Diabetes Burnout – One of Those Days

It’s just been one of those days. 

And I just want to cry. 

It’s the type of day that you don’t have any particularly mega high bloods or particularly nasty lows. Just the type of day that you just want to give up. 

The monotony of the condition of having do another test, needing to do another set change, think about it all again has got me down today. I really don’t want to do any of it (a lot more than usual). 

I can’t get it out of my head that it’s going to be like this forever. It will always be monotonous (and yet unpredictable and dangerous too). I have to do the same things day in, day out just to try alive and it will never EVER change. 

Arghhh!

It probably doesn’t help that I did a bad sensor change yesterday with it painful and bleeding, plus I forgot to take my test kit out and about this morning and I forgot to give insulin a lot today. But those are all really little things, so I shouldn’t be feeling like this, there hasn’t been a trigger. 

I’m sorry that it’s another negative post, but diabetes isn’t always positive and I can’t bring myself to write a cheerful post when I’m feeling like this. I also don’t think I want to talk to anyone because I don’t want help. I’ll be okay, it’s just a random rough patch. 

It’s stupid because I’m staying with my grandma at the moment who is being so amazingly strong and resilient with her current medical issue, so how can I be so weak when she’s being so strong? I’m usually so much better than this, so much stronger mentally because I’m amazing at kicking diabetes’ butt usually. But today I don’t have the energy to even try. 

I don’t want to have to change my set every 3 days. 

I don’t want to test my blood sugars 10 times a day and definitely not more than that. 

I don’t want to think like an organ 24/7. 

I don’t want to be diabetic.

I can’t do this anymore. 

*Update – I planned and wrote this in a bad 5 minutes earlier so it is a little worse than I really feel, but I think it’s important for people to understand so I’m posting it anyway. 

*I’m not looking for pity, I just needed an outlet so I chose my blog.

*I have now finished the day on an 18.9 as a result of all this. Yay. 

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Ignoring the CGM – Why?

Have you ever heard of #CGMArt?

Neither had I until a few weeks ago. It’s an interesting concept…. because you’re turning the negativity of the swinging BG levels into a piece of art which is a silver lining and a good aspect! But to have a true masterpiece you must first have had atrocious control for at least 12 hrs…… So surely this is not logical. Although this is something I actually believe I might have already achieved. 

Possibly more than once….

Rather efficiently too.

How do I achieve a mountain range of a graph, you ask?

Or, more specifically, you ask why I don’t answer my CGM alarms. But I don’t know how to answer your question, because there are simultaneously so many answers and yet none at all. 

Honestly, I think one of the biggest contributers to my lack of response to the CGM is the length of time I’ve had it. This coming December it will be my 10 year pump anniversary (on the 14th) and I started on my sensor the same day. I’ve grown accustomed to wearing it, inserting it and the alarms going off all the time. I’m SO used to it that I answer it automatically, not registering what it said or that I should do something. I just….. 

Click. 

Cancel message. 

Then I carry on with my life. That can happen quite a few times in a row and it often results in mega high blood sugars or slightly high bloods for long periods of time. 

I have to say I do seem to take notice of the low alarms and my smartguard turning on much more than the high alerts….. I guess that’s to do with the more immediate effect of the hypo. There is a danger of me collapsing, having a seizure or worse, right there and then. But highs, they’re different. 

I feel invincible. Maybe it’s because I’m a teenager, but it doesn’t feel like anything would happen to me. It won’t be me that develops the complications. It won’t be me that could go into a coma because my blood sugars can’t come down from the high. It won’t be me, because I’ll be fine. 

So I think, subconsciously, I always think like this when it comes to the CGM. I think that I can put off dealing with the high even though they’re just as serious  as lows, in thier own way. 

Probably the other main reason for ignoring the alarms, is simply that they’re not interesting. I have a life with exams, friendships and activities that are all more interesting or more import than the alarm. So I just turn it off because I have better things to do with my time. My CGM alarm simply isn’t that important at that moment in time so I intend to deal with it ‘in a little while’ aaaaaand then I forget about it completely. 

I know that sounds idiotic, but I honestly have conversations with my mum that go something like this:

Mum – “Can I see your pump?”

