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

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




this post is meant as part of a study being conducted

If you want to participate, sometime in the next two weeks, put up a blog post or post a video, and then post a link to it here: https://ulavalfmed.eu.qualtrics.com/SE/?SID=SV_3D9FOiaWQgy4wUl Tell us what you wish health care professionals knew!

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

controlling sugar levels isnt the only battle

diabetes is hard

diabetes is tough to deal with

diabetes is scary

diabetes is a battle physically and mentally

diabetes is my life.

at the moment I'm finding diabetes difficult, not so much the testing and injecting, its more the effects of doing that.... 

i was doing my jabs every day

i was keeping my levels under control

i was trying my hardest to record it all and look for patterns

then it all fell apart

now, this has happened before for me, normally because the effort of it all became too much.

that's not the reason this time

this time its different, this time its a different battle going on in my head

weight

I've been battling with my weight for over half of my life, I've never been huge, but i have been what i would consider 'fat' for a long time now

it doesn't help though that the doctors and nurses are always on at me about my weight and how losing weight will help my diabetes (despite it being genetic and not linked to weight)

now, weight has always been a sensitive topic for me, I'm very conscious of it and have never had high self esteem so for a doctor to put so much emphasis on it, it just pushes it further and further to the front of my mind and means i have even less confidence.

losing weight is my biggest priority

I've had times where i have starved myself eating about 400cals a day just to lose some weight before an appointment so they don't moan at me

that's how important it is to me

so when i saw that i had lost weight when i got back from uni i was over the moon, i was so chuffed with myself and thought i had actually achieved something.

then i started injecting and controlling my diabetes.

i put on the pounds in a matter of days, not helped by the fact i had several hypos

that upset me so much

injections were dropped

it felt like i had almost been injecting liquid fat into my skin

losing weight is more of a priority than controlling diabetes and i cant believe that i think that.

why would i put how i look before my current and future health? i cant answer that, all i know is that I'm more scared of putting on weight than i am seeing a bad number on my meter

i know i will get abuse for saying that

its hard

people don't understand

there are more battles behind diabetes than people see and for me, weight is the biggest one

im not giving up

over the last few weeks I've been slowly watching my blog views go up... its nice to see that people are visiting my blog even though i haven't been posting much.

I've been meaning to post for a while but the effort has just been too much for me, I've been too busy, too tired and too burnout by diabetes to be able to do that.

i saw the consultant almost 2 weeks ago.... again it was a pointless appointment and left me feeling worse than i was before i saw him.

i finally built up the courage to ask for help with my mental health, i finally told a medical professional that i am struggling and skipping blood tests and injections.

he didn't listen

i told him about the responsibilities i hold at home.... he told me to just drop those responsibilities

i told him about the stress at uni.... he told me to just take a break from it

i told him about the lack of testing and injecting.... he told me that it doesn't matter because the high levels wont do any damage and that he doesn't want me on insulin anyway

and to top it off he said that unless I'm willing to go on a mood management course (which i would go to if it didn't interfere with uni) theres nothing else he can do to help with my mental health.

he didn't realise how frustrating all of that was

i cant just drop responsibilities at home, doing so would have much bigger consequences which would tear the family apart.

i cant just take a break from uni, if i don't turn up to the majority of my lectures i fail my degree. simple as that.

and I've said to him I'm not going on any more tablets, i don't want the side effects that they cause... plus, every high level i have IS causing damage, its just not noticeable yet...

i was pretty much in tears before i had even left the room.

i have now reached the point where i think it would probably be easier to just not bother seeing him anymore and not talking about my mental health if that's the sort of reaction I'm going to have.

however... I'm seeing the diabetic specialist nurse and the diabetes dietitian in a few weeks time and because of that I'm pulling together every ounce of energy i can find and trying harder to keep on top of my levels and insulin doses... and when i get back to uni i am going to be asking for more help with my mental health... i wont let that experience make me give up getting help

now I'm slowly pulling the control back to me rather than diabetes, I'm testing and injecting more, I'm trying to record it all and I'm not letting it get on top of me so much

i can do this

catch up

Things have been pretty hectic recently, I'm currently a quarter of the way through my final placement for the 1st year of uni, I've only got three more weeks before summer starts!!

