Why some people don’t want your mental or physical health to get better..

When I was at the World Diabetes Congress in Melbourne last year, I was overwhelmed by the many different agendas being presented by the hundreds of groups represented at the conference. As a representative of Diabetes Australia, I had no agenda except to learn and offer up my own experience to all these ‘experts’. We were told that there was a unified agenda- to get proper treatment to all who need it, and to ultimately cure diabetes. But it was clear that the scary people in white coats showing me the newest medication that I ‘needed’, would be very upset if such a cure was discovered. Billions of dollars were being made by these pharmaceuticals and it was an odd experience- being a young type 1 diabetic and realising that a lot of people benefit financially from my broken pancreas.

One guy, Charles Mattocks, a celebrity chef in the US, came with a different agenda. He gave a seminar on the power of organic food, and it didn’t go unmentioned that he was given one of the smallest rooms to speak in, though people were spilling out and filling up overflow. He said himself that he wasn’t very popular at this conference, and that his ideas were scoffed at. But I was inspired by him and the people that got up and gave testimonies of the power of organic eating in improving both type 1 and type 2 diabetes. (I was also completely star struck when I took a photo with him and he asked me to go for a drink that evening…).

As a type 1 diabetic, and as someone who has suffered mental illness, I know better than anyone the importance of medication. Indeed there is no substitute for the artificial insulin I rely on minute by minute to stay alive.
But is there something I can do to improve my bodies response to that insulin? To avoid nauesating drugs that I’ve been prescribed liked diabex? I have found much more healing in taking apple cider vinegar, cinnamon, fish oil etc, than I ever did in diabex. Likewise, going off dairy products gave me more benefits than I predicted – better response to insulin and thus lower sugar levels, more energy, clearer skin, weight loss, improved mental health. There is so much healing to be found in food.

Mental health is a hot topic, and a buzz word popping up all over blogs , the news, and conversations. It’s a word our parents didn’t grow up using.  It’s health of the MIND. Everyone has mental health and everyone needs to look after it. In the same way everyone has a degree of physical health to look after, improve and protect. Staying mentally healthy should be on the radar as much as staying physically healthy… for most people, both types of health need more attention.

But, lets not also forget that the mind is part of the body. It’s an organ, and the most complicated and important of them all. When the brain is suffering, the entire body suffers. Likewise when the body suffers, the brain can also suffer.

The interconnectedness is so important to understand. Staying mentally healthy can improve your quality and duration of life.
People with mental illness on average, die 25 years younger than people without mental illness, because of physical health problems. For example, someone with schitzophrenia is 4 times more likely to have diabetes , 5-7 times more likely to have colonary problems.. and vice versa, a person with type 1 diabetes, is 2 or even 3 times (according to some studies) more likely to development depression.  So we can’t treat mental health separate to physical health. They are inherently linked.

To look after your mental health takes work. I often look back on my own mental health journey, and think of the pills I have been prescribed and the professional help I have received, and realise the lack of preventative measures that I had in my life to avoid the ‘episodes’ that I have suffered. While I see the value in medication for many people that I know, I am also wary of the over-prescribing of these meds as a first response rather than a last resort..(did you know that some dogs and cats are now on anti-depressants???).

Bottom line – like most bad things in the world, someone is making a shit load of money out of our unhappiness. Pharmaceuticals are dependant on you being anxious and unhappy, so don’t look to them for advice. This is also true of physical health.. there is so much healing to be found in food, exercise and habits, and yet, people pop pill after pill with side effect after side effect in pursuit of health.

As mental health problems are on the rise, we must see the link between the increase of depression and anxiety, and the lifestyle promoted by modern society.

A sustainable approach to physical and mental health must include all the goodness of veggies, fruit and organic foods that don’t pollute your body and mind with preservatives, additives, pesticides and all sorts of shit.

Be creative and be mindful of your health!

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100 days of being a travelling diabetic

I’ve been debating with myself whether I should write this piece or not… I don’t want my travelling experience to be defined or remembered by my diabetes… but I can’t ignore the huge portion of my brain that is consumed by questions of insulin,  sugar levels and calculations between the two while I’m on the move.

