Independence with Type One Diabetes 

This isn’t an educational post – I haven’t written about how to gain independence, these are simply my experiences and feelings about it all. 

Independence. It’s an interesting concept when it comes to T1. It’s an interesting concept without T1 too but I’m not experienced in that area so I’ll stick to what I know!
What is independence? When should you/will you get independence? Do you want independence? Is independence safe? How do you get independence? 

Life is supposed to be pretty straight forward. All these questions are supposed pretty easy. “When you’re ready you’ll know” or something similar is the typical answer to most of those questions. You hit teenager and start to meet up with friends on your own, have your own house keys, make your own way to school, start using public transport alone etc. Eventually you’ll move out and go to uni or something of the sort. Simple, right? Try throwing T1 in the mix and it gets a tad more complex. 
Google defines ‘Independence’ as:

The fact or state of being independent. 

Personally, I don’t think that one is very helpful at explaining what it means…. so I searched again. Dictionary.com shed a little more light on the matter. 

‘Independence’ is, according to Dictionary.com:

1. not influenced or controlled by others in matters of opinion, conduct, etc.; thinking or acting for oneself: an independent thinker.

2. not subject to another’s authority or jurisdiction; autonomous; free

3. not influenced by the thought or action of others

So these subdefinitions all head along the same lines – it’s freedom from others essentially. But how does all this relate to T1 or differ from the norms?

Well, I’ve had problems with independence since I was about 13. Simply because that’s when I started wanting it. At that stage a large portion of my friends were walking to school together, with their own house keys and own agendas (that seemed) completely different to their parents’. I loved the idea of that! We were choosing our GCSE options at school during this time so if I was being asked to make these huge decisions about my future, surely I could just walk down the road unsupervised? Right?

All things like walking to various places by myself posed the same problem (and still does). Hypos. Walking just crashes me, I can be perfectly fine wandering down the street and decide to pause and test and I’ll be 2.1. It’s not every time, but it’s enough to be a concern. So how could I possibly walk home with people who weren’t equipped to deal with lows like that, who didn’t know to make the decision to stop and sit when I would want to blindly carry on? (Yes, I’m one of those people that would carry on as to not be a bother to others. It’s stupid but true…) I just wouldn’t be safe. (Plus I’m a complete ditz and was rubbish at keeping in contact with my mum so she was never sure where I was or how I was doing). So I got very jealous of my friends and their independence. There were countless other examples that I just used to get frustrated by, as I know I have friends who reached certain stages of independence years before me. 

Issues with my independence, or my perceived lack of independence, have evolved with my lifestyle. Now it’s all about alcohol, travelling by myself and university arrangements amongst other things. Probably the biggest annoyance is getting around by public transport. Although I’m very grateful my mum plays taxi most of the time, I badly wanted to be able to walk up to the station, get the train there and go and socialise. As I’ve gotten older though, I’ve had the opportunities to do that so this is no longer an issue for me thankfully. 

However, I’m constantly striving for more independence and to not need help. But it’s so difficult when in the back of your mind you know if you have a hypo, a severe one, there will be a problem. It’s not just the severity of hypos with the dangers and consequences of them, but it’s also the symptoms of lows affecting judgment, coordination, the ability to think and know what you’re doing. At that point you’ll definitely need help. The thing is, when you’re trying desperately to gain independence and yet it feels like so much is stopping you, it feels extremely limiting. Those are the times that I really feel like T1 does affect my life and my capabilities. 

Even if it’s due to the safety issues of walking as a teenage girl or travelling in the evening, even if it is simply down to, for instance, there being a train strike so I can’t get from A to B by myself logistically it will feel like it’s my diabetes stopping me. It always boils back down to T1 even when it is only a tiny factor in a bigger problem or not involved at all. It is always in the background making me think twice about every plan I make or pushing obstacles in my way so it will always be the issue in my mind. It’s very frustrating. 

But, when I really sit and think about it I feel like independence isn’t complete self sufficiency. It’s not independence when you’re away from your parents or when you’ve been shopping with friends without any hypos during your travels. (Well, it is – but it’s not always only that). I think it is options. Independence to me isn’t deliberately choosing to be alone because that’s silly, it’s using the resources available to me to stay safe and having the option and the tools to be alone and have my own life separate from others but equally if someone is offering to be with you or help you, taking that opportunity. That’s still independence because you’ve chosen that of your own free will. Plus all the time I rant about wanting more independence or feeling limited, I do have independence. I am free to make choices about what I’m doing and how I’m doing it. I’ve noticed that the ability to do that and wanting to do that will happen at different ages for different people, when they feel ready they pursue it more and gain those experiences that develop that independence, then they will find their independence. 

