bring it on 2013

cant believe that its almost the end of 2012, this year has gone so fast but dragged on so much at the same time. so much has happened within the last year and i cant believe how far I've come and how much things have changed in just one year. 


this time last year i had just turned 18, i was only part of the way through my 2nd year at college and i was in the middle of interview dates for uni. diabetes wise, i had been on insulin for only a few months, i was finally seeing normal numbers and that meant that i was starting to feel a whole lot better. 

now, I'm 19, I've just completed my first semester at university (including a placement...) I've been on insulin for over a year now, and I've added another year of experience onto my time as a diabetic.

2012 has been a good and a bad year in many ways.... there have been more than a few tears shed and laughs had along the way. 

looking back, I've done so much this year that i never thought i would achieve.

I got offers from universities; i fought for the right treatment, tests and information that i needed from the doctors; i passed all of my exams with good grades (despite the teachers thinking i wouldn't do too well - they predicted DDD and i got BBC); i got into uni; I've become more independent and made some amazing new friends; i got a 2.1 in my first assignment at uni; i started a blog which seems to be going better than i first expected it to (always a bonus!); i received my provisional license, started driving and passed my test first time round!!

and lastly

i have FINALLY got an accurate diagnosis for my type of diabetes, that's a big thing for me, i have proved the doctors wrong. all of the times that they have told me to just accept that I'm t2 and that I'm just resisting treatment and making up excuses, all of the times they have made me feel like I'm all to blame for the situation I'm in. they were wrong, and it makes me so happy to think that i have fought them on every level to make them see that I'm telling the truth and that I'm not just resisting a label which they tried to force on me. it worries me that other people are in the same situation and just simply bow down to what they say just because they are the professionals and supposedly know best. the professionals can be wrong sometimes too! after all, they are only human...

I've had my fair share of bad times too, the times that i wonder whether its even worth trying anymore but they are short lived. i feel lucky to be part of an amazing online community, one that keeps me going, makes me smile and feels like family to me. i even managed to meet one of these amazing people this year, it was a totally new experience for me to sit down and have a meal with another diabetic where we both tested and injected together meaning that for once i wasn't alone in doing so. 

now I'm looking towards 2013 and I've still got so much to achieve, i want to pass my first year at uni with a decent percentage; i want to lose weight and start feeling better about myself and how i look; i want to finally get my levels sorted, no more constant highs or constant lows, just average levels, proper calculated doses of insulin rather than the guesses i take now; i want to volunteer on the children's camps that Diabetes UK run all over the country and lastly i want to raise more awareness of diabetes and how serious it can be :)

so here's to another year of new experiences and laughs along the way :)

readjusting

i still haven't got my head around what the consultant said... its almost like I've been diagnosed all over again.

well i have, but i haven't.... if that makes any sense at all.

when i was first diagnosed there was so much to get my head around.... the fact that this was gunna be with me for life, the fact that i would have to be more careful, have more check ups with docs, have holes in my fingers from testing, have endless amounts of meds to take.... it was a big thing.

now I've gotta get my head around the fact its genetic. the fact i could pass it on to my children. the fact that not many doctors know about mody so there isn't much information about how my diabetes will progress in the future. I've looked it up and I've found information saying that my beta cells will eventually fail all together. i can believe that as even within the last 2yrs they are definitely producing a lot less insulin now than they did to begin with.... but that does mean that eventually i will be totally dependent on insulin...

it all still feels like a dream really....

then I've had a rough few weeks... my levels have been almost constantly high running mainly between 10-25mmols.... that's a good thing in some respects as I'm starting to get my hypo awareness back, but its making me feel rubbish...

I've had enough of it all, its making me feel totally shit. people don't get it. they don't see the pain i get when i run high a lot, they don't see how thirsty, sick or grumpy it makes me, they don't see how totally defeated i feel when i cant get my levels back into range and keep them there for more than an hour. when i say I'm feeling rough or not in the mood i really do mean it. I'm not just making excuses...

basically I'm trying to get my head around an awful lot at the moment, so if i don't seem myself that could be why.... i apologise in advance for that.

Its not my fault

when your diagnosed with diabetes there is always a certain amount of blame that you lay on yourself. you ask yourself 'what if?' what if i didn't eat those sweets? what if i had exercised more? what if i had lived that perfect lifestyle that doctors recommend? would i still be diabetic? 

then, if your t1 your told its not your fault. it was your immune system destroying the insulin cells, theres nothing you could have done. they can then stop blaming themselves.

but if your t2 its a different story. you get told how if you eat better and lose weight and exercise more you'll magically be cured. your told that at the end of the day, you are completely to blame for getting diabetes as there are supposedly ways to prevent it. (just to add, i know that diet, weight and lack of exercise aren't always to blame with t2, but that is the general view on it from doctors) 

there have been so many times that i have had these things said to me. i was diagnosed as a t2 diabetic at the age of 16. did i bring that on myself? i have never eaten hugely unhealthily, although i am overweight, its never been by a huge amount and i do an average amount of exercise. so what is it exactly that i have done so wrong to get diabetes?

well today i got the answer. 

i didn't do anything wrong!!! today i found out that the tests i had done in July have confirmed that i have maturity onset diabetes of the young (mody - mody 3 to be precise) today i found out that despite what the doctors have told me for the last 2yrs, there is nothing i could have done to prevent diabetes invading my body as it was my genes that caused it. today i can finally stop blaming myself for all of this mess. 

but its bitter sweet. 

mody is a genetic disorder. it is a dominant gene which means that all of my children will each have a 50% chance of inheriting it too, even if my partner doesn't carry the gene. 50%. that's a big gamble. i would hate myself if i ever passed on that gene to my children. but then, my siblings also have a 50% chance of already having that gene in their body. a 50% chance that diabetes is waiting to claim their bodies too. 

