November 2016: World T1D month.

As I’m sure you’re well aware, November is type 1 diabetes awareness month. For us diabetics it’s usually a time of celebrations, because we got through another year with T1D and we’re still in one piece. However for me, about this time every year since I started high school I seem to have some sort of break down. I just can’t seem to cope with it anymore! Maybe it’s caused by the new academic year and all the changes it brings, maybe just because it is November and it’s a month of diabetes positivity. But I thought I would revisit the first time having type 1 really hit me hard, November 2012. (Year 8, second year of high school and in the middle of gaining my independence with T1.)

I wrote this little piece on my mums’ timeline, so it was my first taste of putting my thoughts down on a page. It isn’t written very well and I apologise for that but it certainly gets the message across:

“this is jessica here. mum told me to write this on her account because none of my friends would understand.

I’ve had a really bad day – really bad. i think i must’ve cried 3 times? 4 times? it all started when we went to hastings to do some shopping and, i forgot my test strips. yeah i was really angry with myself. as was mum when i told her. on the way home from hastings i started to explain how the simple things like making sure i had test strips, was forgotten. i check every morning i have the glucagon in case i need it. the strips get forgotten. so i can’t check whether i needed to use the glucagon or not. i was really angry with myself.

then i explained to mum, how, at school, i can’t be bothered to test, something else is going on and i want to be a part of it. also i can’t be bothered to look atmy pump when it starts to siren because ignored t. i don’t want to be different. having a test kit that lights me up and a pump that yells at me-it makes me different. i don’t want to be different i want to be normal. what’s worse is. my friends think it’s cool to be diabetic. i get to have an awesome beepy thing an awesome light-y upp-y thing and i eat sugar in class. that’s what i hate. why should they love it? they don’t understand. diabetes makes me stick out like a sore thumb. my friends think it’s fun when I test when i’m hypo bacause i talk rubbish. but i don’t like having to rely on a machine to tell me if i’m ok. my friend hannah – she feels sick , she goes to the medical room and goes home has medicine… mum said but that is totally differnt. i said yeah but if i feel ill like that i have to test my blood to check i wont collapse in the next few minutes. it’s the same situation but i have to deal with it so differently. i wish i was like hannah. but i’m not. i’ll never be. because the diabetes will never go, i can’t escape – ever and i know that. i can only dream. and in my dreams i have the perfect life. a life without diabetes. 

going back wards a bit i said i couldn’t be bothered to test or do my pump right and everything. i said also if i talked to joe solo (ffl) i would say yeah i promise to test. but actually the next day i would totally break that promise and not do my morning test because relying on that machine to tell me if i ok, singles me out. it’s horrible. i’m thankful that frederick banting created insulin otherwise i probably wouldn’t be here, but really diabetes kills. and most of the time – i’m scared. but because i haven’t collapsed say in the middle of cooking class or something because i haven’t tested. i can’t believe that would ever happen. 

mum and i sat down and talked to me how we were normal and my friends were the odd ones, i agreed.but tomorrow i will be just as different as yesterday. and i will feel just as different as yesterday. she can try to let me test less use the sensor and that. but really she can’t take away the diabetes, she can’t. i will be attached by a tube to a machine that keeps me alive for the rest of my life, i will be sticking needles in myself forever.

sorry it’s long but i’ve had a really bad day. xx”

I was 12 then. But 4 years later aged 16, it hasn’t really changed that much. Of course what I hate about and struggle with with diabetes changes and evolves with me – maturing, expanding and shifting with every new obstacle. At 12 years old driving and university were barely even on my radar and yet now they are a huge part of my life (or more precisely, getting them into my life is a big part of my life!) and at the other end of the spectrum the idea of being different has completely  fallen off my list of priorities in recent years. 

But the core of the problems is always the same. I dislike having diabetes. I cannot get rid of it or fix it. Essentially, I am sick of being ‘sick’. This time of year these feelings crop up in different forms, presenting with new feelings and I’m not afraid to say my care slides. I am struggling, as I always seem to this time of year. 

So November is a time of diabetics celebrating life, showing the world that we can and will beat diabetes over and over again because that’s what we do. Eating plenty of cake and absolutely kicking diabetes’ butt as we love doing. November challenges me, pushing me to get better at what I do and how I cope. World diabetes month is hard for me, but I’ll get through it. And I know this because I’ve done it before. 

“Strength does not come from physical capacity. It comes from indomitable will.” – Ghandi. 

