I wish people knew that diabetes....

Something I saw on another blog and I liked the idea so thought I would do the same....

I wish people knew that diabetes hurts. Mentally and physically diabetes does so much harm, I'm covered in bruises from injections, my finger tips are full of holes and the burning pain from injecting insulin is sometimes enough to bring tears to my eyes. The mental exhaustion it brings is huge too. The never-ending battle to keep levels in range and just the way it can affect moods is so hard to deal with sometimes.

I wish people knew that diabetes comes in more than 2 types, there are in fact more than 10 types of diabetes. I have MODY 3 diabetes, no its not the same as type 1 or 2. No it isn't just another name for type 2 in young people. Nobody knows about it, no one is looking for a cure for it and no awareness raising happens for it. I don't fit into the main diabetes categories, but that doesn't make it any less hard to deal with. If anything, it sometimes makes it harder as not only am I battling the high and low sugar levels, but I have also had to battle to get treatment which works for me and I even had to fight for 2yrs just to get an accurate diagnosis.

I wish people knew that diabetes makes me cry. Yeah I might be 21 now, but I still have times where I've had a rough day with levels swinging all over the place or a high level that just wont come down, a nasty look from someone while I do my insulin or just sometimes just knowing that this is forever that means a good sob is needed. 

I wish people knew that diabetes scares me. The fact a high sugar level could cause future complications or that a low sugar level while sleeping could kill me is so scary. I try to control my diabetes, but sometimes it is the one that controls me. It also scares me that any children I have in the future have a 50% chance of getting diabetes from me (thanks to that dominant gene which causes my diabetes). I wouldn't wish diabetes on my worst enemy, let alone my own child.

I wish people knew that diabetes cannot be cured. Not type 1, not type 2, not any type. No matter how many times I detox my body, eat cinnamon, sleep naked, stop watching TV or do any of the so called 'cures' my diabetes (and anyone else's diabetes) wont go away. 

I wish people knew that diabetes isn't caused by eating sugar (or anything containing large amounts of sugar or fat). Most peoples responses to me saying that is: 'Type 2 diabetes is' but it isn't. Type 2, just like type 1, is a complex condition which has many contributing factors that lead to the condition developing. Diet might contribute to type 2 in some cases, but not all. Saying that you will get diabetes from eating too much sugar is just inaccurate and annoying. 

I wish people knew that diabetes doesn't stop me from doing anything. Yeah I still eat cake, yes I still drive, eat junk food, go out drinking and do anything else that any other 21yr old would do. It just takes more planning and some extra equipment for me to take part. 

I wish people knew that diabetes can cause complications, but that doesn't mean I want to hear about someone you know who went blind or lost one of their limbs. I'm 21 and I might get complications in the future, but right now I don't have any, and I don't need someone else reminding me how much diabetes could affect me. 

I wish people knew that diabetes has also been my biggest blessing. Without it I wouldn't be as aware of my own health, I wouldn't have met such amazing people, I wouldn't be so compassionate to others with chronic heath conditions, I wouldn't be as confident in being able to stand up for what I need and what I believe in. Yeah I honestly hate diabetes, but it has opened up so many opportunities that without it, I would never have had. 

And lastly...

I wish people knew that diabetes affects everyone differently. We are all different, and so is our diabetes. Don't judge what I do against what someone else does.

4 Years

Its been 4 yrs.

4yrs since i was sat in that doctors room feeling small and scared

4yrs since i was handed a glucose meter and medication being told that my life would change forever. 

and they were right

Life has changed hugely. I'm not as carefree as i used to be. I am more aware of food and the effect it has on me. I'm regularly at the doctors for appointments with different people to discuss different things. I have holes in my fingers from testing my levels and marks over my body from the insulin injections. 

I have struggled. I'm willing to admit that. 

In fact, I've still not come to terms with being diabetic, with being different, with this being a life long incurable condition. 

But i wouldn't change it.

that might sound mad, but its also brought a lot of positives to my life. 