but we are now one step further on. i now know what it is I've got and can be treated properly. no more metformin, no more doctors trying to force the t2 treatments on me. and my siblings can now be monitored too. hopefully with that in place we can catch diabetes early if it happens and treat it in the right way from the start. 

when i saw the consultant today i could tell he genuinely wanted to help. he told me about the measures that can be put in place for siblings to be tested regularly to keep an eye out for diabetes. he told me about a tablet that i can start if i want instead of the insulin which is taken with meals but acts more like insulin than gliclazide etc (it isn't an insulin tablet, it simply acts the same amount of time and is absorbed in the same amount of  time as rapid insulin but means no injections).... he made me feel like i had some control over what is going on with my diabetes and he has said that i have control over whether i start on this tablet or not.... I've decided against it for now, but the option is always there if i want it.... 

its funny how something as small as an accurate diagnosis can change things so much. it wasn't my fault, i now know that.

today is the first day of the rest of my life

change

as I've started uni I've also swapped diabetes team to one closer to where i am now. tomorrow is going to be the first time i see my new consultant. 

I'm terrified. 

i hate going to see the consultant anyway, but this time its almost worse. this time i don't know what to expect. this time I've got to go back over everything I've fought for over the last 2yrs. this time i just want to get some help.

over the last 2yrs i have got so used to doing it all myself that its now difficult to ask for and accept help from the professionals. but now i need help. i need help sorting these levels out so that i can start feeling more normal... 

today i uploaded all the results from my meter.... this is what the graph looks like :/

now. that's not good at all. see that grey strip? that's where all the dots are meant to be.... stats wise, only 26% of my readings are in target (4-9mmols) and my average sugar level is 11.9. 

some of it is my fault. its my fault for not taking insulin for a while... its my fault for not carb counting like i should.,..... but theres some of this that's not my fault, like the times that I've taken more than enough insulin for a meal, but my levels are still high afterwards. like the times i have a small snack (~10g of carbs) and my levels shoot over 10mmols. that's not my fault

so tomorrow i need to talk about this to the consultant. i need a solution for whats going on. i need to tell them how I'm not coping with it particularly well (whether this happens or not is a little dodgy, but it needs to be done) but most of all i need to be able to trust them to help and support me. i need to lower the walls I've surrounded myself with regarding diabetes and let them see whats going on.

I'm nervous, but hopefully this will be the first step towards a positive change in my diabetes care. 

the blob tree - time to talk feelings

ok, so last week in lectures we were learning about ways to encourage children to talk about their emotions and how they are feeling. one of the ways that was suggested was to use this blob tree. the idea is that the children colour in the blob people depending on how they feel and then they can explain why certain ones are coloured in. something about it detaching the feelings from the child so its easier to talk about. 

but when i looked at it i could relate almost every single one to dealing with diabetes and how I've been feeling recently.

sometimes i feel like ignoring diabetes, turning my back on it and just leaving it alone like the blob person who is facing the other way. 

sometimes I'm at the top looking down, pleased with how well I've done with keeping my sugar levels in range.

sometimes i need a helping hand to get started with something like with carb counting or a new treatment plan. bit like getting a leg up from the professionals. 

sometimes i feel like I'm falling hard and fast when things go wrong. 

sometimes i feel like I'm balancing and it wont take much to knock me off the edge like the blob on the platform. 

sometimes i feel like I'm stuck half way, clinging on hoping that it will be enough to get through.

sometimes I'm angry with diabetes. angry with what it does to me. angry that its me and not someone else. 

sometimes i feel like I'm part of a team, dealing with it together and actually getting somewhere

sometimes i need a friend or a friend needs me and we sit and chat and work it out between us. 

and finally sometimes i just cant be bothered. like the blob laying down on the floor i just think its too much effort to even think about dealing with diabetes. i feel alone and like theres not much point. a kind of 'ill do it tomorrow' kind of attitude.

but diabetes cant be left until tomorrow. tomorrow might be a day to late to prevent the complications. it might be a day to late to stop the permanent damage that high sugar levels do to my body. 

i think the blob tree is a nice way of talking. i like how relatable the feelings are. i might be an adult now, but I'm still a kid at heart when it comes to talking feelings.

moving through the darkness

its all been a bit up and down these last few weeks... in life and in my diabetes management....


taking insulin has been a bit on and off.... one minute I'm doing it all then the next I'm not at all. it has depended on my mood and how much stress I'm under at the time.... I've started to notice that when i cant control whats going on in my life or things are particularly bad, i take it out on my diabetes as its one thing that i have total control over.... its not good that i do this, and i know i need to talk to someone to try and get out of this loop as its doing me so much harm. but that's hard and I'm not quite ready yet. 

i saw the dietitian yesterday to do carb counting and yet again I've been left to sort myself out by the professionals. she started off by going through everything like I'm stupid.... then i pointed out that I'm doing a maths degree so can do the maths side of things then that was it. she just gave me a few booklets, asked if i had any questions and left me to it.... no saying that i could ring if i needed help or a follow up appointment to see how i get on. i left there and burst into tears on the way home. right now i need help, i asked for support with carb counting and i didn't really get it. yet again I've been left to sort it out when i really don't know what to do. 

so I've given up. I've given up with professionals and trying to get help. I've given up trying to control my levels. I've given up with getting angry when diabetes when it doesn't play fair. I've given up with fighting for supplies that i need. i just don't care anymore. 

but still. i don't get a choice. i just get on with it as per usual. maybe one day things will get easier, but until then i will just have to keep moving through the darkness that is my life

D-kid sibling day

across blogs today people are dedicating posts to the siblings of diabetics. i know im not a d-kid being 18 now, but they are still my siblings and they still deal with it when im home from uni.... so here it goes...

the siblings tend to be the forgotten victims of diabetes. i mean, how hard must it be to have to live with a disease that you don't even have?

so today i am dedicating my post to 2 of my siblings who have put up with a lot of rubbish that diabetes throws my way. they don't complain and they have had responsibility put on their shoulders for a disease that isn't even theirs.

