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

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