Non-diabetic Diabuddies: What’s it Like?

So, I took the liberty of interrogating a few of my non- diabetic friends! I thought it would be really interesting to see how it felt to be friends with a type 1 diabetic, so I asked them.

I can’t thank you guys enough for helping me out with this! But before you read their answers, here’s a little bit about them:

Ryan and I have been friends since we were 13 (we met in school through both having an unnatural love for science…..), and gradually becoming really, really close all down to sharing hundreds of classes together!

I’ve known Adam since 2013 through a caravan holiday weekend that my mum organises for T1s across the UK, so although I got to see him once a year until this year (meet up number 3 is approaching soon), we’re also extremely close but sadly can only message or skype at best most of the time. Adam’s younger brother has type 1 diabetes and has done since 2010 and Adam helps out with it where he can. 

Rachel and I met way back in the first few weeks of high school, so it will be our 5 year friend-aversary soon. We’ve been incredibly close friends throughout having been through good times and bad times together, including a trip abroad once!

I was going to amalgamate and paraphrase all their answers, but upon reading them all they are so incredibly unique that I decided to leave them just as they were! Although I was rather mean and gave them a 5 question quiz to start them off…..

– My responses are in the parts in italics. (I won’t be offended if you decide to skip to the actual questions, the quiz was just a bit of fun!)

The Quiz – 5 Questions

Q1 How do you get type 1 diabetes?

Ryan – T1 is from your pancreas not producing enough insulin? Right?

Adam – There are many ways to get type one. The most common way is when the immune system thinks that the pancreas is a foreign body, and attacks the insulin producing cells. Another way is cause by surgical intervention, when either the pancreas or part of it is removed, affecting the insulin production level. I love how Adam clearly isn’t a newbie at this….

Rachel – Its genetic, so you don’t just get it. I asked which type she meant. Type one, but you got yours from your pancreas being taken out. It was at this point I realised I’d never actually told Rachel how you get normal type 1, but she was right about the genetics and pancreas for my type which is awesome!

Q2 What does does insulin do?

Ryan – Insulin breaks down glucose I believe. Me: “Kinda? It lets sugar into the cells so you’re right about it getting rid of the sugar yeah!” (Ryan then added: Insulin sends your blood sugars down.)

Adam – Insulin is a hormone produced by the pancreas (or artificially) that signals the liver to turn glucose into glycogen.  I think….. GCSE biology here…  Insulin is the key to the glucose lock. Once insulin unlocks the glucose, it disappears. (After me stating that I was really only looking for ‘It lowers the blood sugars!’ he then proceeded to put this…) I was going to go on about parts of the brain being starved of glucose, resulting in changes in the personality of a person having a hypo. Usually bad behaviour…. I’ll be honest, I hadn’t even thought of that….

Rachel – It controls the amount of sugar in your blood (by helping it get into cells?) I was completely shocked. “Oh my gosh. Yes. Wow.” was my reply, because I simply couldn’t wrap my head around Rachel knowing this – apologies for underestimating you!

Q3 What are my hypo symptoms or general hypo symptoms?

Ryan – Tiredness. Dehydration (thirsty). Normally you dont make much sense.

Adam – Pale Face, weak muscles, change in personality. (Becoming more rude or violent etc. Not necessarily you! Phew! Um. Pale face is yours by the way. Usually you get more excited when hypo though….) And that’s too true – I appear to act drunk when low unfortunately….

Rachel – Feeling thirsty and/or hungry and not really making sense with what you’re talking about. And not being able to concentrate I think.

Q4 What are my high symptoms or general high symptoms?

Ryan – Being thirsty.

Adam – I actually don’t know for you personally. I know my brother gets very rude…And thirsty.

Rachel – Tiredness and headaches, maybe being more thirsty?

Q5 How do you treat a hypo?

Ryan – Well. You often have your Lucozade. So you need some sort of glucose, right?

Adam – You treat hypos with fast acting glucose. This can be in the form of full sugar coke, glucose juice, glucose tabs, Jelly babies etc…  And if it’s a really bad hypo treat with a glycogen injection. Glucagon* But I guess it really doesn’t matter what it’s called when you’re using it, does it? Thankfully they’re not voice activated yet!

Rachel – Well you tend to have some Lucozade or one of those small cans of coke, but can’t you just have anything sugary? Like honey or something. Oh and you also have to sit down and stay sat down until your blood sugars are up. I honestly didn’t expect such a perfect answer…. so then Rachel went: This is why I never stopped asking you stuff lol! Which suddenly makes perfect sense why she did stop asking and just start stating!

