Diabetes: Defining The Disease Without Letting It Define Me (Non Insulin Dependent Diabetes)

Member Name: Hishyeness

Product:	Non Insulin Dependent Diabetes
Date:	09/06/09 (101 review reads)
Rating:

Advantages: Diagnosis led to a much healthier lifestyle

Disadvantages: Bad blood level management can lead to serious complications

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INTRODUCTION
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Just over five years ago, I developed diabetes. I was 33, newly married, sedentary, overweight and in a stressful job, but the diagnosis was nevertheless, totally unexpected. According to Diabetes UK, there are currently over 2.5 million people with diabetes in the UK and there are more than half a million people with diabetes who have the condition and don't know it.

This is a frank, personal account of my experience in dealing with the disease. Along the way, I think I have managed to touch on most of the main issues relevant to diabetes, but this is by no means an exhaustive and comprehensive review of everything to do with the condition. This is my journey.

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SYMPTOMS
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In 2003, I was working for a law firm in the City, and had been seconded to a company in Southampton for six months. As such, I was driving down the M3 to the South Coast around four days a week from my home in southwest London, a trip which usually took about an hour and a half each way. About three months into my secondment, I started to feel the overwhelming urge to go to the loo around 45 minutes into the car journey, and made a habit of stopping into Fleet services on the M3 for a comfort break.

When I arrived in Southampton, invariably, my first visit was to the Gents - sometimes making it just in time. I was puzzled, but not overly concerned, because I had recently been drinking loads of water to slake what had developed into an unquenchable thirst. As it was summer and the weather was warm, I just figured I was dehydrated, and the water was obviously making me go to the loo a lot more.

Then I started having to get up in the middle of the night to relieve myself, and it was a rare event to get through to morning without finishing the litre bottle of water at my bedside. I was getting worried, but more because of my lack of sleep and the adverse effect it may have on my driving rather than the excessive thirst and visits to the toilet. I was perpetually tired, irritable and sharp with my wife and colleagues, but I put it down to the stress and strain of work and constant travel, exacerbated by lack of sleep.

I hid the symptoms from my wife for two weeks, hoping they would go away, but a chance remark in a telephone conversation with my Mum suggested things could be seriously wrong. A cousin of mine, who had been over the moon at losing a fair bit of weight, had just been diagnosed with Type 2 having exhibited exactly the same symptoms. Seriously worried now, I told my wife and my Mum and made an appointment to see the doctor the next day.

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THE DIAGNOSIS
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The GP ran through my history and symptoms and then asked for a urine sample. Even though I had relieved myself just before leaving the house ten minutes earlier, giving a sample was not a problem. The GP tested it with a strip of some kind and his raised eyebrows were all I needed to see to know that I was in trouble.

Next, he pricked my finger and took a drop of blood which he dabbed on a test strip on a meter. A number flashed up. At that point, it had no meaning for me as I had no frame of reference. The number was 22 mmol.

Let me put this in context. Millimoles per litre (abbreviated "mmol") is the world standard unit for measuring glucose levels in the blood. In a normal person, this ranges from four (4) mmol fasting to around six (6) mmol after eating. Anything consistently over these figures and you are either diabetic or insulin resistant (and possibly on the way to being diabetic). I was 22 mmol. That's a scary number by any account.

My doctor delivered the bad news - it was very likely I had developed Type 2 Diabetes Mellitus - and, as I was lucky enough to be on my firm's private health plan, I was referred to a specialist clinic in Harley Street for a full blood work-up and an appointment with a dietician.

My GP explained the basics. If blood glucose is not managed properly for long periods of time, eventually, it will start to damage key parts of the nervous and circulatory system. Long term complications of badly managed diabetes include nerve damage - causing loss of sensation in the extremities, blindness, kidney failure, amputation due to loss of circulation, and premature death - due to any one, or a combination of these things. The risk factor for heart attack and stroke increases tenfold. On average, Type 2 diabetics live ten years less than the rest of the population.

Obviously, this was a lot to take on board and cope with.

