Risk Management

19 Feb

There is this guy I know.

I’ve known him all my life

From birth he has lived with a condition that will ultimately end his life.

He lives with the risk of health issues that will complicate his life if he gets them.

Heat Attack, Stroke, Cancer, you know the score.

He’s always looked after himself on the whole.

Of course he’s had his moments.

After all you have to enjoy the life you are given right?

But overall he has tried to minimise the risk of these life complicating health issues.

 

Just over a week ago he had a Stroke.

Caused by a blood clot in his neck.

It affected his arm and speech to a degree.

It’s been removed now and he is on the mend.

 

At no point through this has anyone made him feel like it’s his fault.

No one has laid blame anywhere.

No one has him feel like he has failed.

Because he hasn’t!

He’s lived his life to the best of his ability for him and the befit of his family.

He’s tried to minimise the risks as best he can whilst maintain his quality of life.

 

His Condition?

Being alive – The Human Condition.

 

The Person?

My Father.

 

He’s going to be ok.

He’s a resilient bastard.

Just a bit too happy at times for my liking…….

 

So if you wouldn’t blame a guy whose tried to live his life his way for his “Complication”

Then why the fuck would you blame a Person With Diabetes for doing theirs?

#TalkAboutComplications

Live Long and Bolus.

Grumps.

 

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If I weren’t so lucky by Matt Butler

7 Feb

It is pretty simple……..

If my insulin was not provided for by the National Health Service from the second I was diagnosed, I would be in a lot of bother. I may even be dead. I certainly wouldn’t be married to the woman I am now.

I remember my day of diagnosis well: the nurse called me in to a small room and told me that the blood tests I’d had done did indeed confirm that I have Type 1 diabetes and I would have to inject insulin every day. As crappy as I felt (apparently I wasn’t far from being hospitalised), there was the small matter of being told to stick a needle into myself. See, at the time I could not stand needles. I still cannot watch the television if an injection is being depicted. The abject fear on my face was probably plain to see. I can’t imagine what the look on my face would have been like if the nurse had have added that every injection I did would cost me. Because when I was diagnosed I was in a pretty poorly paid job, as I was only just embarking on my journalism career. So if insulin hadn’t have been provided to me (literally there in that room, mixed 25-75 short and long-term, in a burgundy-coloured pen with a fresh shiny needle of 6 millimetres in length), I would have been faced with a pretty tough choice. Either take out crippling health insurance, pay for my insulin via unsustainable loans, or buy an air ticket home to my parents on the other side of the planet and ask them extremely nicely to fund my new needle habit. Or of course I could have just not taken it. And then died. None of the choices above would have been attractive. In fact looking at the alternatives to having insulin provided to me makes me wonder what I would have done. As well as the new world of regular blood-glucose tests, carbohydrate counting and the need for a supply of jelly babies to be kept close at hand, I’d have had to either uproot my life, take out a second job or be plunged even further into debt. Or I could have keeled over drowning in ketones.

Of course there are people in the world who do not benefit from a comprehensive state healthcare system – but still cannot afford the insulin they need to stay alive. We will ignore the accusations that pharmaceutical companies contribute to an artificially inflated insulin market, but just acknowledge the fact that insulin does cost a lot of money. And it is not as if people with diabetes have any alternative.

Spare a rose. Save a child

https://lifeforachildusa.org/

 

Jane’s Story

30 Jan

This year, on January 22nd, I celebrate my 53rd Diaversary. It was also the night I was supposed to see the Rolling Stones in Sydney. I ended up in Hornsby Hospital in a coma, and my brother used my ticket.

I was expected to die, but the medical gods, and insulin, were on my side. I was 15, and about to enter my final year of High School.

This was what I call the ‘Dark Ages’ of diabetes treatment: no glucometers, no disposable syringes, no ‘human’ insulin. We had to mix wee with water in a test tube, add a Clinitest tablet, and wait to see what colour the mixture turned. Supposedly there were 5 grades of colour. In reality there were two that mattered: blue, and brick orange. Blue showed that you had probably been hypo 2 hours before, and orange showed that you were high 2 hours before the test. Not really very helpful, especially as I nearly always reported to the parents that it was blue. I took one injection a day, mixing Isophane with Regular insulin, and eating to the insulin. No wonder I put on weight!

