Diabetes – a personal journey

NHS - Friend or Foe? My conflicts and battles managing my diabetes

Diabetes and Politics

Theresa May and Diane Abbott both have diabetes.

May has publicly stated that she has Type 1 which means she has been managing it from a child. She injects 5 times a day. We can assume that she well understands how to control it.

The danger is always too low blood sugar=ratty, too high=tired.

Diane Abbott has Type 2, which occurs in later life. She has admitted that during the last election her diabetes was “out of control” (Daily Telegraph https://www.telegraph.co.uk/news/2017/06/14/diane-abbott-reveals-diabetes-control-election-campaign/)

“Diane Abbott has revealed her type 2 diabetes affected her performance during the general election campaign.

The Labour MP was replaced as shadow home secretary because of ill health just 48 hours before polling day, having appeared in a series of ‘car-crash’ broadcast interviews.

Ms Abbott, 63, told the Guardian “everything went crazy” during the campaign and her diabetes had been “out of control”.

We can’t know how well she is controlling her diabetes. I hope it is well. But, stress also plays a part in the control of diabetes. Uncontrolled blood sugar is not good and irrespective of where you are on the political, one should wish her better health.

Diabetes is a straightforward disease to control if you know what you are doing and understand how to monitor and control it.

In order that the NHS can treat it they have to arrive at procedures which, on average, will do just that. There is excellent monitoring, especially for eyes. My impression is that the NHS cannot afford to treat diabetes on an individual basis. There are so many variables:- diet, exercise, stress, weight.

Diabetic “A” could compare their treatment with Diabetic “B” and find their health professionals treat them differently.

In this article I want to address how MY diabetes has been treated and how it didn’t get better until I took 100% control of it. The NHS can makes mistakes and they try and treat everyone as the lowest common denominator.

How did it start for me?

40 years ago I went to see my GP:-

“Doc, I’m drinking too much!”

No doubt he was concerned and relieved that I could admit to him that I had a drinking problem.

“I’m drinking loads of fruit juice but I just get thirstier and thirstier”

He responded:-

“Right, let’s take your blood sugar level”

After a finger prick and measuring my result with the colour coded test strip vial he said:-

“I want you in hospital right away. You’re diabetic and your blood sugar level is dangerous”

Two hours later I was in a hospital bed. A visit from a doctor, a nurse to take my blood sugar four times a day and night along with an injection of insulin drawn from a phial into the biggest hypodermic you have ever seen.

Lugosi, Going Postal

“You will be doing this for the rest of your life. You need to learn how to give yourself insulin and test your blood sugar”, said the consultant.

He was wrong (at that time)!

Diabetes awareness has accelerated over the last ten years. There is no social stigma attached but there are some restrictions for diabetics when it comes to driving vehicles or flying a plane. I have to re-verify my driving licence every three years.

Many years ago the diabetic icons would be Gary Mabbutt of Spurs and incredibly our greatest Olympian Sir Steve Redgrave. Today the most public diabetics are  May and Abbott.

Diabetics walk amongst us and we would rarely know who is and who is not. And many will have diabetes and not know about.

Lugosi, Going Postal
(Diabetes UK)

The forecast is 5m by 2025.

Diabetes is the inability of the body to maintain your blood glucose level to a safe level. In the UK we measure these levels in mmol. The body controls these blood sugar levels by producing insulin from the pancreas.

“Normal and diabetic blood sugar ranges. For the majority of healthy individuals, normal blood sugar levels are as follows: Between 4.0 to 5.4 mmol/L (72 to 99 mg/dL) when fasting. Up to 7.8 mmol/L (140 mg/dL) 2 hours after eating” (Diabetes UK)

In Type 1 diabetes you are born with a pancreas that just doesn’t work so you have to go on a regime of insulin for life. You have no choice.

In Type 2, my type, it’s also known as “adult onset diabetes” where the pancreas might work but doesn’t produce enough insulin to cope with your food intake. You can also develop “Insulin resistance” so you need more insulin than is normal to bring down your blood sugar.

Insulin is a body-building drug. Take more insulin and you put on weight by converting glucose to body fat. You become resistant to insulin so you need more, so you put on weight…….

I have found the care provided by the NHS towards diabetics to be variable. 40 years ago they were plain stupid. The doctor was wrong about me being on insulin for the rest of my life, although I have ended-up that way 20 years later when I went on insulin voluntarily.

