Notes on Type 1 Diabetes
On and about October 10th 2018 I was diagnosed with Type 1 Diabetes. On October 10th 2019 I celebrated my diabetic first birthday. These are my notes on living with Type 1 Diabetes for a year.
What is it?
Type 1 Diabetes is an autoimmune disease. This means your body's own immune system attacks itself, or a part of itself. In my case, my immune system attacked a part of my pancreas called the beta cells; destroying its ability to produce insulin.
Insulin is used to break down sugars in your blood to release energy. If you can't break down sugars in your blood, your body breaks down fat to get energy instead. This is a much less efficient chemical process, with unhelpful by-products. Your body can't do this forever (it runs out of fat eventually) and if it goes on for too long, you fall into a coma and can die. This is called Diabetic Keto Acidosis, or DKA if you're in a hurry. That's what it says on my letter from the hospital for when I was first diagnosed.
There is no cure for Type 1 Diabetes. Even a transplant of someone else's healthy pancreas would be no good, because my immune system would destroy it in the same way it did mine.
Around 4.7 Million (4'700'000) people in the UK have Diabetes, or around 1 in 15. Only about 8% of people with Diabetes in the UK have Type 1 .
How did you get it?
Science doesn't yet know. Most people with Type 1 Diabetes are diagnosed very early on in life as a child or young adult. I was 24 with no family history of Diabetes, which made my case rather rare, or interesting, to the doctors at least.
There are a few theories about how this can happen. The nurses explained it to me this way: At some point I caught a virus, like catching a cold. I didn't know I'd caught it, and my body fought it off. From the perspective of my immune system though, the virus looked a lot like the parts of my pancreas which produce insulin. This mean that the antibodies which my body produced to fight the virus also destroyed those bits of my pancreas.
That's why a transplant wouldn't fix the problem. My immune system "remembers" the virus, so a new pancreas would look like I'd caught it again.
I lost 8kg in the eight weeks leading up to being diagnosed. This was the main reason I went to the doctors, since rapid unexpected weight loss is never a good sign. I weighed 53kg when I was diagnosed, meaning that at 6"1' (1.85m), my BMI was 15.3. The weight loss was because my body couldn't get any energy from sugar, so it had to burn all my body fat to keep going. The doctors actually called me with my blood test results. They were furious I cycled to my GP, since I "should really be in a coma by now". After the most boring (and so probably best) ambulance ride ever, I was turned away from the first ward they'd booked me onto because I was "too sick". The nurse on the ward blinked hard went I said I felt fine, I think he thought they'd left me in the ambulance and wasn't expecting anyone with my measurements to be conscious, let alone walking around.
I spent the next few hours in the "resuscitation ward", which is where they put unconscious people when they arrive to bring them back round in. They filled me with saline and insulin using four different IV bags. I swelled up visibly so my fingers were all fat like sausages.
I was given my diabetes for beginners starter kit the next day. It contained: 1 blood glucose monitor (batteries included!), 1 spring loaded finger pricker, 50 blood glucose test strips, 5 Keto test strips, 100 insulin needles, 1 NovaRapid fast acting insulin pen and 1 Lantus slow acting insulin pen.
The next three days were spent in hospital bringing my blood glucose down to a normal level, and learning how to check my own blood glucose level and inject insulin myself. I got over my dislike of needles in no time. Anything you have to start doing 5 times a day goes from daunting to boring to forgettable pretty quickly.
What about Type 2 Diabetes?
In the words of my nurse: "it's a totally different disease". Even though the end effect is similar, the causes are different, and so is how you manage it, or someone with it. Basically, it's caused by a build up of fat and tissue around the pancreas, which prevents insulin getting out into the blood.
Type 2 Diabetes is usually caused by an unhealthy life style over a long period. It can sometimes be cured or reversed though a better diet and lifestyle changes.
How do you manage Type 1 Diabetes?
You have to learn to be a pancreas. Normally, your body uses a set of chemical signals (the endocrine system) to tell different bits of itself to start or stop doing something. Simply put, the body knows when there is an excess amount of blood sugar. This is communicated to the pancreas, which produces insulin in response. The insulin then works to break down the sugars in the blood.