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SEEING THE SPECIALIST
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A week later I was at the clinic with my wife. I have a hard time with needles, and due to my anxiety, the nurses were unable to extract blood from my typically uncooperative veins. I was so worked-up that I passed out, just as the third nurse was having a go, but only shortly after delivering most of my breakfast onto the previously immaculate tiled floor. I was such a hard case that they eventually sent me to a specialist blood clinic down the road, where several vials of blood were eventually extracted from the top of my hand.

More trauma was to follow, when I learned I would have to return to my GP every six months for routine blood work to measure my "HbA1c". This tests for blood glucose levels over a three month period. Apparently, glucose "sticks" to red blood cells, which typically live for 8 to 12 weeks, so the test allows a doctor to see what your average blood levels are over that period of time. The idea in the early stages of managing a newly diagnosed diabetic is to reduce the levels down to around six (6) mmol as quickly as possible and then keep it there with a combination of diet, exercise, and medication.

However, I was warned that eventually, the disease would catch up with me - all I could do was keep the symptoms and the effects at bay for as long as possible through good glucose control. Apparently, insulin dependency is not just a possibility - it's a promise. That said, with good management, it was unlikely that I would experience any real deterioration until later in my old age.

Back at the diabetes clinic, the specialist read me the riot act. I don't know who went a lighter shade of pale - me or my wife (who is 9 years younger than me). I was told, in no uncertain terms, that major changes were needed to my lifestyle, otherwise I would never see my kids grow up into parents themselves. No weddings, no graduations, no grandchildren - a family cheated of their main provider and future kids cheated of a father.

It was terrifying and extremely sobering. I resolved then and there to do whatever I had to, to make sure I was around for my wife. There was no way I was going to let this disease beat me. I grasped the lifeline thrown to me with all my strength.

Or so I thought...

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BEGINNING MY JOURNEY
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I was prescribed a drug called Metformin (Glucophage), discussed and agreed lifestyle changes with the dietician, and resumed my life journey with some extra, ever present baggage called diabetes. I was fixed up with a handy, portable blood glucose meter which would allow me to test my bloods by pricking my finger and dabbing the droplet of blood on a test strip - much as my GP had done at the surgery. Once all of the initial assessments and appointments were out of the way, I was pretty much left on my own.

Diabetes is patient-managed. Essentially, apart from a few nagging letters from the GP to remind you of regular appointments to have bloods done or meds reviewed, you are expected to take the initiative yourself if anything crops up.

The only other regular test is an eye exam every year (called a Diabetic Retinopathy) to monitor any damage to the fine capillaries in the retina which can burst and cause loss of vision if blood glucose isn't managed properly over the long term.

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EDUCATION
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I spent a lot of time educating myself on what I could and could not do, and found myself fighting a lot of misconceptions and prejudices along the way. Well-meaning, but ultimately misinformed, people made me realise that a lot of what I thought I knew about Diabetes is myth and bunkum. The Diabetes UK charity, which I joined as a member shortly after my diagnosis was an invaluable help. It has an excellent web-site that it's a great first port of call for anyone who wants to know more about the condition.

Common misconceptions include:

> Diabetics can't eat sugar/or is developed by eating too much sugar

Wrong on both fronts. What's more important is how sugars are delivered into the system. Slow absorption of glucose is the key. A baked potato, which is quite starchy is a better option for a diabetic than the same potato mashed. That's because the body has to work harder to break it down, delaying its release into the blood stream. If you have pudding after dinner, instead of as a stand alone snack, the meal before it slows down the impact.

Of course, a steady diet of Mars bars is going to do everyone damage eventually, but it doesn't preclude a diabetic from having one if consumed occasionally. Interestingly milk chocolate is better than dark chocolate because the higher fat content in the milk variety slows down absorption.

On the second point, eating too much sugar and fat usually leads to obesity, which does increase your risk of developing the disease. However, sugar in of itself has no direct effect. Oh, and one more thing - diabetic products are a cynical rip-off. They are usually more expensive than normal brands and have no appreciable benefit for diabetics.