 

This year has gone so fast its unreal, it only feels like yesterday that we were moving in and now I'm starting to pack to move to our house at the end of the month.

 

Diabetes wise things have been a bit hit and miss, I've been doing jabs more so that I can concentrate properly on placement but I have noticed that I've been missing them occasionally in the evening meaning i end up having to correct and I'm definitely not testing as much as I should... I also keep forgetting to take my inhaler, other tablets and basal insulin... not ideal and my chest is definitely not liking the lack of inhaler and my morning levels have been slowly creeping higher than I would like so basal insulin will def have to become more of a priority.

 

to be fair though, the majority of times that I forget to take the basal, inhaler and tablets is when I'm staying elsewhere for the night and don't want to carry everything with me because it takes up so much space in my bag....

 

I'm also having a tough time with my mental health again.... I've got a lot of stress going on (mainly home life, but uni definitely isn't stress free right now) and although I've been coping a lot better with it all, sometimes it all gets too much and I've had a few nights where I have literally cried for most of the evening. I just hate that I play such a huge role in sorting out problems that go on at home and I am relied on so much for solutions. on top of that I'm stressing about money, whether my car will pass its MOT next month, the paperwork I have to complete for placement and my upcoming appointment with the consultant....

 

I'm sort of stuck at the moment, there's not much I can do to get help with the mental health until September now as I don't have time to go to the doctors while im on placement (as it is ive got to take a bit of time off to get my blood test done for the consultant appt) , and cos I'm home for 9weeks over the summer there isn't really much they can do to help while I'm not here.

 

I reckon I should be okay though with the support of people on the diabetic sites and my boyfriend keeping me going...

 

its also diabetes week this week.... I'm not sure what I'm going to do for it this year, I might try and do another day in the life of a diabetic at some point and post it on here as well as trying to get across to people what exactly diabetes is. ill see how the week goes though...

recapping on the diabetes uk care event weekend

okay, so its been a while since i last posted.... had a tough time getting over hazel passing away so just haven't had the mental strength to actually write on here.

i know I'm a bit late but i wanted to talk about an event i helped out at just over 2 weeks ago. 

This year i was lucky enough to be able to volunteer at a diabetes UK family care weekend in Winchester. i can honestly say that it was THE most amazing experience ever!! 

for the first time ever it was NORMAL to test and inject at the table. 

it was NORMAL to count carbs

it was NORMAL to treat hypos and highs

it was NORMAL to discuss insulin pumps, pens, different insulin's, meters, ratios etc etc wherever we happened to be

it was NORMAL to hear numbers shouted across a room to let someone know what your levels are like

it was NORMAL to be diabetic. 

that is the most amazing feeling ever.

i cant describe just how upset i was to leave there. that was the first place i have ever felt truly safe no worrying about whether i might collapse and no one know what to do, no panicking that there wouldn't be any hypo supplies. the people around me all knew and understood my life. 

then there was meeting the other diabetic volunteers, some who'd had diabetes just as long as me others who'd had it much much longer. some who'd had children and others that are going through the preparation phases to get pregnant. people with pumps and others on injections.

all different ages but all fighting the same thing. 

simply amazing.

just talking to these people showed me that life with diabetes is possible, i know they tell you this all the time, but for me this was proof.

then there were the diabetic children. many of whom have had diabetes longer than me, but others who were all new to the journey. some families with more than one diabetic child and others with just the one.

to me they were all inspiring.

the strength so many of them showed was incredible

i remember one girl coming up to the table volunteers were sitting on to say to the paediatric dsn that she was going to do an injection in her tummy for the first time. she was so proud of herself and it was only through the encouragement of the volunteers and seeing other children doing so that she got the courage to do this.