My pancreas doesn't do that. So I have to frequently measure my blood sugar, work out if it is too high or too low, and act accordingly.
If it is too low (less than five mmol/L, "four is the floor"), I have to eat something sugary or sweet which my body can very quickly digest. For me, this usually means orange juice. Other people use Haribo. It's important to always have a consistent or known amount of sugar, so you don't wind up with it being too high.
If it is too high, I have to take some fast acting insulin to lower it. There are different types, mine is called Nova-Rapid.
I always measure my blood glucose level before a meal and before I go to bed. Whenever I eat anything, I have to manually work out how much insulin to take. This depends on how many grams of carbohydrates are in the food or drink.
I have two "ratios" I follow to help guide this:
- One is my Insulin Sensitivity Factor, or ISF. This is the amount of blood glucose level will go down by, if I have one unit of insulin. At the moment, it's 1:3.5. Meaning that one unit of insulin will lower my blood glucose level by 3.5mmol/L. It can change over time as I age, or acutely if I am ill.
- I don't know the name for the other one, but it's basically how many grams of carbs I can eat for every unit of insulin I take. For example, if a bag of crisps has ~30g of carbs, and my "carb" ratio is 1:13, then I need 2.3 units of insulin. I can't administer fractional units of insulin, so you can see how that might be a pain. I am now very good at my 13 times tables, though this ratio changes over time too.
I also measure my blood glucose whenever I'm unsure if it is too high or too low. This can be after exercise (likely low) or after some food I've not eaten before, or that doesn't have a label. I probably average between 4 and 7 measurements a day.
I measure my blood glucose by getting a drop of blood (I have a special stabbing pen with a mostly painless needle in it) and putting that drop of blood in a test strip, which then goes in a palm sized machine. You must be careful not to flick the test strip after it's been used, or you get a fine mist of blood everywhere. My desk would look awful under a black light now.
To take insulin, I use a pen with single use needles. Think of a mechanical pencil, but with a needle and full of insulin. I twist the pen cap some number of clicks depending on how much insulin I need, put the needle in some fatty part of me, and push the pen down to inject. The pens are single use and last about two weeks depending on how much I eat. It's important to put the needle in a fatty part, otherwise it hurts. I always go for around the tummy button. Occasionally I "find" a muscle, which is surprising, gratifying and painful in equal measure.
I can usually tell if my blood sugar is too high after a few hours. It's a subtle feeling, but my eyes start to feel puffy or a bit too big for their sockets and I squint more. The eyes are very sensitive to higher levels of blood glucose, and I get a special eye test once a year to check for any damage. High blood glucose is a problem in the long term. For lasting damage to occur, you have to have consistently high blood glucose for years. Doctors call high blood glucose hyperglycemia.
Low blood glucose is easy to notice. For me, it usually starts with a tingling sensation on the tops of my hands and arms. If that keeps up, it feels like a mild anxiety attack. My breathing is shallower, I feel very tense or on edge and can feel dizzy or feint. If this happens, I have to have some sugar as soon as possible that my body can digest quickly. Something like orange juice, sugary drinks or very highly refined sugar does the trick. Low blood glucose is a short term problem. If it is too low for too long, I will pass out. This is called a hypoglycemic coma. The solution is to rub honey or something sweet round my gums and call 999. Sugary drinks don't work because I'll be unconscious and unconscious people can't drink without drowning.
I also take a slow acting insulin every night. Each dose lasts about 24 hours, and gives my body the ability to break down some sugar all the time. This means I have a base line amount of energy to work with all day.
I will have to do this every day for the rest of my life.
How does it affect you day to day?
- I like my coffee black and without sugar, which is great. I don't know how frappachino drinkers manage.
- Own brand bread from different supermarkets has different amounts of carbs in it per slice. Thick sliced bread is different from thin sliced bread. Brown bread can be more carby than white bread, or not. This makes eating sandwiches more challenging. The same goes for almost all own brand food products.
- Cheese is great. Cheese has no carbs in it.
- I've become much better at portion control. Being confident I'm eating the same quantity of curry each time I have curry makes everything much easier, because I'm less likely to get the dose wrong and need to correct later.
- Weighing a bowl of crisps and working out the rough amount of carbs in it from the "per 100g" label on the packet is as sad as it sounds.