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Travelling has been inspiring, challenging, exciting, scarey, amazing,  exhausting…and completely worth all the extra effort it takes for a diabetic to live the spontaneous and unpredictable life of a traveller. Be

fore I set off on my travels, I had a little look for articles or blog posts from fellow type 1s who have backpacked, and didn’t find much. My diabetes has been extremely difficult to control and my hba1c very high since I diagnosed over 14 years ago. So, as someone whose diabetes has played a huge part of my life, I’m going to share some of my travelling experience.

It’s been 100 days since I left home, the last 79 of which I have been backpacking my way around Europe… with a few more to go. We didn’t do the whole book in advance kind of trip.. we are going one day at a time, seizing opportunities, risking homelessness, and embracing the unknown… It’s the best and the scariest way to travel. 100 days is a lo

ng time to be away from my pharmacy, among other things. Which brings me to the first pressing question of a travelling diabetic..

How do I do the whole insulin thing? Pump vs pens

I was on the insulin pump back in Sydney, and liked being on it (as much as you can like being attached to a machine 24/7). But I looked at the consumables (sets and lines) that I’d have to carry for the 3 to 4 months I planned to backpack, as well as the insulin, and realised it wouldn’t physically be possible without bringing along a suitcase in addition to my pack.. which kinda ruins the whole backpacking thing. So I switched back to pens and stocked up on 6 months worth.

The best thing, I was told,  for travelling with insulin is Frio Bags.. little insulating bags that are activated by water and supposed to keep insulin cooled for 48 hrs… I haven’t found them to be that effective.  They are heavy in my pack, and the insulin always comes out a bit warm.. but they’ve been better than nothing. So on planes,  trains, cars, buses.. the insulin is in these packs. As soon as I get somewhere I find a fridge and put it in. It’s been a bit stressful at times because if my insulin isn’t cool it stops working properly… and if it’s damaged, stolen from a hostel fridge, or lost that’s my life line gone. We have been mostly couchsurfing and staying with friends, so that’s been easy, and every hostel has had a fridge and I’ve never had any stolen.

So storing and transporting insulin has been annoying but ok. A few weeks ago I had a very bad patch of high sugars and suspected my insulin was damaged.. it is possible to buy insulin over the counter in most countires in Europe. Novo rapid for example was about €55 in italy, €45 in france and CHF 75 in switzerland. Levimir is more expensive by about €20 per box.. but when it comes to living or dying, that’s not a lot of money to pay. In every country that iI’ve asked, you can walk into a pharmacy and show your current insulin, and they’ll give you new insulin without a script.

The second question of a travelling diabetic…

What to do for hypo food?

I dont hypo very much,  but I usually have fruit or some kind of snack on me, and for the immediate emergency,  I carry little cafe sachets of sugar in my diabetes kit.. I take them from cafes when i get a coffee and keep a supply on me at all times! When visiting museums and galleries, you’re often not allowed a big bag, so my small diabetes purse with sachets is fine.. I add them to water or just have them straight in an emergency. Explaining to security during a hypo why you’re breaking the no eating policy can be very stressful.

Carb counting

Counting carbs on wine tours, pub crawls, pizza and gelato eating frenzies in Italy and other crazy food indulges you don’t want to miss out on while travelling, is nearly impossible.  I have all but given up. I found upping my background insulin,  especially on days when I’m stuck on a bus or train for most of it, is helpful.  Some days I will do a lot of walking, swimming and bike riding, which usually means it will be a better sugar day. But I have been very high for a lot of my trip.. bringing me to…

Diabetic exhaustion

This has by far been the toughest thing. Running on high sugars for days at a time, while trying to make the most of my short time in a new city is very challenging.  I don’t want to miss out, but I also have to look after myself and listen to my  body. Sometimes it means an early night. Sometimes it means a day of reading in a park. For travelling diabetics, sleepness nights of high sugars, plus the overwhelming high induced exhaustion only diabetics can relate to, lack of routine,  new foods, more alcohol than usual ,injecting up to 9 times a day, and the endless drone of checking sugars levels 10+ times a day and getting frustrated at the wild numbers, only intensifies the travelling experience of being generally rundown. Getting reading after reading in the 20s, only to plummet overnight and scramble around in the dark for food, gets old very quickly. I’m going to be honest and say.. I’ve struggled,  emotionally and physically.  There’s no point saying “You can do whatever you put your mind to!”, when your body can’t keep up- know your limits.