In the hospital I was supposed to have an injection every six hours and my blood sugar measured a while later. They forgot to give me two insulin shots but my chart showed my blood sugar had gone down. I confronted the consultant:-

“My blood sugar has gone down, you missed two insulin shots, so whose insulin is it? Yours or mine?”

He had to conceded it was mine so I left hospital with a prescription for Metformin. It was explained to me that Metformin was like sugar blotting paper. It mopped up sugar and deposited it in the muscles. What they didn’t explain is that it will also give you stomach cramps and loose bowel at the most inconvenient times. I eventually volunteered for insulin several years later and they have recently brought out slow-release Metformin, which is more expensive on the NHS so the doctor has to consider whether to let you have it?

What happens if you don’t control diabetes?

Diabetes can affect your limbs, nerves, eyes and stops your skin from healing properly. Nerve damage reduces the sensitivity of your legs to abrasions or scratches. A damaged leg may not heal well and can get infected. The infection can lead to limb loss.

The blood vessels in the eyes can lack oxygen due to diabetes. This causes the blood vessels to wander in search of nourishment. They could grow over areas of vision, permanently. You don’t know it’s happening until too late. Fortunately, most hospital eye clinics have a retinopathy clinic and even the local opticians have the equipment to warn you if it looks like it’s happening. A simple photo of the back of your eye tells them instantly if you may have a problem developing.

I have had laser surgery to cauterise wayward blood vessels and also had a condition called a vitreous haemorrhage where burst blood vessels effectively blinded me in one eye. I could have had an operation called vitrectomy where they replace the fluid in the eye with a clear fluid but declined as I didn’t want to spend six weeks facing down. After three months it cleared all by itself.

I also have a skin condition on my legs called Necrobiosis Lipidoica. Sound terrible but it’s like a kind of eczema, non-dangerous and they don’t know why. I don’t hide it. I wear shorts 80% of the time. Looks unsightly, legs get easily damaged and ulcers form. It’s not contagious or life-threatening.

Why am I telling you these “scare stories”? Because I want to make you aware that you may not know you have diabetes and it can be serious if unchecked.

How do you live with it?

Hypoglaecemia is when you blood sugar is low, less than 5.6. At 4-5 I am aware its going low and it would be illegal to drive. To rapidly raise the level I usually take some fruit juice with sugar.  I prefer tea with sugar but sometimes I don’t feel competent to boil that kettle.

At 2-3 you would kill someone to take their Mars bar away. You can get irrational and aggressive. You will be clumsy. Your speech might slur. You will perspire profusely. If I was in a supermarket I would have to take regular Coke from the shelf, sit down and drink it. Consequences be damned.

2-3 wakes me up. I carefully navigate downstairs and multi-task on the juice and sugar supplemented with some Penguin’s, Snickers or Club biscuit. I say “some” because you can get on a roll and end up eating 3-4.

If you don’t detect your low blood-sugar you can be irrational and aggressive to others without knowing why. Your mood changes rapidly.

Hyperglaecemia is when you blood sugar is high. This is where I make a personal judgement call. Above 8 is considered “high” but I will tolerate up to 11 if I was about to drive. At 11 I feel perfectly OK. But get 15-25 (as I have had) and you will feel tired. You know you then need to test your blood sugar to determine how much insulin to take.

And then the NHS means well but doesn’t always get it

I have rejected the advice and help of several consultants because I stepped outside of what I call “Broadcast Medicine”. This is where they have a formula, usually ten years behind contemporary wisdom where they say “Eat to this diet and take this much insulin”. It doesn’t work for me!

My conflict started when an old consultant said to me:-

“Here’s a chart I want you to write down what you eat for breakfast, lunch and dinner, and record your insulin intake and blood sugar”

I then have to explain:-

“But I don’t eat breakfast, lunch and dinner. I never have. Never in my whole life. I eat when I feel like it. I might only eat what you call “dinner” if I’m too  busy during the day to eat. Anyway, three meals a day is a social construction. Did cavemen eat breakfast, lunch and dinner?”

“Break-fast” is the first meal of the day after waking. I guess “normal” people wake up with low blood sugar so they need to eat something. I don’t. The exception is when I have been excellent at controlling by blood sugar and wake up with a 4-5 and will eat two slices of toast and put some sugar in my tea.

