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….
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.