Yes, I have complications. In some ways this is not surprising when you think of the treatments of those days. However, not all PWDs from this era have complications. I believe that complications result as much from genetic make up as from lack of good treatment. I am not ashamed of these complications. Diabetes, and its complications, make me who I am.

Very early on, maybe 6-7 years after diagnosis, I used to vomit undigested food after meals, or have bloody aawful hypos. Yes, you guessed it: gastroparesis. I suffered with this for 39 years before it was diagnosed by a very bright GP in country NSW. Once I was put onto Motilium tablets, I didn’t look back. Yes, it was a damned nuisance, especially when it occurred at a dinner party at my parents’ home, and other guests thought I was drunk. My husband had seen me like this before, and knew it wasn’t to do with how much wine I’d had. Socially embarrassing, yes. My ‘fault’? No.

Retinopathy. Ah, now’s there a word to conjure with.

I showed no signs of retinopathy until about 20 years after I was diagnosed. This was treated with laser therapy. I was seeing an eye specialist whose practice it was to schedule 3 patients for every time slot so that, unless I got there first, I waited … oh, how I waited. The man was an arrogrant pig who delighted in making me feel that this was all my fault. I hadn’t kept ‘control’ (oh, how I hate that word) of my diabetes, or I must have been eating the wrong foods. I’m sure he enjoyed lasering my eyes – it doesn’t hurt, he’d tell me. Like hell it didn’t! After the first time I took paracetomol and codeine tablets before I went in, and repeated the dose when I came out. I knocked myself out for the day, but this way I could cope with it. He did so much treatment over a period of about 5 years that I now have almost no peripheral vision, and had to give up driving 14 years ago. The good thing is that since 1992 I have no signs of retinopathy.

I had cataracts removed last year. The eye specialist I now see thinks that they were due to diabetes, but he is not the shaming kind of health practitioner. At least now I only have to wear specs for close up work.

Grumps and I share the joy of having had Charcot foot. I think I was luckier than he. I had a slightly sore spot on the top of my foot that didn’t go away. My GP sent me for X-rays, which showed a fracture of one of the small cuneiform bones. I have no idea how that occurred. I’ve always had weak ankles, and can turn my ankle on flat ground. I could have stepped on something that I didn’t feel (thank you, neuropathy), or walked on uneven ground. Who lnows? I certaily don’t. We went to A&E at the local hospital, and was put in a temporary plaster cast an instructed to make an appointment at the fracture clinic at Gosford Hospital. Boy, was I lucky. I got in quickly, and was seen by two of the best orthopaedic surgeons at the hospital. The consensus? Charcot. Plaster for 3 months. This was in an Australian summer; not the best time to be in plaster. Because of the quick, good treatment my foot is not misshapen by Charcot, only by good old osteoarthritis in a couple of toes.

And my latest (and I hope last) complication: Chronic Kidney Disease due to Type 1 diabetes. Aren’t I lucky? This was diagnosed about 10 years ago. It has not progressed, and thanks to my renal physicians, is unlikely to lead to dialysis.

People, I can live with all this. Shit happens. I deal with it with help from a very good health system in Australia. I just thank goodness I am not in the USA or an African, third world county. I am not ashamed of what has happened. I wish it hadn’t, but there’s nothing I could have done, or can do, about it. Yes, I get depressed at times, but that seems to be normal amongst T1s, whether with complications or not.

Here’s to a good life, and to a cure, but I won’t hold my breath for the latter.

Jane Reid

Stars in my eyes.

28 Jan

IMG_8450

When someone asks me if I live with diabetes complications, my automatic response is ‘no’. It’s usually followed by some qualifier such as ‘thank goodness’ or ‘touch wood’ or some other ridiculously superstitious muttering that I don’t actually believe.

But my response is not really one hundred percent correct.

Setting aside short-term complications such as hypoglycaemia, I have lived with diabetes complications. You see, when I was 28 years old, after having diabetes for only four years, I was told I had cataracts in both of my eyes. I checked to make sure I wasn’t in fact an 80-year-old grandmother, and when certain that wasn’t the case, I indignantly demanded that my lovely ophthalmologist (who I have a little bit of a crush on) explain how a young woman could possibly be the owner of matching cataracts.

As it turns out, I was probably always going to get them. Both my parents currently have cataracts and all four of my grandparents had them removed. ‘The likelihood of you having cataracts was always pretty high,’ Dr Ophthalmologist explained. ‘But undoubtedly, diabetes accelerated their development.’ Diabetes: the gift that never stops bloody giving.

