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.
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.
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....
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.....
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...
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.
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..
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.
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?
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.
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.
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.
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 :)