firstly Tabby, shes 13 and is one of my biggest supports. she sits and listens when i explain about diabetes to her, trying to absorb and remember any vital information that might be important one day. she advocates when people say something wrong about diabetes. i know that shes told her teacher that they were wrong about diabetes on at least one occasion. shes told me that when we go out somewhere together she is constantly thinking about what she would do if something happens to me, shes mentioned that she worries about the possibility of getting diabetes one day herself and has even said that she would have my diabetes for me if she could. she gets me lucozade or food when I'm low and puts up with a lot of rubbish when I'm high and irritable. but shes so much more. shes my cheerer upper when things aren't so great, her singing and dancing around the house can never fail to make me smile. shes the bank drainer who always gets what she wants when i see her. shes the cinema buddy who comes and watches the kids films when they come out and shes the singing companion so i don't look like such an idiot with the music blaring and me singing loudly while i zoom down the dual carriage way. shes amazing at drama and dance and is almost always out with friends (she has more of a social life than me sometimes)

then theres Fiona, shes 5 and acts so grown up sometimes it makes me sad. she was 3 when i was diagnosed and since the start she has absorbed so much information about diabetes that i really wish she didn't need to know. shes learnt how to test my levels and what my insulin is (or prickly medicine as she calls it) she gives me hugs when I'm upset and she never fails to get me either insulin or food if i need it. she knows to tell someone if i collapse and she has learnt how to call 999. she tells me all about my medical id and can read all the words on the back of it. she tells me that needles don't hurt and never forgets to mention how brave she was when she had her flu jab. on top of that she knows about how she has asthma and how to use her inhaler. she knows that she needs to have it when she coughs lots and if her chest feels funny. in short, shes a doctor in the making.... but theres more to her than the medical knowledge. she is the one that can talk for England and switches topics so fast that you get lost in her conversation. she is the one that knows the words from films off by heart because she watches them that often. she wants everything that the adverts on TV show just like any other 5yr old. she starts just about every sentence to me with "Tara, did you know...." and she loves school. shes a drama queen and so confident that we reckon that one day she will end up on stage.

i love my siblings. diabetes plays a big part in their lives but they don't care, they just get on with it and treat me just the same. i have always said that if me having diabetes saved them from having it too then i would never get rid of it or complain. but it doesn't work that way. if one day they get it too then we will deal with it but for now they are simply amazing for dealing with me and my d.

a yo yo kind of day

there are the days with diabetes when everything goes right. the days that make you think you finally have it figured out..... the days that leave you smiling and saying that it isn't that bad....

then there are days like today. days which are hell. days which you have no idea whats going on or the best way to deal with it. days which just leave you wanting to give up.

it all kinda started last night. i had insulin for dinner etc but was still high at midnight and because of that i couldn't concentrate while i was finishing my lesson planning. i took a correction dose of insulin and thought nothing more of it. 1.30am came and i tested before i slept.... 4.3.... treated like a hypo with orange juice and some long acting carbs thinking i would be fine by morning.

2.45am. woke to a sugar level of 2.9. not good. got up and treated the hypo then fell asleep again..... morning comes round and I'm sitting at 10.8. not impressed.

i was assessed teaching a lesson this morning but with high sugar levels and very little sleep thrown in the mix i wasn't exactly in the best frame of mind.

lunch time comes... still 10.3, take insulin for food plus correction and get on with it..

home time. 17.7?!?! whats happened there? obviously the insulin at lunch didn't touch the carbs i ate..... dodgy insulin?

so i changed the cartridge when i got home and took a correction dose...

almost 2hrs later I've shot down to 6.7. that's not good either, drop of 11mmols in 2hrs isn't ideal :/

dinner eaten and as i still had quite a bit of insulin on board i didn't take any with my dinner as didn't want to risk a hypo.

now sat at 16.8. I've had enough. i feel rubbish and i hate diabetes big time today for making me feel like this. for making my levels yo yo up and down when i just wanted to be able to get on with things. its hard though, nobody could see what was happening. nobody saw that my levels were high or dropping causing me to feel rubbishy and grumpy. just another reminder that this is for life and it most definitely is invisible.

time to man up and sort it out.

sometimes a break is all it takes to get back on track. sometimes it's essential to be able to cope with a situation and to see it in a new light.

so a break is what i took.

for the last week I've pretty much taken a complete break from diabetes. I've not thought about it, I've not tested as much and I've not been taking insulin (bad idea, but as i still produce some insulin myself so it wasn't a disaster) yeah I've felt rubbish cos I've done this... and yeah I've seen some high sugar levels, but the physical and mental break from diabetes has done me the world of good....

I'm now ready to start again, I'm ready to have another go at doing things like i should....

I've slipped, stumbled and got back up again, tears have been shed and wiped away and my brain has fought the battle and won. things can only get better.... i hope..... but we will see, diabetes has a nasty habit of kicking you back down when you find your feet again.

I've been thinking.... and I've come to the conclusion that maybe its time to talk to my doc about how I'm feeling and how i haven't been coping..... this sort of thing has happened too many times in the last 3 months and i cant keep going on like this. its gunna be a big step gigantic leap out of my comfort zone but i think it needs to be done. i need my head sorted to be able to get through the stresses the next 3 years is going to bring.

i guess its time to man up and get on with it though.... sort myself out and get going with my life. only i can do it and its only me that will suffer the consequences....

the brain battle

I've been sat here for a while.... I've had enough. its that simple. i just cant do it anymore....

injections. I'm fed up with injections. fed up with looking like a druggie all the time. fed up of the questions, the looks, the rubbish that comes with taking injectable medicine.

my levels are high.... I've got traces of ketones and i still cant do it. i still cant bring myself to inject again. i know i need to, i know that I'm risking complications, i know that at the end of the day I'm now responsible for my health and whether i do my injections or not, but theres something stopping me.....

