“It’s probably going to be nothing” muttered my GP as he dipped a stick in my urine sample.
“Hmmm” I was thinking, “I know this isn’t nothing”. I’d been feeling odd for a while.
No one wants to argue with a doctor, especially as most of the time it is nothing. We’re awfully good at finding excuses for our ill-health in the UK, and it was something I had been doing for the last 3 months. Excessive thirst? To be expected when it is 30 degrees outside in the middle of summer. Frequent urination? Well if you’re drinking a lot more water it’s got to come out somewhere. Blurry vision? I’m in my mid-twenties and my late father was blind as a bat, so surely I’ll need glasses soon anyway. Fatigue? Again, it’s summer and with all the festivals, seeing friends, sports and busy at work — you’re obviously going to be tired.
What had actually made me pick up the phone and make the call we all dread was weight loss. I’d been noticing my shoulders were incredibly sore after sleeping. I’m very skinny anyway, but this made me think I should weigh myself. I’d dropped down to only 76kg from 85kg a few months before, so I knew I had to make the appointment.
After a few brief moments, my doctor stopped and stared at the results in his hand.
“They’re is an awful lot of glucose in your pee, let me just get another stick and re-test”.
After my initial phone-call appointment earlier that day, my doctor had asked about my symptoms and advised I should come in to make sure it isn’t diabetes.
As is obligatory, as soon as the call was over I started googling. It all made sense to me — I set off to the appointment pretty much knowing I must be diabetic.
On the second test, he dipped the wrong urine pot, so it came back clear. He was perplexed. Fortunately I had seen what had happened, so kindly nudged him back to the right pot.
“Right Joe, this isn’t normal. I think you might be diabetic. Let’s do a blood glucose test to confirm this”.
Third time lucky?
He used a lancet to aggressively tickle my index finger, and sucked the deep red droplet into a little glucose reader.
33 popped up the number. My doctor nearly fell off his chair. For context, this number in a non-diabetic person should be no higher than 7/8.
“Do you use steroids” he asked? For a 6 foot 3 inch beanpole this made me chuckle.
“No doc” I said with a little laugh.
“You are definitely Type 1 diabetic” he said looking at me. “You’re actually gravely ill right now, and at risk of getting even iller”.
He startled me, I knew something was wrong, but when a doctor’s concerned, it all starts to get very real.
He made some phonecalls to Treliske (our local hospital) and eventually got in touch with a consultant, who told him to give me some insulin, send me home and get me to go to the hospital in the morning.
So that’s exactly what I did.
I sat in the car outside the GP and pondered. Diabetes. It’s something that everyone knows a little about, but never really the specifics or what it actually entails. Unless of course you are diabetic or know someone who is diabetic.
The next morning I went to the hospital and was sat down for around 30 minutes while a lovely nurse took me through everything. Hypoglycemia, hyperglycemia, background insulin, NovoRapid, lancets, aerostrips, ketone-strips, jelly babies, sharps boxes, needles, KwikPens and it went on. Exercise, snacks, mealtimes, HbA1C, eyesight, kidneys, foot-checkups.
It was an absolute minefield of information. I sat and listened knowing I have a Biology degree and a good understanding of the science behind my new condition, but this was next level.
What you learn quickly is there are 2 types of diabetes (conveniently named Type 1 and Type 2). Type 1 is an autoimmune disease, in which the body attacks the pancreas, destroying the cells involved with maintaining blood glucose. It commonly occurs in young children or as an adolescent (which was me, at 24). It also means you will be insulin dependent for life.
Type 2 is not autoimmune, and is incredibly complicated. Historically it has been believed it is to do with obesity, diet etc, but there is growing evidence there is numerous factors involved. I don’t want to get into that here, the main point is for Type 2 it is more to do with the body losing it’s sensitivity to insulin.
Anyway, I went home that day with a massive goody bag, relieved more than anything. I knew what I was facing. Although it’s a life long condition, it’s not immediately life threatening, so I knew I could get my health back.
The fact I had everything I needed within 24 hours is also down to how amazing our NHS is.
Although I was relieved, it was also awfully daunting. Would I be able to eat out at restaurants anymore? How will I play in my football team? How do I tell people close to me that one day I might face-plant to the ground and it’s down to them to save me. These were all things that stressed me out big time. Being married to this new uninvited friend I decided I needed to do my homework.
I was well placed to understand the science behind what I was reading. In the first month post diagnosis, I probably read about 350 articles about anything and everything needed to be a well controlled diabetic.
Control — that’s what it boils down to. My pancreas had decided it didn’t want to work anymore, so I had to take its role over.
