blue candles

blue candles.

the sign that diabetes has claimed yet another life.

every time one appears somewhere in the diabetic community it scares me. it scares me just how bad diabetes really is

people think its a pretty harmless disease to have, one that doesn't have much risk of killing you, but they're wrong. 

this morning i found out that a friend from the diabetes community died at the weekend. she had been in hospital with diabetic ketoacidosis (a condition which can be fatal if not treated quickly) she was getting better though, she was going to be discharged.... but she never made it out of there. 

its times like this when i really really hate despise diabetes. its taken the life of yet another person. it shouldn't be like that. 

people need to realise the seriousness of what it can do... how life threatening diabetes can be. 

but right now I'm hurting for the life its taken this time...

RIP Hazel, I'm gunna miss you an awful lot... I'm just glad you don't have to fight this anymore </3

things change

The hardest thing that I've had to come to terms with since being diagnosed with diabetes is how quickly things can change by a huge amount. 

I still remember how when i was first diagnosed i would have Saturdays as almost a day off from diabetes and eat what i wanted and not care too much about my levels, i would be able to eat loads and loads of carbs and only hit a 13-14mmols reading. i remember the panic that would cause. i remember how if i missed doses of my meds it didn't really have much of an effect on my levels... 

then a few months later things got worse. my levels were going higher than i had ever seen... i even got a reading of 31.4 at one point. a packet of crisps could send my levels into the teens and the meds didn't seem to be working anymore... 

and now? now i look at carbs and my levels can shoot up... i can test and have a reading of 19 after a small amount of carbs. I'm now pretty much totally reliant on insulin to keep my levels okay.

things changed. 

over the space of 2.5yrs the amount of meds I've needed on a daily basis has varied... I've had times when i was on nothing, others when i was just on tabs, and then just insulin.

when i started uni in Sept i was just on 2 types of insulin. 7 months later I'm on a whole lot more.

for the last month they've been testing me for asthma, I've wondered for a while whether Ive got it or not, but after a week of severe breathlessness with the cold weather last month i got myself checked out. then i saw the asthma nurse again on Fri and she says that by the sounds of things i am asthmatic, even if the peak flow charts aren't showing definite signs of it. 

so now my meds routine has been complicated further.... now when i get up i have to take my brown preventer inhaler, then with breakfast, lunch and dinner I've got to take my rapid insulin (and if im high or have a snack), then at 9pm I've got to take my background insulin, cholesterol tablet and another dose of the preventer inhaler... then if I'm breathless or exercising on top of all that, i need to take my blue inhaler... 

i know that there are people on a whole lot more meds than that, but to start uni on just the insulins and in less than a year to have that increased by an awful lot is pretty hard to take in... but i carry on every day trying to keep on top of it all.

things have changed a lot for me, but that's whats made me stronger and the person that i am today.

read between the lines

lets just say it to begin with. no beating around the bush.

yet again I'm failing at managing my diabetes.

i know its happened time and time again, and i know people are starting to think I'm doing this for attention with a 'poor me' type attitude. i know people think I'm not listening to their advice and just thinking I'm right all the time.... but I'm not.

I'm not doing this for attention, I'm not trying to get sympathy, I'm not ignoring peoples advice and i definitely don't think I'm right about everything.....

I'm just struggling an awful lot and sometimes i need to get stuff off my chest.

i don't need to hear about complications that will happen if i don't take care of myself, i don't need someone having a go, i don't need people telling me to man up and just get on with it, i just literally need someone to listen to me so i don't just keep bottling everything up inside, so i don't reach that dark place that i was in last year when i didn't have people to talk to about things that were happening.

i often don't talk about the stress I'm under, at home, at uni, at work, with diabetes..... sometimes for me it all just gets to be too much to think about and process all at once. this Easter holidays was a big example of that.

i worked pretty much every day, and even when i wasn't working i was doing work for uni (and stressing about the amount of work i had) or helping to look after my sisters. it didn't help that my mum hurt her hip really badly and couldn't drive or do much around the house meaning that after doing 8-10hr shifts at work i was coming home, helping to sort dinner, doing the washing, making sure my sisters were okay, doing any shopping that was needed and picking up prescriptions of my own and for my mum.... by the end of my 2week 'break' i was knackered.

and in the midst of all that stress, diabetes management was totally dropped. as in, i wasn't testing as much, i wasn't injecting too often or the same size doses i would normally have because work makes me hypo a lot so i figured i would rather be high than low as its less disrupting to driving etc and stress makes me higher anyway which didn't help... 

this time it wasn't me missing injections on purpose to rebel against diabetes, it wasn't me stopping testing and injecting just because i couldn't be bothered.... it was simply too much to be dealing with diabetes on top of everything else at the time, so i often just forgot. i found myself at times realising that it was 4pm and i hadn't tested since i got up, that's not on purpose, it was simply something that was forgotten because of how hectic things were.

i think what i need people to realise is that I'm only 19. i deal with a lot more than i should and at the end of the day i cant always cope with that. i know what i need to do and i know what the consequences are if i don't. so don't have a go at me, just listen, read between the lines of what i say and see what I'm actually going through.

trust

trust.

such a small word, but such a big issue for me. 

i find it so hard to trust people. for me, people need to show me that they will stick by me and help me when i need them to for me to trust them... they need to be consistent with what they do and show they care.

sometimes people don't realise how much of an issue it is for me to trust others. i try not to show it, but I'm so used to being let down over and over again by everyone that i now expect to be let down... it almost feels like i deserve it sometimes. I've built walls up for protection and i rarely let people in. i see it as a huge risk letting people see the absolute real me, it makes me feel too vulnerable. 

trust plays a huge part in my relationships with other people, there are only a few people that i trust enough to share what really goes on in my head with. people that i know wont just walk out of my life and screw me over or judge me with the stuff they know.