I'm more independent now, I'm more knowledgeable about my body and do more to take care of it, Ive met some amazing people both through the diabetes online community and the diabetes UK events that I've volunteered on (both of which i wouldn't be part of if i wasn't diabetic) I'm more capable of fighting for what i want and more determined to achieve things that i want in life.

So yes, my life has changed, but its not all bad... so today is to remember and celebrate how far I've come.

burnout, uni and summer - recapping whats going on

its been a long time since ive posted on here, i know that.... 

i also know ive been wanting to write for a while but dont really know the words to say what i need to say

the last few months have been tough, theyve been a whole mix of feelings and thoughts both about diabetes and other aspects of my life.

uni has been stressful and im now having to make decisions about next year and the future with applying for jobs and doing my dissertation. I cant believe that i have already finished my second year at uni and that the end is so close. The real world is becoming more of a reality every day now...

However i am managing to get through it and finished this year with an overall 2.2 which im pleased with :) 

diabetes wise things have changed massively. Last time i posted i was in the middle of a massive diabetes burnout. I wasnt coping at all with the injections or testing, I wasnt coping with the amount of weight i was putting on when i was doing the injections properly and i wasnt coping with being different and having to think so much about diabetes all of the time.

Ive started to change that now though, in april i was changed back to a mixed insulin to help me cope better with it so rather than having to do 4+ injections a day, i now only have to do 2 which in some respects is great... but then im still not getting great control... dont get me wrong, my control is way better than it was by not injecting at all and my hba1c has gone from 8.1% to 6.8% in 4 months, but its still not as good as i would like....

I still struggle with making sure i take it every day, but slowly i am getting there thanks to the support of my dsn. For now, im sticking to the mixed insulin because at the end of the day some insulin is better than no insulin and with next year just around the corner along with all of the stress that this brings i dont feel ready to go back to the basal bolus regime... we will see though and i will talk to my diabetic nurse when i go back to uni.

and now begins the summer holidays which therefore means being very very busy.... working 10hrs every day for 5 out of the 6 weeks and then volunteering on a childrens holiday for diabetes uk for the other week means that im going to be on the go most of the time and wont have much time to myself to blog or do anything else...

definition of stupidity

 rebelling against diabetes seems like a good idea

sometimes refusing to take insulin to lose weight seems like a good idea

sometimes you lose sight of the massive implications that high levels have

tonight i had fruit juice,

only a few glasses but no insulin and fruit juice arent a good mix...

HI means that my levels are measuring at over 33.3mmols thats over 6 times higher than it should be....

maybe rebelling against diabetes with fruit juice wasnt such a good idea...

ps... i never normally have fruit juice, and this is why....

world diabetes day 2013

So today is world diabetes day...

most people dont know this, its not a well known day like world aids day but for those in the diabetic community it is a day to raise awareness of what we go through every day.

so i thought that i would educate people on my type of diabetes

If you look through my previous blog posts you will realise that i dont have the typical type one or type 2 diabetes.

I have mody 3 diabetes (maturity onset diabetes of the young)

It is completely different.

for a start, type 1 diabetes is caused by an autoimmune response, it is when the body attacks the pancreas so it no longer makes insulin.

Type 2 diabetes is caused by insulin resistance which stops the cells using insulin properly. However, both of these types are caused by a mixture of genetics, environmental factors and viruses...

Mody 3 diabetes however, is caused by a single gene which is to do with insulin production. This gene has been mutated since i was born, but its effects dont show until teens or early 20's.

this gene mutation causes my pancreas to not produce enough insulin, its not like type one as i still produce some insulin, but its also not like type 2 because im not resistant to the insulin i make.

mody diabetes only makes up between 2-5% of all diabetics

its pretty rare

As it is a completely genetic type it means that any child i have in the future will have a 50% chance of inheriting the condition.

