#WalkWithD

I’ve walked with diabetes for 28 years. Pumping is a relatively recent journey, started only 5 weeks ago. This is a little bit of insight into a pumper’s routine.

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Glucose Management and the Road to Now

SERIOUSLY LONG, CANDID AND RAMBLING POST AHEAD: ENTER AT YOUR OWN RISK:

In my Facebook group today, following a post about the benefits of regular blood glucose testing, someone asked me what was the catalyst that prompted me to start blood glucose testing on a more regular basis as I do now.  I don’t think there was any one particular catalyst that I reacted to and I think to answer the question properly i’d have to go right back to the beginning.

 

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I was an overweight teenager and when I was 13, my 18 year old brother was diagnosed with type 1 diabetes. I got taken in for multiple Oral Glucose Tolerance Tests and was told if I didn’t change my diet i’d be diabetic by the time I was 20. Fast forward a few years, and even though i’d lost quite a bit of weight in that time,  I found myself 19, pregnant and diabetic. The prophet of doom had come to pass! I was immediately put on insulin as most women with gestational diabetes are and had a horrendous time during pregnancy. I suffered from morning (all day) sickness throughout the pregnancy, I couldn’t keep any food down and as a result, spent a lot of time in hospital. My daughter was born in 1986, 4lb 7oz (small for a baby of a woman with diabetes) by caesarean section and I was taken off insulin. I was cured! Sadly not, 2 days later I was given a diagnosis of type 1 diabetes and put back on Humulin I insulin, twice a day for the rest of my life!
A week later, we left the hospital. I was 20, with a new baby, sick, on my own and given a pamphlet on living with diabetes. That was the extent of my diabetes education. I saw my endocrinologist 6 months later. I’d experienced quite a few low blood sugars in that time and so to avoid this, I deliberately ran my glucose levels high. I couldn’t be low with a new baby now, could I? And skipping injections also had the added bonus that I didn’t gain any weight. My endocrinologist wasn’t very happy with my glucose management and berated me, quite vocally. I had to stop smoking, I had to get my glucose levels down, I had to take care of myself! I was labelled as non-compliant at that early stage and that set the tone for my diabetes clinic check ups for years to come.

I developed a bit of a F**k You, diabetes  and a F**k You, healthcare team attitude. I was a partier and on the weekends when my daughter went to stay with my parents i’d let loose and give diabetes the metaphorical finger and the least attention I could. I didn’t test very often because my glucose levels were always going to be high and I didn’t want to see the reading – it’d only get me down. It all took its toll on me. I had multiple hospital admissions with DKA in the early years and just generally felt ill and tired all of the time. I knew what I was doing was self destructive but I couldn’t figure a way to get out of the hole i’d dug for myself. At that point I accepted that diabetes was ALWAYS progressive and I was going to die young. It’s not what I wanted, I was riddled with guilt, fear, frustration, shame, and any other negative emotion you can think of and I repeatedly asked for help but sadly, it just wasn’t forthcoming.

During my annual eye screening the early stages of retinopathy were picked up and I was terrified of losing my sight but that still wasn’t enough to make me change my ways. In 2003 or 2004, I got an infection in my foot and ended up having my first toe amputation. Well, it was only a toe, wasn’t it? Such a small thing in the grand scheme of things but it absolutely floored me. Again, the endo tutted at me, said I had to start being compliant or I was going to lose a leg or go blind! Well, that bit of advice was the only help I was offered and frankly, although it terrified me, it really wasn’t very helpful! I felt like i’d been put on the scrapheap and left there to rot. Fortunately, I worked for a good employer at the time and they were very supportive, as were my daughter and family, who have been the whole way through.

Then I decided I needed to do something to help myself and took to the internet. I came across the idea of DAFNE (Dose Adjustment for Normal Eating), a course run for people with type 1 diabetes that teaches them to match carbohydrates with insulin doses. I thought that was exactly what I needed. They weren’t running one in my town but I found the  one nearest to me and had to fight with my PCT to get them to fund it. Work gave me a week off, half of it paid and I attended the DAFNE course. At this point they put me on a basal/bolus regimen, an intensive insulin therapy designed to more closely mimic the natural action of the pancreas. Where before I had to eat to my insulin, I was now learning to take insulin for what I was eating. A very subtle change but quite a significant one.  I learned how to carb count, how to adjust my insulin (I never adjusted the Humulin, other than to occasionally skip a dose!) and how to test my glucose levels regularly but I was still unable to step off the glucose roller coaster. I started off with good intentions with record keeping but it always tailed off. The numbers were never in range, so what did it matter if I wrote them down or not? I still tested regularly but as I had nothing to show at clinic, I was still considered non-compliant.