I've been looking at my insulin for about 5mins now. just looking. trying to psych myself up to actually take some to get my levels back down from the 20.6 that they are at the moment. theres a fight taking place in my brain. i know i need some but i don't want it.

right now i want to give it all up. i want a new fully functioning pancreas again. i want to be normal again. i want to be able to do things without worrying. i want to be able to live without being ill all the time or feeling rubbish. i want to not have to see the doctors unless I'm actually ill, no more jabs, no more blood tests, just the visits for when i actually need to see them. i want to feel tired because i was up all night, not because my levels are high and i don't want to feel shaky ever again. i just simply want a cure. one for me and all the other people dealing with this shitty disease every. single. day.

but no one sees it. nobody has noticed my high levels. no one has noticed the lack of insulin I've been taking..... diabetes really is invisible in my every day life....

i don't need lectures on the importance of taking insulin. i know. I've got people telling me that already. people who understand and have been in my situation before.... its just, I'm bored of fighting now, its just too much to deal with.

please don't judge. i just need to say whats going on in my head, put it in the open so i can try and sort it out so it doesn't happen anymore.....

time for a break

to start with, im fully aware that ive completely failed this blog month thing... ive had a bit of a tough week and i just dont have the energy to do any of it. not the blog, not facebook and not twitter either...

i just cant be bothered with any of it.

im exhausted from being on placement or in lectures since half term... but then i didnt really get a break then either as i was working the whole week pretty much. my levels havent been too bad, but ive been stressed out big time. life has just become tough and i just cant be dealing with any more right now.

ive got an essay due in. one thats not finished yet because i cant concentrate. one that i had to get an extention for that i didnt want simply because i havent been able to focus for long enough to do it. that made me feel shit. im not one to ask for help even when im desperate for it. im just not that sort of person, but for this i had to. and it makes me feel like im cheating and using diabetes as an excuse for being lazy when its really not like that at all.

and it sounds harsh. but ive simply had enough of supporting others.... not just other diabetics, but family and everyone else too... theres only one of me, and many of them.... i just need a break.

then i feel ignored. there are people that i usually talk to almost every day or at least when they are available that i havent had a proper conversation with in ages. you know, i wanted to stay friends and keep talking even just for a little every now and then...

so i think im gunna take a break. one from my blog and facebook groups... one from talking about diabetes all the time to raise awareness. its going to become a little bit inside of me, one that i hide from the outside world so i dont get any more abuse from random people. (shout out to the person on twitter who said im diabetic cos i eat too much junk food and sugar.... clever one right there,.... not.)  i dont know how long ill take a break for... maybe a day or even a few weeks.... we will see how things go...

diabetes awareness month - invisible vs visible

today the prompt was invisible illnesses vs visible ones.... so i decided to edit and repost this from a few months back.... 


So, I'm walking down the road and you see me. could you tell that I'm diabetic? in that moment would you be able to tell that one of my internal organs isn't working properly? I'm guessing that the answer is no.... you wouldn't. you might see the flushed cheeks of a high or the unsteadiness of a low but you wouldn't see diabetes.

in some respects i feel very lucky to have an illness which cant be seen. it means i can hide it so I'm not discriminated against. it means that i can blend in and act normally as if I'm just like everyone else.

but sometimes it really sucks that people cant see diabetes. it really sucks that people think that diabetes really isn't serious because they cant see the effects physically on my body.

thing is, diabetes does have a huge effect on my body. physically and mentally. when my sugar levels go high or low i get physical symptoms, ones that maybe don't look hugely disabling, but they are physical symptoms and they suck. i also get symptoms which affect me mentally. like when I'm high i become irritable and emotional and when I'm low i get panicky.

diabetes also affects me long term though. diabetes could mean that i lose my limbs, eyesight and kidneys. it could make me infertile. it could give me heart problems. and it could kill me. diabetes also increases the risk of having things like depression, the stress of dealing with a chronic illness every day does really take it out of you. it can get you really down, down to a point where you need professional help.

so yeah, you may not be able to see I'm diabetic, not at first glance anyway.... you probably would if you saw me testing or injecting, you might if you saw my medical id on my wrist, ankle or my keys. but most likely you wouldn't know that I'm diabetic unless i told you.

visible disabilities are different, people can sympathise more, they are more accomodating... there are more previsions in place to help them and make sure they have every opportunity that someone else does. i know that doesnt make it easier to deal with or make it any better, but just having the understanding means that sometimes its a little more simple to explain. at the end of the day, both visible and invisible illnesses suck and arent easy to have... they just have different difficulties.

so just think, even if you cant see what I'm dealing with, even if you cant tell that i have a chronic illness, just be aware. be aware that its still serious, just as serious as illnesses and disabilities that you can see.

diabetes awareness month - dear diabetes

i know i didn't post yesterday.... was having a bad day, so heres toady's one instead.... the prompt was 'a letter to your health' so that's what I've done

dear diabetes.

why do you play so many games? I've had it with all of them. the highs, the lows, the making me feel different to everyone else.

why cant you just play fair for one day? this constant struggle is starting to get to me. screw that. it HAS got to me, it gets to me every. single. day. i try not to show it to others, but it really does. your usually the only thing that has the power to reduce me to tears in a matter of seconds. your the only thing that can ruin my entire day without even trying. you suck.

