Can do anything, should do everything?
One of my biggest struggles in coming to terms with having a chronic illness, is how much do I let it change my me? Whatever you battle in life we bombard ourselves and each other with positive affirmations about never giving up, and within the diabetes community we are no different. I follow a number of inspiring organisations and individuals who constantly remind and prove to the world that we Type Ones are capable of living full and rich lives, but some days I need to take a step away from the positivity, and come to grips with my reality.
We are told that we can do anything. I was told this within minutes of diagnosis when I was in hospital by my nurses, doctors and diabetes educators. I was encouraged and supported in continuing with my travel plans to Africa, began a new, intense job, continued hiking, travelling; on the outside I didn't change anything about my life except for the blood tests and injections. I was determined not to let diabetes "beat me." Yet on the inside, the pressure of this attitude takes it's toll, and burnout has become real. I have learned that you can never beat chronic illness, but it doesn't have to beat you, it's about acceptance and balance.
I am coming to realise, yes I can do anything, but I don't have to do everything. While I was in tears on the phone my Mum recently said to me, "you don't have to prove anything to anyone." The burden she lifted from my shoulders in speaking these words, instead of a constant bombardment of positive "you can do it!", was a moment of realisation for me. It might be declining a hike because my blood sugars are high, stopping for a rest when my sugars are low, or taking time off work because I am exhausted, it's okay. This illness is a part of me, and there are days when it will limit me. Accepting that I have a serious illness and that I may not always be able to do everything has lifted a huge weight from my shoulders. I still hope to achieve all my goals and dreams, it might just sometimes take a little longer, or be more difficult for me than others, and that's okay.
27 September 2016
Here's the article I wrote for Type 1 International, an amazing organisation advocating for equal access to insulin and medical care. Visit the original on their website here Type 1 International
I am so lucky. I don’t think this is something that is written much here, but I am. Living here has made me realise this. Two years ago I was diagnosed with Type 1 diabetes. I had just accepted a teaching contract at an international school in Tanzania, quit my job and was moving out of my flat. I had a choice: continue with my plans to move to Tanzania, or not. Choice is the key-word. I choose to be here.
People in this country do not have much. The average income is about $750 per year. I cannot begin to understand their struggle. I live here as an “expatriate.” I don’t really understand that word, but basically, I am white, I have a job, I have medical insurance.
When I was diagnosed, I was living in Australia. I received incredible care and education. So much so, that I was able to take control of my diabetes and move overseas within six weeks. Not only did the diabetes education I receive give me the power to manage my condition independently, growing up in a developed country gave me the education and skills to understand my condition. I can read. I can access the internet. I can educate and inform myself. The place I was born is what has enabled me to manage type 1 while living in a developing country.
I moved here with two years’ worth of insulin, 1000s of needles, and boxes full of test strips, all funded by the Australian and New Zealand medical system. When I need a restock, my Tanzanian pharmacist orders what I want from overseas. I cash my receipts with my insurance, and I get reimbursed-for thousands of dollars. Every time I collect my order, I wonder how other T1s here survive.
That said, supplies are not easy. Over the counter, I can buy fairly cheap and nasty test strips and meters. These are great for an emergency, but I found them to be inaccurate. Instead I bulk order better models. This can take time, so I need to be organised. The pharmacist may have small quantities of Novorapid and Lantus, or it could take them a few days to order what I need. This means ensuring I keep my insulin in multiple places in case one lot gets damaged or stolen. Unfortunately my insurance will not cover me for a pump or a CGM, but what I have is so much better than most here.
Power, or lack thereof, is probably the biggest challenge. Again I am privileged. I have a house and workplace with some electricity and a fridge. Most people do not. Despite this, keeping my insulin and glucagon cool is a challenge. Facing daily 12 hour power cuts for 4 months, 7 days without power, I have become creative in keeping my insulin cool, and would now consider myself the expert on this.
For my first endocrinologist appointment here I visited the best hospital in town. It cost me $15 to see an excellent Kenyan endocrinologist plus $10 for my HbA1c blood test. This amount is equivalent two weeks income for the average Tanzanian. The waiting room was packed. I queued for a long, long time with lines of Type 2 diabetics desperate to see the doctor. He was frazzled yet professional when he saw me, and relived to see that I am an easy patient. I know my condition. A good HbA1c result, and off I went. The next time I wanted more, so I travelled to Kenya. I can afford to do this, but I know that others cannot. In Kenya, I had time with the endo, who was not under the immense pressure of the doctor in Tanzania. I had all the required checks that a dutiful diabetic should have. I travel to another country to see my endo, but I am the lucky one.
