Wednesday, 7 July 2010

Brittle Diabetes: Not the final answer

Four years ago I visited my doctor because I couldn't take it anymore. I was tired, hungry, emotional and bordering on depressed - again. I was going to the gym, had lost weight and was incredibly healthy, by any standards. I was trying to eat in a way my blasted body might agree with and could say with one hundred per cent certainty I was giving it 'my all'.

And yet this still wasn't enough for my alter ego - diabetes. Every single day there were blood sugar levels from 2s to 32s (40s to 500s). There was deep hunger, shaking, tiredness, grogginess and distress. When your meter starts to tell you that you are no longer on the number scale anymore, but instead has found so much sugar in your blood that it now simply reads 'Hi', it could make even the most thick-skinned person break down.

I told my doctor this, in a flood of tears and in a cry for help.

I should probably explain here that my doctor at the time was someone who didn't beat around the bush. The last time I had seen him he had disapprovingly rolled his eyes as I told him I hardly ever got my blood sugars under 8mmol. He had told me that, 'I knew what would happen,' if I didn't work harder.

I did know. That's what was hurting me so badly, couldn’t he see?

But this time things were different; I was exercising, dieting, monitoring, analysing, weighing, recording, obsessing. Yet still I was swinging from 'eurgh' to 'uh-oh', on a daily basis. I could not have done anything more, and yet when I realised I was going to be seen by the same doctor, that feeling in the pit of my stomach returned. The five letter word all diabetics become all too well acquainted with. Guilt.

'It's my fault, I'm still not doing enough, I should be at the gym more, weighing things better, shouldn't drink, shouldn't smoke, shouldn't affect my routine, don't get too upset, don't get hot.'

There aren't enough expletives to describe how I felt that day. That year. That decade.

But to my disbelief my doctor told me that he could see how much I was doing. He congratulated me on losing weight, commended me on doing so many tests and welcomed me for asking for help.

"I can see how much you are doing, Anna, and there is a small group of diabetics who are described as 'brittle' diabetics. That means they are very sensitive to any kind of change. The kind of change you can't really cater for. I believe from seeing you today that you fall into this category."

Two things happened that day.

Firstly, I finally breathed a sigh of relief. Relief that at long last I had some sort of explanation as to why my sugars swung from 2 - 30 (20s-500s) within a matter of hours.  Why exercise meant one thing one day and something entirely different the next, and why no matter how hard I tried, I seemed to get it wrong. But I wasn't wrong. It wasn't my fault.

Secondly, I sort of - for want of a better explanation - 'gave up'. I didn't stop injecting or worrying about what could happen if I carried on like this. Believe me I wish I could have. But I did resign myself to the fact that this was just how it was going to be. I was going to have to face this battle every day and if making extra effort to control it made no difference, why bother at all? Why put myself through it?

I 'gave up' for about 4 years.  Dealing with each high and low as it happened, I fought my way through each day. Crying over one test result and smiling over others. The swings and roundabouts went on like this until August 2009, when I finally decided I'd had enough of the games. The swings and roundabouts did nothing but cause my head to spin and leave me dizzy. I decided the pump was the next thing to try. It was my only option left and my chance at not losing my sanity.

Since that decision my world has become almost unrecognizable. Suddenly effort paid off and 'stable' was no longer just a place you keep a horse, it was something I could expect from my diabetes. My sick time at work declined, my retinopathy was stopped dead in its tracks. I even got the feeling back in the left side of my foot.

I was also no longer 'brittle'. I am no longer brittle.

I make a point of commenting each time I see someone talk about brittle diabetes and say they can’t help it; that it’s just the way they are.  Because I no longer believe brittle diabetes is something you have to put up with. It is NOT an explanation. It is NOT a get out clause.

But I still remember the desperation. I still remember the pain.

I know that at the doctor’s that day all those years ago, I needed a kind word. I needed to hear that I wasn't a failure. I needed an explanation. But the effect that explanation could have had, may have led things in a very different direction for me. I could have given up all together. I could have stopped taking my insulin, I could have carried on smoking in my anger at the world and I could have stopped looking for answers.

I could have lost it all by now.

Brittle diabetes is a very real problem but only because it is handed out as a get-out clause that people are told they have no control over.  One that people don’t realise is something they may be able to address. I hope others will realise this before the specialist tells them it’s too late. I hope it comes before they lose the ability to walk, see or live. Their ability to thrive.

I live in hope.


  1. It is really sad. The depths you can reach when you can't get things right day in and day out is shocking.

    Even if people don't want a pump, or if they have great control on MDIs, I still feel so strongly that pumps and more education should be there for everyone.

    Hope it didn't upset you too much. I didn't mean to do that, just remembered a few old feelings when I read some posts about being brittle and how hard it really is.


  2. I have brittle diabetes and I have also been on an Insulin pump, this isn't the answer for everyone as the pump did not work for me (I was on it for two years). I have IBS and unfortunately this causes irregularities with my blood sugar levels that a pump cannot deal with. The insulin pump is designed to deal with people that have regular highs and lows; at, or near the same time of day every day and then is setup to adjust itself to this pattern. When you don’t have a pattern like that (like myself) then the pump is no more use than injection. What do people with brittle diabetes like mine do as i have had it over 16 years now, lost countless jobs and am struggling everyday just to get out of bed? i also have a hypo alert dog as i drop so quickly i have no indication that i am having a hypo anymore. If you have any ideas how i can make my life better please let me know!!

  3. Hi Vicky,

    I'm so sorry I only just spotted this and have no idea if my reply will reach you?

    I'm sorry to hear that you have struggled so much and that the pump didn't agree with you. I guess many people are probably in the same situation.

    I'm only a little familiar with IBS, but are there certain food groups/types that don't agree with you? I guess the first thing would be to look a that and see if there are any types of foods which aggravate you more than others.

    There's no chance it could be connected to Coeliacs is there? Only there seem to be such a strong connection with diabetes.

    Another source worth checking out may be Dr Richard Bernstein's Diabetes Diet. He is a type 1 who is quite anti-pumps and has an amazing history. He was an engineer whose beliefs that low carb can reduce and even reverse complications were mocked because he wasn't a professional, so he took it upon himself to go to University and get qualified! He is now viewed as 'the guy' who brought about low carb thinking for diabetics, and has really strong views about how diabetics should be able to expect the same sugars as a non-diabetic. Might just help you to get an idea of what tricks you can do to avoid some of the crazy swings. I was very surprised when I read up about which foods have the biggest impact, and thanks to one of his breakfast recipes I've managed to get my morning doses almost spot on

    Might be worth a look.