I'm exhausted. the hypo card that you played the other night wasn't fair. i need my sleep and you didn't care. I'm still tired from that, i don't have the time to catch up on sleep. and then you give me high levels and it just makes me even worse. sometimes i physically cant keep my eyes open I'm so tired.

and you make me worry. i worry endlessly about whats happening to my body, whether I'm ok to drive or eat something, whether I'm going to be able to concentrate through an afternoon, whether i have enough supplies and when my next doctors appointment is. i cant take much more of it.

you take so much effort to deal with every day. this whole checking sugar levels, the counting carbs, the working out insulin doses, the pretending that everythings fine when it really isn't. it takes effort and i don't know how much longer i can last.

you know, i really hate the way you make me stick out, the way that you make me so incredibly different to everyone else, the way that you make people perceive me. i hated how you made me feel ashamed of being diabetic when i went to visit a friend last weekend just because i had to have insulin. i hate how i have to have so many doctors appointments to sort you, appointments that no one else has to make, the ones that i have to fit around uni and take up a huge amount of time. i hate how i have to inject at dinner time meaning I'm often one of the last to finish eating. its no fun you know.

so basically I've had enough. i need a break, a break that I'm not going to get because your here to stay. but please, just play a little more fair, let me know whats going on with some warning..... who am i kidding, i know you wont so theres no point asking.

anyway. just to sum up, i really do hate you and your games but theres not much i can do.
so yeah,
see you around..

diabetes awareness month - this is real life

its dark, definitely not morning yet. your semi awake and you know theres something wrong. you start feeling hot then cold and your so hungry that if feels like you havent eaten in days.
 
you reach out for your phone to see the time. its 1am.
 
your a little shaky, your eyes aren't working the way they should. you swing your legs around and sit up in bed. you try to remember where you left your glucose monitor before you slept, its the other side of the room.
 
standing up is an effort, your legs feel like they are gunna give way any moment, your vision is going too, black patches start to take over where you start looking, but you have to move, you need to test your levels.
 
you get a strip, put it in the meter, stab your finger and test.
 
the countdown seems to take longer than normal.
 
1.6mmols
 
shit.
 
that's not great, not in the slightest. you start to panic a little, wheres the lucozade? and wheres some food to eat to get me back to normal, and fast.....
 
gulping down the lucozade helps, but now your sat down again its an effort to get back up to find some proper food. you do it though. you get food and you eat before rechecking your sugar levels, and falling back into bed.
 
its taken 30mins to do. and you know that now your going to feel rubbish later. you know now that you will wake up to high levels because you over treated the low sugar level. in that moment it doesn't matter, all that matters is that its over.
 
 
as it is diabetes awareness month i thought i would share what last night felt like when i woke up to a sugar level of 1.6.
considering sugar levels are meant to stay between 4-7mmols and anything below 4 is considered dangerous, last night really wasnt ideal.

for me this happens in real life. its not nice and it never fails to ruin the next day for me. it terrifies me every time it happens because at uni i am alone in dealing with it. there are no other people to see whats going on and help me out as they are all asleep like i should have been.
this morning i woke up to a sugar level of 10.8 thanks to over treating the hypo in the night. it meant that my first day of work experience didn't start well. it meant that i wasn't the best i could have been in the classroom today. and most of all it meant that i didn't necessarily make the best first impression. that sucked.

but it happens, and you move on. im just grateful that i was able to wake up and treat it. hypos are dangerous and can be fatal. people sometimes dont realise the seriousness of them.

diabetes awareness month - 3 things

todays prompt was about what im thankful for, excited about and inspired by....

firstly, im thankful for the nhs.
i know for sure that if they werent there i wouldnt be able to afford the treatment and care that i get now. as i found out a few weeks ago, insulin on a private prescription costs £8 per cartridge. considering one cartridge only lasts about a week thats £416 per year on one type of insulin alone (then theres the other type of insulin, test strips, needles, lancets, meter and lancing device, insulin pens etc etc) basically its pretty expensive. the nhs pays for everything for me so i dont have to worry about whether i will be able to afford everything every month. on top of that theres the doctors appointments, blood tests, eye and foot checks and specialist consultant appointments that i get to keep me healthy free of charge (well, they are at the moment as i dont pay taxes yet)

next.... im excited about having a new consultant and diabetes team, so far the diabetic nurse is lovely and im really looking forward to being under her care for the next 3yrs at least, she is actually amazing... and a new consultant means a new start, a fresh pair of eyes to look at my case and see whats going on. its a new opportunity to finally get my treatment and diagnosis sorted out.

and finally. im inspired by the diabetic children who manage to get through every day with a smile on their faces. sure they have their bad days like everyone else, but they get through it and they deal with so much when they shouldnt have to. they are my inspiration to get through each day making sure i manage my diabetes properly (or at least almost properly) because surely if they can do it then i can to?

diabetes awareness month - whats in my D bag?

ok, todays prompt was about what I carry around every day with me.... so instead of writing about that i thought it would be easier to show you with pictures :)

so here is my D bag.... i use a make up bag to carry everything around as its got more room than the normal meter cases and means i can keep everything together :)



and the stuff inside.....

• 2 insulin pens (novorapid = red and levemir = blue)
• glucose meter
• test strips
• finger stabber
• pot to hold all of my used needles, strips and lancets 
• needles
• lancets
• ketone meter
• blood ketone strips
• diabetic id (card with contact details and hypo symptoms)

In addition to this i also carry around some form of sugar.... normally lucozade or glucotabs for hypos (low blood sugars)

thats what i carry around every day with me in my bag so that im prepared for anything that happens. diabetes doesnt exactly come light.

diabetes awareness month - convos with the consultant

I've blogged about my appointments with the consultant on several occasions, but I've never really gone into detail about what those appointments actually entail.

my trips to the consultant always start a week before the actual appointment, i always need bloods taken to check my hba1c (average sugar level), cholesterol, kidneys and thyroid sometimes i have a few more things checked but this is the usual. having blood taken is always a bit of a problem... apparently i have 'deep veins' which means they have to dig around a bit... not nice and particularly uncomfortable.

then the day of the appointment... i dread it normally for the entire day but so far i have never missed an appointment despite not wanting to go.

i get there and check in.... sit in one of the chairs in the waiting room and play spot the diabetic while i wait. its a good game if i say so myself :) im pretty much always the youngest in the waiting room and rarely have others there close to my age.... sucks a little really, would be nice to meet other diabetics my age where i live.

