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 :)
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.
