Daily Pin Cushion

I remember it being my first year in college – I was 18 years old, all excited about starting my course and obviously the party life which accompanied it.

But my pancreas had other ideas.

I had been feeling run down, looked and felt tired all the time and generally did not look well. Keeping in mind that at 18, you should basically still look as young and fresh as a foetus, I had instead started to look gaunt.

At the time I was about a size 8 (I certainly ain’t that now!), didn’t think about dieting or food and just ate what I wanted when I wanted. However losing around 1.5 stone in about 4 weeks, despite eating like a locust and adding to that, a catalogue of other weird symptoms such as drinking gallons of water on a daily basis, getting up to the bathroom up to 10 times a night to name but a few, told me something was wrong.

I remember randomly reading a magazine article, reading the symptoms the girl had and thinking, shit……I have every one of those symptoms – and to my dread I saw they all pointed towards Type 1 Diabetes.

So I took myself off to the doctor and explained the rapid weight loss, despite eating twice what I normally ate, the thirst, the frequent bathroom trips and waited for the doctor to confirm my suspicions……..but she didnt.

Instead I got a grilling, asking why I was so determined to lose weight and be skinny. As an 18 year old with little experience of doctors before then, I was wondering what the hell she was on about. Hadnt I made myself clear as I carefully listed all my symptoms? But no…..instead of looking at the list using her Doctor Cap, she jumped to the conclusion I had an eating disorder, even though I had told her I was really worried about how skinny I looked. So she did a quick blood test and sent me home feeling embarrassed that I had caused a fuss.

Luckily I am pretty stubborn (ask my family), so after a few days, I thought, screw this, I am going back to a different doc. I could see the moment she clicked and the lightbulb went off as I listed my long list of very obvious symptoms. She did another test and told me to go straight to the hospital immediately as I was in what they call DKA which is Diabetic Ketoacidosis. DKA, for short, is when your blood sugars are so off the charts that you are in danger of going into a coma. Once I got to the hospital, they confirmed her suspicions and told me my blood sugars were 10 times normal and I was on the cusp of coma/stroke.

I remember calmly listening to them as they talked me through the very basics of diabetes and what they had planned for me over the next few days regarding ‘training’ to live with the condition. For those of you who may not be familiar with Diabetes, there are two types – Type 1 which is what I have (along with only 10% of the worlds population) where your pancreas literally stops working due to an autoimmune episode. This is when your body essentially attacks itself and your immune system and your pancreas ends up being the casualty. It means I have to artificially inject insulin into myself 4 times a day. Type 2 is the one everyone is most familiar with, and is usually associated with older, obese people who have a ‘poor lifestyle’ – their pancreas is still semi operational and can be controlled by diet or pills. Neither are good, trust me!

I spent a week in hospital learning how to be a good diabetic, test blood sugars through multiple finger pricks every day and the big one – injecting your insulin. Luckily I am fine with needles – although you dont really have an option being Type 1 (or T1 for short) – its inject or die and thats no exaggeration. I had instructions to test my blood sugars 6-8 times a day to start and told to inject myself 4 times a day – before breakfast, lunch, dinner and bed. Simple right?

Then I was given a follow up appointment, given supplies and released out into the wild like some sort of wide eyed Bambi, thinking it would be easy enough and I could handle it……………..

I wont bore you with a medical lesson or a detailed timeline of the last 19 years bringing me up to my present youthful age (ahem….), but I can clearly remember the ‘marker points’ on this shitty journey.

I always think that knowledge is power, so even at 18, my Mum and I bought some books on diabetes and we did our research. However, as with most things, the theory rarely matches the practice. You can read all the books in the world but I can promise you, the reality is NOTHING like the well written chapters in medical books.

Unfortunately, your body isn’t a machine where you just inject the required amount for what your blood sugar says and everything is straight forward. Having to take note of your readings, how many grams of carbs you are going to eat, what activities you may be doing, what the weather is like (too hot & insulin zips through your system, too cold and it does the opposite), whether you are feeling ill and may have a low level infection along with several other factors turns you into Walter from Breaking Bad, trying to get the calculations right and measuring everything out. It can be a guessing game on occasion which results in a very low blood sugar or an extremely high one – both of which can result in a coma.