next i get called through by the nurses to have my weight and blood pressure checked.... they are lovely people and always try to make me feel relaxed...

back to the waiting room i go. this is when the nerves really kick in for me,.... i run through what i need to say in my head so i dont go away with questions, my sugar levels shoot up cos im nervous and i shake like mad waiting for my turn with the consultant.

now into the consultants room....
he has one of those cheesy smiles that always makes me feel just a tad more nervous. asks how im doing then turns to his pages of info on me....

consultant: so how have your levels been?
me: umm..... they havent been too bad, had quite a few hypos though.
consultant: ok, how much insulin have you been taking?
me: about 7-10units of novorapid per meal depending on its size...
consultant: thats not very much, maybe we should see if we could get you off of the insulin and onto tablets again. insulin is such a hassle, i think you would have a better quality of life with the tablets.
me: *starting to panic* no, i dont want to go on the tablets again, ive already tried to come off insulin and i was just high all the time, plus the side effects of the tablets were awful cant i just stay on insulin? i really dont mind injecting..
consultant: well.... your having a lot of hypos on insulin.... and your hba1c is at 5.8% which is very low so i think that your having hypos without knowing..... have we tried you on *yet another tablets name* yet?
me: yeah.... i was on that one last summer and it didnt work..... and ive been on *lists off all the tablets ive tried* and they didnt work either. insulin is the only thing that has kept my numbers in range..... i want to stay on it....

and it continues....
my consultant has tried to get me off of insulin since i started on it which i hate. it makes me feel like im walking on eggshells when i go and see him, hoping that he will allow me to continue on a treatment which actually works. i dont like injecting, but its a whole lot better than the tablets and their side effects.

at my last appointment we had a conversation similar to that above and he has finally agreed that i can stay on insulin for the time being. theres a possibility that may change, but its one less thing for me to worry about. soon i wil be seeing a new consultant though, so the battles may start again, im hoping this one is more understanding and listens to me a little more though.

diabetes awareness month - the weirdest thing about my health

the weirdest thing about my health?

well that's fairly simple seeing as i have a weird type of diabetes.

basically my pancreas works part time (hence the name of the blog) and yeah i know that sounds impossible.... i mean, surely it either works all of the time or none of the time? but no. for me my pancreas works nights only.... or it works if my sugar levels go over 20mmols. my consultant says that's impossible... yet another thing that I'm making up... but i promise I'm not.

i can sit all day in the teens, go to bed on a 14mmol reading and wake up to a beautiful 5 on my meter. why i can do that i don't know, but it happens. i can see what other diabetics are thinking... why complain about something like that, i would love to wake up to great readings every morning? but then, it makes basal doses (insulin which keeps my sugar levels constant) really hard to figure out.. and it affects my hba1c (average sugar levels over 3months) I've never had a hba1c over 7.5% even when my levels were constantly above 10 because of my morning readings lowering it.... not a bad thing, but then it means my consultant doesn't believe that my levels have been that high... he thinks that I'm making it up or exaggerating how high my levels have been.

then theres the part where my pancreas suddenly works if my levels go above 20mmols.... i can test and be like 20.2... then an hour later be 13.4 without taking any insulin or having active insulin in my system.... yet again, its not necessarily a bad thing, but it makes correction doses more difficult as i don't know when or if my pancreas will kick out insulin by itself meaning i don't need to inject extra.

at the moment I'm waiting for test results to come back to tell me if I have a fairly rare form of diabetes called MODY (maturity onset diabetes of the young) with this form there are several different types under the one heading of MODY. i fit several of the characteristics of MODY such as the pancreas working when levels get really high and the sensitivity I've had to different tablets. If i test positive for this there will be other things to think about as i get older as its a genetic condition, but that's for the future :)

at the end of the day i know that my health is fairly weird, but that doesn't make it any less real or problematic.

diabetes awareness month -- why I write about my health

November is diabetes awareness month... so I'm taking part in the national health blog post month. 30 posts in 30 days.... lets see how i do

I've only been blogging a couple of months, but i have wanted to blog for about a year now. i don't know what stopped me, but in the end i started so i guess that's all that matters :)

So why do I blog?

for me it is all about raising awareness of what i go through on a daily basis. a way of communicating to others just how tough it can be. As i don't have a typical type of diabetes (I'm not type 1 or type 2) i go through some different challenges to other diabetics. I've had more fights with my diabetes team about how i should manage my diabetes, I've had problems with carb counting and correction doses due to me producing some insulin and my biggest challenge of all has been getting people to believe me.

that's what gets me on here and other diabetes support sites. i want to find others like myself.... and i have, I've found another person who faces a lot of the same challenges as i do which helps a great deal knowing I'm not alone and i have found others who, although may not have the same challenges, understand what I'm going through daily and are a huge support when things go wrong.

I also wanted to show people that they aren't alone in the struggles that they have. they aren't the only ones that have rubbish diabetes teams or have to fight for what they need. they aren't the only ones who don't fit into the type 1 or type 2 categories. if I'd had that when i was diagnosed i think that things could have been a lot easier for me to deal with.

so... i know that blogging maybe isn't the only way i could reach out to other diabetics. i could (and do) use twitter or facebook. but my problem with those is that it doesn't reach a large enough audience unless you connect with the right people and they are just too personal. blogging allows me to be honest about how I'm feeling and what I'm going through without worrying about whether people will judge me or not. its almost like a public diary, others can read it, but its detached from me. its not linked to me and my daily life directly. this blog is focused on my diabetes whereas my facebook and twitter accounts aren't... i may talk about diabetes from time to time but that's it.... they are for me mainly, not diabetes.

so that's why i blog about my health. I'm here to raise awareness and show others they aren't alone :)

you cant always reach the stars

as i grew up i was always told that i could be anything that i wanted to be and do anything i wanted to do as long as i tried. i believed that with all my heart. obviously as i grew i had dreams and ambitions, i wanted to be a doctor or in the army or a paramedic or a teacher or a person on TV.... the list was endless and it changed day to day on occasions.

