Type 1 diabetes known as diabetes mellitus and juvenile diabetes

Probably been posted before in some format, but Mathew Wright you may want to take heed

‘But you’re so young!’I have type 1 diabetes. Also known as diabetes mellitus and juvenile diabetes. Type 1 diabetes is most commonly diagnosed from infancy to the late thirties. I was diagnosed at just over 2 years old – it’s generally the kids who are diagnosed with T1, not the adults.

‘(After having gone hypo and just finished drinking my lucozade) Better now?’No. I am hypo. I am still hypo after swallowing the lucozade. I will not be back in a safe range for at least another 20 minutes. So, don’t ask me if I’m better and want to keep walking. Don’t ask me a question in class. Don’t expect a friendly response seen as I’m hypo and considering what you just asked me I am no longer happy. Even if you are a close friend and I love you very much – you will not see nice Beth in this situation, you’ll see hypo Beth. Hypo Beth may snap at you and be grumpy for at least 20 mins, more likely an hour. I take at least 20 mins to come round from a hypo, it’s not instantaneous. So, if I snap after this question, I apologise. I know you have good intentions – but please, for the love of God, don’t expect a friendly response. You’ll be speaking to hypo Beth and not friendly Beth.

You said you have to have diet – WHAT THE HELL ARE YOU DOING DRINKING LUCOZADE?!?I am currently hypo. (Hypothetically, I mean.) I drink lucozade because the sugar gets into my bloodstream quickly and gets my BG back up. I don’t drink sugar drinks normally – I drink diet because when I’m at a normal reading, I don’t need anything to bring my blood sugar up (plus Diet coke is the best.) But, when I’m low, I need that fast acting sugar to bring me back to normal.

‘I guess it’s good that you got it when you were only 2. You don’t know any different.’Yeah, sure, it’s great that I’ve never been able to go out without considering my BG/going without needles. In fact I’ve grown to love it. Of course, that was sarcastic. It sucks having lived with this for all that I can remember of my life. I’ve never had a day off. You reckon that’s a good thing? Wanna trade places and only then may you comment.

‘That must hurt. I don’t know how you can do that to yourself.’Erm… because I want to stay alive!!!! Seriously?!? What a comment! Of course it hurts sometimes! When you accidently hit a blood vessel/the canula goes in wonky/ you accidently rip the cannula out, it does hurt. But, do me a favour, don’t draw attention to it whilst I’m doing a set/injecting. ‘Does it hurt?’ is a valid question which I’m happy to answer. ‘That must hurt’ is a statement, which draws even more attention between my hand and the needle. ‘I don’t know how you do that to yourself’ is a tad silly – seen as if you were diagnosed, you’d choose to do it too. I’d rather live and do injections. My method of doing any injection/set is distancing myself from the situation (i.e. singing to myself in French or Spanish – for some reason it’s always my Y9 French teacher’s track from the Superbus album that gets stuck in my mind. It’s my cheesy ‘safe’ song where I’m no longer focusing on the needle and I’m in a happy place.) So s’il vous plaît, my technique is distancing myself, don’t draw me back in to comment on how much it must hurt. That will make me tense and it will hurt.

‘I read that if you eat healthy then it goes away. There was an advert in my magazine. I’ll bring it to show you.’The same idea as number 14, there is no cure. Diet and exercise will not work. I’m stuck with type 1 diabetes.

‘I read about a cure in my magazine. I’ll bring it to show you.’I hate to break this to you, but… the media lies. Again, there is no cure. Do you honestly think I would put myself through this if there were? A note to remember – when you see an article in a magazine on ‘diabetes’ do three things for me. One, scan the article to see if you can see ‘type one’ or ‘type two’. Two, consider what type of diabetes it’s talking about. Three, shred and then burn the magazine.

‘Ahh, so you’re still diabetic?’Let me put this gently; Type 1 diabetes does not go away. I will not grow out of it and I can’t cure it through diet or exercise. Essentially, my pancreas is bust. I will be diabetic until there is a cure and on that day, I’m sure it will be on the news everywhere in every country. But for the moment, there is no cure. So every time you see me, yes, I will still be type 1 diabetic.

‘Type 1? Is that the bad kind?’I wasn’t aware that there was a single ‘bad kind’ of diabetes. Diabetes sucks – I have to do loads of stuff that any other person my age wouldn’t have to even think about. But no one kind is, ‘the bad kind’.

‘I thought I’d better not offer you a sweet, I mean, you can’t eat them, right?’Why make that assumption without asking? Yes, I can have the sweet. I give myself the adequate insulin and I eat the sweet. Shock, horror I might even eat two sweets!! Try to avoid making assumptions like this – I’ve had this happen to me and it makes you feel left out and different.

‘Why did you eat so much sugar as a kid?’I didn’t. As previously stated, diabetes isn’t caused by being overweight. Neither is it caused by the amount of sugar I ingested as a child. Again, this is an offensive assumption that can lead to embarrassment about weight/food and give us a complex. Try to avoid the sugar/weight card.