Me – “Sure.” *hands it over and carries on texting*

Mum – “Uh, have you seen your graph? You’ve been high for the last 4 HOURS!”

Me – “Oh?” (Knowing exactly what’s coming.)

Mum – “Hmmmmm. You have alarmed high every 1/2 an hour for the last 4 HOURS! And where are the tests? The insulin? NOTHING!”

And my response is simply “I forgot.” And I’m not lying when I say that. I just don’t do it. 

Because ignoring it is just easier. 

Because life happens. 

Because I just forget. 
 

Are you guilty of creating #CGMArt?Or maybe you struggle to understand diabetic logic around CGM alarms? Share you thoughts, opinions or questions in the comments!

#CGMArt…..

#ThisIsABitBetter

No More Nagging – 6 Tips to Help You Help Your Teen

If you have a type 1 son or daughter, or are a type 1 teen, I can probably bet that the most frequently said phrase in your household is probably “will you stop nagging?!” or something very similar. 

I sometimes sit on a panel of diabetics to answer parent’s questions and one of the most prominent questions is “What do we do wrong?”. You don’t do anything wrong, you are brilliant! But I thought I would put some of my favourite answers (that are nit-picking) into a blog post!

Tip #1 – Ask how WE are.

It might seem a bit strange at first glance, but it’s a biggie. After a long day at school (primary or secondary – this especially applies to diabetics year 9 and up), it might seem cliche or cheesy to say “How are you?” or “Anything happen at school today?”, but it’s exactly the right thing to start off the conversation with. I dislike nothing more than to jump into the car, after escaping the stressful, difficult environment where blood sugars may well have gone haywire that day, and to be greeted with “how were your levels today?” An innocent question to you is the worst question the world to the teen. Trust me, we know you care and want to keep us safe, but show you care about us and our feelings more than some numbers on a screen! 

Tip #2 – Blaming mood swings on blood sugars. 

An extremely common symptom of high blood sugars is, of course, being snappy, snarky and generally being a grump. However, it is so frustrating when every single slightly snappy comment is met with “What! This isn’t you! Test!”. I understand that you’re concerned about my blood sugars and want to treat them as quickly as possible, but you’re much more likely to get a positive response if you wait a few minutes before simply asking what my most recent number was, giving you a reason completely unrelated to the tantrum to ask me to test. 

Tip #3 – It’s not your fault. 

After living with diabetes for a long time sometimes it won’t take a blood sugar, a sleepless night or bad set change to put us in a mood. It’s just the unpredictability and yet monotony of being diabetic that gets us down. We don’t mean to take it out on you or hide in our rooms. We still love you, you didn’t do anything wrong with helping us with the diabetes, we just don’t love diabetes. 

Tip #4 – Wait for the high blood sugars to go down.

Yes, I may be high. Yes, maybe it was my fault I am. Yes, I already know that. Trust me, if I caused a high blood sugar I already know it was me. And I’m usually already kicking myself really hard by the time you find out. So, pleeeeaaaaase wait for the high blood sugar to go down before dealing with the causes however you choose to. I am highly likely to sit there rolling my eyes and ignoring you whilst I’m high if you attempt to talk about it then. Whereas if you focus on helping us and then confronting the issue that got me there, I will be a lot more responsive!

Tip #5 – Don’t tell us it’s easy.

I once timed how long it took to do a blood sugar test. It only took 52 seconds. Calibrating my CGM is only about 5-15 seconds. Calculating the carbs varies but will only take 2 minutes maximum (on average). And yet these tasks and others similar are not easy or quick when you simply don’t want to do them. I fully understand that they need to be done and they will help me control my diabetes. But they are a chore, an annoyance I don’t want but sadly need. So, rather than being confused as to why I haven’t done this ‘easy’ task and asking why I’m taking so long, – help. It just takes that small thing out of our hands. It just helps. Because yes diabetes has these huge tasks and implications but sometimes it’s the small things that get us down.

Tip #6 – Do carry on helping us.

Yes, I’m a teenager. Yes, I want to be independent. Yes, I don’t like asking for or accepting help however big or small. But do please carry on helping, without us asking you. Offering to set up a cannula change every so often, remind me to bolus and help plan temp basal rates for doing and out and about. These types of things are a nice gesture and it gives us a break. I already know you do so much for us, but sometimes we can’t do all of it all of the time. 