when i got a little older i realised that there was never a chance of me being some things like an actress or a world famous dancer. i simply didn't have the skills or background to do these things.... but still, i had a whole world full of opportunities.

in the end i decided i wanted to be a doctor of some kind. either in the army or as a paediatrician. throughout secondary school i was told that this was more than possible and that i should keep going for what i wanted.

army medic became my career of choice.... i just needed to get fit enough and i would be sorted. it was gunna be hard work, but it would be worth it because i wanted it that much.

then i was diagnosed.

soon after i realised that i wasn't going to be able to be in the army anymore because of diabetes. i was devastated. it was the first of many blows that the d dealt me in aspects other than my actual health.

another thing i have always wanted to do since i was 8 or 9 was give blood. i wanted to help people who needed those life saving blood transfusions. diabetes stopped that 3 months before i was finally able to.

Ive been on the organ donor register since i was 13.... i signed up for donating all my organs to people who needed them. now the reality is that diabetes could destroy my kidneys, eyes and heart (and the pancreas obviously) so i wont be able to donate them. yeah i can donate the rest of my organs, but i feel like a bit of a let down for not being able to donate everything i signed up for.

then there was becoming a bone marrow donor. to do that you have to be 18. I've waited since i was 14 to do that.... but no. diabetes has yet again stopped that from happening. i think for me this and the blood donating were the hardest blows. watching all your friends sporting huge bruises from donating that week and telling you which colour card they're on for donating so much killed me inside. i wanted to do that. i wanted to be the one in their situation. diabetes sucked for stopping me. and the bone marrow? they are just so short of donors that to not be able to despite desperately wanting to just sucks. there are so many people who can but wont when i would but cant. 

basically. I've learnt that you cant always reach the stars and get where you want to be just because you try. things chronic illnesses get in the way and that sucks. but its just part of life so you just need to get over it and move on. I've found a career that i will enjoy, it may not be the one i always wanted, but its a decent one all the same. and i now encourage people to become donors for everything, even if i cant, if i can get someone else to do it surely that's just as good? well. that's what i like to tell myself anyway.

lost

ok. so recently i have been running high almost constantly. i mean. i start off with normal numbers and then as soon as I've eaten (whether i take insulin or not) i end up sitting in the mid teens for the rest of the day unless i literally take a huge dose of insulin then i come back down.....

i don't know whats going on or whats causing it. its a complete mystery. and its completely unusual for me to be like this for this long. it could be stress, or dodgy insulin or illness or miscalculating insulin and carbs or just about anything else. or maybe all of the above... its completely possible.

I've never realised just how bad my diabetes care and education has been though until this week. I've always been quite comfortable thinking i understood what i needed to do if i needed to change anything (although, Ive come to realise, i didn't understand, it was just that i didn't need to really do much before now to affect my levels dramatically and sort any blips)

but then this week I've looked at what I'm dealing with.....

• high levels through the day.
• rapid on a ratio 1u:8g.
• correction factor of about 1u per 2.5mmols.
• levemir of 10u per day taken at night.
• lowish levels first thing in the morning.

to any person without diabetes that is a load of absolute rubbish.... i mean, that's a fair amount of random stuff really unless you know what I'm going on about. but i looked at that and was confused too.... i mean. where do i start making adjustments? what do i adjust them to? and will it work?

being in the middle of transitioning from one d team to another also means that i don't actually have anyone to get advise off of at the moment. I'm seeing a dsn on Thursday, but does that mean i have to deal with this for another week before i actually get anything sorted? I'm not sure if i can do this for that long. its wearing me out.

also. the longer that I'm running high, the more my body is getting used to it. the more my body gets used to the highs, the more i feel hypo at normal levels. that isn't good. not at all..... today i had to drive somewhere and my levels were 5.6 when i left. i felt shaky though so had a couple of glucose tabs to sort it... by the time i got there i was having full blown hypo symptoms (shaking badly, brain fogginess, hunger) so i checked again.... 5.2? i was so confused by this.... but i just treated it as a low with half a bottle of normal coke... i figured i would rather be high and feel normal than be normal and feel low....

this is the thing with diabetes, when what you do works, all is good. you feel smart for sorting it. then it changes and your left in the midst of confusion and random blood sugars trying to figure out which way to turn next. and that's where i am. I'm lost and don't know what to do now...

yet another 6 test strips....

there are times that i look at my life with diabetes and all that happens with it. i look at the day to day happenings and wonder how i got to where i am.

how did i get to the point where mutilated finger tips didn't bother me anymore?
how did i get to the point where needles and strips lying around was normal?
how did i get to the point where a load of numbers can affect how i think of myself?

i guess i wont ever really know. it just kind of happened. the normality of diabetes just crept up and took over my brain when i wasn't looking.... bit like the moment my pancreas decided to stop working properly i guess.....

but there are times i think about it. times when i collect yet another prescription or book yet another blood test or appointment with the dsn. times when i look at the pile of strips left from that days tests and know that each one of those tiny pieces of plastic represents a number which my day was made of.

times like this really make me think. i mean, when i pick up that prescription after 2weeks since the last one and i think..... that's 200 stabs of the finger. 200 different numbers which fit together to make part of my day..... that's another 5 cartridges of insulin which contain 1500u. that's another 1500u that I've taken to keep my sugar levels in check (or not so in check as they've been recently).

that's a tough thing to think. its tough thinking how much things have changed and how quickly time moves. how fast you learn to adapt to a new way of life. but that's just it. things change constantly and we adapt. its the way life is and nothing is going to stop that.

so we live and learn.... things change and we just bump along with the waves doing what we need to do to get by.

my mask

have you ever felt like life is just one big show and your simply acting out a part in it? putting on a mask to show the people watching what they want to see? i have, in fact. screw that. i still do.