Skipping ahead to 2009/2010, I spent much of that time in hospital. I had multiple operations on my feet and was on IV antibiotics for most of that time, both in hospital and at home via a PICC line. In total, I had 4 toes removed and some of the bones down the side on both feet. During my last hospital stay, my brother was also admitted and was fighting end stage kidney cancer, to which he sadly passed away. I hit my lowest point in that hospital bed and I wanted to die. It was only my daughter that kept me connected. Together, we begged my endo to get me some help and he agreed to put me forward for CBT (Cognitive Behavioural Therapy). Despite my best efforts, accessing the mental healthcare services proved extremely difficult and 6 months later when I finally saw someone, I was told they couldn’t help me. By this time, I was getting myself together a bit anyway and i’d decided to give up on the professionals. They based their judgements and opinions of me on a 10 minute appointment once or twice a year and all they saw was a bad diabetic. They didn’t see my life. I’m not blaming them as I take full responsibility for my own actions but they certainly didn’t help. I needed guidance and education from them and I got judgements and recriminations instead.

I got together with Mr B in 2011 and I realised I was only in my mid 40’s but I felt old, really old. I was sick and tired of feeling sick and tired, so I decided to go searching again. I realised that no-one would magically sort this out for me, I had to become my own expert. I started reading everything I could about diabetes. I monitored, tested and recorded my glucose levels and adjusted my insulin doses but I still couldn’t get it right. I was extremely frustrated at this point because I felt like I was trying to take back control but no matter what efforts I was putting in I just wasn’t getting the results I wanted.

With A1c’s consistently in the low to mid teens, I was constantly juggling and tweaking and trying to gain good glycaemic control but instead feeling like a failure because I  could never achieve it. I spent endless hours weighing and measuring food, trying to balance doses of insulin to carbohydrates, feeling endless frustration of the numbers never being where I wanted them to be, waking up in debilitating hypo or feeling the adverse effects of uncontrolled high blood glucose levels. And then I came across the idea of low carbing. I always knew that the more carbs I ate the more insulin I had to take but for some reason the penny never dropped. It took me that long to work out that following standard dietary guidelines wasn’t working for me. It was almost a ‘Eureka’ moment.

I spent the next year thinking about it and researching it. Was it safe for me? Was it sustainable? Didn’t I need carbohydrates and what about ketones? But finally I got to the point of thinking what have I got to lose? I read Dr Bernstein’s book and his Law of Small Numbers made so much sense. The more carbs you eat, the more insulin you need and the greater the likelihood of getting it wrong. Little inputs make little mistakes. I ordered some of his glucose logs from the internet and in October 2013 I was ready to take the plunge. I went to see my specialist and discussed what I was planning to do. He had his reservations but he could see that i’d looked into it carefully, he recognised that nothing else had worked for me and offered me his full support. At that time my A1c was 11.3, a level that puts you at high risk of diabetes complications, including kidney failure, heart attack, stroke, blindness and amputation. I’d never considered a pump before but for some reason I asked him to consider me for one at that appointment. He outright refused but I understood as a pump is only as good as its operator and my track record was poor.

Initially, I went very low carb and this completely overturned some of my poor dietary habits of a lifetime. I was no longer doing late night shop runs for a little tasty sweet something. I had such a huge dietary overhaul that I think other things just slotted into place at the same time. I started testing regularly and recording the results. I wanted to see the effect that different foods had on my levels, I wanted to know how much my insulin affected me and I wanted to keep my levels within a tight range. By recording the results I could see patterns emerging and make the adjustments I needed to. I realised that i’d been trying to drive from the passenger seat for so many  years and felt that, for the first time, I was back behind the wheel. It became my daily challenge and seeing better numbers was a powerful motivator. It made me want to test and record and in a nutshell, I developed better habits. In March 2014, I went back to my endo and my A1c was 7.7 and he offered me a pump. 🙂

The numbers still go up and down now but by carrying out the regular testing and recording means I can make adjustments sooner and try to avoid the huge high and low glucose levels that are exhausting. Probably, i’m a bit consumed by all things diabetes related at the moment but I think it’s a worthwhile pursuit. Diabetes is a condition that has to be micro managed continually on an unrelenting day to day basis and my journey has made me realise that patient education in diabetes self management is extremely lacking.  I’ve realised the huge value of online support and that was part of my motivation in setting up this blog and my Facebook group.

https://www.facebook.com/groups/361927160611309/

I’m still a long way from where I want to be with regards to my targets and it’s a constant work in progress but as long as i’m heading in the right direction, i’m happy with that progression. I don’t think it’ll ever slide back to where I was before, it wasn’t a good place to be. But to answer the original question, there was no one catalyst, just a series of roads which all lead to now.

Ps. I went for my pump training today and got my pump.  I’ve called it Gus, short for Mr Snuffleupagus. Yeah, some kind of bizarre mind tangent took me there! 😉 And, my A1c is now down to 7.1 – see, progression!