 

The Actual Questions – 10 Questions

Q1 Do you remember what your first thought was when you found out I was diabetic?

Ryan – I was probably intrigued and asked questions or sat in silence observing what you did with your pump.

Adam – Honestly, I don’t. I don’t exactly see a person as a diabetic. I see a person who just happens to have type one. It doesn’t really affect my opinion. To be fair, I probably went. “Oh cool, I guess she’ll be able to help me understand what it is like to live with Type one. Especially with her being the same age as me.”

Rachel – I dunno, I guess I didn’t really think anything of it, I was just intrigued as to what it was and how it affected you cos I’ve never really been a judgmental person.

Q2 What do you think of me talking about it frequently or when I don’t mention it at all?

Ryan – When you talk about it alot I’m not bothered as it still intrigues me even now. I could listen to you talk about it for a while actually. Wouldn’t understand much but still interesting. And when you don’t mention it. We’re having other conversations and I will say, even though I dont mind you talking about it, sometimes it can be nice to have conversations without the diabetic topic coming up. But yeah.

Adam – I really don’t notice. I’ve been around type one for so long. That it’s normal to have a conversation about it, but is also normal not to talk about it, just have a nice conversation about something else. I don’t really notice.

Rachel – I prefer it when you talk about your diabetes and the diabetes world cos I still find it really interesting to hear about your highs and lows, how well you’ve been handling your bloods and all the holiday things you and your diabetic mates go on. Ooo and the conferences you talk at seem pretty cool too. After Italy, I feel that even if you don’t mention it at least once, you feel like you talk about it too much.It got  to the point where I was talking about talking about it more than talking about it – just a tad ridiculous there for a while. I don’t know how Rachel put up with me to be honest! Which completely isn’t true cos diabetes isn’t who you are, but its a part of who you are if you get what I mean. Sort of?? 

This is always something I’m so self conscious about – the whole talking about it too much thing. So it’s a relief every time I hear someone say they don’t mind or are interested! 

Q3 Do you prefer to ask questions/know a fair amount and be involved or do you prefer to be laid back, leave me to it and know what I offer up?

Ryan – You obviously know that I like to ask questions. Even though I never remember your answers I do like to know whats going on. I’ve not been one to sort of prompt you to test though as I’m never certain on if you are going low/high or not. I always check what number you are (over my sholder I should add! I don’t mind at all to be fair, it’s great knowing people are interested enough to look at my number) and like to look at your graphs to see how you’re coping. Me and Ryan often got bored in lessons and towards the end of year 11 we would sit and go through my CGM graphs over the last few days to see how much time I was high or low etc… at least in maths it was halfway applicable to the subject…. 

Adam – I tend to sit back and let you get on with what you are doing, but I always offer advice and help if needed. (Even if you ignore it sometimes) ….. thank you Adam…. I remember a disagreement over a tea cake following a hypo once, sadly Adam was correct and I had needed to eat it, so I feel like that is what he’s talking about there….!

Rachel – I defo prefer to ask questions cos in my mind its better to ask and know just incase the worst happens and also cos if I didn’t ask firstly, I wouldn’t know anywhere near as much as I do now and secondly, if I didn’t ask I would just be staring waiting for you to explain and staring is just rude. This is the answer that surprised me the most out of all of them, as I had never thought of it like this!

Q4 Are you ever worried about my blood sugars in a situation?

Ryan – Even in normal situations I’m worried (but that’s cus I care about people I’m close to obviously). But in some situations I do worry substantially more but won’t show it unless I notice something’s wrong. But that hasn’t fully happened yet. And when it does you’re usually already on top of it.

Adam – That’s a difficult question to answer. I don’t worry about your blood cause I know you know what you are doing. But I always make sure you are okay and that your bloods are alright. Not necessarily worrying.

Rachel – If I’m being honest I always get worried about your blood sugars cos obviously both highs and lows can be dangerous. But two main situations stick out, first when we were rehearsing for something with in the wings and we were in the church-your blood sugars were like 25 or something and they wouldn’t go down and your mum came and picked you up early I think. Second was a session three in year eight, your bloods were really low and it took either 4 or 6 small cans of coke to bring them up and at that point it was a mixture of being worried and finding it quite funny how much sugar it took to bring them up. Yeah they were both really worrying.