Over the course of the last 19 years I have landed myself in hospital and been seriously ill more times than I dare to count. My first was roughly a year into being diabetic – I had my first experience of a full blown gastric bug, which I didn’t really realise was life threatening for a diabetic if not treated. True to form with the luck that I have, I was abroad when it happened on my first post college holiday, living it up in Munich. What started out as a mild stomach bug escalated to the point where I was losing consciousness and my blood sugars were off the charts. Luckily I have a weird in built ‘survival system’ where I know when something is serious, so I carted myself off to the nearest hospital and promptly passed out in front of them. Fast forward to two days later, when I wake up to the exhausted looking faces of my friends, who told me I had been unconscious for 48 hours straight……being released to go back to Ireland a few days later was a massive relief and I swore I would never end up in hospital again.

Yeah, it didn’t quite work out like that. Through various different gastric issues and otherwise, I have ended up in hospital several times over the years. If you take anything away from this blog, note that what is ok for a ‘normal’ person can be life threatening for a diabetic and events can go seriously downhill in a very short amount of time. Have a simple stomach bug means your whole system goes out of whack – the chemicals in your brain and in your body will either sky rocket or plummet, all of which can have disasterous consequences if not recognised or dealt with. An example would be, if your blood sugars go out of range, your potassium levels soar, which can lead to a cardiac arrest or stroke…….which is as frightening and serious as you can get.

One of the biggest and most serious episodes occured in 2010 a few months after I moved to London. I wont go into epic detail for the weak stomached amongst you, but it was the most life threatening illness to happen in all my years as a diabetic. To make a long story short, an injection site got infected, the hospital didnt treat it seriously or correctly and sent me home. I of course, knowing something was seriously wrong, dragged myself back into the hospital, only to be told the infection had turned into necrotising fasciitis – a flesh eating bacteria…….yes, an actual bloody flesh eating bacteria. What were the chances of that happening ? Apparently 500 cases in the whole of the UK every year……let that sink in. Two hours of emergency surgery and a tonne of medication later, I was left with an 18 lb weight loss (in 5 days – not a diet I would recommend) and was left with what is now a three inch scar on my stomach. Nec Fas (for short) has a 20% survival rate and for a diabetic I was a few hours from full out septic shock. Being stubborn and instinctively listening to your body pays off sometimes !

That’s probably enough stories of multiple hospital stays for the moment. On the ‘lighter’ side of diabetes, you then have the misconceptions, myths and judgements which come from other people. This can be one of the most frustrating parts of being a diabetic. In fairness I knew nothing about diabetes before I was diagnosed but I would never make assumptions of knowledge about a persons illness. I have lost count of the amount of times I have heard the following:

‘You dont look like a diabetic!’ – Am I supposed to have two heads or look ill ?

‘Do you have the good one or the bad one?’ – They are both shite, end of.

‘Did you cause it yourself?’ –  This is a tricky one as when I was diagnosed I was tiny and healthy looking. I have inevitably put on weight since then due to meds and my metabolism being messed up……and as most people are familiar with Type 2 (usually over 40, caused by obesity and bad life style), they see my size 14 arse and assume I caused it. My pancreas basically packed it in when I was 18 but I just dont bother explaining that to people who make assumptions……which may be a bit of a negative attitude but there we go……weight is a sensitive issue for me, but thats a whole other blog……

‘Should you be eating that?’ –  Never, ever, ever, ever say this to a diabetic…..it is the one comment which seriously pisses us off massively and makes us feel judged. If I am eating something sweet, I will give myself an extra few units to pick up the slack of my dead pancreas…….I have been doing this for years, so I kind of know what I am doing but cheers for your input.

Instead, just ask any questions you may have and show interest. I am always more than happy to chat to people and answer any questions they may be afraid to ask. Even if they get the information wrong or even ask one or two of the questions I listed above, if you honestly want to know about how it all works, I will never be smart arsed or mean – I will answer them honestly. The majority of people have a family member with diabetes and sometimes the information they have is somewhat incorrect, but the teacher in me wants to educate people as much as I can in simple language.

Reading back on this post, I do realise it can sound negative and a great portion of living with diabetes is that changes your life beyond all understanding. There are times when you hate your body for not working properly or for getting a low blood sugar at the WORST possible times. However it quickly makes you grow up and become cautious and less of a risk taker at times – something I am slowly trying to offset with ‘safe risks’ so I can live a good life which isnt boring. The one trait it does give you though is strength and an ability to cope with anything life throws at you. I use inner resources I never even knew I had and I have gained massive perspective on life and I tend to let the stupid unimportant things slide………

I have been thinking of how to wrap up this post and being honest its impossible to do so without bluntly cutting off this entire stream of consciousness. I can safely say this will not be the last in many chapters I will publish about the life of a diabetic. However I have always said I would never solely blog about diabetes – yes it is a massive part of daily life for me, but it does not define me. I am a thousand greater things more than this illness………all of which I intend to celebrate ! Pen