“And how much insulin do you take?”

This one always brings me into conflict because they ALL ask it. I’ve had diabetic community nurses accuse me of not wanting their help because I was being obstructive. I was stopping them from writing something in their boxes.

The CORRECT answer to this question is:-

“The amount I have worked out based on what my blood sugar is at the time”

It’s OBVIOUS! Why would I take 30 units that counters a glucose level of 15 for me if my blood sugar is 6 at the moment? That would mean I will go hypo in an hour.

I put everything in a spreadsheet and sent it to his diabetic nurse. They invited me to see their dietician to see if they had any advice. I turn up and they start to interview me:-

“Now, what do you have for breakf…….”

“Hang-on, stop! I sent you all my spreadsheets last week!”

“What spreadsheets?”

I got up and walked out. Told my GP I wouldn’t be using that consultant again.

From bottom of the league to top four

I discovered a great book that may have saved my life:-

“Think like a Pancreas” by Gary Scheiner

The idea is bloody simple:-

“You don’t have a proper pancreas so you need to monitor your blood sugar and put in the insulin. Do it regularly. Think and act like your pancreas”

I went from being one of the worst controlled diabetics to the top 5%. I took an active interest in my diabetes rather than rely on the NHS. They say that diabetes is the disease managed by its sufferers.

I still get my 6 month check-up know as Hba1c as well as kidney function. I have to sit with the nurse who would have been at home in a German prison camp and same questions come around to be filled-in on her paperwork.

“What do you eat for breakfast, lunch and dinner. You MUST eat breakfast?”

“How much insulin do you take?

I simply answer:-

“My six month blood sugar results are good. Whatever I do, whatever I eat, whatever insulin I take, it’s working. So, I’m doing the right thing. It’s irrelevant that I skip breakfast and use variable amounts of insulin because what I’m doing is working. At age 15 I was 10 stone, playing football for hours and never eating breakfast.”

We will make body builders of you all

20 years ago I said to my consultant:-

“I’m fed up with these tummy upsets. Can’t I just take insulin?”

He agreed and I learnt how to inject. The hypodermic has been replaced with pre-filled pens that are kept refrigerated but can survive 28 days outside the fridge. Novo Nordisk are the biggest suppliers:-

Lugosi, Going Postal

Pop off the cap, screw in a fine needle, twist dial your amount and push the twist dial in to inject. When the nurse demonstrated it to me she gently jabbed it into her own thigh to prove to me how sharp the needles are. They are incredibly painless (unless, like most diabetics, you don’t change your needle until it gets so blunt…… ouch!).

And you get two types:-

Slow – would slowly mop up any sugar in your blood stream. It’s called Background insulin and mimics what the pancreas does.

Fast – After eating your sherry trifle, mashed potato and steak pie you need to whack this in to bring down the inevitable sugar spike.

Great, I thought, “I can polish off a cream cake and the fast insulin will get it”

What they DON’T tell you is that insulin is also used by body builders. Insulin WILL get the sugar but will also deposit it as fat to be stored for later. Unfortunately, I built my body. The more dense the body so you get more insulin resistant, so you need more insulin, and it becomes a spiral to overweight.

My job in IT was sedentary. Stopped playing squash when I broke my arm. Stopped playing footie when I was 20. Weight creeps up on you.

So, here’s your new diet

And another thing about diabetic advice is the “diabetic diet sheet” ANY diet sheet, is a permission to eat. But I don’t eat those meals with those popular tags “Breakfast, Lunch, Tea, Dinner”. So, what am I to do with a diet that says:-

 “One slice of toast, margarine or small amount of butter and tea with no sugar (duh)”

I can tell you that one slice of white bread has loads of sugar in it. I would need about 15 units of insulin to compensate.

You will notice that general dietary advice has tended towards fat and protein in recent years. Traditional diabetic diets relied on starch, potato, vegetables and small amounts of protein. But it’s the starch that RAISES blood sugar and gets converted to fat. The theory was that if you ate a complex carbohydrate (potato or rice) then its complexity meant it was broken down slowly into sugar so you didn’t get a blood glucose spike. But if you didn’t exercise it would go to fat to be converted back into sugar.

That’s when they implemented the Glycaemic Index for food and guidelines to how many of those units you should consume a day. There were diabetic diet programmes based on these, started in Cambridge as I remember, but given the variableness of NHS trusts some people would never have been advised about them.