Emergency care scares me. I question if the hospitals here would know what to do with me in the case of a severe hypo, or a car crash. Still, I am lucky – I have glucagon at home and work. In an emergency my insurance will pay for me to be evacuated by air to world-class medical care in Nairobi. I wonder what happens to the Tanzanian Type 1s? I hate to think…
There are wonderful charities working here to get insulin to the needy. I want to learn more about them because they are so vital. Still, people shouldn’t have to be dependent on a charity. T1International is advocating for access to the essentials and hopes to support sustainable solutions in Tanzania as we learn more about the situation.
I just want to repeat that I am so lucky. I travel, I work, and I live an amazing life here. We go on safari, we camp with lions. We live in a beautiful house under the Acacia trees. There are days when I am so strong. There are days that T1 brings me to my knees, but I have a husband who helps me get back up again. For now, my diabetes is under control, so I can live here. When it isn’t, I can leave. No matter where I live in the world, I will have Type 1 diabetes; that makes me unlucky I suppose. But I have choice, I have education, and I have insulin. My heart aches for those that don’t.
13 June 2016
Healthy. Strong. Fit. Balanced. It is a part of many people's identity. Green juices, quinoa, all the cliches. You don't know how good you've got it until it all changes.
So, it's pretty scary when you start to waste away.
A body disappearing, 10kg in a few weeks to be precise. Noticeable, yet completely unexplainable. Panicking and drinking thick-shakes, ice-cream, and anything fatty to try and keep some flesh on your bones. Being told you've lost weight by everyone. Told how great you look.
Thirst. Not just thirsty, but insatiable, incurable thirst. Thirst that turns your tongue into a labyrinth of cracks, that to speak you need to put water in your mouth so that your tongue doesn't cement itself to the top of your mouth. The moment you swallow a mouthful of water you need more. With this comes constant bathroom trips. Never-ending.
Energy gone. Fatigue. Naps. 7pm bedtime. Hunger. Vision blurry. Head-spinning. Thrush. Leg cramps. Craving sweetness.
No visible symptoms, so how can you explain this to anyone? It's flu season. Three doctors.
Crying in the doctor's surgery while they tell me I have the flu. Again. I sob that my mouth is so dry. Antobiotics. That'll fix it.
6 weeks on... A doctor listens. Orders a swathe of tests. That night, two years ago, today, I googled every test. I knew then what was wrong. The next day, I just waited for the call.
|Getting our dive certificates just before my immune system went crazy.|
18 April 2016
This part of the world is spectacular and reminded me so much of home. Stunning coastline, lush forests, wildlife galore… That said, the section of SA that we travelled certainly is a little microcosm of the continent – perfect for what we needed but probably not for those wanting a true African experience.
|Plummeting sugar up Table Mountain|
Amazing holiday, exactly what the soul needed.
So, Type 1s reading this, what I want to know is this: Overnight travel is consistently extremely challenging for me and my blood sugars. The lack of sleep and small meals seems to make my sugars go extremely high to low, and makes what is already unpleasant an even worse experience. How do you manage this? Any tips?
15 March 2016
Here in Arusha, we are at the gateway to Northern Tanzania. Kilimanjaro is to the East, and the Serengeti to the West. Forested Arusha National Park is a 1 hour drive from our house, elephant-rich Tarangire National Park 1 and a half hours, beautiful Lake Manyara National Park 2 hours and the famous Ngorongoro Crater 3 hours away. All the cliche African wildlife experiences can be had here on a Friday night weekend getaway... I still have to pinch myself to believe that we live here. Oh I should have warned earlier, this is a major brag post!
Of the challenges I have had to face going on safari, the biggest has to be hypo snacks. Sleeping in a tent, luxury or not, they are strict on the no-food policy, and for good reason. One of my friend's cars was smashed open by a hungry elephant who could smell fruit in the vehicle! This is a tricky one to get around, so my tip is to pack a plastic, seal-able tuppaware type container for any snacks. Keep simple plain snacks in your tent that don't smell too sweet - such as plain crackers and sweets (no fruit or meat). Glucose tabs would probably be a good option here (ugh). Give any additional snacks to the kitchen to store for you to collect at the beginning of each day. Or pack in the car, again, in seal-able containers.