> All diabetics are the same

No, they are not. There are two main types. Adult-onset Type 2, which is what I have, and juvenile diabetes, which is called Type 1. Type 2 can normally be controlled late into life with diet, exercise and medication. Insulin may come later for most.

Type 1 develops in childhood and most, if not all, sufferers are insulin dependent. It is rare than type 2, accounting for around 10% of all Diabetes sufferers in the UK. Type 2 diabetics are most likely to suffer from hyperglycaemia, which can go on for some time before any serious effects kick in.

However, Type 1 diabetics can get hypoglycaemic episodes if their sugars get too low, resulting in lethargy, coma and eventually death. This is why most Type 1's will carry around some form of glucose to ingest if they sense a "hypo" coming on. There is also a form called gestational diabetes that occurs in pregnant women, but only for the duration of the pregnancy.

> I am going to go blind or lose a leg

As mentioned, with conscientious blood sugar control, most diabetics can lead a largely healthy and normal life. The worst symptoms are as a result of nerve and circulatory damage caused by bad management of glucose levels. As such, I am not going to go blind, lose a leg or sensation in my fingers and toes unless I blow it big time over a fair stretch of time. Regular trips to the optician, your GP and your podiatrist will ensure that any significant change can be caught and managed early.

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THINGS GO PEAR-SHAPED
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After six months of being careful, I went for my first HbA1c and the results were good. The second and third visits were also quite good and I was pleased that I had the measure of the disease. Encouraged, I let my guard down a little and, with the immediate shock of the specialists' warning now a faded memory, I went off the rails a bit. I could not sustain the changes I had made to lifestyle, and without knowing it, I had slowly become more and more depressed.

I thought I had dealt with the news quite well, but a delayed sort of shock crept in and I began to slip into a pattern of denial. At first, I thought I had got away with it, but over the course of a year, my next two blood tests showed steady increases in my glucose levels.

I began to see my pills - which were added to by two other drugs called Glicazide and Avandia - as magic bullets, meaning I could eat what I wanted and these pills would "magic" away the glucose in my system. Unfortunately, it doesn't work like that.

> How the Drugs Work

The best analogy I think I can use to describe how Type 2 diabetes works is this. The pancreas produces insulin, a hormone essential for helping carry energy - in the form of glucose - to cells that need it. Think of insulin as a tugboat. In a healthy person, it is released into the bloodstream, goes and finds a glucose molecule, and then carries that molecule to one of many receptors on a cell.

Think of those receptors as docks in a port. The glucose is then absorbed by that cell and converted to energy. However, in Type 2 diabetics, a lot of the docks are silted up - leaving only a few free to receive the cargo of glucose. As a result, glucose builds up in the bloodstream, because the body is not able to absorb the amount released by the food we eat.

Consequently, the kidneys start working overtime to try and get rid of all of these extra glucose molecules - treating them like any other waste product. As glucose is relatively sticky and heavy, water is needed to help dilute and shift it - hence the body's signal that you are thirsty. So you drink more water as a result, and your bladder works overtime to try and keep up with it all.

What these drugs are supposed to do is to help unblock more of the receptors on the cells, allowing more tugboats to dock in port. Unfortunately, if you keep pouring more and more glucose into your system - like I did - you don't help matters - the system just gets overwhelmed, and that's when you start doing yourself some long-term damage.

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DENY DENY DENY
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Along with popping pills and hoovering up chocolate and junk food on a consistent basis, my denial reached new levels when I skipped my next two blood appointments and avoided my GP surgery like the plague. My self-destructive behaviour was only interrupted - briefly - by the arrival of my daughter, when stress at work and lack of sleep meant I was eating less and losing some weight. However, this did not last, and two years later I reached my heaviest weight. I was so heavy, my bathroom scales could not cope with me any longer - they maxxed out at 150 kilos or 23 stone.

I took it in stride, shopping at Big & Tall men's stores online, asking for extension belts on airplanes, and taking to wearing polo shirts at work because I could not find formal shirts that were generously cut enough to cope with my bulging belly. I was perpetually exhausted, and when I did test myself for bloods, I made sure I did it on good days so the result wouldn't be too bad.