BTW, the idea of fat and protein is at least 157 years old, and not a recent idea as articulated in several diets like Atkins.

I read about it in a book called:-

“Eat Fat – Grow Slim”

By  Richard Mackerness. Published 1976.

He derived the diet from an 1861 publication by a Harley Street surgeon Mr William Harvey who implemented a high fat and protein diet, with great success to a corpulent London undertaker, Mr William Banting. It is also known as “The Banting Diet”.

It’s like trying to land a lunar rover

Lugosi, Going Postal
© NASA under free, personal, website use

The goal is to calculate fuel and burn so that you land on a glucose level of around 6. It has a direct analogy with calculating your variables to touch down at the right speed on the lunar surface.

Let me give you a recent experience:-

For my last meal of the day I eat a large steak and no carbohydrates. I take a Campari, white wine and diet lemonade. Helps me sleep. I now have to take my blood sugar to decide what slow and fast acting insulin I need overnight. My blood sugar is 14. I calculate a tiny bit of fast, 12mmol and small amount of slow, 40mmol. Given the phenomena whereby your blood sugar can rise when you sleep I reckon this might land safely by the time I wake up.

However, the alcohol does strange things. Initially it raises your blood sugar but later it lowers it. How much? I’m not sure. It’s also going to depend on how much carbohydrate I ate. Whoops! None.

I go to bed. At 3am I wake. I know the feeling. Its low blood sugar. Must get sugar! I don’t like the glucose tablets. I prefer chocolate bars and teaspoons of sugar in fruit juice. If my mind is competent and my standing steady I will make some tea and get sugar that way. I carefully negotiate the stairs.

I don’t bother taking my blood sugar. It’s going to be 2-3. Anyway, too shaky to bother. MUST get sugar. After about 8 bars, Orange Penguin, Orange Club & Mint Club, plus 4 big spoons of sugar with juice I’m feeling better. I did say that low blood sugar makes you irrational!  Ok to climb the stairs to get back to bed.

At 8am I take my sugar level, 17!. I have over compensated. I whack in 20 units of fast insulin and have my usual mug of tea with tablets.

By 10am I check again because I will be driving. 20!??

How did it get to 20 despite taking insulin? There’s not much sugar in a little milk in my tea, I don’t take sugar in it so where did the sugar come from? I take a cautious 12 units and carry my glucose tablets in the car.

I get back at 11:30am and its down to 12.

Like I said, it’s like trying to land on the moon!

There is another factor at play. How much exercise will you do to burn sugar?

Another weird one is if you diet then the lack of immediate sugar in food means your body will convert your fat into sugar and that will, of course, raise it even if you haven’t eaten. Whack in some insulin and the released sugar goes back to fat. It’s hard to win.

I hope I have demonstrated how complex it can be to manage your diabetes. It will be very difficult for a politician. Meetings, snatched food, interviews, stress, little exercise, maybe eating late at night could certainly leave you ill and fatigued. It can impair your performance.

The worst food you can eat, BTW, would be something like a bucket and fries. The fast energy comes from the chicken which means the carbs in the fries go to fat. It’s curious that fat alone does not go to fat but take carbs and you are in trouble.

I remember a popular diet in the 1980’s was steak and eggs, protein on protein.

In conclusion

  • Diabetes is a terrible disease. Do any of you putting six pints, or more, into your body a night realise how much sugar you are putting into your bodies? You may not be pissing it away because it is six pints and bladder is full because frequent urination is also a sign of too high a sugar level in your blood.
  • Diabetes is a silent disease. You don’t know you have it. Don’t let your first warning be your eyesight!
  • Make sure you get your blood sugar tested. Lie and go to see you GP and tell them that you have been tired a lot, urinating a lot and wonder if you have diabetes.
  • Take control of your diabetes. Follow some of the advice but always be sceptical.
  • Get a blood glucose meter if you are diagnosed. They are free or cheap because the companies make money selling the test strips. Test you blood sugar 3-5 times a day until you build up a pattern of what food does to your glucose level.
  • Don’t let it stop you having a blow-out. If you are on insulin you can certainly correct that with a bigger does.
  • If you are prescribed Metformin and it upsets your tummy then demand the slow-release version.


© Lugosi 2018

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