I have never quite understood the concept of an “HIV identity”. What does it mean to say that a virus in your body has so overwhelmed your life that it has become an essential part of who you are?
I know I spend a lot of my time working in the HIV sector, writing for it, talking to other positive people. If there is any virus or indeed health condition that could consume you given its complexity and its potential for life and death implications, it is probably HIV. But does that mean I have an HIV identity? I’ve never been quite sure.
So when a doctor told me two years ago that I was a type 2 diabetic, I was unsure about what that meant to me as well. For starters I didn’t quite feel that I was a ‘real’ diabetic because the condition has been brought about, it seems, because of HAART, particularly my need to take protease inhibitors due to resistance to other classes of drugs.
Since combination therapies were introduced in 1996, I have generally been on a combination involving proteases and have seen my triglycerides, ‘bad’ cholesterol and blood sugars rise to serious levels. Because my diabetes was chemically induced, I thought to myself, it’s not quite the same as if it developed ‘naturally’, whatever that means. I assumed that if new classes of HIV drugs were invented which would allow me to move off proteases one day, I would revert to my old normal self.
Not to be taken lightly
That, it seems, is not the way diabetes works. Once your body develops insulin resistance , it is unlikely that the condition will simply go away, with or without the presence of co-factors such as HIV drugs. I have to accept the fact that as with HIV, I will probably have diabetes for life and I’d better start trying to take the condition seriously.
I’ve read enough about serious eye problems, peripheral neuropathy, heart disease and kidney damage related to diabetes to know that it is not to be taken lightly. I don’t want to get to the stage that I am insulin-dependent and need to inject several times a day, either.
So it was off to the dietitian to be told, “When it comes to diabetes ,you are what you eat.” In other words diet (as well as regular exercise) was the essential way to manage the condition. Despite popular misconceptions, fat (and not sugar) was the real enemy of diabetics and I should immediately start on low-fat milk, margarine made from olive oil, eschew fried and fatty foods (no more eating the skin off roast chicken) and learn about low Glycaemic Index (GI) foods.
The Glycaemic Index is a tool which has been in use for the last 20 years or so where scientists have measured foods for their physiological effect on blood glucose levels. According to Professor Jennie Brand Miller (and co-authors) in the book The New Glucose Revolution, Australian scientists got the idea to investigate the concept through studying some of the bush tucker — the nuts, berries and other foods that indigenous Australians traditionally ate — to see why they were less susceptible to diabetes until they started to eat Western food. The scientists found that these foods were protective against diabetes ,as they did not lead to high blood glucose levels.
Research on the Glycaemic Index turned a lot of conventional wisdom on diabetes management upside down. For starters it was discovered that many starchy foods (bread, potatoes and many types of rice) are digested and absorbed very quickly, not slowly as had been thought. This gives them a high GI response. And moderate amounts of some sugary foods were not quite so bad for blood sugars as assumed. I was stunned to be presented with a chart showing the GI effect of foods which had pure glucose with a “100” value and right below it at “99” was my favourite: mashed potato! And a Mars Bar was only three quarters of the way up the chart. Did this mean I could eat more Mars Bars if I gave up potato?
The answer to that question is probably no, although if I decide to eat the Mars Bar (which still has a relatively high GI) at the end of meal which has included several low GI foods then my blood glucose levels will even out better than if I snacked on a chocolate bar — or a biscuit — during the day. For the same reason, I can eat mashed potato but try to mix it with low GI foods in a meal. If I want to snack during the day I’ve been told I should try eating fruit, nuts, sultanas — or oatmeal biscuits!
So, I’m told my future success in managing diabetes through diet lies in working out which are the good and bad carbohydrates (GI only applies to carbohydrates) and trying to eat at least half of my choices of these foods from those with a low GI. That hasn’t been a simple task. Take breakfast cereals, for example. I’ve spent years having my Weetbix for breakfast only to discover it has a high GI (like most breakfast cereals) and I should consider shifting to porridge (which, as it is made from oats, has a low GI). I can have toast but need to shift to a multi-grain bread as the presence of whole grain will slow my digestion. I can have a little jam (low sugar) on it or even a little peanut butter (but preferably a low-fat variety).
You may sense my frustration at having to re-learn all these basics about what I can and can’t eat. As a friend observed after sharing a meal with me where I debated the diabetic-related merits of a pasta (low GI) meal (with a high-fat and subsequently problematic sauce) versus a steak (no GI) and chips (high fat and GI). “This must be a burden on top of all the HIV complications you have to put up with,” he said.
“This is an HIV complication,” I answered, although I had to take his point. It is an extra nuisance on top of days when you are dealing with diarrhoea and nausea from some of your drug combinations, to have to prick your finger before breakfast and discover that another part of your life is (sometimes) lurching out of your control.
I regard these morning blood glucose-testing sessions as a marker of how well I’m doing in understanding my dietitian’s advice. Although even if I do the right thing some days, the blood glucose readings can still be above the ‘naughty’ ten mark.
I am consoled by the fact that a number of my HIV-negative friends — also in their 50s — have had to learn to live with diabetes in recent times. As many of us with HIV have got older, we have to expect the morbidity that might have come with that, regardless of whether we’d picked up this virus or not.
With estimates that one in four Australians have diabetes or impaired glucose tolerance, our white bread, fried food and high carbohydrate diets, and our take-away food culture has something to answer for. Taking steps to control my diabetes through diet will have the added benefit of reducing my cholesterol and triglyceride levels and my coronary risk. I may even feel better as well!
Not that I’ve managed to live with diabetes for the last two years without some medication to help control it. I started on Metformin at first which caused such an extreme gastric reaction (possibly from an interaction with ritonavir) that my diabetes specialist soon took me off it.
I then moved on to Gliclazide, which worked well at first but now seems less effective in keeping my haemoglobin AIC (the test of overall blood glucose control over a three-month period) levels down at my regular visits to the diabetes specialist.
At my next visit I’m hoping that the doctor will agree that I can go on that “drug with the drag queen name” — rosiglitazone — or something from its family as it has been shown to help control diabetes in people with HIV. The trial of the drug in people with HIV in Australia was to see if it helped reverse lipodystrophy — for which it didn’t show a benefit. Blood glucose levels were improved but triglycerides were lifted. Fortunately that part of my bloods is under control at the moment so I shall wait on the doctor’s advice.
It is probably tempting for some positive people to think of diabetes as something less harmful than HIV. If you have survived the rigours of PCP or MAC and lived through it, why get too stirred up about a chronic condition that often doesn’t show its colours for a considerable period of time? Why not enjoy your Big Mac with coke and fries or your doughnuts for morning tea?
There is a very important reason why diabetes is as important a consideration as HIV is in our lives these days. For many of us, the virus is relatively well controlled at the moment and we are not coming down with the opportunistic infections that occurred ten or more years ago. Many of us have no choice but to take our HIV treatments and the real art of living with the virus these days is in managing the side effects of these treatments as they occur.
From a time in the early days of HIV when many of us were wasting and being told “eat everything you can and lots of it,” dietitians are now telling us to eat as healthy a diet as possible to reduce our diabetes and coronary disease risk. But we still have to eat higher quantities of the right food as our metabolism is under greater stress because of the virus . In my current situation with diabetes ,my dietitian has taken a more significant role in managing my HIV than ever as I learn the intricacies of GI foods and to live with the maxim, “You are what you eat.”