So, I think independence isn’t  necessarily actions, it’s a feeling. It’s a feeling that comes and goes with what is happening and how much help or support I need but it always is there and is always growing as I go forward in my life. I might be alone or I might need someone there for my safety or even just want the company and feeling of security. But either way who’s to say that I’m not being independent? I chose that path myself. 

I realise this was a waffley post, but it’s a bit of a waffley subject to me! So please feel free to ask me any questions. Please don’t forget to like, comment and share:):)
 

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A Diary of a Day with T1D

What is it like in the head of a 16 year old with type 1 diabetes? For 1 day I thought I’d write a diary of what goes through my head and what I do on a day to day basis with a Medtronic 640G with enlite sensors. Quite honestly I’d completely run out of topics to write about, but I thought this could be a bit of fun! (I’ll include photos below so you can see some of the things I’m talking about.) This is actually a bit of a longer post than I expected but if I cut any out it wouldn’t be an accurate day in the life!

So my day started at 01:16. Am. Yep. On a Sunday morning with a deliberately and meticulously planned lie in – I’m awake at 1am! But that’s perfectly normal for a diabetic. My pump’s alarming: Suspend before low. Okay, so I could test. If I am low obviously I’d need to treat it. But I know my sensor has been pretty damn accurate all day so as it says 5.1 with only a gradual drop and I don’t feel low at all I’m going to leave my pump to it. 

06:50am – I wake to find my pump sirening in my ear, literally sat next to my head yelling at me “Sensor expired”. We figured out it would do this last night so I simply cancelled it and went back to sleep. 

09:30am, I wake up to find my mum grinning at me – “morning!” and testing my finger because as I didn’t have a working sensor we had no idea what my bloods were doing and I usually wake up in the 5s or 6s often with a patch of no insulin so I could have gone low. (Especially this morning considering I’d woken up at 4.1 yesterday). I was 4.9 and persuaded out of bed by the promise of eggs and bacon. 

10:00ish? I had taken all my tablets and done everything I needed to diabetes wise so I ate. As I’m scraping my plate I’m asked if I’ve given insulin….. so I say “dammit. No I haven’t, I find it so hard to remember to bolus when there’s no carbs in the plate!” We pause for a moment. “What about the baked beans?” Mum asks. Then I think back and remember the piece of toast on my plate too. Whoops. 

11:00am (I know, I know, don’t judge!) and I finally decide that a shower is a good idea. But, today I have to do a sensor and a set change so after putting the transmitter onto charge, I rip out the old sensor and notice the filament isn’t quite straight and there’s some blood round the plaster at the top. I’ve had some issues with sensor not finding blood sugars recently so the bent filament could be one of a few explanations that Medtronic warned us of. 

11:38am, I’m sat typing up all of the above and realise I’m not actually wearing my insulin pump yet from taking it off for the shower. Eek. Cue scrambling around under the wet towel to find the, thankfully waterproof, insulin pump. Plus I felt a bit shaky as soon as I got out the shower, so my first thought was hypo or possibly high but upon testing and being told I’m actually 6.6 I realised I’m probably just tired! 

Now, still 11:40, the two of us are sat at the table trying to figure out how to test the transitter to see if it’s working. Well, mum is. I’m just sat here being close for pump signal purposes really. Usually I would put in my own sensors but we need to try different ways round to face the sensor so I’ll need help with that from an outside eye plus I have no idea if I’ll be able to pull the needle out from the new angle. 

But as mum is sat looking busy, I’ll start setting up my set change. I’ve had some incidents in the past few weeks where I’ve injected and taken the needle out or ripped an non-working set out and it’s bled – the set actually didn’t stop bleeding and I was covered in blood (no joke) but that’s a story for another time. So I’ve put a few cannulas in my stomach to try and reduce the blood-related incidents. However, when I’m putting a set in my stomach I have to been careful because I have lots of raw nerve endings around my scar still so occasionally I’ll get a near excruciating set change (whereas the others I barely feel) and I have to stand stock still and try to not even breath it is such a sharp pain. 

Today was one of those set changes. Ironic isn’t it considering it’s the day I’m writing about it all? Luckily it was no where near as bad as it is usually so I could sit down and move around almost immediately. Normally it wouldn’t hurt like that but sometimes I’m just unlucky. But that’s that done until Wednesday. 

Now for the sensor. (It’s now 12:00pm). It went as normal except the needle didn’t come out easily and then it bled…. after I’d stuck the overtape over it. So I couldn’t clean up the blood at all. I now have no idea if this sensor will work at all!! 

At 13:00pm I’m very aware that I don’t have the sensor to beep at me if I’m heading out of range so I might need to test soon. But I’m sat painting my nails and take it from someone who smudges their nails at every possible chance, testing with wet nails is not an easy feat. I definitely didn’t feel low, I did feel a bit high but as I found out earlier I’m quite tired. It’s so frustrating sometimes as tiredness is hard to distinguish from high symptoms! 

