Alone, at 2am, it hit me.
Weeks later than it should have, it hit me, and I was powerless to it. It wasn’t a near death experience this time… It was an emotion. It was something I should have felt but haven’t been able to for weeks, and it hurt so much that the heaviness was almost physical, it was an aching within me. I didn’t cry. I sobbed. Silently. Uncontrollably. And there was no dog for me to cling to. There was nobody to talk to, because I live alone. There was just me, and this fear, this panic, this one single thought.
I don’t want to die.
I’m not sure I fear death, in fact when I’ve been ill enough that I should have died it would have been a relief, an end to the immediate and intense suffering my body inflicts upon itself… But I’ve spent so much time in hospital that I haven’t lived yet. Not in the way I want to. I sobbed for something I will never be around to consciously miss. I sobbed because I was scared. Finally, here it was. The fear. It was a fear I had dissolved in my acceptance, a fear I had run out of the energy to maintain, and now here it was, fresh.
I’ve been told by many different doctors on many different wards that I could die. I’ve listened to doctors tell their colleagues they are losing me, that they can’t wait, that this is it. My organs take it in turns to rebel, to put me in an ICU or a cardiac ICU or wherever else I may end up. Sometimes they even team up. And I pull through somehow. I’m told that my body is playing Russian Roulette and it’s taken so many shots at me they’ve no idea how I haven’t found the chamber with the bullet yet. But oddly enough, it isn’t that what makes it hit home. Yes, nearly dying five times in three weeks shook me.
The thing that first got me was the fact that twice in three days I was nearly killed by a health hiccup that I never really classed as life threatening – and it wasn’t the first time but this time there was no thought or denial to slap over the wound that left. Although that triggered the start of everything, it isn’t what made me reach break point. It was hearing of other people my age who had been killed of my health hiccups that lit the fire. Most recently and specifically, hearing that a 19 year old boy treated by one of my health professionals had died of something I was already terrified of, after having evaded death due to it many many times. Type 1 diabetes killed him. And at 2am, I ended up watching a short film about diabetes and stem cell research. I ended up on the website about why the research is so important, and after scrolling down the page was faced with huge, great big letters that read, “Every seven seconds a person dies from diabetes.”
And I just couldn’t any more.
I don’t know what it was, but I now I should have been feeling it for a while, this panic… But not panic, but terror… But not quite that… About the uncertainty of the future, about how volatile my health is and how quickly it can take my life without warning and with me being aware but unable to stop it (as happened the other night when I just about saved my butt). It hit me like a slab of concrete in the chest and knocked the air from my lungs as I curled up where I sat on my bed, powerless to this thing tearing through me, these sobs bursting out of me. I sat there silently, crying so hard I couldn’t breathe in, and then gasping in air, trying to get a grip, and just going all over again.
Because the “harmless little normal thing” was suddenly this huge life threatening deal that it’s never felt like but always has been. There is no safe space in my body. I can go wherever on earth I want and I still won’t find a safe space because I am tied to a ticking time bomb and it has to many fuses I don’t know which one is going to detonate it first. All I can hear is the hissing of the fuses burning down, and I stamp on them and try to cut them but they don’t stop burning and they don’t detach. Sometimes other people throw water on them and they stop burning away for a little while, and then out of the blue they reignite, or are set back alight by the health hiccup fuse that is burning alongside them. And I don’t know when. I don’t know when it’s all going to go off. I just know that it will and I don’t want it to. I really, really don’t want it to. And for the first time in… Potentially ever, I sat there and I looked at this statistic and it hit home. It hit home how fragile my health is, how fragile my life is. And in another first, I couldn’t find any way to handle that. At all.
I went to the website quoted as the source of the statistic that woke me up, and there it was, in black and white:
“Diabetes caused 4.9 million deaths in 2014; Every seven seconds a person dies from diabetes” source
“Diabetes caused at least USD 612 billion dollars in health expenditure in 2014 – 11% of total spending on adults” source
There’s so much misunderstanding around this condition. People, even people doing my biomedical science degree, think that I just can’t eat sugar, or that I ate too many sweets when I was younger or was overweight (confusing type 1 diabetes with the stereotype associated around the development of type 2 diabetes, in which the beta cells are totally fine and still make insulin). Type 1 diabetes is an autoimmune condition. The body doesn’t make any insulin at all. Insulin is required to let glucose into cells so that it can be metabolised. It also helps regulate potassium levels, which can cause cardiac arrest if they drift too far away from normal. Without metabolising glucose, you can’t carry out respiration efficiently. You don’t make enough of the molecule your body uses to provide energy (ATP), and the methods your body uses to generate it instead… Kill you. Now let me tell you why it gets scary.