- My blood glucose level is affected by lots of things aside from food. These include my mood, the ambient temperature, how well I sleep and whether I am ill or not.
- Alcohol is interesting. I used to be a cider drinker with the occasional whisky. Now I am a whisky drinker with the occasional cider. Cider is very sweet (it's apple juice after all) and now gives me an awful hangover after only two pints. It's recognised that being Type 1 Diabetic means alcohol affects you much more. Your body uses a lot of sugar to metabolise alcohol (it's a toxin) and that lowers my blood glucose level much more quickly. But things like cider can be very sugary, so it's often a coin toss if I will be too high or low after drinking. Feeling drunk can be very similar to the feeling of low blood glucose. I usually have some crisps whenever I drink, since it's easier to be a bit high for two hours than a bit unconscious for 5 minutes. Whisky is great. It also has no carbs or sugar in it, and so interacts much less with my blood glucose levels. I also don't get such hangovers from it. Hence, it's now nicer to nurse a whisky or two over an evening rather than glug pints.
- The unspeakably mundane (how many carbs are in this crumpet?) now has an outsize influence on my quality of life.
For a "life changing" diagnosis,
it's been a bit underwhelming. I don't yearn for the days when I didn't have to stab myself over a bag of crisps. Sure, it'd be nice not to be Type 1 Diabetic, but day to day I just don't think about it.. Edited to add three years later. Dear reader, how wrong I was. I low level think about being Type 1 Diabetic all the time. It's taken me three years to realise, accept and come to terms with just how big a part of my headspace and energy it takes up. I'll never stop needing to get used to this, and how sometimes subtley, sometimes overtly, it affects everything in my life.
- Being ill is worse now. A cold feels like the flu, and the flu can put me in hospital because it makes my blood glucose so hard to control. I do get a free flu shot every winter though, which is a plus.
- Flying and going abroad is much more effort. Aside from "that's just my bag of needles and yes, I do need them in the cabin, Officer", it's so stressful that my blood glucose becomes much harder to control. Plus, everything I eat when abroad I am usually eating for the first time (whether it's a new food, or the same food in a different portion size), which again, makes it hard to know how much insulin to take. In some countries, being ill is also very expensive if you don't have insurance. I don't really enjoy going abroad any more as a result.
How do you feel about all of this?
According to my nurse, I'm quite good at Diabetes, which is nice. Generally, my blood glucose is well controlled, and I learned to calculate how much insulin I needed for a given piece of food or drink very quickly.
Knowing that I can end up very ill very quickly has made me much more cautious of how I act when going out. I was hardly an adventurous drinker before, but worrying that I'll give the people around me a demonstration of a hypoglycemic coma means that "just one more drink" is now "just not worth it". I can't handle putting other people in that situation.
There is an enormous set of bio-chemical, logistical and bureaucratic processes which must work in concert in order for insulin to be available to me. These have to work 24/7, 365 days a year for the rest of my life. Knowing this gives me a new perspective on the notion of stability, and an appreciation for how globally distributed the supply chain which keeps me alive is. If I live to 80 or 90, that'll be great, but as I look at how much the world has changed in the last 80 or 90 years (and more importantly, what happened to change it), projecting that sort of change into the future does not fill me with confidence. The same is true of food, but everyone needs food. Most people don't need insulin.
Without insulin, I'd have weeks to months to live. Being beholden to processes which I cannot control but that are a necessary condition for my survival is not a nice feeling. I am hoping that this persistent cloud of anxiety hanging over my life will subside with time. I'm lucky enough to live in a very developed part of the world where "that sort of thing just can't happen here". I can't escape the feeling that "things which just can't happen" usually do, eventually.
When I was first diagnosed, I was advised to get some sort of medical bracelet or wearable. The idea is that if I ever need emergency medical help, the paramedics can quickly find out that I'm Type 1 Diabetic. I don't have one yet. The benefits are obvious, the risk is one of low probability but extremely high impact. It also physically embodies that which otherwise only weighs on my thoughts and feelings. I say only my thoughts and feelings; in reality that's the place any burden feels the heaviest. I don't want to have to show off that I'm Type 1 Diabetic. Showing or displaying something like that feels tantamount to a request for help or sympathy which (however foolishly) I do not want, or want to need. Really, it is a reminder of how much independence I've lost. I don't yet know how to wear this feeling well.