At 14:00pm we’d just sat down for lunch and I had that tell tale thirst that isn’t just your normal thirst, it’s the one where your mouth isn’t dissimilar to the Sahara Desert. I tested and I was 14.4. Okay, so maybe my bloods were climbing a bit earlier on. As we’re tucking into our food I realised I should probably give some insulin for the mound of fries in front of me, knowing I always underestimate how many carbohydrates are in fries I think initially 45 or 50cho, so up it to 60 to be safe. Aaaand back to the food. Until my pump beeps again (after it had been beeping for me to tell my new sensor my most recent blood sugar every 5 minutes before I tested and had to turn the sensor off as I was too high to calibrate the number) but this time my pump is saying “Insulin flow blocked”. Brilliant. Somewhere in the tubing or set there’s a blockage or kink or something. It was a new set too, so it could be a bad set. I’ve had quite a few of those recently. 

I uncliped my pump and then we had to take the reservoir of insulin out and rewind the part of the pump that pushes the insulin in before replacing the reservoir. (Mum did it because I was still eating.) But we were sat in a restaurant! It’s so embarrassing to sit there with it beeping, I’m going “Mum! Stop it!” Because you can hold it closer your lap and it will get quieter but mum just goes “What? I don’t mind.” But I do! I live with my pump on silent for a reason! Then we had to work out how much insulin had actually gone through…. this was quite amusing. 

Mum: “okay 2.6 units have gone through. It wants to give 11.5u.”

Me: *mentally subtracting 2.6 from 11.5*

Mum: “9.4u!”

Me:”What? It’s 8.9u.”

Mum:*complete look of surprise* “Really? Are you sure?” 

Me”…”

So we did give the right amount in the end thankfully. But it was a bit more of an eventful lunch than I was after really. 

As my mum and I were walking down the road we bumped into some of her friends, but ended up talking about medical things! It seems to be a common topic for me and my mum. Sometimes I can get into huge conversations about various medical things in my life,  and frequently do, but today it wasn’t that long – just explaining that I felt at home with the St.John’s Ambulance girls I spent yesterday with because I’m not out of place with all the medical based things that happen there anyway! I don’t mind talking about others medical things and medical events but if I’m talking about my ow problems I get self conscious really easily, which might surprise some people because I know it doesn’t seem that way! 

15:54pm I was supposed to meeting a friend in 6 minutes. So I scrambled my stuff together and was about to walk out the door. I should have tested as I had been high before lunch, but I was late to meet said friend so testing was put off. 

Diabetes didn’t come up again until dinner actually, at 18:40pm I grabbed my test kit from the bag where I’d put it at my lunchtime test. It had only been 4 hours and I was 11.8 so nothing had gone too badly at all but I should have tested and given insulin in between those tests. My friend who was with me joked about how much she could remember in terms of diabetes because in high school we spent so much time together that she picked it up amazingly well and was so on it with T1, but even though I hadn’t seen her for 3 months she still knew what my bloods meant and what everything I was doing pre-meal was for! We always mention it somehow when we see eachother, but that’s okay with her. 

On another positive note, for the first time today I gave insulin before I’d started eating! I completely guessed the carbs as I had noodles but considering I was 8.2 about hours later I was happy. 

21:00pm was roughly when I was 8.2, but the only reason I tested was when I glanced at my sensor to find out it was till turned off from the high blood sugar at lunch. Whoops. But, it’s easily sorted so I tested, turned it all on and put my number into my pump and hey presto, hello working sensor. 

Finally, my last (I hope) diabetes moment of the day is the nighttime test. 22:15 I sit down and test – 6.7. Aaaand my pump beeps “suspend before low”. Okay. Well, as I did almost 21 hours ago I will leave my pump to do it’s job. If I pretreated because I’m going to bed I would definitely go high. Maybe I would treat if I’d been in the lows 5s or 4s, but the 6s? That’s a bad night in the making. I’d end up awake at silly o’clock needing a drink and unable to sleep. So I’ll leave it be and if I stay getting symptoms I’ll test and treat as needed. 

So that’s my day! This was a normal day for me. No two days are the same, for instance today didn’t involve any hypos, temporary basal rates, revision (affecting blood sugars), sports, big meals, injections, barely any low or high symptoms (the ones I did get were nothing compared to what I’ve had before) and there weren’t any big conversations about T1 which are somehow a common occurrence for me, either me making a comment nor anyone asking me about it. There would also usually be a hell of a lot more beeping from my sensor going on to tell me I’m going high, low or that it can’t find a reading. But as I didn’t have a working sensor all day, you guys missed the tuneful side to my average day. But, in short, that’s what goes through my head on a pretty minimal day! 

Filling the reservoir with insulin:

The new set and filling it:

My new and slightly problematic sensor: