overwhelmed

this week. its been amazing, its been stressful, its been exhausting, but most of all its been very overwhelming.

i expected to find this week difficult with the new routine, the new surroundings, missing family and friends etc. but i didn't ever expect to feel like this after just 6 days

i didn't expect to hugely resent being diabetic and hate all the extra responsibilities and stresses that comes with it quite this much. i mean, just the thought of having to sort out a GP ended with me in tears today. i just don't want to have the extra hassle. but then, theres no choice, i need insulin and strips so i need to sort out the GP.

so I'm on day 6. I've loved every minute of uni so far. i don't even care that they have already set a ton of work to do, I'm just loving it.

and everyone has been great about diabetes, they've asked questions and wanted to know more. something so small, but its something which makes a huge difference. makes me feel that little bit more comfortable :)

luckily with staying in halls it means that you can just go sit with others when your feeling a little down or just need some company, everyone's in the same situation and everyone is just amazingly friendly.... also helps make things less overwhelming cos you know your not alone,...

now to tackle the pile of work this weekend and do our first bit of proper cooking... could be interesting :)

Telling

so the first day of uni is over.... so far i am actually loving every minute of it :)

only thing that ive had a slight issue with is telling people about diabetes. ive never had a problem with that before, maybe its because its a whole new situation and i dont know anyone well enough to feel comfortable telling people about it.

i must admit though, ive loved it being secret so far, ive enjoyed having fun with everyone and not having people asking about levels or insulin. its been nice not being judged for a condition i didnt choose to get. its been great just getting to be a care free student like everyone else.

people have been finding out slowly, first it was them asking about why ive got a fridge, then it was what my insulin pen was, then about my anklet (medical id) and so far nobody seems bothered.... although, im not sure anyone really even knows what diabetes really is (i got asked if insulin was for allergies today) and what effect it can have on my life...

people not knowing has been a problem though, its made me more reluctant to test when out, its made me more secretive about insulin injections (doesnt help that one of the people has a big fear of needles) so ive gone from testing about 10 times a day to only testing 5.... its not awful, but its not great either.... also, ive been really bad at taking my test kit and sugar with me. an especially bad idea considering ive been out drinking and been in 1-2hr long talks....

so i guess its down to me now, ive just gotta sort it like always and make sure my health doesnt suffer as a result...

its actually happening

ok, tomorrow is the day.... tomorrow I'm off to uni, off to start a whole new life... scary really. i cant believe that I've been preparing for tomorrow for over a year. a year. the time has gone so fast its unreal. i don't think any of it feels quite real yet actually, i mean I've packed, I've got the paperwork, I've been talking to other people on the course. but its all very surreal. like a dream...

and today was the final goodbyes to my friends, the last few that I've had to make before i go. i know it wont be forever, but it feels too long till the next time i see them right now. really hate saying goodbye, makes me all emotional (not a good thing when your driving) but i guess it really is only a few weeks, so I'm sure it'll all be fine :)

I'm prepared but at the same time I'm really not. I've got all the general things, but then with diabetes thrown in the mix I've had so much more to organize and think about... like making sure i have enough supplies.... i was doing so well with that and then i forgot to put in an extra prescription for insulin.... meaning now i have 2 cartridges to last me until i can get the docs and my prescription sorted... its a pain, but then ill have to manage (luckily i have some spare insulin from when i was on 2 jabs a day so i can go back to that if i need to)

i am sooo excited about uni, but I'm scared. scared about how diabetes will react to the new changes, how my levels will go when I'm out drinking for freshers... how other people will react to me being diabetic. its all new and scary, but it'll be ok. i know it will... there are thousands of other diabetics doing exactly the same as i am and there are loads of others that have made it all the way through.

so here i come uni... its gunna be good :)

getting closer by the day

i start uni in just over a week... its arrived quite quickly actually, more quickly than i would have liked if I'm honest

am i allowed to say that I'm actually scared about uni?..... like not just a little nervous... I'm actually terrified. its such a huge step from what I'm doing at the moment, I'm actually becoming independent now and the concept terrifies me....

then theres the whole saying goodbye to college friends. i know its not gunna be goodbye forever, but i hate it. i hate saying goodbye. i know ill make new friends, and they will probably be great and everything, but i was happy at college with all the people there and i didn't really want to leave the safety net of the semi independence it offered.

and the money side of things.... i never realised how expensive uni would be... i knew it would cost loads, but not quite this much.... i think that's whats stressing me out the most actually. its the knowing that things cost so much and that student finance are being idiots and not sorting stuff quick enough meaning that basically i cant afford to go... apparently it takes a month to check that my mum is the only income to the house to get me income based grants... i mean seriously?