For twelve years I lived in fear during the lead up to my annual eye screening, believing my time was up and they would need to come out. I’d made a pact with my ophthalmologist: the cataracts could stay as long as they were not affecting my vision or preventing him from getting a truly good look at what was going on behind my retinas.

As I often do when it comes to diabetes, I made deals with myself: as long as I could still read clearly, the cataracts could stay. As long as I could still see the gorgeous face of my little darling kidlet, the cataracts were welcome. As long as I didn’t need to squint or blink to focus, the cataracts could remain.

And the psychological deal was that as long as my age in years started with a three, those fucking cataracts could cloud my eyes and I’d live with it.

Except then, with my fortieth birthday on the horizon, and middle age crises looming all around me, my vision started to be affected. I stopped driving at night time because the bright light starburst of oncoming cars meant I was often temporarily blinded and couldn’t see what else was happening on the roads. I started to need to shine a bright light directly onto whatever I was reading to illuminate the words so I could make sense of the story.

I knew it was time.

At my next visit, I told my doctor that I needed the cataracts removed. He nodded as he was looking at my retinas. ‘Renza, I can’t get a good look at everything going on back there. I’m sure it’s all still fine, but I can’t be certain. I say they need to go, too.’

So, we scheduled two surgeries (I’d used those twelve years of deal making to convince my ophthalmologist that the cataracts would be removed under general anaesthetic because there was no way I was going to be awake while he came at me with sharp objects and stuck them in my eyes), and three weeks after I turned forty, the first cataract came out. Another three weeks later, I had the second cataract removed. The surgeries were painless, easy, and recovery was ridiculously stress-free. I realised afterwards that I’d been seeing the world through sepia-coloured lenses and for the first few weeks post-surgery, I was actually startled by the colour of the sky.

I could see clearly – a blessing and a curse because suddenly those forty-year-old lines on my face, previously blurred thanks to my cloudy vision, became crystal clear. I dealt with this blow by simply dimming the lights when I was putting on my makeup to avoid spending too much time scrutinising the wrinkles, and renamed them laugh lines, congratulating myself on all I’d seen to cause them!

But while the outcome was all positive, emotionally I was a bit of a wreck. Even though I could understand that shitty genes would probably have meant I was going to grow cataracts, was I to blame somehow for their rapid and early onset? There was some time when I was newly diagnosed that my A1c was way outside target and surely my punishment was diabetes-related eye complications. I felt guilty and guilt-ridden, (damn six years of Catholic school).

And I was embarrassed. What sort of twenty- or even thirty-year old gets cataracts? And who needs cataract surgery the minute they turn forty? I tried to joke about it to cover up just how shamed I felt.

Because that’s what happens with diabetes complications. We are told that if we get them, somehow they happen because of our shortcomings. Obviously, this happened to me because I didn’t do as I was told; because I wasn’t good enough; because I didn’t take my diabetes seriously enough. That’s what I was threatened with the day I was diagnosed; that’s what all the literature about diabetes complications says. My failure to look after myself properly resulted in cataracts. Sure, I got off lightly with a pretty easily managed complication, but still, a diabetes complication nonetheless.

But of course, that’s not the case. Complications just happen sometimes. Of course we know that there are things we can do to minimise the risk, but we can’t eliminate that risk completely. Pointing blame does nothing but stigmatise living with complications and, for many, that results in not seeking care.

Talking about complications – openly and easily – is a way to reducing the shame. In the same way that no one asks to get diabetes, no one asks to get diabetes-related complications. Stop the stigma, stop the shame and let’s talk about it and support each other.

Fear of Complications or Inspired by Them?

22 Jan

I remember the conversations started a few days after I was diagnosed. A throat infection had masked the symptoms and I was admitted to hospital in a DKA coma, I would remain in hospital as the medics brought my blood glucose levels down and I have no memory of those first few days.  One of my first memories after diagnosis were of my Nan coming to the hospital to visit me and she told me that one of her friends had diabetes and she had to have her feet cut off because she did not look after her diabetes, that was the first of many negative conversations about diabetes throughout my life.  I was just 5 years old and this conversation happened in Basildon hospital in 1977.  I am sure that my Nan was trying to make me see how important it would be for me to take care of my health and my diabetes, I could not understand how something that made me use the sugars I ate that had broken in my body was related to the possibility of having my feet cut off but the fear she created in me with her well-intended comments has never really left me.

