its praises, I would do almost anything to be free of the daily grind that is in effect, self harming for the purpose of living. But it comes at a price. Carbohydrate is all but a curse word for these families. Anything with carbohydrate, such as oats, potatoes, pasta, whole grains, most dairy and rice is just not possible if you want your blood sugars to stay level. How is it that these people manage it?
One of the immediate discoveries I made, was that all of those who followed these strict low carb, high protein diets, followed a plan by a Dr Bernstein.
Dr Richard Bernstein is a Type 1 diabetic himself. Over his years of living with diabetes, he had begun to suffer a number of complications. And we are not talking 'small' complications like tingly fingers or the odd blurry vision brought on by high sugars. Not that I think those are small per se, but in terms of what can go wrong, these are at the lower end of the scale, for me at least. But Dr Bernstein had neuropathy in both his legs, his sight was all but permanently damaged and most importantly, his kidney problems meant that he had a sell by date of 5 more years on his life - which he discovered through his own research into the condition he had. At this point, Dr Bernstein bought himself a home blood testing kit. Something that you and I take for granted on a daily basis. We read the results and either curse or rejoice. They can now be bought for little more than £10 and sometimes you even get them free. Way back then, before they were available for domestic every day personal use, Dr Bernstein had to enlist the help of his physician wife, and bought himself the 3 lb bulky device which cost hundreds of dollars and was by no means portable. But with this device, Dr Bernstein also embarked on a similar journey to that of Kylie's parents and the many other diabetics who have found a way to control sugars either by diet alone, or by diet and minimal medication, with minimal side effects in terms of hypers and hypos. The problem was, Dr Bernstein at the time wasn't a Doctor. He was an engineer whose claims about controlling diabetes through diet were shrugged or laughed off.
How could this man claim to know anything about diabetes? He may have it, but we have the knowledge of how to treat it.
Well, Dr Bernstein refused to give up here. He subsequently enrolled at medical school and gained the MD after his name that would allow him to finally influence the teachings of the so-called 'experts' of the time and devise his own A-Z guide of how to control BG using diet and finely tuned insulin administration.
Dr Bernstein's method is now one of the most widely advocated methods of treating type 1 diabetes in the US, and would appear to me, to be snowballing at an astounding rate. Thank you Mister Internet, because I for one would never have discovered this for myself without the use of my trusty keyboard and Google search engine.
I have been reading Dr Bernstein's book - 'The Diabetes Solution: The Complete Guide to Normalizing Blood Sugars' for about a week now, and have already learnt so much more than I could ever write in one post. Like the reason behind sudden sharp hypers after a meal when I 'stuffed myself', despite having carb counted to within an inch of reason.
I am now starting to experiment with my own diet, toying here and experimenting there - so far with reasonable success. In my first 4 days, I did not have a single blood sugar over 8.4mmol (151 mg/dl). I have not gone as far as cutting back as much as the book suggests, purely at this time because I am only on chapter 4 and don't know how or what to avoid at this point. I also have to admit, that right now I can't quite get my head around how cutting out whole grains and dairy can be good for anyone. I know that the rules of a healthy diet don't always apply to diabetics, but I have been trained for 24 years to know that low fat, high carbohydrate (without even a single mention of protein!) is the way to go. Without a doubt any change in diet takes some degree of choice and reason, but to cut most food groups out all together is something I am still unsure about.
But for someone whose obituary had all but been written (sorry for the coarse idea, but if you read the book you too would realise how severe some of the complications really were), this person turned their life around and still now at the age of 74, lives a healthy 'normal' life.
The jury is still out for me whether I would be able to fully remove carbs all together (other than those from specific vegetables). I am at present firmly in the school of thought that food is medicine, it is fuel - here for the purpose of keeping our bodies nourished. But I am also in the school of thought that food is medicine, it is our fuel. Confused? Are those not the same thing? Well, I truly believe that sometimes a meal out with friends is the best medicine. Sometimes when you have had a tough day, coming home to a nice 'naughty' dinner or a film with pop corn or ice cream as a treat, outweighs the 'damage' that it can do to all of us in the D club.
However, that being said, if Dr Bernstein managed to not only outlive his 'expiration date' by every 'professional's' opinion, but also reverse most of his complications particularly the more dangerous ones and still to this day manages his condition via insulin and a tailored diet, then why can't I? Is it all that dangerous to cut out certain foods? The fact Dr Bernstein is still walking this planet would suggest not...
I know that I will never be able to come off insulin all together. I know that after having had chronically high sugars for the majority of my teens has probably destroyed every last insulin producing cell I had left. But that is just toughr. Perhaps if I had caught myself in the very early stages of the disease, during the honeymoon period, just as Kylie's parents did, I would have stood a chance. Perhaps if my parents had had the tools I may have now found, it would be a different story. Perhaps today's blog would be about not having to inject, about having perfect sugars, about living without type 1.
Instead, today's blog is all about trying new things. I continue to read Dr Bernstein's book with fascination, sneaking a read at work, while my partner watches cricket or while I'm in the car. I continue to remain open-minded and hopeful.
I continue to travel on my diabetes journey and find new ways to tackle this disease.
So join me if you will as I begin to experiment with my own food regime, and use my experiments as a way to reach your own decisions about your condition. I hope that my future posts will offer some insight and clues as to what may be awry in your own diet. If not, then I am sorry. But if so, feel free to use me as your Guinnea Pig - I plan on doing it anyway!
Posts to follow!

Tuesday 9 November 2010

Six things

I found out this evening that it is Universal D-Blog day (really? is there such a thing?) and as part of that all of us in the D-club are bound (not legally) to write about 6 things we want the Universe to know about Diabetes.

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.