‘But you don’t look fat.’Type 1 diabetes is not caused by being overweight, end of story. No questions, it’s just not. Type 2 is more inclined to occur in people who are overweight, but this isn’t always the case either. Don’t assume my diabetes is linked to my weight, it’s offensive and will give me a complex.

‘I had to have my blood took at the doctors today. Needles freak me out so much, it was horrible; I still feel faint.’Needles suck. The bottom line is that, most people hate needles – I understand that it’s normal to hate them and I can appreciate that if you don’t go through the ordeal often, it can be scary and painful. But please, don’t go on about it for ages to me. I’m a needle-phobe myself, I hate the days when I know I have a set/sensor change. I go through that ordeal every 2 – 3 days, so whilst I appreciate how awful it is for you, I don’t tell you how stressed/awful I feel after doing my set change every 2 – 3 days so please try to avoid telling me every detail of how painful and awful your one blood test was. It only reminds me how awful my sets can be.

‘Well, it could be a lot worse. At least all you have to do is have insulin.’Oh but, it’s so much more than that. Everyone who is non-diabetic or not a D-mom/dad or sibling does not see the work that goes into what I do. It’s not just injections; it’s carb counting with a calculator at every meal, dealing with stroppy receptionists who don’t understand that insulin keeps you alive, remembering to order prescriptions, remembering to pick up prescriptions, dealing with companies that send you the wrong orders (or accidently ship your orders to Italy!), logging all BG readings, going to clinic every 3 months and being weighed/measured/having blood pressure taken/having a hba1c done/undergoing interrogation for your past 3 months of readings, having an insulin pump attached to you 24/7, going hypo from simply studying and using brain power, catching insulin tubing on doors/your own hand/getting it mixed up with your iPod headphones, going hypo, going high, treating and going lower, correcting and going higher, having ketones, dealing with the effects of exercise, dealing with the effects of hormones, dealing with the effects of stress, dealing with random highs and lows that life sends you, breaking down from time to time through the sheer stress of it all, working doubly as hard to get your essays or homework due in on time because you keep going low from studying, trying to second guess what will happen and failing miserably, getting up at least once every night, experiencing hypo-hunger (unless you’ve had it, you’ll never understand this), trying to explain diabetes to people that don’t understand, asking yourself why you have it, separate exam arrangements at school and uni, doing set changes at 3am, practically crying and hugging people when they ask you ‘do you have type 1 or type 2?’, ‘NO DELIVERY’. And even then, that’s only the basics.

‘But Halle Berry cured herself, why can’t you?’There is no cure for Type 1 diabetes. It’s that simple. Do you seriously think I’d be stabbing myself with needles so frequently and doing blood checks on 7 – 10 times a day if there were a cure? There is no cure. Don’t believe everything that the media tells you.

‘Should you be eating that? Are you sure?’Okay. I have to carb count everything I eat. I have to consider how much fat there is in it and what kind of bolus I should be doing. Should it be a normal bolus or a square wave? Or maybe a dual wave seen as variety is the spice of life. Every time I eat something, I have to consider what the carbs are. Furthermore, I live in a house where not only am I type 1 diabetic but my mom has coeliac disease. Food is a major thing in our house. So please don’t comment on whether I should be eating what I’m eating – I think about food enough as it is.

‘I’m so tired, I woke up at 3 am this morning!’I understand it’s rubbish waking up at 3am. Trust me, I really do. In fact, why don’t you go and get yourself a coffee and have an early night. You’ll feel so much better after a full night of non-interrupted sleep. I’ll be up at 3am tomorrow night. And the night after that. And the night after that. And every night for the rest of my life until they discover a cure. I’ll be up at least once, generally twice every night of my life to check my blood sugar and treat/correct. Oh, you weren’t aware that I did that every night? Ahh, well, next time you’re up at 3am, think of me because it’s highly likely that I’ll be up too, squinting at my diabetes charts with my lamp, rubbing my eyes furiously to try and wake myself up.

‘I could never inject myself like that, needles scare me too much.’Oh dear. I believe that if it were a choice between life and death, you would. Trust me – I don’t like injecting, in fact it terrifies me. But looking at the consequences of not doing the needles, makes me realise that having to go through the experience of a needle every 2 – 3 days is something I’m happy to do in order to stay alive.

‘My gran/cat had that. They had to have their leg amputated/went blind/died.’Thanks for telling me that. Yeah, I’m fully aware that I’m at higher risks for diabetic retinopathy, diabetic neuropathy and many other things. So, thanks for reminding me of the serious complications that I’m at a higher risk of because it makes me feel great, not.

‘Ohhh you have diabetes? So that means you can’t eat sugar, right?’Yes I can eat sugar, yes I can eat carbs, yes I can eat food. It makes me laugh how no one would comment if I were to eat a pizza and chips with garlic bread in front of them, but if I were to have a small packet of haribo – many people would ask me this question in a panicked way, as if I’m unaware that I’m putting sugar into my body. Sugar and carbs are in everything: pasta, apples, sweet potatoes and milkshakes – I carb count and give the adequate insulin for whatever I eat.

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