i can honestly say that if i ever have a child with diabetes i will be going on one of these events. and i will definitely be volunteering again next year. i felt so welcome there and i can only thank the diabetes UK care events team that put these things together.

blue candles

blue candles.

the sign that diabetes has claimed yet another life.

every time one appears somewhere in the diabetic community it scares me. it scares me just how bad diabetes really is

people think its a pretty harmless disease to have, one that doesn't have much risk of killing you, but they're wrong. 

this morning i found out that a friend from the diabetes community died at the weekend. she had been in hospital with diabetic ketoacidosis (a condition which can be fatal if not treated quickly) she was getting better though, she was going to be discharged.... but she never made it out of there. 

its times like this when i really really hate despise diabetes. its taken the life of yet another person. it shouldn't be like that. 

people need to realise the seriousness of what it can do... how life threatening diabetes can be. 

but right now I'm hurting for the life its taken this time...

RIP Hazel, I'm gunna miss you an awful lot... I'm just glad you don't have to fight this anymore </3

things change

The hardest thing that I've had to come to terms with since being diagnosed with diabetes is how quickly things can change by a huge amount. 

I still remember how when i was first diagnosed i would have Saturdays as almost a day off from diabetes and eat what i wanted and not care too much about my levels, i would be able to eat loads and loads of carbs and only hit a 13-14mmols reading. i remember the panic that would cause. i remember how if i missed doses of my meds it didn't really have much of an effect on my levels... 

then a few months later things got worse. my levels were going higher than i had ever seen... i even got a reading of 31.4 at one point. a packet of crisps could send my levels into the teens and the meds didn't seem to be working anymore... 

and now? now i look at carbs and my levels can shoot up... i can test and have a reading of 19 after a small amount of carbs. I'm now pretty much totally reliant on insulin to keep my levels okay.

things changed. 

over the space of 2.5yrs the amount of meds I've needed on a daily basis has varied... I've had times when i was on nothing, others when i was just on tabs, and then just insulin.

when i started uni in Sept i was just on 2 types of insulin. 7 months later I'm on a whole lot more.

for the last month they've been testing me for asthma, I've wondered for a while whether Ive got it or not, but after a week of severe breathlessness with the cold weather last month i got myself checked out. then i saw the asthma nurse again on Fri and she says that by the sounds of things i am asthmatic, even if the peak flow charts aren't showing definite signs of it. 

so now my meds routine has been complicated further.... now when i get up i have to take my brown preventer inhaler, then with breakfast, lunch and dinner I've got to take my rapid insulin (and if im high or have a snack), then at 9pm I've got to take my background insulin, cholesterol tablet and another dose of the preventer inhaler... then if I'm breathless or exercising on top of all that, i need to take my blue inhaler... 

i know that there are people on a whole lot more meds than that, but to start uni on just the insulins and in less than a year to have that increased by an awful lot is pretty hard to take in... but i carry on every day trying to keep on top of it all.

things have changed a lot for me, but that's whats made me stronger and the person that i am today.

read between the lines

lets just say it to begin with. no beating around the bush.

yet again I'm failing at managing my diabetes.

i know its happened time and time again, and i know people are starting to think I'm doing this for attention with a 'poor me' type attitude. i know people think I'm not listening to their advice and just thinking I'm right all the time.... but I'm not.

I'm not doing this for attention, I'm not trying to get sympathy, I'm not ignoring peoples advice and i definitely don't think I'm right about everything.....