Please don’t judge my Nan badly, in 1977 the impact of psychology on physical health was ground breaking research and had not been adopted by health care professionals or laymen. Tools for managing diabetes did not really exist either, to put this into context there was no self-monitoring of blood glucose, that technology did not exist yet, I was prescribed just one injection per day of an insulin called Monotard, an insulin that was derived from cows or pigs.  We soon found out that I was allergic to cow (bovine) insulin and we switched to pig (porcine) insulin which I could just about tolerate.  The HbA1c test did not exist yet either, or if it did was not available in my hospital.  My expectations of life with diabetes were set at that early stage, it soon became clear that good ‘control’ was important but without any tools to bring about control or ways to measure that control we were unable to make any informed decisions to bring about any form of control, instead we were in a battle for daily survival.  As a teenager, I rebelled against my diabetes skipping injections, eating what I wanted, when I wanted, transition care for diabetes did not exist and I refused to attend diabetes clinic for about 10 years before I finally realised in my late twenties that if I wanted to live with diabetes on my terms I had to make some concessions.

I could write many stories about growing up with diabetes but in this article let’s move the clock forward to 2006. It is now 29 years since diagnosis, I am married to Denise and we have two daughters and we are now living in South Wales.  I am attending diabetes clinic regularly and I have settled into a routine with my diabetes, my family and my life.  I decided that I wanted to be an early adopter for an insulin pump and I had worked with my HCP team to make this happen in 2006.  My insulin pump provided me with the tools to improve my diabetes management, everything was good, I felt better than ever, my HbA1c dropped to 7% (that is 53 for all of the newbies out there) and life was treating me well.

I have secretly made a pact with myself that I am going to see my great grandchildren, my own daughters are just 4 years old and 2 years old at this time. I had already been told that there are changes in the blood vessels in my eyes that needed to be reviewed more carefully and more often and I had been seeing an ophthalmic surgeon once a year for the past 3 or 4 years.  On this day in 2006 I went to see the surgeon feeling surprisingly relaxed, I knew that improving my diabetes management via my insulin pump were going to stabilise the changes in my eyes.  After the examination, the surgeon would always chat to me about the changes he had seen, or not, and then we would tell me to come back in a year.

I could not have been more surprised that day when the surgeon said that there were significant changes that were threatening my sight since my last appointment. I explained that my HbA1c was better than ever, that I was on an insulin pump and his response hit me like a bolt out of the blue “that explains the changes we are seeing, in people with long term type 1 diabetes who rapidly improve their control we sometimes see significant changes in the eyes”.  This felt like diabetes giving me a real kick in the teeth, I had worked my arse off, brought my HbA1c into target range for the first time ever and this is the benefit?  The surgeon went on to explain that continuing to maintain, and even improve, my diabetes management was still essential in maintaining my eyesight and that the long term benefits would certainly outweigh the short term ‘bad news’.  The surgeon then told me that he needed to perform laser surgery on my eyes and he explained what he would do, how he would do it, what were the risks of doing the surgery and the likelihood that if the surgery was not performed I may experience a bleed that could permanently damage or destroy some or all of my vision.  As I began to process this news I asked him when would the surgery take place, I could never have been prepared for his answer when he said in about 10 minutes.

I was given another dose of the drugs which dilate the eye and I was asked to go to the waiting room to allow the additional drops to work. My wife and daughters were in the waiting room and as I walked out half blinded by the drugs in my eyes I knew that I wanted to see my daughters grow up and although my own children were only 2 and 4 years old I made a pact there and then that I would see my great grandchildren, I knew then that I would do whatever it takes to maintain my health for as long as possible.

The surgery went well and over the course of about 6 rounds of laser surgery my retinopathy was stabilised, the treatment I received was excellent and once I recovered from the shock I knew that the treatment approach was right, find a problem and deal with it immediately.

At the time of that surgery I was a 35 year old guy who was carrying too much weight and an active day was walking down the stairs at work, but only if the lift was broken. So, what has changed for me since then?  I started to become more active doing some walking (because I really hated running) in the hills and mountains in the UK and I then went on to do the Welsh 3 Peaks challenge and the 3 Peaks challenge, then after too much wine one evening in 2013 I agreed to run a 5k race, did I mention that I hated running?, and this inspired me to train for a run a half marathon.  I was now 41 years old, and I thought if I can run a half marathon after living with type 1 for 36 years anybody can do it.