I was expecting either a ‘No, I’ve never considered it’ or a ‘No you’re always in control of it anyway’…. Turns out I don’t know my friends like I thought I did! Whoops. This is better somehow though.

Q5 Do you think you’d know what to do in an emergency? Do you know what the glucagon is and do you think you’d be able to use it/know when to use it?

Ryan – Well. I’m good at panicking. Id try to calm everyone down, and you if nessercary. Id call people to help and phone 999, again if nessersary. But no I don’t know what a glucagon is and wouldnt be able to use it. Ah. Hmmmm. Perhaps this is something we should have a chat about somepoint soon just in case then…. Sorry for never properly teaching you  about what would happen in a sticky situation!

Adam – In an emergency, I would test the person’s blood sugar. Call an ambulance, and if required use the glucagon. Yes I know how to use it, I’ve had ‘training’. Also I know where and that you don’t want to use ALL of it. Alright smartipants!!! (Love you really) – we don’t need to revisit any of this at all hahahaha!(definitely good that you know this much though!)

Rachel – Okay in an emergency I would firstly call your mum, and if necessary an ambulance. Umm the glucagon is an injection thing to bring your blood sugars up (I think cos it basically has glucose in it) and I’m guessing it’s that thing where your trousers have to be taken off Wow thanks Rachel, nice to know that’s what you remember haha! and it has to be injected into your thigh I think. It needs to be used when literally nothing is working to bring your blood sugars up so its a last resort?

Q6 How much does it bother you that I have a medical condition?

Ryan – It doesnt bother me much. Yeah so the things we can do are partially resticted but that doesnt matter cus you’re my friend and we can always find something to do. Your condition doesnt affect your personality and therefore you’ve still got an amazing heart and are a great person to talk to. With those factors in play, the condition doesnt even matter. Awww thanks!

Adam – As I mentioned before, I see the person and not the condition. It doesn’t bother me one bit. Not like it’s your fault you have type 1.

Rachel – It doesn’t bother me at all. I’ve only ever known you with diabetes. To be honest. I think it would bother me if there was a cure and you were cured of diabetes cos it would be a massive change to who you are. (I’ve written a post about this previously, ‘The Cure for Type 1 Diabetes?’ , my opinion being similar to Rachel’s!)

Q7 How do you think it affects our friendship?

Ryan – It doesn’t. Thats the simplest part. As I said. Youre an amazing person and I’m glad to be your friend. With or without a medical condition I would still feel the same way. Simples.

Adam – Meh, it doesn’t affect our friendship. Or if it does, it adds and extra layer to it as we both have something in common.

Rachel – Ummm I don’t know really, I suppose in a way we have a closer friendship than I have with most other people cos of how much I know about you and how concerned I can get about you when you’re having a really bad day but other than that it doesn’t affect our friendship in any way.

Q8 Do the needles, blood and daily care bother you? Are you interested in it?

Ryan – Needles. Nope. Blood. I have a cat. Ive got a slit down my arm that bled for 10 minutes. Im fine with blood  daily care. None of my business. If you need it I’m not going to stop you  Well that’s good to know I guess…. and I’m very interested by it to be honest. You’ve got an interesting condition and to know what goes on is fascinating.

Adam – Oh doesn’t bother me. And yeah I’m interested, it’s interesting to know how different people deal with similar situations.

Rachel – Um I don’t know…….the needles don’t really bother me cos they don’t come near me. Blood has never really bothered me and I’ve gotten used to seeing small amounts of blood coming out of your fingers anyway   After 5 years I feel like it’s just a bit too late to apologise for the blood and needles, sorry! It is really quite interesting too cos obviously you have good and bad days and it’s interesting to see how the way you deal with it changes as to what type of day you’re having. Rachel really has seen it all with my bloods! Also that you have so much patience waiting for your blood sugars to rise or drop-it must really take a lot of patience when the blood sugars are refusing to change.

Q9 How aware of the emotional side of it are you?

Ryan – Emotionally. Well. I know you stuggle sometimes. You get annoyed, fustrated and upset sometimes and I can understand why. Obviously your condition isnt going to be all “la-di-dah” easy. It’s going to have ups and downs so I understand it’s emotional.

Adam – Oh very aware. We talk alot about how type one affects you. How you can find it stressful etc. But we also talk about the good, rewarding side of having type one. The money raised for your research, the events you’ve been to and the peoples lives you have helped improve… Well that last point is exaggerating me thinks, but yeah we certainly don’t avoid the subject (in the slightest…)!