i know this looks like a huge rant of nothingness, but its causing me mayhem with blood sugars. not a good thing when you are trying to sort out insulin to carb ratios and keep things under control. its not a good start for uni in the slightest... I'm hoping it all gets sorted within the next week so that i can chill a bit and my levels can settle before they screw up again for freshers...

ah well. i guess things will be fine in the end. they usually are....

can you see im diabetic?

ok, so its invisible illness awareness week. a week to become more aware of the different illnesses that people deal with every single day with very few physical symptoms. there are a whole range of illnesses and disabilities which come under this heading, but of course, as I'm diabetic that's what I'm gunna go on about....



So, I'm walking down the road and you see me. could you tell that I'm diabetic? in that moment would you be able to tell that one of my internal organs isn't working properly? I'm guessing that the answer is no.... you wouldn't. you might see the flushed cheeks of a high or the unsteadiness of a low but you wouldn't see diabetes.

in some respects i feel very lucky to have an illness which cant be seen. it means i can hide it so I'm not discriminated against. it means that i can blend in and act normally as if I'm just like everyone else.

but sometimes it really sucks that people cant see diabetes. it really sucks that people think that diabetes really isn't serious because they cant see the effects physically on my body.

thing is, diabetes does have a huge effect on my body. physically and mentally. when my sugar levels go high or low i get physical symptoms, ones that maybe don't look hugely disabling, but they are physical symptoms and they suck. i also get symptoms which affect me mentally. like when I'm high i become irritable and emotional and when I'm low i get panicky. 

diabetes also affects me long term though. diabetes could mean that i lose my limbs, eyesight and kidneys. it could make me infertile. it could give me heart problems. and it could kill me. diabetes also increases the risk of having things like depression, the stress of dealing with a chronic illness every day does really take it out of you. it can get you really down, down to a point where you need professional help. 

so yeah, you may not be able to see I'm diabetic, not at first glance anyway.... you probably would if you saw me testing or injecting, you might if you saw my medical id on my wrist, ankle or my keys. but most likely you wouldn't know that I'm diabetic unless i told you. 

so just think, even if you cant see what I'm dealing with, even if you cant tell that i have a chronic illness, just be aware. be aware that its still serious, just as serious as illnesses and disabilities that you can see.

2 years

today marks 2 whole years of being diagnosed with diabetes. that's double the time that i had lived with it this time last year. that's 2yrs of struggling, fighting, tears, stabbing of fingers, worrying about complications of high blood sugars and most of all that's 2yrs of growing up faster than i should have done.
But its not all bad, I've had 2yrs of being more conscious of my health, being part of an online community which is like a second family to me and being able to stand up and fight what i believe is right.

its been a tough 2yrs, i wrote down my diagnosis story here if you would like to read it :)

if i could go back and talk to the me of 2yrs ago what would i say? how would i tell her about all the stuff that was coming her way? how would i reassure her that it will all be ok?

how would i tell her that within a few short months she would be battling against the health system and professionals just to get them to listen and take her seriously? make them believe that shes not making things up?

but also, how would i tell her just how far she will get? how will i tell her that she achieves so much more than what people expected? how would i say that she has become a stronger person who has been able to get through so much and keep going?

Dear the 16yr old me....

Hey :D 

just thought i would write you a quick letter. one to explain to you how the next few years will look. i know your gunna think this is a joke and that what I'm saying is wrong, but please believe me, i know what I'm saying.

so you know that nurse visit you have today? she is gunna tell you something that will change your life forever. she will tell you that you have diabetes. don't be scared though, things will be ok.

you will see doctors who tell you that you have type 2, they will give you a meter and tablets to sort things. you will have an amazing dsn for the first few months before things start to go slightly wonky. you will have meds but they will only work for a while. you see, you don't fit into the usual t2 category.

for the first year things will be tough, your levels will get higher and higher before you finally manage to convince the consultant to give you insulin and while you watch your glucose levels go up, you will watch your grades fall, disappointment will be all you can see in your teachers eyes as they tell you that you could be doing so much better than you are. keep strong though, its not the end of the world

things will get better for a while. you will start to see improvements in your sugar levels. this is when it gets tough. and i mean really tough. denial sets in, the stresses of life take over and diabetes isn't quite at the front of your mind. hypos take the place of the highs you have been seeing for so long. you will want to give up, you will want to do things to make everything stop so you don't need to deal with it anymore. but keep going. you will meet some amazing people along the way. people who will make it worthwhile getting up in the morning for. 