 

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Bye for now,

 

Julie

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Dear Diabetes

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Dear Diabetes

Well, we’ve been together for a long time now. You’ve been my constant companion throughout my whole adult life. You sat in the passenger seat when I learned to drive, you rode pillion when I passed my motorbike test, you came into the hospital with me when I got Chicken Pox at 22, you attended University with me, you were there when my daughter was born, you were looking over my shoulder when I met and fell in love with Mr B and no doubt, you’ll be there, hovering in the background, when I take my last breath.

You’ve experienced every nuance of my adult life. You’ve always been there, lurking in the shadows, biding your time and waiting for your moment. You’ve gone through the ups and downs of day to day living with me. Sometimes, you blended gently into the background but at others you’ve been a force to be reckoned with and a right pain in the ass. Sometimes, you’ve been content to let me man the rudder and find my own path but at others, you’ve tried to steer me in directions I didn’t want to go.

I’ve tried to fight you but to no avail. You’ve made me angry, scared, frustrated as hell and could make me cry at the smallest provocation. You’ve riddled me with guilt and plunged me into the depths of despair because I didn’t give you the time and attention you deserved. At times I’ve lived in denial, refusing your very existence but you didn’t care what your reception was, you were there whether I acknowledged you or not. Always waiting in the wings, ready to pounce at inopportune moments.

I’ve felt your hot breath as my body burned from ketoacidosis and I’ve felt your cool touch as my glucose levels plummeted down. I’ve tried to ignore you, shake you off or leave you behind but your tenacious grip on me has to be admired. You have been unfailing in your determination to hang on and now your grip is so tight that the separation between you and me has become blurred and indistinct.

I can’t remember what life was like before you came into my world. The carefree existence of not having to worry about what factors will wake you up and let me feel your wrath. You affect my blood glucose levels, my mood, my health and my mobility and your prevailing influence permeates every aspect of my life.

Upon reflection, I can see that i’ve been grieving for my former life. Shock and denial allowed me to avoid the pain of your reality. Then the pain and guilt kicked in, with feelings of frustration and remorse over the things that I did or didn’t do to avoid you. Close on its heels were anger and bargaining and questioning, “Why me?” This was then followed by a period of sad reflection where I realised the magnitude of the loss of my former life and was accompanied by feelings of depression and despair.

But, I now know you’re not the malevolent entity that I once made you out to be. You can’t help what you are, you just are. Without me, you would cease to exist and so, I must recognise our co-dependence and learn to live with you. I’m on the upward turn and as I handle you with a more organised approach, I feel calmer. My mind is working again and i’m actively seeking real solutions and reconstructing my life around you, not against you.

Diabetes, I won’t fight you anymore. I accept you and look forward to the rest of the life we will share together.

Bye for now,

Julie x

 

 

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Too low or not too low: That is the question!

I’ve been eating a low carb, high fat diet for about 6 months now. Mostly, my glucose levels have stabilised quite well. I still have the occasional low but they’re very few and far between. And I still have the occasional high but they don’t reach the astronomical heights that they did in the past when I was still eating a moderate to high carb diet. That is, until this weekend!

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As well as being a full time diabetic, i’m a part-time Viking re-enactor. From May to October, most weekends you’ll find me sleeping under canvas, cooking over an open fire and generally living the life of a Viking or Saxon woman throughout the Dark Ages. We have about 30 people in our group, including many warriors, a priest, women, children and dogs. We, as a war band and a family group are part of the wider group, the Viking Society. In preparation for the season soon to start, this weekend was our Society organised training weekend.

It’s a chance for new combatants to learn how to fight and to pass their basic combat tests, so they are safe to go on the field when we recreate historical battles. It’s an opportunity for seasoned veterans to hone their skills and to undertake any advance combat tests, such as the mighty Dane Axe or the very skilled Florentine where they fight with a weapon in each hand. It’s a time for anyone to learn a new craft from the period, such as basket weaving, naalbinding (a form of Viking knitting), embroidery, felting or many of the other crafts that were part of everyday life for the people living throughout that timeline.

I knew the weekend would be a challenge for me foodwise. I hadn’t thought it through as much as I should’ve and in hindsight, I was unprepared. I had no easy access to my kitchen at home and all the items I now take for granted, such as my kitchen scales and my food calculation book. And, although i’d taken food for breakfast and to snack on throughout the day, i’d not given any thought to dinner, thinking that I could grab something suitable locally. Unfortunately, in a carb-fuelled world, that’s easier said than done!