I don’t want you to go away from reading this with a heavy heart, so please don’t. All us teenagers love you and appreciate everything you do for us and we realise how difficult it is for you as well as for us. So thank you.

Are you guilty of any of these? Do you have some of your own tips to help reduce nagging? Post your thoughts in the comments!


Diabetes Holidays – Hoburne 2016

Well. I’ve had an eventful weekend.

I spent my bank holiday weekend how I always do, at a CWD caravan holiday that happens to be organised by my mum (which resulted in a simple walk to my friends’ caravan on the first evening becoming a stop-every-5-seconds-and-hug-another-person walk, which was quite fun I have to admit)!

And yet this year was different. It wasn’t because it was our tenth anniversary of the holiday or because I had a GCSE exam the day afterwards. I can’t quite put my finger on it, but it was different.

The first year this holiday ever took place, I remember meeting a little girl called Olivia. 6-year-old me was stood outside my caravan peeking out from behind my mum, focusing on the little girl who was mirroring me from behind her mum. I distinctly remember she had a red lollipop that I was highly jealous of, having never had one myself at that point. 10 years later, Liv and I still spend the whole weekend with each other!

I picked up other friends along the way, namely, Adam and Oliver. I met Adam 3 years ago and Oliver the year after, but they were all separate friends of mine in different social groups most of the time, at this event. (All of course there because of type 1 diabetes and being in CWD). I guess the thing that made this year special was that the four of us spent the holiday together.

We had an eventful weekend to say the least, including:

– a 2.8

– a 20.5

– an allergic reaction

– 2 episodes resembling an asthma attack

– 3 set changes in 24 hrs

– a number of highly competitive card games

Despite all of these mishaps, I simply can’t put into words how amazing my weekend was and how much I miss them already!

You’re probably reading this thinking – how lovely, she’s spent time with some of her diabetic friends. Except, none of them are diabetic. And, that doesn’t matter because they get it anyway.

They each have a younger sibling with it so blood sugar testing, insulin pumps and the rollercoaster of levels are their normal too. I wondered if coming on holiday to a place of diabetes annoys them because there’s so much of it at home anyway, even wondering if they found my having it an annoyance. So, I asked and, I quote, this was the answer I got:

“It’s about being with people who have similar experiences as you. To know you’re not the only one who feels a certain way.”

Then,

“I’m so used to it, it can be weird to not be with somebody who has it.”

Yes, they might not understand the frustration of being sat up, half asleep in the middle of the night with bloods in the 2s, what a hypo feels like or perhaps how painful a bad blood test (of the vein type) truly is. But that doesn’t mean they don’t live with it too.
For example, I had pretty much 5 hours of solid hypos on Saturday evening. At least three times I only tested because my friend said I had gone pale and he was concerned, although I felt okay at the time. (He had been correct).

They all revealed at another point that in fact they all carry glucose and/or spare set changes with them for if thier sibling needed them, or anyone at this weekend really!

At another point we got into the topic of my other conditions (CHI, gastroparesis and dyspepsia – as a result of the surgery) which can take a while to tell the whole story and explain. The friend I was telling didn’t nod off! He (seemed) genuinely interested, which was wonderful! I enjoy telling my story because I’m so proud of it and often people only are interested in the really basic bits so I don’t tell it too frequently.

That’s not even a fraction of the things they do automatically or how they help me. Another small but brilliant example – it not being out of the ordinary to debate whether or not I should have long acting carbs after a hypo. Not many people I know can do that. Even my family don’t know that much.

They really are special. However much my school friends are around a hypo me and however much I randomly blurt out d-related things – these three people, who I see ONCE A YEAR, understand me better. Simply because they don’t have to ask. Nothing about diabetes at all. They just know.

And I love them for it.

* I’d like to add that I love them for countless other reasons too but they’re unrelated to my blog:)

* CWD is Children with Diabetes UK and it is an organisation for, you guessed it, children with diabetes and thier parents (run by the parents).

* I did also socialise with other friends with and without diabetes over the course of the weekend, with these three there too, of course.