some days aren't like that at all. some days i can feel the 'real' me coming out, doing everything that i would love to say or do with a genuine smile on my face. but that's the problem. its only some days. other days i slip and slide, struggling to stand on a patch of ice that's caught me unaware.... its these days I have to put a mask on when I'm around others so that everything looks ok when on the inside I'm just crumbling, crying, wanting to reach out but not knowing how.

i hate that i do that. but then from past experiences people just don't care. they see that your sad a lot and just back away slowly not wanting to get involved in the problems that are so obviously there, not realising that doing that makes the situation worse, makes it harder for me to trust others, harder for me to let them into my head and making me slip on that mask more and more.

i wear my mask far too often. often enough for me to believe that its the real me, the me that doesn't have a care in the world, but then it slips. it slips off suddenly and I'm left, stuck like a deer caught in headlights, staring horrified at whats underneath. I'm left looking at the mess that my life really is and has been.

people say that you can just move on, leave the past in the past and just forget about it. but its not that simple, especially when the past bleeds into the present and future, when something triggers a memory of the rubbish you've tried to leave behind and rips open the wounds from before so it feels raw again.

i think its a matter of you cant understand until you've been there yourself. but until you have, you have no right to judge the people who are in that position. its not as easy as switching on and off. its like a bad smell you just cant get rid of. it lingers unchanging until enough time has passed that it starts to clear just a little. 

i have my good days, bad days and in between days.... that's just my life.

wordless wednesday - fruit juice

this is the result of fruit juice this afternoon. this is why i don't drink it often. screw you diabetes for ruining the enjoyment of one (or maybe two) glasses of the stuff.

diabetes burnout

this last week has been tough on the old diabetes front... this week alone has caused more tears and frustrations about diabetes than ive had in a while.

but i didn't realise that what I've been going through for the last few months was diabetes burnout. i just thought that i was being silly and struggling unnecessarily.

its really difficult to explain to someone what I've felt like for the last week or two. theres so many conflicting thoughts and feelings that nobody could ever understand unless they've gone through the same thing. like, I've been taking insulin and testing, but not been bothered by whether I'm high or not... and then I've wanted to give up and stop the whole lot, but i know i cant so i battle on. but battling on isn't always the best thing to do, for me it just makes things worse, much worse..... battling on means that i just bottle everything up, because to look happy on the outside means keeping everything on the inside where it just eats away and makes things worse.

so this week.... its been a disaster. moving to uni has been the worst thing ever diabetes wise. especially as I've had to change gp and diabetes team meaning that in the middle of this burnout, I've just not wanted to sort any of it. and i still haven't sorted any of it. now that's been a problem. a really big problem. this week i ran out of rapid insulin. not the end of the world cos i had some insulatard (longer acting mixed insulin) left, but enough of a disaster to mean that until yesterday i was running high almost constantly..... why yesterday? because yesterday i decided to go to the pharmacy to see if they could give me an emergency supply of novorapid (rapid insulin) but this stuff isn't cheap if you don't have the prescription for it, i paid out £16 for 2 cartridges of the stuff.... normally i pay nothing and get 5 cartridges at a time.

so my challenge for next week? get my gp sorted so i can get prescriptions again. i don't wanna be paying out for anything else. especially test strips.... but as far as the burnout goes, I'm gunna have to take stuff slow so i don't overwhelm myself with it and fall even further down than i already am. because it really does suck feeling the way I've been.

no D day - just me

Today is no D day, a day where people who normally write about diabetes write about something different.

I liked this idea, it gives you a chance to meet the people behind the blogs or twitter accounts, after all we are more than a chronic illness...

so I've decided to tell you a bit about me :)

ok. so I'm Tara, I'm 18 (19 in a few months) i finished college this summer and I've just started uni in chichester to do maths and teaching (nuts right?) but so far i like it :)

I've got 3 younger sisters and 2 younger brothers. although, my brothers live with my dad.

i love most animals, and we have cats, guinea pigs, a rabbit and a hamster at home (bit like a zoo sometimes)

i have a huge fear of most things that fly.... mainly birds, moths and flies, but yeah, don't laugh if you hear me scream ;)

i love listening to music.... especially when driving.... windows down, music up and singing along... beautiful (maybe not though if you actually hear me) :)

i love kayaking... i haven't done it in a while, well, 2yrs... but its amazing, definitely a sport that I'm at least half decent at.

I'm fairly shy when i meet new people, but then i can be quite loud around friends and family :)

i hate saying goodbye... even for a little while...

chocolate is one of my ultimate weaknesses, no chance of me declining it if I'm offered some

I've got some amazing friends.... from secondary school, college and even a few already in uni :) these are people that i reckon i wont ever say goodbye properly to.

so yeah, that's me... I wouldnt say im interesting, pretty or amazingly wonderful but I'm me, and that will have to do

overwhelmed

this week. its been amazing, its been stressful, its been exhausting, but most of all its been very overwhelming.

i expected to find this week difficult with the new routine, the new surroundings, missing family and friends etc. but i didn't ever expect to feel like this after just 6 days

i didn't expect to hugely resent being diabetic and hate all the extra responsibilities and stresses that comes with it quite this much. i mean, just the thought of having to sort out a GP ended with me in tears today. i just don't want to have the extra hassle. but then, theres no choice, i need insulin and strips so i need to sort out the GP.

so I'm on day 6. I've loved every minute of uni so far. i don't even care that they have already set a ton of work to do, I'm just loving it.

and everyone has been great about diabetes, they've asked questions and wanted to know more. something so small, but its something which makes a huge difference. makes me feel that little bit more comfortable :)

luckily with staying in halls it means that you can just go sit with others when your feeling a little down or just need some company, everyone's in the same situation and everyone is just amazingly friendly.... also helps make things less overwhelming cos you know your not alone,...

now to tackle the pile of work this weekend and do our first bit of proper cooking... could be interesting :)