I'm just struggling an awful lot and sometimes i need to get stuff off my chest.

i don't need to hear about complications that will happen if i don't take care of myself, i don't need someone having a go, i don't need people telling me to man up and just get on with it, i just literally need someone to listen to me so i don't just keep bottling everything up inside, so i don't reach that dark place that i was in last year when i didn't have people to talk to about things that were happening.

i often don't talk about the stress I'm under, at home, at uni, at work, with diabetes..... sometimes for me it all just gets to be too much to think about and process all at once. this Easter holidays was a big example of that.

i worked pretty much every day, and even when i wasn't working i was doing work for uni (and stressing about the amount of work i had) or helping to look after my sisters. it didn't help that my mum hurt her hip really badly and couldn't drive or do much around the house meaning that after doing 8-10hr shifts at work i was coming home, helping to sort dinner, doing the washing, making sure my sisters were okay, doing any shopping that was needed and picking up prescriptions of my own and for my mum.... by the end of my 2week 'break' i was knackered.

and in the midst of all that stress, diabetes management was totally dropped. as in, i wasn't testing as much, i wasn't injecting too often or the same size doses i would normally have because work makes me hypo a lot so i figured i would rather be high than low as its less disrupting to driving etc and stress makes me higher anyway which didn't help... 

this time it wasn't me missing injections on purpose to rebel against diabetes, it wasn't me stopping testing and injecting just because i couldn't be bothered.... it was simply too much to be dealing with diabetes on top of everything else at the time, so i often just forgot. i found myself at times realising that it was 4pm and i hadn't tested since i got up, that's not on purpose, it was simply something that was forgotten because of how hectic things were.

i think what i need people to realise is that I'm only 19. i deal with a lot more than i should and at the end of the day i cant always cope with that. i know what i need to do and i know what the consequences are if i don't. so don't have a go at me, just listen, read between the lines of what i say and see what I'm actually going through.

trust

trust.

such a small word, but such a big issue for me. 

i find it so hard to trust people. for me, people need to show me that they will stick by me and help me when i need them to for me to trust them... they need to be consistent with what they do and show they care.

sometimes people don't realise how much of an issue it is for me to trust others. i try not to show it, but I'm so used to being let down over and over again by everyone that i now expect to be let down... it almost feels like i deserve it sometimes. I've built walls up for protection and i rarely let people in. i see it as a huge risk letting people see the absolute real me, it makes me feel too vulnerable. 

trust plays a huge part in my relationships with other people, there are only a few people that i trust enough to share what really goes on in my head with. people that i know wont just walk out of my life and screw me over or judge me with the stuff they know.

trusting doctors is another issue i have. the amount of times I've been let down by them in the last 2 1/2 yrs has just totally screwed up any ounce of belief i had in them. that makes it so difficult for me when it comes to getting help with diabetes....

trust is a huge thing to me, I'm getting there slowly with it and I'm learning to trust people more, but sometimes that's hard. sometimes my insecurities build up and the trust i have for people is questioned. i just need people to stand by me when that happens and help me through. 

labels

being labelled sucks. it really sucks.... but when you're labelled by a medical professional, it sucks even more. they are the people that are meant to know best, meant to believe what you say to them and help you sort it...

for a long time before getting a proper diagnosis i had loads of labels attached to my name by the professionals because of things i said to them or asked for. 

i was the fat one who brought diabetes onto themselves 

simply because i need to lose some weight

i was a liar

because i said about side effects that the tablets were giving me - ones that don't normally happen

i was uncooperative

because i said id had enough of trying different tablets with their different side effects and strict regimes

i was over dramatic

when i said that if i didn't go onto insulin to sort the high levels i would have to drop out of college - the constant highs meant my grades dropped low as i couldn't concentrate

i was the girl who 'wanted to inject'

because id had enough of constant high levels that tablets couldn't control - to me injecting 100 times a day would be better than the way things were

i was the one who 'should just accept my diagnosis' 

because i fought for genetic testing as i knew i wasn't type 2

i was the one who caused problems 

because i insisted on having things done in a way i wanted, to control diabetes in a suitable way

i was the over exaggerator 

because my log books showed loads of highs in the teens and twenties but my hba1c never went above 7.5% as my morning levels are always fine so lower it

i was the one who made things up

because i said my pancreas works some times and not others.... apparently this cant happen.... (to my consultant.... have you experienced a day in my shoes?!) 