I couldn't manage a set of stairs without sweating, I would pile up work on the printer at the office, so I would only have to make a single trip, and avoided any physical activity all together. I was slowly killing myself, and everyone could see it except me. Even my wife was putting on weight - she was depressed because I was depressed. My home life, my work life and my emotional life were all suffering badly.

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FACING MY DEMONS
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Then something clicked in my head. I think it was when I sat in the swivel chair in my home office, leaned over to get something I had dropped and three things happened simultaneously. My trousers ripped right up the crotch, my vision went blurry at the strain of reaching over, and the chair support snapped. I was ingloriously deposited onto the floor and struggling to get up when it all hit me like a hammer blow.

My wife ran upstairs on hearing the loud crash, and found me inconsolable - tears steaming down my face. We sat there on the floor, holding each other - as three years of avoidance, guilt, denial, frustration and anger came to a head. Those emotions were in good company - shame, misery, disgust and self-loathing had already been in the building for quite some time.

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THE ROAD BACK
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I went to the GP the next day to have my bloods drawn, and had a heart to heart with the diabetes practice nurse. She was ever so sympathetic, but she was also determined to get me on the road to recovery as soon as possible. She demanded that I return in three weeks with a plan to help me get my life back on track. I went home, discussed it with my wife, and we joined Slimming World that same day. Three weeks later, and already 10 pounds lighter, I checked in with a delighted Nurse Langan, who was cock-a-hoop at my initial progress.

More sobering news was to come from my GP. My HbA1c had crept up to 10.2 mmol, which was considered high risk. My cholesterol was on the cusp of needing statins to control as was my blood pressure. My liver and kidneys were showing the early signs of impairment - the kidneys due to the strain being placed on them to deal with all that excess sugar, and the liver because my body had nowhere else to deposit my fat. I was turning into foie gras. Then the most dreaded news - I was on the verge of needing to inject insulin - usually the last resort in diabetes treatment, as the drugs were no longer having any appreciable effect.

However the good news - the fantastic news - was that all of this damage was reversible, and I had already taken the first steps to address them. My doctor told me "I don't know who your guardian angel is, but you've arrived here just in time". He suggested I return in late April for a fresh test, as he was keen to resign my horrible blood results to the dustbin.

When I returned in April, thanks to Slimming World, I was four stone lighter. I had lost seven inches from my waist, two from my collar and was wearing suits and ties again. My confidence was through the roof, and my depression and self-destructive behaviour were left well and truly behind. I have never been so happy to give blood in my life.

My test results? Better than I could ever have hoped. I am now maintaining a blood reading of 5.9 mmol, I am off pills altogether, and my glucose levels are being controlled through diet, exercise and weight loss alone. I am more energetic and outgoing, and my marriage has never been better. My wife is pregnant and we are expecting our second child in October. I have a fresh determination to ensure I am around to see my grandchildren.

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BACK IN CONTROL
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I was thrown a lifeline five years ago, and like a fool, I cast it away. If I have one regret throughout this whole experience it's that I woefully underestimated the emotional and psychological impact of my initial diagnosis. I dealt with it like a typical man - all bravado and confidence on the outside whilst scared stupid on the inside.

Seeing my wife's reaction at the time, I was determined to be strong for her. In doing so, I denied my own need to meet with this affliction and deal with it. It has taken me a long time to get my head straight and really get a handle on this disease. Along the way, I have learned a great deal and am eternally grateful for those who have supported me through some very dark times.

It's not all bad. In fact, ironically, it could be the best thing that ever happened to me. I am now eating much better, have lost loads of weight, and lead a much healthier and active lifestyle than I ever would have had I remained just "fat" instead of "diabetic". Instead of keeling over at 50 with a heart attack, chances are I've actually extended my life expectancy appreciably.

Diabetes is not the end of the world. It is simply another challenge to overcome. I refuse to let it own me or define me - and most days, I forget that I even have it.

Thanks for reading. 8^)

© Hishyeness 2009

Summary: A condition that is as limiting as you allow it to be