On the 2nd of October 2013 I completed the Cardiff half marathon, I never anticipated that it would lead to a phone call from JDRF inviting me to join them for a little challenge and on the 21 June 2014 along with 16 others with type 1 diabetes I watched the sunrise from the summit of Kilimanjaro.  Throughout my training to climb Kilimanjaro I continued to run, did I mention that I hated running?  I found that my diabetes was easier to manage if I took part in regular physical exercise and running was something I could just about anywhere and this is a huge advantage when your job takes you all over the place.  I began to realise that the running was offering me benefits that I could have never anticipated, my blood pressure was now dropping, my cholesterol was dropping, my weight was dropping and I had more energy.  These factors all lower my risks of diabetes complications.

This year I celebrated 40 years of living with type 1 diabetes and to mark the occasion I ran 40 half marathons in a year (did I mention that I hated running), finishing the challenge in Swansea on 26 June 2017 just a few days before the anniversary of my diagnosis. My running campaign had a number of goals, for me personally it was an endurance challenge that pushed me and my diabetes well beyond my comfort zone but it was more than that, it was a campaign to raise awareness of the symptoms of type 1 diabetes.

The next chapter in my story is that my retinopathy remained stable until a few months ago and it has now become maculopathy, I continue to receive excellent care and the situation is being closely monitored. When treatment becomes necessary for my maculopathy it will be dealt with immediately.  Will I get to see my great grandchildren?  I certainly plan to.  However, whatever complications that my diabetes puts in my path I will continue to make every single day count, is that my old fears of complications coming through or is it a realisation that my health is a gift?  I am not sure of the answer but I certainly like the results.

For the last few months I have been enjoying a rest from the running and investing my time into the creation of the website which is dedicated to type 1 diabetes and exercise (1bloodydrop.com). I am working to create a resource which answers the questions what should I do to manage by blood glucose before, during and after I exercise?  We have created video blogs which discuss long distance running, mountain climbing, swimming, weight lifting, football, 5-a-side football and we have some amazing interviews with experts in the field of diabetes and exercise.

What is next? 1bloodydrop.com is putting a team of type 1 ‘athletes’ (an athlete is anybody who is willing to give it a go in my book) together and we are going to set a new record for the most people with type 1 diabetes to run a half marathon together.  The current record is held by the team at 1bloodydrop and is 29 runners with type 1, now we are aiming to get 101 runners with type 1 diabetes to run with us at the Swansea half Marathon on 24 June 2018, join us at http://1bloodydrop.com/videos/swanseahalfmarathon2018/

Peer Support at IDF 2017

11 Dec

If anyone is interested or just needs a cure for their insomnia, here are the slides from the talk I did at #IDF2017 World Diabetes Congress on my experience of Peer Support.

It was also live streamed on Facebook so if you want to see it then feel free.

Type1 Peer Support Slides IDF 2017

 

Live Long and Bolus

Grumps.

Sliding Doors

8 Nov

Have you ever watched the film “Sliding Doors”?

Is about one person’s life as it is, and in parallel, how it could have been if one thing had happened differently.

So

How it is…..

Currently my left foot looks like this (yep, gross, but it will be fine).

IMG_1175

I have Type1 Diabetes and as a result I do my daily foot checks.

I notice a blister and keep an eye on it.

It starts to look a bit rough, so I go to the practice nurse.

She cleans and dresses it.

She refers me to the Podiatrist.

Podiatrist rings same day with an appointment (that I couldn’t make but that’s not their fault).

Great care for an amazing NHS!

 

How it could have been…..

For whatever reason I didn’t get T1D.

I get a blister on my foot.

I don’t do daily foot checks, why would I?

The blister turns bad so I stick a plaster over it.

It gets worse.

I’m a typical bloke so I leave it as I’m too busy to go to the GP.

It’s agony now so I go to the GP finally.

Foot is cleaned and dressed.

Time goes on but it gets no better.

Back to GP I go.

To cut a short story long I get diagnosed with Type2 Diabetes.

My foot issue was the first physical indication I was aware of that I had T2D

I wish I’d know that I was at risk of T2D. I can’t guarantee that I would have acted if I had, but at least Id have had a chance to………

 

Know Your Risk!….

So help yourself, your friends and family but getting them to Know Your (their) Risk of T2D, and if needed, acting on it. Please!

 

Live Long and Bolus

Grumps.