Being down about my diabeties is the loneliest and lowest experience, especialy when I’m away from my family and support network. I’ve had less down days than I thought I would, but I think its important for me to have them.  Some days I need to cry and be angry at my body, so that the next day I can get up and refuse to let it stop me from having the life I want.

On my down days, I worry about being a burden on those around me, and I feel totally misunderstood when my high sugars wreak havoc with my mood and energy.  But I keep thinking of all the things I want to do with my life and each of them is a reason to not let diabetes win.

Being a diabetic traveller means you have to do a bit more prep and planning,  expect that some days will be horrible,  and that sometimes you will have to take things as they come and not do absolutely everything. Being flexible and gentle with yourself is the best advice I could have recieved. Learning your own body and its needs is imporant for all travellers. As a diabetic you can definitely travel and do it for as long and as far as you can get insulin for! Fear is the biggest enemy.

Me and D <3

Me and D. It’s been 14 years and there is so far nothing to suggest that we won’t be together for the rest of my life. It’s complicated, and mostly not loving – I think D might be be trying to kill me, and I generally hate D…. but for better or worse, I’m stuck with it.

My motivation for this informative rant about my diabetes is mixed. Part of me knows (or at least hopes) that people are interested and want to be informed on this illness that takes up a huge portion of my life.  And another (possibly bigger) part of me is frustrated by some of the well intended but uneducated comments and questions that I am subjected to on a regular basis.

Mostly these comments are about what I can and can’t eat, why I’m not taking better care of my body, or ways that I can supposedly cure myself or limit my need for medication.

I have received extensive education on diabetes type 1 generally, and my own body, for the last 14 years and don’t particularly want to hear about what you learnt from a movie/google/your grandparents.

I have TYPE 1 Diabetes – type 1 is about 5% of diagnosed diabetes.. the other 95% is type 2. I was diagnosed when I was 8 and I will have it for the rest of my life (probs).

What is type 1 diabetes?

It’s  an autoimmune illness. This means that my body got some kind of virus that was attacked by my immune system. Unfortunately, as it waged civil war inside my body, it killed the beta cells in my pancreas rendering them a tragic casualty. These cells produce insulin. So the pancreas was wounded significantly, and abandoned its duty in insulin production. The human body cannot function without insulin and so all type 1s are dependent on artificial insulin daily (hourly) to continue living, though everyone requires different amounts. The insulin we use is artificially made based on some kind of cloned pig insulin.. (interesting side story).

Type 1 D varies from person to person, and some people may have an easier time controlling it than others for medical reasons that may bore you… *spoiler alert* I’ve had a really difficult time controlling mine.

So I was born with a predisposition to get type 1 D, got a virus and BAM. I didn’t eat too much as a child and I was not even a little bit overweight. Symptoms of diagnosis include extreme thirst and needing to pee a lot, fatigue and rapid weight loss. So I was actually underweight when diagnosed.

What does insulin do?

It is a hormone produced by your pancreas continually. Your body is amazing – doing all this stuff without you even telling it to! The pancreas has got to be the world’s most incredible calculator – it works out, based on the amount of carbs you eat, exactly how much insulin is needed to nativage that energy around the body. The insulin acts as a key to all the cells in your body. Without insulin, the cells are locked and don’t let in the sugar, leaving it to hang out in your bloodstream and cause trouble. Thats why when I was diagnosed the sugar in my blood tested at 38  – the healthy range is between 5 and 8. This excess sugar can damage lots of parts of your body like your eyes, nerves, kidneys.. the body tries to get rid of the sugar by peeing.

If the body doesn’t get insulin for a few hours it freaks out because no insulin = no energy = body starts shutting down. It starts breaking down fat and muscle for energy  – the by product of this breakdown are a bunch of nasty things called ketones. Ketones are toxic for the body and can start building up in the blood. These are hard to get rid off and can result in death. When you start getting poisoned by these, within a few hours you go into something called Diabetic ketoacidosis  – or DKA. This requires immediate hospitalisation and is extremely unpleasant and dangerous. This has happened to me 5 or 6 times.

