Let's talk about....... Diabetes
Those of you who know me, or those who don’t but may have read my past blog - The anatomy of a hypo will know that I am the proud (absolutely not the right word but let’s go with it) owner of a broken pancreas, and, as such am a member of the Type 1 Diabetes community. (Not a thing, we don’t all get together shooting up insulin in dark corners or having funny turns together.)
And, to be honest, it’s not generally something I enjoy talking about. It’s been in my life for over twenty years, when, at the age of 21, when my life, which should have been mainly about partying and not even thinking about auto-immune diseases, was thrown into chaos when I was told I had Type 1 and was swiftly admitted to hospital where I spent the next few days trying to process what the hell was going on, bizarrely all whilst feeling absolutely fine and feeling like an utter fraud. (I also spent a good few days during that time eating vast amounts of chicken tikka, made for me by my then much loved Mother- in-law who decided that was a healthy and diabetic friendly thing to have. It was. And it was delicious, but completely stank the ward out.)
For those who are lucky enough not to know a thing about Type 1 diabetes, let’s go through a few fun facts here. Basically, my pancreas, unlike one belonging to “normal people,” does not work and consequently doesn’t produce any insulin - not a drop, so when I eat, the sugar levels in my blood climb higher and higher, resulting in a hyperglycaemic “episode”. Plus if I don’t eat, or don’t eat enough, they could drop to dangerous levels, resulting in a hypoglycemic low “episode”. So this is why I have to “shoot up” before meals and inject myself with insulin. The fun part is even when I do take insulin, sometimes these things happen anyway. Such fun.
Let’s also get something straight here. I did not get Type 1 diabetes because I ate too much cake, am carrying too much weight, or because I like pork pie. It’s literally picks you at random, and yes, I would definitely have preferred if the random pick had come from a lottery ticket instead. It can be inherited, my own father had it for instance, though only got the random pick when he was in his fifties, not at 21 like I did, which at the time was considered odd. (I became a great guinea pig for the nurses in hospital, as they were more used to dealing with small children and people over fifty, neither of which criteria I fitted into.)
And, because I’m diabetic, it does not mean that I can never eat cake or pork pie again. God, that would be a massive downer. I can eat absolutely anything if I wanted to. A Kinder Bueno bar? Yes please. Takeaway curry? Also yes, I just have to have a few extra units of insulin to cover for it.
Ah, the insulin, there’s another fun part. The part when you have to firstly find a location to inject said insulin, (stomach, leg or arm in order of my personal preferences, though it largely depends on what I’m wearing. Jumpsuits for instance are a nightmare) dial it up to the amount you need and basically, to put it mildly, shove it in, press the button and inject. Yes, it sometimes hurts, yes, I’ve heard many people say “I could never do that” and yes, I do it because if I didn’t I’d be dead. Simples. I have lost count of the number of times I’ve had “the look” from people in restaurants, wondering if I am a) doing something illegal and am some sort of drug addict, b) incredulous that I have the balls to do it in a public place, or c) just disgusted by the whole thing. I used to go and hide in the ladies loos to inject, worried that I’d get “told off” especially after a particularly lovely lady approached me in a restaurant years ago to exclaim how she thought “people like me were disgusting.” When I replied “what, diabetic people?” she swiftly retreated back to the safety of her narrow minded, ill informed life. Nowadays, no cares given. If I need insulin, I’m having insulin, don’t get me wrong, I’ll be discreet, but why should I have to hide?