trusting doctors is another issue i have. the amount of times I've been let down by them in the last 2 1/2 yrs has just totally screwed up any ounce of belief i had in them. that makes it so difficult for me when it comes to getting help with diabetes....

trust is a huge thing to me, I'm getting there slowly with it and I'm learning to trust people more, but sometimes that's hard. sometimes my insecurities build up and the trust i have for people is questioned. i just need people to stand by me when that happens and help me through. 

labels

being labelled sucks. it really sucks.... but when you're labelled by a medical professional, it sucks even more. they are the people that are meant to know best, meant to believe what you say to them and help you sort it...

for a long time before getting a proper diagnosis i had loads of labels attached to my name by the professionals because of things i said to them or asked for. 

i was the fat one who brought diabetes onto themselves 

simply because i need to lose some weight

i was a liar

because i said about side effects that the tablets were giving me - ones that don't normally happen

i was uncooperative

because i said id had enough of trying different tablets with their different side effects and strict regimes

i was over dramatic

when i said that if i didn't go onto insulin to sort the high levels i would have to drop out of college - the constant highs meant my grades dropped low as i couldn't concentrate

i was the girl who 'wanted to inject'

because id had enough of constant high levels that tablets couldn't control - to me injecting 100 times a day would be better than the way things were

i was the one who 'should just accept my diagnosis' 

because i fought for genetic testing as i knew i wasn't type 2

i was the one who caused problems 

because i insisted on having things done in a way i wanted, to control diabetes in a suitable way

i was the over exaggerator 

because my log books showed loads of highs in the teens and twenties but my hba1c never went above 7.5% as my morning levels are always fine so lower it

i was the one who made things up

because i said my pancreas works some times and not others.... apparently this cant happen.... (to my consultant.... have you experienced a day in my shoes?!) 

it was really tough getting to a proper diagnosis. I'm not the kind of person to be bothered by labels.... of course they hurt, but i knew they weren't true, i knew i was doing the right thing by pushing for what i wanted. 

and I'm glad i did. I've got a proper diagnosis now. I've got a new consultant now who seems amazing (only met him once) I've got a new dsn now who is amazingly supportive and has helped so much in the few appointments I've had with her... 

sometimes you just need to push past what people think about you and focus on what you know is true. i fought these battles alone, it was hard and lots of tears were shed, but ultimately it was worth it. 

changing the perspective

life is about perspective, which things you focus on will mean the difference between being happy or not...

this morning i saw the dsn to get a few blood test results and change a few bits on my prescription.... nothing drastic

they were running late (as per usual) so that wasn't ideal as i was having to miss lectures to see her... 

then it started going wrong.... to start, she did my blood pressure.... now, considering that just going to the docs stresses me out, I've got a lot of things going on in my personal life that are stressing me out as well as uni, i wasn't surprised to see the result of it being high.... even after 3 different readings it was still waay above what it should be..... 

next she went through my blood results, cholesterol came back normal (yaay!) and the hba1c was 6.7% which although it is good.... i know that for me that represents a lot of highs (i was diagnosed with a a1c of 6.5%) but the thing she worried about most was that i might be hypoing? baring in mind I've only had a few hypos in the last few months where I've been skipping injections etc i was a tad confused..... 

then it all just got worse..... 

basically since last year I've not had a huge amount of hypo awareness, at night i wont feel hypos till i hit the 1's or 2's and during the day i don't really feel them till I'm in the 2's.... now, that's a big problem when it comes to driving.... to be able to keep your license you have to have good hypo awareness otherwise you're considered a danger on the roads (understandable) so after hearing that i don't feel hypos too well, my dsn has given me a warning that i may lose my license... warned me that she should be advising that I'm not meant to drive at all. I need my car, it plays a big part of my life.... if i lose my license then I'm gunna struggle big time. 

i came away from my appointment upset, fed up, hating diabetes for the problems it causes.... i came away focusing on all the negatives. 

but then that's when perspective comes into it.... you could say I've had a bad appointment because of the bad things that i had said to me.... or you could say that it was a good appointment because i had good blood results, i sorted some things out, i finally opened up to a health care professional that I'm struggling big time. 

perspective plays a big part in determining mood, so now instead of focusing on the negatives I'm gunna focus on those positive bits that will hopefully keep me going....

two days

I'm two days in to trying to control diabetes again and I'm struggling to keep going already...

my levels have been so much better.... Ive only seen one or two highs on my meter (i know I've been spiking after meals though) and my mood and concentration have been better than normal.... i mean yesterday i managed to concentrate not only through my lecture, but also enough to actually do some work in the afternoon too.... that's a big thing for me.... normally i can only do one or the other

but despite the good results, I'm still finding it really really hard to keep going... its just taking so much energy to carry on with the testing and injecting.

its hard to keep the motivation and keep positive. its hard to make sure i inject when, if I'm totally honest, I've had enough of needles and sticking them in my body. its hard to carry on smiling like I'm okay even though I'm totally exhausted. its hard to be how i normally am with friends and socialising when all i really wanna do is curl up in the corner and not say anything to anyone. its hard to put into words how this makes me feel, so far people around me don't know I've been struggling and i haven't said that I'm gunna need help or support or that I'm gunna need to be pushed to keep on top of this.... i still need to do that.

i really am determined to do it though this time, i really do need to get on top of it. i don't want complications in the future.... i don't wanna regret not controlling it now when I'm hooked up to a dialysis machine or legally blind in 30yrs time.... i don't wanna be wheelchair bound from multiple amputations meaning i cant be a proper mum to my children in the future. ultimately i don't wanna be a burden on anyone for any reason, especially not because i chose to ignore diabetes. 

I'm not just doing this for me anymore.... I'm doing this for the people i love and care about.