We found a fish and chip/kebab shop and Mr B had a portion of fish and chips and I choose kebab meat and salad with garlic mayonnaise. As well as my dinner, I had a little bit of Mr B’s fish, too and did my carb/protein estimations and took a 7 unit dose of  bolus (quick acting to cover the rise in blood glucose due to food consumption) insulin. Sitting around the fire, an hour later I felt like the earth was sucking out my energy through my legs. I could feel it draining out of me as my glucose levels started plummeting. Despite the brain fog and confusion that was now settling in, I managed to stumble into my tent and find my glucose testing kit, and through years of practiced experience carried out the test. I wasn’t surprised to see the meter was reading 2.9mmol/l (52.2mg/dl) as by this point I was shaking, sweating, dizzy, disoriented, slurring my speech, feeling anxious, feeling ravenous and the veil between normalcy and the surreal world of hypoglycaemia had well and truly come down.

It was at this point, in my swirling thoughts, that I remembered I hadn’t picked up glucose tablets before we left. Now, glucose tablets to a type 1 diabetic are a lot like American Express – don’t leave home without them! We had a bag of goodies that we’d picked up to nibble on as we were travelling, so I promptly stuck my head in the bag and inventoried the contents: Olives, nope, no good. Cream cheese, nada. Carrot sticks, oh dear. It was looking grim until, suddenly, I spotted Mr B’s chocolate biscuits and caramel chocolates. I’d hit on manna from heaven. With incredible restraint, I daintily scoffed down half a biscuit and a couple of chocolates.

Now, you often hear people say that you can treat a hypo with chocolate. I’ve lost count over the years of the number of people I’ve heard say that the best treatment for hypo is a Mars bar. This is so incorrect as to be downright dangerous. The form of sugar in chocolate has to first be converted to glucose through the digestion process and this process is slowed down by the absorption of fat in the chocolate. This is a slow and clumsy way to manage a hypo and will take a while to raise the glucose levels to a reasonable level.

20 minutes later I checked my glucose levels again and I was still falling – I had now gone down to 2.7mmol/l (48.6mg/dl). I munched another biscuit and a couple more chocolates and waited. At this point Mr B woke up (he’d been snoozing in front of the fire) and realised what was happening. He promptly diluted a teaspoon of sugar in some hot water and gave it to me and insisted I drink it. At first I refused. Belligerence is only one aspect of hypo and not a pretty one. In my addled state I knew i’d already consumed enough carbohydrate that I was going to rebound from it later. But as it was taking so long for my levels to come up, I knew I had to drink it, so i did. 15 minutes later I was back to reality and feeling a little bit sheepish. They say good luck is the design of good management but in this case, my lack of forward planning had hoisted me on my own petard. 2 hours later and a glucose check before bed found my levels at 25.6, nearly five times higher than it should’ve been.

Before LCHF, if I had a hypo I’d turn into a carb monster and eat everything in sight and then spend the rest of the day chasing highs. And, despite 6 months of eating in an alternative manner, I fell for the same old trick and paid the price by getting back on the glucose roller coaster. The best idea is to manage the low without having a blood glucose overshoot or as Dr Bernstein says, to raise your blood sugar predictably.

Glucose tablets (made from the same sugar as blood sugar) do not have to be digested or converted by the liver into anything else. Unlike other sweets, they are directly absorbed into the blood through the mucous membranes of the stomach. They contain 3g of glucose each and 1 tablet should raise the blood sugar of a 140lb person by approximately 0.83mmol/l (15mg/dl ). For a person who weighs 175lbs that goes down to 0.66mmol/l (4mg/dl ) respectively.

Take your target glucose level, figure out how much below it you are (not easy when you’re in hypo, I know!) and then chew enough glucose tablets to get you back to your target. Say your target is 5.5, at 2.8 you’re 2.7 under target. If you’re 140lbs, 3 tablets will raise your levels by 2.49, 3.5 will raise it by 2.9. If you’re 175lbs, 4 will raise it by 2.6. You will need to check the impact this has on your levels and if you are still low after 45 minutes, take some more. As you have safely corrected the hypo, if you feel you need to eat, have a small, low carb snack with your usual medication.

As you eat less carbs, you might find your insulin requirements are falling as your insulin resistance lowers and so may need to adjust your background insulin, as this is what controls your fasting glucose levels.

Dr Bernstein’s ‘The Diabetes Solution’ is an excellent resource to have in your diabetes toolkit and I can’t recommend it highly enough. He has been a long term diabetic, who, feeling let down by the medical community became a doctor himself and has since helped many, many thousands of people achieve near normal glucose levels with dietary carbohydrate restriction. http://www.diabetes-book.com/

According to Einstein, the definition of insanity is doing the same thing over and over again and expecting different results. Now, if I don’t learn my lesson this time and prepare myself better for my weekends away, i’ll be officially declaring myself insane – i’ll even wear the hat to prove it!

Bye for now,

Julie

 

 

 

 

 

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