I am a type 1 diabetic, and I have struggled with it since I was 14. It was actually 11 days before my 15th birthday, which sucked. The Tuesday before Easter weekend. Never before or since have my chocolate eggs lasted so long…
When people first find out you have diabetes, they respond with one of three things.
- Oh, is that the one where you can’t eat sugar?
- That the one where you’re injecting all the time?
- Some variation of: oh that’s awful, how long have you had it that really sucks my [relation] has that too.
OK, so a few things. 1: If you don’t eat any sugar in any form then you die, so no. 2: We’re getting slightly better now, but this also applies to heroin addicts. The third one is basically someone who actually understands. This might sound a little bitter, but there are so few people who actually know what diabetes entails. So this is a bit of a thing about diabetes, primarily my life with it. Obviously. It’s me.
OK, so first, how your body should be working. Basically, when you eat sugar or carbohydrates (which gets broken down into sugar), your pancreas produces insulin which is then used to move sugar from your blood to the cells that need it.
Next, what diabetes actually is. There are two types of diabetes, and I’ll cover them both. In reverse order.
Type 2 diabetes is, put simply, becoming resistant to your own insulin. To start with it’s regulated by diet and lifestyle. Eventually many people end up treating it with insulin. It’s not one I’ve experienced, so I’m not going to say that much more about it here. This covers about 90% of diabetes cases, so most of the time if you see something just saying “diabetes”, they’re talking about this one. It’s really irritating, they’re different, be specific. FYI, unless specified from this point on, assume I mean type 1.
Type 1 is what I have. Put at it’s most simple, it’s an auto-immune condition where your own body turns against the beta cells in the islets of Langerhans in the pancreas. They’re the only source of insulin in your body, so they’re kind of a big deal. They do tend to get destroyed slowly, so there is a honeymoon period, where you may only be partially dependant on insulin, but it’s still basically too late at that point.
Once this has happened, your body no longer produces it’s own insulin, and you have to manually add it yourself.
It’s not currently known exactly what causes type 1 to present itself. There is a known genetic component that can fuck up your chances, but it’s not absolutely deterministic. There does seem to be a heavy environmental contribution too. I was diagnosed a few months before GCSE year, for example.
The risk of a child developing type 1 diabetes is about 5% if the father has it, about 8% if a sibling has it, and about 3% if the mother has it. If one identical twin is affected there is about a 50% chance the other will also be affected. Some studies of heritability has estimated it at 80 to 86%.
Basically, it’s a little bit somewhat random. I have no family history at all that anyone knows about.
My Life Now
Every morning, when I get up, I have to take a little fingerprick test to see what my blood sugar level is at. It should be between 4.5 and 8 mmol/l (millimoles per litre). Regardless of what it is, I have to then take an injection of slow-acting insulin to last me the day. When or if I have breakfast, I have to do this test again, plus another injection, which I have to repeat every time I food. Different food reaches my system at different speeds, so sometimes I have to split things up a bit, so I have to actually remember to do that. If I want to drive anywhere, I have to test before leaving; if I’m found to be too low on sugar when driving it counts as being under the influence of drugs.
So, several times a day, I have to shoot a high-speed bit of sharp metal at my finger until I bleed, followed by an equally sharp, and longer, albeit slower bit of metal into my leg, or the side of my stomach or something.
For the rest of my life.
If I get ill, pick up a bug or something, it spikes my sugar levels. If I get over-stressed, it spikes my sugar levels. If I actually do some exercise, it tends to drop my sugar levels. Oh great, more stuff to try and keep track of.
If I fail to keep my sugar levels low, then several things happen. My body tries to get rid of some of the extra glucose through my liquid disposal system. Pissing out sugar cubes would be somewhat uncomfortable, so I get very thirsty so that I drink for dilution purposes. Because none of this energy is reaching the places it needs to be, I get tired (drained would be a better word here), and I’m not really thinking as efficiently.
My body will start breaking down fat cells to burn for fuel. Which is fine and actually rather efficient, but the fat cells contain ketones, which are acidic, and then make their way into my bloodstream. This is when the nausea starts, soon after followed by vomiting. Eventually, if left untreated, I’ll fall into a coma then die.
I tend to end up in hospital, where I’m lucky enough to have three drips in my arms, along with hourly sugar tests (yay more finger pricking), and full blood draws. I’m probably there for 2-3 days. Unless it’s that one time I ended up in a coma, when I woke up I had tubes in all sorts of places and was in hospital for 6 days. To be fair, they saved my life, I was about 4 hours from a body bag when I was found. I stopped counting total hospital admissions when I hit 20 of them.
Then of course, there are the long term effects. I have peripheral neuropathy in my feet. It means I can stand in a freshly run bath, steaming hot, and it doesn’t feel hot. I can wear sandals all year round, and in fact I have to, because I feel pressure much more, so socks are just painful to wear. Eventually my feet might have to be amputated. My kidneys might fail, I might lose my eyesight, I could develop ‘performance issues’.
There’s something called diabetic distress, which is basically diabetes specific depression. I suffer from this on a more or less daily basis.
There isn’t one.
There are things though. There are insulin pumps which dispense insulin to you slowly but constantly, with a boost at mealtimes. There are sugar meters which don’t require constant pricks, just a swipe and a new patch every couple of weeks. But they’re all expensive, and the NHS doesn’t like giving them out much. There are some setups that will actually automatically monitor everything, you just need to do the refills.
Maybe, just maybe, there will be a way to regenerate my beta cells, and convince my own body not to immediately try and kill me. More likely, there’ll be something to prevent new cases. Good for you all.