Another, and I feel the most “fun part” (sarcasm right there) of having diabetes are the blood tests. The finger prick tests that we have to do to check our blood sugars each and every day. Lots of times a day. You prick your finger, any one will do, I have my favourites, (left hand, forefinger and index for those who might bizarrely care) squeeze a drop of blood out on to a test strip which is then magically (not magical but again, let’s go with it) sucked up into a machine which counts down your fate and tells you what your magic number is. Or, as the professionals would prefer to call it, your blood sugar level. Oh this can be a fun game. You may feel absolutely fine and get a reading of 20. You may feel absolutely fine and get a reading of 3. Both of which require attention. As a guide, a “good” blood sugar level is between 4 and 7. Anything, for me at any rate, (as I’m not remotely professing to speak for everyone or be anything close to an expert) above around 15 is “high” - or hyperglycaemic and below 3 is “low” - or hypoglycaemic. The weird thing is being high, for me, is hard to tell. (No jokes please.) If I enter into the 20 or above territory then I start feeling knackered and thirsty, symptoms that frankly, as a Mum of a small rascal, who works and has stuff to do, are symptoms that I can feel on a daily basis anyway. The lows on the other hand, now they are just the gift that keeps on giving and another story altogether. (Again, please note the sarcasm.)
A “low” episode, or again, to give it its proper name - hypoglycaemia is what happens when blood sugars dip below 4. Imagine, if you will, feeling a little dizzy, disorientated and confused. Not really being aware of what’s happening around you. Feeling weak and unable to process simple tasks. (Take for instance the time I wanted to make coffee whilst having a hypo. Four mugs later, coffee everywhere and cold water which was absolutely was not contained within a mug.) If you’re lucky, you grab some glucose tablets, a sugary drink or, my absolute favourite form of treatment, marshmallows. (Also fun to use these if you care to play a quick single player game of “fluffy bunnies” whilst shoving them in your mouth.) If you’re not so lucky, you become completely unaware of what on earth is going on, you become aggressive, shouting and screaming, “a little bit punchy” as my darling husband described it once, (apologies love) denying absolutely any treatment offered, flinging said marshmallows into the bin, all over the floor and generally Being A Weirdo.
These particular “episodes” have happened to me a few times. When I was first diagnosed at 21, I spent the first 15 years or so of diabetic-ness without really any hypos at all. Either I was excellent at managing it all, maybe I was just lucky, or maybe the signs appeared quickly so I knew what to do without it being “a thing”. These days, I’m increasingly lucky to spot the signs, an occupational hazard I’ve been told, of being an “old diabetic” (I’ve been called a number of things in my time, but really?) which results in unexpected drops at times. (Before anyone starts wondering, or if my Mother is reading this, I always test my blood sugars before I drive and luckily, working from home means I’m pretty much always close to the marshmallow cupboard. Yes, that cupboard exists in my life.)
In the style of the old Top 40, my worst ones, my Top 3, have been as follows - (humming the theme music to the old chart show whilst you read this is fully optional, yet greatly encouraged.)
3) Portugal circa 2008. On holiday, with my husband and in-laws. Middle of the night. Husband couldn’t wake me up, when he did, it was clear I was having a low. I refused help as I’d gone too far, by which time he called for help from my Mother in law, who helped my husband force a few sweets down my throat and a sugary drink. All good. Apart from the fact I was sleeping naked at the time. Cue the coming round part, where you feel like you’ve just woken up from a dream, suddenly become massively aware of the situation and by aware, I of course mean completely embarrassed. Sorry Mum-in-law for what you had to see that night….
2) At my in-laws house, circa 2011. (I promise there isn’t a running theme, either with my in-laws or being naked.) This was a few months after my little rascal was born. We were visiting and a low occurred. A grim one. An ambulance was called, the paramedics arrived, sorted me out beautifully, all was marvellous until I had the aware moment again and came around, this time absolutely convinced that the paramedics who’d helped me were in fact social workers, who had arrived to take away my then 3 month old baby. Cue a lot of tears from me, much reassurance from them and of course the utter embarrassment that always follows.
And straight in at 1) At home, about a year ago. We had been out for dinner with friends. My husband was away so it was just me and the rascal. The dinner I’d had was very nice, but stupidly I’d given myself slightly too much insulin, not that I knew this at the time. We got home, I felt fine and started putting the washing away. Started to feel a bit low but thought, “I’ll just finish this, I’ll be alright”. Rookie error. And spoiler, I wasn’t alright. I came round to my seven year old son stuffing marshmallows in my mouth and stroking my hair. And yes, the thought of what could have been doesn’t even bear thinking about.