Rachel – I’m going to say relatively aware cos I know how frustrating it can get, and that sometimes it can make you really angry and upset but I don’t necessarily completely know why. “Ah I didn’t explain it properly did I?” No you haven’t really explained it properly, like all you’ve ever really done is said some of the emotions you’ve felt cos of it but never really why it’s made you feel that way.

Q10 Have you ever helped me or another diabetic by reminding of taking insulin, recognising a low or talked about and helped with the emotional side of it etc?

Ryan – You’re actually the only diabetic I know. I hate to say I never really pointed out when you need to take insulin. I would like to think I’ve told you if you’re high/low and I also like to think I’ve  helped you emotionally every now and then. I know I’ve not exactly been the most helpful person ever. I just follow you and ask if you’re alright haha. 

Adam – Yes, yes and yes! I’d be suspicious if Adam hadn’t to be fair, living with one and all…

Rachel – I’ve reminded you to take insulin a lot! You forget so much!  Why thank you…! I think I’ve helped you to recognise a low like when you’ve been making no sense what so ever I’ve asked what your bloods were like. And I’ve helped with the emotional side of it a few times and the main one I remember is on my balcony in Italy.

This really was a truly eye opening post for me to write and in particular prepare, with talking to the three of them. Some of the answers honestly shocked me, from knowledge on what insulin is to how they feel about it or how they like to help me! But by far the thing that I really liked the best about writing it, is how different all the answers are. So, thank you so, so much. All the credit for this entire post really goes to you guys!

If you have any questions to ask your friends, don’t scared to ask them, you never know what you might find out. Please don’t hesitate to like or leave a comment!

 

 

 

 

Hide ‘N’ Seek: Level T1

I recently made the decision to hide my diabetes, which is something I don’t regret. 

This September I started sixth form in a new school, one that is an extremely different environment to my last school with brand new people too. I knew literally nobody who already went there or was starting. No one. So I decided that I would not, by any account, be ‘the diabetic one’. 

I genuinely couldn’t imagine telling people, it got my heart racing, I felt panicky and almost nauseous just thinking about mentioning it. I was terrified that I would only be remembered for my diabetes and that I would get awful reactions. (It didn’t help that on my induction day two months prior to starting someone in my year group (of 23 people so I can’t afford to fall out with anyone….) had called me pancreasless multiple times and couldn’t remember my name. All because of a simple conversation over organ removals (to be fair, saying I didn’t have a pancreas was very relevant) so I was quite miffed over that and it made me even less willing to talk about it this September.)

Long story short, that didn’t work out for me. I’ve always thought about hiding it, what it would feel like to not talk about it and people have no idea. So I did conceal my tests, never mentioned it willingly and was nonchalant about it and kept to the basics with the people who did notice the small things, but I didn’t feel safe in the slightest. I worried about what I would do if I had a low, who I could ask for help, how I could get around without taking my kit (obviously not an option!) I did slip up now and then because I’m so used to everything medical being open and on show. But gradually I started conciously letting my set be on show more, testing in front of people, doing all the essentials and answering questions if there were any. Best decision of my life! 

I physically can’t express how happy I am I did all that!! I needed to hide my diabetes, because I had time to let my personality show through and let people get to know Jess. Then as I gradually started gently revealing it I could answer their questions, as Jess. Now I’m not the diabetic one first, I’m Jess first. And I love it.

I’m so happy when people talk to me about now, something I didn’t realise I did but it’s so obvious now, I judge people on how they react to my diabetes. Whether they react at all, what they concentrate on and how open they are about it. 

I’ve had so many different interactions with people about it, from asking if I’m okay when I’m having lucosade, to asking me how hard it is to live with, to outright asking about my sensor (by name!)   and even noticing I’d had a particularly bad day with lows and asking why and how I feel, and so many more! All the conversations have been with different people too and it’s been so, so good. 

I don’t have to hide anymore and that’s how I like it. I’m me. Completely me.

It’s very funny, because it’s even helping me make friends, deciding who I get along with well has a huge part to do with how they register my diabetes. It’s an incredibly good tool to have, because the people who are interested – well, not even that -people who ask about or mention it in a similar manner that I do, plus not making a big deal out of it, they’re the ones I want as friends. 

I am controlling how much I’m saying, because I didn’t need to be the one who only talks about medical stuff but I’m getting there. So I’m happy being me right now, I hate hiding.