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 :)
Monday 31 December 2012
Thursday 27 December 2012
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.
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.
Wednesday 19 December 2012
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
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
Tuesday 18 December 2012
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.
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 :/
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.
Monday 10 December 2012
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.
Friday 7 December 2012
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
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
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