So let’s delve into what being Type 1 means. To put it in its simplest terms, insulin works almost as a key. It’s the key that unlocks your cells, so glucose can enter from your bloodstream. Without it, glucose can’t get into your cells, so it sits in your blood, making your sugars high. With too much insulin, not enough glucose remains in the blood, making your sugars go low. You need to make sure you keep the balance.
So how does that look in day to day life?
Bare with me, as it gets complicated. Everyday, I have to inject insulin — either background insulin which deals with sugar your liver naturally releases into your blood throughout the day, or meal-time insulin, which is used to control your blood sugars after you have eaten a meal. Anything you eat or do has an effect on your blood sugar, and the aim is to keep it between 4 and 7. If it’s below 4 you are in a state called hypoglycemia (Hypo), it’s basically like going from feeling completely normal, to feeling like you’re at Shangri-La at 3am on the Saturday of Glastonbury — spangled. It’s also something I shouldn’t really joke about, as they are highly dangerous — if you don’t bring your levels back to normal fast, you will pass out and need someone to rub sugar into your gums. Not easy to manage with things like driving, surfing and football matches.
So why don’t I just keep my sugar levels high? Well, although this sounds a good plan, if you have them out of range even slightly, over the years (remember this is a life-long condition) this will lead to eyesight loss, kidney failure, and damage to your feet. And if they get too high, you also will develop ketones in your blood, making it acidic and causing a diabetic coma. It’s incredibly sad that many people do die from hyperglycemia, as they have not been diagnosed with diabetes and their sugars have stayed high for a long time.
Next, food. I could write a 10,000 word essay on food, so let’s also keep it simple. Everything you eat has an affect on your blood glucose level. Fat, sugar content, amount of fibre, time of day — these are just a few of the things that affect how fast what you eat affects your blood sugar.
Exercise? Before my diagnosis I used to get out running 3/4 times a week, usually at the drop of a hat. Now though, it takes military grade levels of planning — skipping insulin, carb loading, carrying a bag with emergency supplies. It’s just not as easy. I’ve actually changed my exercise plans so it’s still enjoyable, and not as stressful.
For the first few months following my diagnosis it was actually relatively easy to control my sugar level. This was because my pancreas was still partially working. When it finally died, my levels became much more sporadic, and the full level of responsibility came down to me, for life. This is something I work hard at everyday to make sure I keep within the right levels as much as I can.
What’s great about diabetes is that lots of people have it. So you’re not alone. If you can find someone who has had it for a lot longer than you they will be a master of their craft. That’s part of the reason I decided to setup a local support group. It’s in early days, but hopefully it’ll prove useful to people over the years.
I’m now coming up to my 1st year birthday with this condition, and I will be celebrating it hard on the day. Upon diagnosis my HbA1C level (a 3 month indicator of how well you are managing your condition) was 104. It should be no more than 42 for a non-diabetic person. On my last test, it was down to 45. So that is part of the reason I will be celebrating.
Another reason I will be celebrating is I wouldn’t ever moan about living with this condition. Although everything in this article makes it seem rather complicated and daunting, once I understood what I needed to do, I have everything I need to live a healthy and normal life. Nothing really has changed apart from I now carry around a lunch box with all my supplies in (yes, it has a little sticker for me to write my name and class in). I eat out regularly, I exercise when I want. Yes, I did order 300 Cadbury wispas and 180 packs of wotsits for lockdown because I can eat what I want when I want. I’m actually sick of wotsits, so if anyone wants the last few packets please take them.
Health is something we all rely on and we don’t really pay much attention to it until it fails us. I don’t view my diabetes as a fail in my health though. There are people who live with much worse conditions, and obviously things you can be diagnosed with that are much scarier. Not so long ago diabetes was a death sentence, but modern science and technology has made it so people with it can live a normal life. I am so grateful for that it is hard to express in words.
For 24 years of my life I was diabetes free. I don’t think the timing could have been much better. I feel massively for people who have had it since 4/5/6 years old. Growing up with the pressures of being a teenager and managing the condition is something I can’t really comprehend. Further, with the drinking and intensity of university, I’m grateful I didn’t have the worry of it throughout that period.
Ironically as I approach my first birthday, I’ve learnt it’s something that encourages me to lead a healthy lifestyle. A good diet, lots of exercise, avoiding excessive alcohol. These are all good things. Of course there are days it’s annoying and yes, over the years I will be more likely to suffer adverse health conditions, but you can’t live your life worrying about things like that. I could be hit by a bus tomorrow, so why worry about problems 50 years away.
It’s only now when I look back at the few months before I was diagnosed, I realise how poorly I actually was. Now though, I am back to my usual self.
It might get harder over the years..but for this first one, I think a good old celebration is in order.