So I get insulin through an insulin pump. I used to be on multiple injections a day, and originally I was on good old syringes… but times have changed. The picture shows my pump on the day I got in in 2012 with the little friend it came with.. The pump delivers insulin to me 24/7 through a cannula that I change every few days when I also refill the insulin. I have to tell it what I’m eating and when so it can give me extra insulin, but there always has to be a bit going in. Looking after a pump feels like looking after a baby sometimes, needing feeding and changing, waking me up in the middle of the night….

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So now I’ve got insulin what’s the big deal?

I can get high sugar levels if I eat too much and don’t give enough insulin, or if i get stressed – this makes me very tired, thirsty and prone to mood swings and the excess sugar is very bad for my body. Give insulin (a specific amount.. I’ll work that out).

I can get low sugar levels if I give too much insulin, dont eat enough, exercise.. etc. this makes me shaky, appear drunk or confused, and teary.  So if I start being weird and dazed check my sugars, give me juice accordingly (not too much).

People get confused all the time as to when to give sugar and when to give insulin, and in an emergency, this mistake can be very dangerous.

So to avoid these situations I have to engage in a daily mathematical battle and elaborate guessing game to stay within the healthy range. This is a daily battle – taking 8+ tests a day and reading numbers that all seem to incite an emotional response (guilt, anger, dissapointment, anxiety.. ). Longer term, I must aim for the all important HBA1C  – this is a blood test I take every couple of months and measures the average amount of sugar in my blood over the past 3 months. A non diabetic will invariably sit at 6%. A person with diabetes’ aim is to get to 6.6% or as close as possible. I haven’t ever really been close. Getting close to this number reduces my risk of developing complications such as eye degeneration, nerve loss, kidney failure, infection, memory loss.. etc. Anywhere below 8% is usually relatively good for a type 1 but everyone has different goals keeping in mind knowledge of one’s own body and what’s realistic. My current goal is anything below 10%… this number often shocks doctors and new type 1s.. it’s quite high.

Everything can affect the sugar levels (not just food) including stupid things like the weather, stress and hormones.

D affects everything in my life, and everything in my life affects D- it’s tres complicated.

Other things to mention..

Mental health- Depression is 2 or 3 times more prevalent in people with type 1 than in the general population..  this can be to do with the sugar levels and the effect they have on mood and hormones etc.. plus the burden of living with a chronic illness. Anxiety is also more prevalent, doesn’t take much to work out that one. Likewise is a complicated relationship with food resulting in common eating disorders (over half of girls with diabetes have had eating disorder related behaviour).

Please don’t talk to me about your relatives that have diabetes, especially if they are dead (you’d be surprised how often this happens). It causes me significant stress when you tell me you know someone who lost a limb or their eyesight to diabetes … it also causes me stress when you tell me about someone you know with diabetes who’s currently off climbing Mt Everest and “Don’t let it hold you back!” -it does sometimes, against my will, hold me back.. so withhold your motivational speech.  I do love talking about D, and listening to other’s experiences, but it’s not a comparison. Everyone’s journey with diabetes is different and sometimes its not comforting to hear second hand about someone’s triumphs or failures.

One more thing – saying things like  ’it could be worse,’ or ‘at least you don’t have cancer’.. is not helpful! No one wants to compare suffering or illness, and doing so is belittling. I am not going to say diabetes is worse than any other struggle – but it is damn hard. It’s completely self-managed . There is no other illness that requires so much hard work and thought. Diabetes control is not prescriptive, has no one answer, doesn’t get better, doesn’t take days off (ever!), and treatment constantly needs adjusting and changing. It could be worse, I could live in a country without access to medication, but my struggle is still difficult.

I am grateful for friends that understand my experience and journey with D, and I really do appreciate questions from people who are interested… just want to spread some education 🙂

The above was mostly off the top of my head, so some of this might be off scientifically speaking.. I guess this is just my understanding of my body and some of what I’ve picked up over the years.