There have been a couple of others but none nearly as bad, as memorable or as embarrassing as my all time Top 3 above. Although a time in Cheltenham where my friend had to run to reception and talked the hotel manager into giving her numerous bags of sweets from the vending machine because her “diabetic friend needed them Right Now” was frankly, almost a highlight. Now, I know, I shouldn’t get embarrassed about it. It’s a disease, it’s vile, but unfortunately these things sometimes happen. I have many friends who I’ve been out with over the years who have witnessed me spouting absolute nonsense (yes, more than usual) for a good few minutes until I, or someone else realises what’s going on and fetches a Coke or gets the glucose sweets out of my bag. And, thankfully, 97% of the time anyone sees me on a daily basis, I am “normal” and diabetes just isn’t really something that plays on my mind. (I’m being kind with the rough guesstimate of 97% but I’d say it’s pretty close.)
It’s a similar feeling to the one you wake up with after a night of having a few too many and think “Oh God, what did I do” “Who did I offend” or “What did I say?” but without the hangover, just a feeling of being completely exhausted and only a touch, but a big old touch of the headache. So a mild hangover I suppose. It’s the feeling of not being in control. I may test my blood sugars up to ten times a day but these are merely snapshots of a moment in time, it doesn’t tell you if you’re heading up or down. It tells you what you are right now, but who’s to say what’s going to happen in the next ten minutes or two hours? Guesswork and the odd wobbly feeling, that’s pretty much it.
So I started doing a spot of research. And I’m hoping I have come up with an answer. Or rather the medical experts have. And it doesn’t involve Jason Momoa feeding me marshmallows as and when I need it. Which, admittedly, is a shame. I have always, for some reason really been against the idea of a CGM (Continuous Glucose Monitoring) monitor, a nifty little device that sticks to your arm or stomach, takes your blood sugar levels and magically sends the results to your phone or to a reader. I’d, stupidly perhaps, been against it as I didn’t want to a) have something stuck to me constantly, continually reminding me of my diabetic persona, or b) finally have to admit that I needed to do something about the wayward blood sugars. (I should add again that most of the time, my diabetes is well controlled, my diabetic nurse only yesterday remarked on the fact that my overall scores are “excellent” Thank you nice lady.) But, I think this could be the way forward. No more blood tests, no more having fingers that look like teeny tiny (I have very small fingers) pincushions. No more stress, no more off the scale readings either way. No more having an equally stressed out husband who at times must feel like he just wants a “normal” wife who doesn’t have these peaks and troughs going on in her life and throwing them rudely into his. And no more, perhaps needless, but absolutely real embarrassment. I hate to admit I sometimes don’t feel well. I hate to admit I sometimes need a day off because that bad hypo I had last night has made me feel like I’ve been hit by a truck and I just want, crave and need sleep. I hate to admit that I sometimes need to cancel meals out, nights out or drinks with the girls because I know either my blood sugars or I can’t cope with it.
According to NICE, (the National Institute for Health and Care Excellence) people who are diagnosed with a chronic physical health problem such as diabetes are three times more likely to be diagnosed with depression than people without it. It certainly has a knock on effect to how you may feel about your diabetes and can easily progress to “Diabetic Burnout” resulting in little to no care about your diabetic management. Thankfully, I’m nowhere near burnout stage though I will freely admit I suffer with anxiety and depression which, though not directly brought on by my diabetes, has almost certainly played a part in how I feel about it at times in my life.
I’ve written this blog post because I have finally reached the point where I refuse to be defined or controlled by this auto-immune disease, this “invisible” disease that people largely associate with people who stuff their faces with cake all day. (Again, nothing wrong with a bit of cake, I’m a big fan.) I’ve bit the bullet and am going to be trying a new CGM over the next few weeks and, for anyone who might be interested, I’ll come back and let you all know what I think. Best case scenario it’ll be a total game changer. Worst case, I go back to finger pricking blood tests and speed dial Jason Momoa to get over here immediately with his bag of marshmallows. I’ll let you know 😜