Refrigeration of insulin and glucagon is another challenge. I think it's wise to travel with glucagon - you are in a very remote place. If you are with a safari company, many of their cars have a little fridge. If we are self-driving we have a cooler box with frozen bottles. For longer trips we are looking at investing in a Engel fridge. Jarrod is very keen to get one of these for my insulin... but I think he is mostly excited about a new gadget.
|Mama cheetah and cubs.|
If you plan on safariing, get used to injecting with the bumpy roads known as the "African massage." Let's just say I have become an expert at pinch, look away and stab. Not cool.
My last tip is to communicate. My husband Jarrod enters some kind of a state of safari frenzy and never notices if I am chowing down on sweets. I need to get better at telling him that I don't give a **** about that baboon riding a zebra right now, because I am busy hypo-ing. All things to learn! Another thing I learnt is that self-driving and having a huge male lion walk past and make eye-contact, about 2 meters away, causes a massive release of sugar into the blood-stream! My electric window was not fast enough.
This is such an amazing place. Sometimes I wonder what we are doing here... am I am crazy depriving myself of easy access to medical care, support and technology? Then I remind myself of the incredible things we have seen and done, and how much more we have to see, and it is so, so worth it.
24 February 2016
|Land border crossing between Tanzania and Nairobi - legitimate excuse for|
procrastinating an endo appointment right?
|High security in "Nairobbery."|
While the drive to Nairobi from Arusha is less than 300km, I had been advised to take a shuttle bus to avoid driving in Nairobi's infamous traffic and to save border crossing issues with a private car. This was a good tip given the navigation and terrifying driving in Nairobi. 8 hours travel for 300kms for an endo appointment is longer than I would like... but it is better than many people in the world have access to. While waiting around for tests and appointments I made the most of Nairobis modern shops and food, stocking up on supplies such
as decent shampoo and cooking ingredients.
So to summarise my first big check-up as a diabetic - terrifying, adventurous, and oh yeah, terrifying again. I was a bundle of nerves, self-judgement and anxiety for weeks leading up to this. Other T1s, do you all find it so nerve-wracking?! At least in the future I know I can reward myself with Nairobi food and shopping, seems only fair right? X
|I was pretty happy when we found an Asian|
restaurant... #small things. :)
|When you have been in Arusha for a year and a half,|
even Nairobi is a foodie holiday.
|The "African massage" is not so great for diabetics.|
Trying to psyche myself up to jab on bumpy African
roads is always fun, but I am becoming an expert.
2 February 2016
|Injecting for lunch at the summit of Longido.|
One of the things I love most about hiking in a new country are the glimpses you get into people's everyday lives. You get to see into homes, and if you are lucky, be invited in. People want to talk to you and the kids chase you. Here in Tanzania people apologise ("pole!") that you have to walk! When I was hiking in the Usambarra mountains my guide told me that the people felt pity for me that I could not afford the bus... A huge cultural difference to be walking as a luxury!
Hiking is easy in Tanzania if you are organised yet flexible. There are almost no maps, and you nearly always have to take a guide or a ranger and often pay village fees. If you are willing to do this, the country is at your fingertips.
|Almost at the top of Longido.|
On Sunday I camped with some friends at Longido, about an hour from Arusha. The camp site was cliche Africa and I only had one scorpion under my tent and a measly 4 thorns straight through my shoe into my foot. After a night of scorpion dreaming we hiked/climbed up Mt Longido. It was 4 1/2 hours straight up with a hands and knees scramble/climb to the summit, and about three hours down. I love imagining the creatures around me in the forest as we trekked past elephant poo and a leopard footprint! It is amazing how much energy hiking uses. I miscalculated my long-acting insulin the night before so had to suck sweets constantly on the climb, and I should have carried much more sugar with me.I would love to hear from other diabetics how they adjust their insulin for all day exertion?
Here's to this being the first of many 2016 mountain hikes. Let it be the year of Meru, Oldonyo Lengai and fingers and toes crossed for Mt Nyiragongo in Congo.
|Big trees hiking in Usambarra mountains.|