it was really tough getting to a proper diagnosis. I'm not the kind of person to be bothered by labels.... of course they hurt, but i knew they weren't true, i knew i was doing the right thing by pushing for what i wanted. 

and I'm glad i did. I've got a proper diagnosis now. I've got a new consultant now who seems amazing (only met him once) I've got a new dsn now who is amazingly supportive and has helped so much in the few appointments I've had with her... 

sometimes you just need to push past what people think about you and focus on what you know is true. i fought these battles alone, it was hard and lots of tears were shed, but ultimately it was worth it. 

changing the perspective

life is about perspective, which things you focus on will mean the difference between being happy or not...

this morning i saw the dsn to get a few blood test results and change a few bits on my prescription.... nothing drastic

they were running late (as per usual) so that wasn't ideal as i was having to miss lectures to see her... 

then it started going wrong.... to start, she did my blood pressure.... now, considering that just going to the docs stresses me out, I've got a lot of things going on in my personal life that are stressing me out as well as uni, i wasn't surprised to see the result of it being high.... even after 3 different readings it was still waay above what it should be..... 

next she went through my blood results, cholesterol came back normal (yaay!) and the hba1c was 6.7% which although it is good.... i know that for me that represents a lot of highs (i was diagnosed with a a1c of 6.5%) but the thing she worried about most was that i might be hypoing? baring in mind I've only had a few hypos in the last few months where I've been skipping injections etc i was a tad confused..... 

then it all just got worse..... 

basically since last year I've not had a huge amount of hypo awareness, at night i wont feel hypos till i hit the 1's or 2's and during the day i don't really feel them till I'm in the 2's.... now, that's a big problem when it comes to driving.... to be able to keep your license you have to have good hypo awareness otherwise you're considered a danger on the roads (understandable) so after hearing that i don't feel hypos too well, my dsn has given me a warning that i may lose my license... warned me that she should be advising that I'm not meant to drive at all. I need my car, it plays a big part of my life.... if i lose my license then I'm gunna struggle big time. 

i came away from my appointment upset, fed up, hating diabetes for the problems it causes.... i came away focusing on all the negatives. 

but then that's when perspective comes into it.... you could say I've had a bad appointment because of the bad things that i had said to me.... or you could say that it was a good appointment because i had good blood results, i sorted some things out, i finally opened up to a health care professional that I'm struggling big time. 

perspective plays a big part in determining mood, so now instead of focusing on the negatives I'm gunna focus on those positive bits that will hopefully keep me going....

two days

I'm two days in to trying to control diabetes again and I'm struggling to keep going already...

my levels have been so much better.... Ive only seen one or two highs on my meter (i know I've been spiking after meals though) and my mood and concentration have been better than normal.... i mean yesterday i managed to concentrate not only through my lecture, but also enough to actually do some work in the afternoon too.... that's a big thing for me.... normally i can only do one or the other

but despite the good results, I'm still finding it really really hard to keep going... its just taking so much energy to carry on with the testing and injecting.

its hard to keep the motivation and keep positive. its hard to make sure i inject when, if I'm totally honest, I've had enough of needles and sticking them in my body. its hard to carry on smiling like I'm okay even though I'm totally exhausted. its hard to be how i normally am with friends and socialising when all i really wanna do is curl up in the corner and not say anything to anyone. its hard to put into words how this makes me feel, so far people around me don't know I've been struggling and i haven't said that I'm gunna need help or support or that I'm gunna need to be pushed to keep on top of this.... i still need to do that.

i really am determined to do it though this time, i really do need to get on top of it. i don't want complications in the future.... i don't wanna regret not controlling it now when I'm hooked up to a dialysis machine or legally blind in 30yrs time.... i don't wanna be wheelchair bound from multiple amputations meaning i cant be a proper mum to my children in the future. ultimately i don't wanna be a burden on anyone for any reason, especially not because i chose to ignore diabetes. 

I'm not just doing this for me anymore.... I'm doing this for the people i love and care about.