Low blood sugars can kill within hours. They cause death through seizures, brain injury, brain swelling… Your body shuts down, because it has no glucose. Blood glucose levels drop without warning. Sometimes when you exercise (but sometimes that makes them increase instead for no apparent reason). Sometimes if you forget to eat. Sometimes because you did the maths wrong or you worked stuff out wrong. Sometimes because when you injected you hit a blood vessel… So many reasons. Few of them within your control.
High blood sugar levels are toxic to nerves, blood vessels… And can cause chronic health issues with other organs etc. When sugar levels in the blood are high, it means the sugar isn’t getting into the cells (unless you just ate way too much, in which case it’s slightly less dangerous and will kill you slowly instead of within hours). Your body has compensatory mechanisms, so it decides to get rid of all the toxic glucose in the urine. So you pee litres more than you can take in and become severely dehydrated despite drinking litres and litres due to an unquenchable thirst. This also wrecks your electrolyte balance. If sugar can’t get into your cells, your cells basically start to eat… you. They break down fat and muscle, and produce harmful chemicals that will kill you as they accumulate. This can lead to multiple organ failure, brain swelling, brainstem herniation… And irreparable damage.
People don’t see all the work you have to put in to try and stop that happening. When you eat, you have to factor in your blood glucose levels and calculate how much insulin you need to give to correct those, then how much insulin you need to give for the food, and then how much insulin is already active in you and therefore needs to be removed from the dose. Then you inject or in my case, use a genius little pump called Einstein who will calculate all this for you if you tell it how much carbohydrate you ate etc. You have to constantly monitor, because machines break and bodies react differently. What works brilliantly on one day may leave you in a life threatening situation the next. Stress, illness, exercise, the amount of fat in a food, the type of carbohydrate you ate, the length over which you gave your insulin… are just a few of the factors that can massively change the way your body responds to what you do to try to help it.
And here’s what people don’t appreciate. The longer you have diabetes, the more at risk you are of complications. What does diabetes do? What does it cause? It is the (now potentially just “a”) leading cause of blindness. It is the “most common cause of kidney failure” in the US (source) “About 60% of non-traumatic lower-limb amputations among people aged 20 years or older occur in people with diagnosed diabetes.” with around 73,000 of them due to diabetes in the USA during 2010 alone (source) It causes neuropathy (damages nerves so you can’t feel things, or so that your autonomic nervous system that controls heart rate etc. goes haywire). Diabetes is associated with cardiovascular disease and heart attacks, and deaths due to both of these conditions are 1.7 and 1.8 times higher among diabetics respectively (source). Add into that strokes and whatever else, and suddenly it isn’t so harmless. Insulin is underrated. Pancreases are underrated.
I don’t have any complications due to my diabetes at the moment, other than some changes to my retinas that come and go. I have plenty of other health hiccups, but they developed of their own accord and mostly they scared me more, although they are effected by my diabetes (because it effects pretty much everything). It’s the only health hiccup I’m willing to talk about in detail on here. There’s such a misunderstanding and lack of awareness around it, yet in the diabetes community at least once a week I am sent a story about another child or teenager or some other poor person who died as a result of undiagnosed type 1 diabetes, or diagnosed diabetics who got a stomach bug that caused their diabetes to become out of control, or who slept through low blood sugars and never woke up, or whose blood filled with toxic chemicals that made their brain swell… And there’s such a stigma around it. People think all diabetes is the same, and it isn’t. Type 1 diabetes is not caused by eating too much. Type 2 diabetes generally only causes chronic complications and isn’t associated with the capacity to kill acutely like type 1 does. And it still frustrates me. Because this is what it does. (If you feel like somehow sharing this and helping me raise awareness of the reality of something I only just accepted myself after having it for almost 2 decades then… Please do – unless I went/go to school/uni with you, in that case… Yeah).
And in the early hours of this morning. I realised that this normal, harmless thing wasn’t harmless at all. I took on the role of my beta cells, and I only just realised what a significant and scary job that is. This is the reality that nobody really knows is there.
But I got a grip. After about twenty minutes of pulling myself together and then just crumpling into a sobbing heap all over again, I got up (literally), I paced around the room a little, I waited for the numbness to settle, and I gathered myself back together. And then I curled back up on the bed, and I went to sleep. And I hoped that all my health hiccups would stay happy until morning. And I decided that I’d tidy my room and catch up on work and go and see some of London at Christmas (as I want to).
All to the backdrop of Christmastime.
That’s the point, you fall apart but the world keeps turning. No matter how much I’m given to deal with, time won’t stop to let me deal with it. So what else is there to do other than to switch off and hope that it hurts less in the morning?
By the way, it did (hurt less). In fact, it was forgotten. I guess when things get rough, you just have to keep moving so you’re harder to hit, and hope that life has poor aim.
No way but through.