Diabetes - the beginning

Something I’ve wanted to do for ages is to try to describe my diabetes, how and why it affects me and frequently makes me a miserable grumpy git. In time (and more posts) I might even be able to make you understand how I get through so many goddamn jelly babies!

Where to start…

This is a tricky one. It turns out that, like C-3PO in Star Wars, I am

“… not very good at telling stories. Well, not at making them interesting, anyway…”

Even when the story revolves around one of the most important parts of my identity - I’ve struggled writing this. I’ve wanted to note down this stuff for years - I stayed awake countless nights in the first few nights going over it. The various aspects have all become woven into a complex structure that is too dense for me to make sense of in one go so for now I’ll try to start at the beginning. I can fill in some inconsistencies in later posts.

And, just like that, I have diabetes

This coming November will be the 20th “anniversary” of my diagnosis with Type 1 Diabetes. My parents had semi-diagnosed it a few months before while I was home at weekends from university. They’d seen my uncle exhibit the same symptoms and be diagnosed probably 25 years prior. Although they asked me if it was possible I had diabetes I was sure it was nothing. I was at uni, just starting my degree after completing an HND so of course I knew better… A new predilection for drinking fizzy water was all I was really aware of to start with. In truth I didn’t even know the symptoms before I found myself at the campus doctor’s surgery.

In the last few days before that appointment I’d started to feel really tired and pretty crappy. I figured I was coming down with a bug so despite my physical weakness I struggled into my (motor) biking gear and rode down to Tescos - topping up on all the usual ‘poorly student’ super foods & drinks. One of my house mates had drunk Lucozade when he was ill to give him some energy and I felt like I needed a similar boost - so that went in the basket too. I got home, struggled out of the leathers and went downstairs to try the Lucozade - I don’t remember ever having any before that day. We had a soda stream machine when I was younger so we never needed to get branded drinks.

So, there’s me - sat on the sofa, orange fizzy drink in hand watching the Remembrance day service from London - it was the 11th of November. Classy… Whilst it tasted nice, the orange fizzy stuff didn’t seem to be helping and I felt worse by the hour. I eventually decided to dig out the campus emergency numbers and booked in at the Dr. Luckily for me I lived in sight of the campus. Unluckily, this being the valleys the surgery was stuck up a series of hills. I registered and waited for my appointment.

Don’t pass Go, don’t collect £200

I described the symptoms, and the Dr cottoned on pretty quick and he did a blood test. A figure of 6 mmol (ish) is what a non-diabetic would typically average down to. I was off the scale, it simply said ‘HIGH’ instead of a number so immediately we knew it was 30+ mmol.

The Dr told me to go to hospital IMMEDIATELY and asked if I wanted an ambulance called to the surgery to take me. That’ll get your attention! I knew my house mate was home so I figured he could take me. So I toddled home after a teary call home to admit to my mum I’d been wrong and she’d been right about the diabetes. I grabbed some stuff and then Clem and I set off for the hospital.

The rest is a bit of a blur. I had a small army waiting for me when we turned up. I was finger-prick tested again whilst simultaneously had a cannular fitted on the other hand. The glucose test device had a wider sensor range, and I had a reading of 54 mmol. Apparently, I should have been in a coma somewhere around 45 mmol - or so I was told later…

I was hooked up to the first of several intravenous saline solution bags. For that first afternoon they weren’t rate limited as they later would be - they were sucked in as fast as the blood-stream could take it. The team described this as necessary to basically flush as much of the sugar out of me before they started introducing insulin. I now know that it was also to treat a condition known as D.K.A. I’ll post more of this another - suffice to say, given the state I was in it was fast approaching an organ-threatening (if not life-threatening) problem. From what I know of D.K.A. now it’s probably the one part of all this that scares the crap out of me.

My parents arrived after a few hours, and Clem forewarned them that “it wasn’t as bad as it looked”, before they found me with a cannula in both arms and drips and beeping machines attached to both. As soon as the fluid bags ran out they were replaced with fresh ones. No checking anything (other than to ensure the new ones were flowing). The first night wasn’t a fun night with beeping machines, both my own and others around the room. And some old guy coughing up a lung every 20 minutes or so…

Over the next week in hospital my blood glucose level got down to a ‘regular’ level and I started being able to eat again. The number of saline solutions we reduced and they were rate limited, along with a ‘sliding scale’ infusion of insulin. Basically a near continuous slow trickle of insulin to keep my glucose levels in check. I was given my first test kit, and shown how to use a syringe (pens were available but the needles weren’t yet on prescription and so would be expensive). It was hard to inject at first from a practical point - ideally I needed to pinch some fatty tissue from my stomach but as I’d lost somewhere in the region of 1.5 stone I was struggling to find anything to inject into - and they were big needles! I was only 9 stone to start, so I didn’t have it to lose. In hospital even my parents described me as looking like I had come out of a concentration camp. An exaggeration for sure, but you get the idea…

After that week I came home for a couple of weeks. It was a strange experience. I had a bundle of medication to get put onto repeat prescription - the first of many struggles due to the many names for related stuff and because the NHS seems clued up more for the vastly more common Type 2 Diabetes and has less day-to-day knowledge of Type 1. I had to let the DVLA and insurance companies know. More amusingly I also found whilst I was in hospital that some glasses I’d had prescribed in the summer break before diagnosis were now too strong… I couldn’t see a dang thing through them. The slow buildup of excess glucose in my blood was also in the fluid of my eyes and had soaked into my lenses. It meant the shape of my eyes had (very slowly) changed while my background sugar levels had risen. During the week at hospital this glucose level had reduced quickly and for a while (a precious short while) I didn’t even need glasses! I’d worn them since I was 3 or 4 and yet in that first week at home I found myself able to drive the car with no visual aids!

So, what really happened?

Diabetes is an auto-immune system condition. The best I can describe it is that I had a viral infection sometime during the early summer of ‘98 which my immune system successfully fought off. I’m not a biologist (as will become evident in approximately 3.2 seconds) but I gather the immune system works by finding ’something foreign‘ (virus cells / infections / whatever) and determines a way to break down those unwanted cells. It then makes a lot of ’whatever’ is needed to get rid of the infection. Imagine ants attacking prey and swarming all over it until the prey dies and is pulled apart. As I said my immune system successfully fought the virus but it’s method of destroying the virus was also harmful to my own cells. In particular, my pancreas matched the criteria my immune system was using for the viral infection. So part of my pancreas was broken down as the virus was fought. The part that I no longer have is the part that produces insulin in response to rising blood glucose levels. So over the summer my ability to use the sugars (glucose) in food & drink reduced - and I was left with an excess of glucose in my blood, cells, and various fluids (eg in my eyes).

Don’t panic

My experiences during diagnosis are not a typical of other people with Type 1 Diabetes, for the majority of people at least. Granted some unlucky gits go through a similar hell - but often people know what the symptoms are before they start exhibiting them and go to the doctor before things get crazy like they did for me.

Coming soon (ish)

Exciting topics as: - High & low blood sugars and the short/long term effects of both. - D.K.A. - Exactly how many times can I inject in a day??