It is also monogenetic.

that means that it only needs one parents gene to pass the condition on.

you cant just be a carrier of mody diabetes

Due to not producing enough insulin, i inject insulin to stop my levels going too high, this means that i also have to test my levels regularly to make sure they are within range. 

Over the last 3yrs my insulin production has reduced an awful lot, there is a possibility it will continue to reduce as time goes on meaning that i will be almost completely dependent on insulin.

I still have the same risk of developing complications as any other type of diabetes.

these include blindness, limb loss, heart problems, kidney failure, nerve damage and ultimately death

diabetes is more serious than people think and for me, today is about raising awareness of that fact

what i would like them to know

I have mody 3 diabetes

when i tell doctors or nurses that its often up to me to educate them on what exactly that is as they have normally only heard of type 1 or type 2 diabetes. That is frustrating, i mean I'm the patient, i don't have a medical degree.... obviously i don't expect a surgeon to know the ins and outs of mody diabetes, but a diabetes specialist should be able to educate me about it rather than the other way round...

so what would i like them to know?

I would like doctors and nurses to remember that often the patient knows best when it comes to their condition and whats going on, after all they are the ones living with it

I would like them to know that just because two people have the same type of diabetes it doesn't mean that their treatment will be the same or that they will react to treatment in the same way... every person is different

I would like them to know that its scary going to clinic appointments, get to know the patient, chat about other stuff as well as diabetes (after all that's not our entire lives) it will help us to trust and respect you, and it will help you to understand why we had high or low numbers... lots of things affect it

i would like them to remember that a hba1c doesn't always reflect what happens day to day, sometimes you have to believe the numbers in the log book even if it doesn't look like it matches, it is only an average and doesn't reflect the effort that is or isn't going into controlling diabetes

i would like them to listen when you say you need help. its hard enough to admit that let alone having to fight to get the support you need

i would like them to know that living with diabetes is tough, its not always easy to carb count or get doses right, you aren't always going to remember every injection, we are human after all

i would like them to know about my type of diabetes and be able to tell me how its going to progress or how much it will affect my life.... even at 19 i worry about passing it on to children or the likelihood of getting complications in the future

overall i just want doctors and nurses to look beyond the textbook examples and the treatment plans that are printed on paper.

i am an individual, i need my own plan that works for me. whether that involves insulin, tablets or diet control i just need the support for what I choose to do.

I am not a number

I am not defined by my condition

just remember




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turning things around

Its hard to believe im now approaching my 3rd anniversary of being diagnosed with diabetes


my second anniversary of being put on insulin.


such a short amount of time compared to other people and yet ive almost given up already.

the amount of insulin injections ive done in the last month can be counted on one hand.

i came home from uni 2 months ago with 200 test strips, i still have over 50 left. not good.


ive gotta turn it round, ive gotta start doing this properly again and get my hba1c back down.

ive gotta start carb counting like ive been shown how to do

i need to get back my control


the fear factor has never worked with me, its never motivated me to control diabetes, but how rubbish ive felt recently has made me realise that i need to get things back to how they were.


with my levels hovering around 20mmols most of the time ive had no energy to do simple tasks, my moods have been all over the place, ive been so thirsty but for a while now ive thought its been worth it for the weight loss.

ive been thinking about it though, and ive started realising that weight loss is great, but not when its at the expense of my sight, my limbs, my heart or  my kidneys....

weight isnt really that important, ive got a boyfriend who loves me for me, ive got friends, ive got my family and im making something of my life....

weight loss will come eventually, my health is more important.

ive missed being part of the online community, ive missed feeling like i have the energy to do stuff, ive missed feeling like ive achieved something when i see a good number.

what good am i if i carry on like this and end up blind, with amputations or dead?

ive done so well before, i fought for an accurate diagnosis and won, i fought for the right treatment and won and ive fought this for 3yrs without anything bad happening

its gunna be tough, im gunna need support, im gunna need to take things one step at a time and im gunna have days when things dont work out.


ive got to do it for me and thats what im going to do