 you will get yourself into uni, you will pass your driving test and most importantly you will become so much more confident in yourself. you will get there. it will be hard, harder for you than it is for most. but remember, you will manage. never give up, every battle you fight will be worth fighting for in the end. you will be so much stronger than you are right now. 

just keep at it. take things one day at a time. keep those around you close and try not to let the walls you build for protection stop you from getting the help you need. tears are just as good for you as the laughs, and trust me, there will be plenty of both.

love

Me, well you.... us? (you know what i mean)

p.s  "keep warm smiles in case of rainy days" 

feeling worse than fine...

if I'm honest, this last week has been awful. so many high readings making me feel rubbish. I've had enough. i want to be able to pack diabetes into a box and kick it into the corner so i can sort myself out for uni and enjoy my last few days/weeks with my friends before we all disappear. i don't want it interfering. not at all.


my averages have shot up, they are at the highest i have had them ever since being on insulin and i have no idea what to do about it... my 7day is 10.2. normally it hovers in the 7-8mmol region. 

my levels are going up and down too much, no hypos, just dropping into normal range then shooting straight back up into the teens as soon as i eat again, even if i take more than enough insulin (yeah I've changed the cartridge etc...) i hate it. it frustrates me. it makes me want to throw my meter across the room, curl up into a ball and just ignore the world for a while. 

right now i resent being diabetic. i am jealous of people who don't have to deal with it every day. maybe that's selfish and i know there are worse things to have, but you know what. diabetes is hard too. harder than people would ever imagine. 

the other day i got asked by a friend what being high felt like? i didn't do a very good job of describing it, but to be fair, my levels were high at the time and i had drunk a fair amount of alcohol so i wasn't too good at finding the right words... but here you go, here is what high feels like for me.....

imagine feeling tired, like you've only slept for a few hours, then adding a leaden heavy feeling in your limbs and an ache behind the eyes. make your brain go fuzzy so you cant concentrate on anything for more than a couple of seconds. then make your mouth so dry it feels like you've stuffed it with cotton balls paired with a thirst which makes you want to drink straight out of a tap because no amount of fluid is gunna help. then on the emotional side, its like being completely overwhelmed, i get teary and angry at the smallest of things, i often just want a hug and a sympathetic ear cos at that moment in time everything is the worst it can be. 

that's what being high is like. its not a nice feeling. 

but the thing that's getting me the most is that because i cant concentrate, i cant sit and get my uni work done. i know i really need to do it, and i know that time is running out fast. but i simply cant. its not physically possible to get it done while my levels aren't in the normal range.

is it too much to ask to just have a bit of a break? just a week? or even a day? yeah, looks like it is....

seeing eye to eye

today was that day that happens twice yearly for me. the day that makes me panic for no reason and can reduce me to tears just thinking about. today i had to see the diabetes consultant. 


now me and my consultant rarely see eye to eye. he tries to get me to do whatever he wants just because I'm one of his youngest patients in the adult clinic so therefore i should believe everything he says. most of my appointments with him have ended with me in tears because he simply wont listen to what I'm saying, he dismisses everything i say even though i know my body better than he does. 

He always has these theories about my diabetes.... how my weight caused my diabetes and how insulin wont work for me and how basically I'm making up excuses about every tablet I've tried just so that i don't have to stay on them. he has sworn that I'm extremely insulin resistant and that losing weight and metformin will get my sugar levels on the straight and narrow.

these are the things i end up fighting with him about. 

for a year now since starting insulin I've been telling him that I'm not insulin resistant. i had no proof to start with, i just knew I wasn't. then when my levels were finally stabling out and i was on less insulin than an average t1 uses i finally had the proof to back myself up. its not that I'm insulin resistant, its simply that my pancreas is not producing enough.

today was my last ever appointment with him. I'm now being referred to a clinic closer to uni. and today, we finally agreed. we finally made a mutual decision about me being able to stay on insulin rather than tablets. and he has finally agreed that my pancreas just isn't working to full capacity (like i have been saying for a long time). i don't have the right words to explain how that made me feel. relief that they finally agree? annoyance that its taken this long? i dunno....

for the last 2yrs i have heavily laid the blame of diabetes on myself. how if i had exercised more or lost more weight then i would have avoided it. maybe if i had eaten more vegetables or less junk food maybe i wouldn't be diabetic? now i know that i didn't do anything to bring it on myself. it was simply one of those things that happened. 

so now i wait. i wait for the new consultant to give me an appointment. i wait for the MODY test results to arrive. just like always i will wait patiently for things to finally go right. one day it will be ok. one day there will be a cure and this will all be a distant memory. one day, nobody will have to fight diabetes.