I'm still here!

I'm not sure where to start with this blog, I haven't posted in forever again and I know this will never be a regular part of my life anymore. Being an adult is hard, and I just don't have the time or energy nowadays to stretch myself in all of the directions I used to.

Being a teacher is taking over my life. Diabetes is taking over my life. Trying for a baby is taking over my life. There is very little space for anything else right now.

Mentally I am doing so much better now. I haven't gone through a 'proper' period of diabetes burnout since I started on my pump (and even more so since I got my dexcom). Diabetes now takes up so much less head space with these devices. I feel safe and happy and diabetes just comes along for the ride now. It's just a shame that these devices that make me feel like this cost so much.

I currently fund both my insulin pump and cgm. They are expensive. Luckily for me I have found some incredibly generous people who have donated pump supplies to me that they no longer need so that I can continue to use my pump with very few costs. It's just a shame that my consultant (who is usually fantastic) wants me to try out tablets again once I've had a baby.

I've lost my fighting spirit though. I can't fight anymore. After the massive fight it took to get onto insulin and get a proper diagnosis in the first place I just have no fight left. This is where I become stuck mentally. I just don't have the energy to fight anything anymore. Even when the DVLA recently took away my driving licence incorrectly I really had to find the energy and mental space to be able to question and fight the decision (Luckily I did as I can now continue to drive and received a written apology). It would have been so much easier to just accept that I couldn't drive and just leave it.

There are also still times where I can't help but hate diabetes (I know everyone does) but there are times where I hate being attached to devices, I hate being vulnerable, I hate how complicated it makes everything, and I hate the pressure it puts on me.

I am so determined to not let it stop me, but in the process it makes everything 100x more complicated. I got married in April, but I couldn't just enjoy my day, diabetes had to complicate it all. First I had to figure out where to put my pump (as I didn't want to go onto injections for the day), then I couldn't find my dexcom receiver just before I walked down the aisle and had to go 'blind' through the ceremony. I had to carry a bag all day for my test kit and hypo treatments (which I didn't want to have to do), then I spent the afternoon running in the teens, before plummeting to a hypo just as I was going to bed.

My honeymoon was complicated by diabetes from the word go too... supplies, letters, spares, ignorance, hypos, etc etc. I'm not ashamed to have my devices on show, but sometimes the stares do frustrate me.

Overall though I know life could be worse. I am incredibly lucky to be in the position I am in. I have family, friends, a husband, a job and a place to live. I have diabetes camp coming up soon (which I love!) and I'm starting new challenges in September when I become a year group leader at my school.

As always though, I hope a cure will be found and life will be simple again!

life update

Life seems to move at 1,000,000 mph at the moment. I'm not sure how it has already been almost 2yrs since I last posted on here and a lot has happened in that time.

• I have now graduated from uni and have a job as an actual teacher
• I have got engaged and planned my wedding (4 months to go!)
• I have moved in with my partner and have become a 'real' adult!
• I have completed (and passed) my first year of university
• I have added another 2yrs onto the diabetes tally
• I have found a specialist MODY consultant who I now see and who actually knows about my diabetes type
• I have started on an insulin pump and am currently using a Dexcom CGM
• I have gone through many periods of diabetes burnout but got through each one!
• I have got my hba1c down to 6.1%
• I have now got a beautiful niece and we are now looking to have a little one of our own! 

As I said, life is passing by very fast with very little time to even think about anything that I used to view as a priority. Diabetes still sucks, but it's less sucky than it used to seem. I don't know whether that is down to me growing up or that diabetes isn't such a huge part of my life anymore, but either way it causes me less stress and I am coping much better with it. 

Sometimes I can't believe that I've come this far after all I have been through. If you had asked me where I would be in 5yrs time when I started this blog I wouldn't have thought I would be a fully qualified teacher with a husband-to-be and a flat. I didn't even think I would make it through my first year at college. 

It just goes to show, you can be failing, you can be on the verge of giving in to those harmful thoughts, you can have no money or a shitty family and you can still get through and achieve. I am so proud of how well I have done and so incredibly pleased that I didn't end it all when I thought life wouldn't get any better. 

Hold on. Keep going. You WILL get there 💙💙

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