I am expensive to keep alive. My nurse told me I take at-least £XXXX (Edited this out after learning how extortionate Insulin is in other places. The NHS saves my life every week.) of consumables related to Diabetes a month. You can't put a price on life of-course, but mine has a depressingly small lower bound. It's also hard not to feel guilty about the amount of single use plastic I get through now.
I don't bother to hope for a cure. If one is developed, then that's fantastic. Until then, it's not worth my worry. I'm not sure that curing Type 1 Diabetes is something which is properly motivated in a world driven by the maximisation of economic profit. I'm worth more to a company when I'm sick and dependent than well and free.
According to the UK Equality Act 2010, I am allowed to describe myself as disabled because I have Type 1 Diabetes. I have never felt the urge to self describe as disabled, and if anyone asks, I reply that I don't consider myself that way. Maybe I'll feel differently in 10 years time.
Helping other people deal with my diagnosis is exhausting. Convincing loved ones and friends that "it's going to be okay" has been much easier than convincing myself. I was very slow to tell people I'd been diagnosed. I think this was because I felt like I'd had so much of my own control and independence taken away from me. The only way I could re-assert that control at the time was to limit who I told and when. Telling each new person was hard, but it meant I got very good at telling the story, and re-telling it had a helpfully normalising influence on me. I was very careful to tell the story in exactly the same way, and to give exactly the facts and impression I wanted to give. Again, I think this was my attempt to re-assert some of my lost control and independence. This would explain why I felt so upset at people who treated my diagnosis like gossip.
I've not met or got to know anyone else with Type 1 Diabetes since being diagnosed. I don't feel lonely for this, or miss the validation of talking to others who can directly empathise. Everyone I tell I've been diagnosed seems to know someone who has Type 1 Diabetes and "lives a full and happy life" despite that. They've all been people who got it as children. I've considered looking for some sort of meetup for people in my situation. I think it would probably be like a club for tall people; just because you're all tall doesn't mean you have much else to say to one another. I'm sure I'd learn something by going though.
It is easier to articulate what I think about all of this rather than how I feel because there are no upsides to expressing the later. There is nothing good about being diagnosed with Type 1 Diabetes. This isn't a movie where I become a better person by overcoming this adversity. There's nothing I find noble or inspiring about that struggle. I have to do it, if I don't or can't then I'll die. I'd like to be glad people feel proud of me for how I've dealt with it all, but deep down, I'm really not.
Reasonably and rationally speaking, I don't think I need to worry about dieing of Type 1 Diabetes. I'll definitely die with it, but not from it. But I do feel much more vulnerable now. It's like a tether which binds me to being invested in a status quo where I'll always be able to get insulin, ideally for free. There are people who sincerely believe that you shouldn't pay for something you personally do not use. Ever. The idea of such people having power over the NHS, or even the public sentiment toward caring for the needy is now much more scary than it was before. I always found such sentiments awful. Or, I thought I did. Now I realise I just found them distasteful. Now my health depends on it, I can really say I find them awful and scary. Likewise, I don't think leaders of radical revolutions for a free and fairer society usually consider the effects their revolution or popular uprising will have on the insulin supply chain. Selfish as that sounds, and as much as I might like to be part of such a mob, it is now in the mix of my feelings.
I'm in a somewhat absurd situation; batting down catastrophising thoughts because my rational head is scared of how plausible they are and realistic they might one day be. I intend to live a long time, so it even seems prudent to consider these unlikely but very impactful risks.
Overall? Surviving with Type 1 Diabetes is really easy. Living with Type 1 Diabietes is really hard. I'm satisfied with how I think about it, I'm still working on how I feel about it. It is not easy. It is getting easier.
Edited to add after a few years: If you're reading this as a Type 1 Diabetic, the lovely people over at r/diabetes_t1 and r/Type1Diabetes are super helpful about everything. They've helped me out no end over the years.
- Diabetes UK Latest facts and stats. Retrieved Oct 2019. https://www.diabetes.org.uk/Professionals/Position-statements-reports/Statistics