World Diabetes Day 2013: The Invisible Condition

Happy World Diabetes Day, everyone! :) In true WDD style, I awoke this morning with a blood sugar of 3.6 - a true reminder of the fact that I have diabetes and, along with the other 382 million people with the condition, this day is partly for me.

Diabetes is so often referred to as the 'invisible disease', the 'invisible disability', or the 'invisible condition' (I prefer the latter terminology!)  It's true, diabetes is invisible.  No one would ever know, when they see me on the street, that I've already checked my blood sugar and injected myself with insulin at least once that day.  However, sometimes, it feels to me that diabetes isn't invisible at all.

I see my skin when it's covered in sore patches of blue and purple - bruises from my injections.  I see the remainder of unhealed wounds everyday - permanent scars, because of the poor circulation my diabetes causes.  I see hundreds of pin-prick holes on the tips of my fingers - the proof of regular blood sugar monitoring.  I see a ghost in the mirror - pale and drawn from unstable blood sugars.

It's at times like these, when it feels like I have 'diabetic' tattooed on my forehead, that I have to remind myself that not everyone knows diabetes like I do.  In fact, some have never heard of it at all.  To them, my bruises and scars could be from sporting injuries, my face pale as a result of late nights and, as for the pin-prick holes, they would probably never be noticed at all.

I realise that because diabetes is invisible, it's so important that we let people know what it is.  For me, World Diabetes Day is always about raising awareness.  It's about making people aware of the symptoms of undiagnosed diabetes and the symptoms of hypo/hyperglycemic episodes.  It's about letting people know the differences between the types, how it is treated and how it affects those dealing with it on a daily basis. 

If we can all go out today and learn something, or tell someone one thing about diabetes, we are contributing towards a future where an invisible condition becomes one which is understood.  If we can fall asleep tonight, or any night for that matter, with one more person in the world knowing something about diabetes that they didn't before, we should be proud! :)  So today I go out in the world, wearing blue and taking the invisibility cloak off the shoulders of diabetes - hopefully I'll learn something too!

Day 29: Diet Coke For The Diabetic

Yippee!  I've finally caught up with my HAWMC posts and I'm on track for the final stretch.  Today's prompt is to write a 6 sentence story.  I've never been particularly good at keeping things short and concise - I tend to ramble or go off on a tangent.  Think I may find this challenging...

I took a sip through a straw.  The liquid came into contact with my tastebuds.  Sweet, sickly, full of sugar - I spluttered.  It wasn't the first time it had happened.  I took the drink back up to the counter, manoeuvring my way through the queues of hungry customers.  I addressed the woman who had served me - "I am a Type 1 Diabetic and I asked for Diet Coke!"

Day 23: Support For Diabetic Students

A little while ago I was interviewed for an article on the Guardian website about whether or not universities are doing enough to support students with long-term illnesses.  Of course every university is different and each will have it's own provisions in place, or so we hope.  Nevertheless the general consensus revealed that students living with autism, epilepsy, mental health disorders, diabetes etc. don't always have access to the help and resources they need to be happy and successful whilst studying.  

When I started uni in September of last year I attended freshers fairs expecting to come across a Diabetic Students Society of some sort, but no such luck.  Yes, Disability Services and Disability Counselling are all well and good and definitely are needed, but what if I don't want to be counselled?  What if I just want to speak to people in a similar position to me, people with diabetes?  It's for this reason that I was excited and intrigued when I was contacted about an online support network for diabetic students.

Vicki Gibbs and Lizzie Holt are second year university students who had been disappointed with the lack of support offered to them and others with diabetes.  Both girls felt they had benefited immensely from being able to interact and identify with one another on the Diabetes Support Forum (UK), and felt there should be a place where diabetic students could do the same.  So, in true DOC style, they made it happen!

Student Diabetics UK (SDUK) or 'Rant Room' is a Facebook group where students can talk about, laugh about, share concerns about and unite through diabetes.  From managing diabetes and drinking alcohol, to dealing with diabetes and exam stress, to concerns about bg levels, to where we keep our diabetes supplies - you name it, SDUK discuss it!  It's not even 2 months old, but the support group is growing as quickly and successfully as the friendships that are being made within it.

Not only is it helping me to focus on managing my diabetes as a student, but I'm learning new things all the time and I'm meeting some truly amazing people along the way.  I think it would be fair to say that we'll be seeing great things from SDUK in the future.  So if you're a college/sixth form/university student, check it out!  Trust me, you'll love it as much as I do.

Day 8: From Diabetic To Diabetic

Recently someone I know was diagnosed with type 1 diabetes.  I was scrolling down my Facebook news feed when I saw a status saying something along the lines of 'A jab a day to keep the doctor away. Everyday. Type 1 diabetes won't beat me!'  

I didn't think much of it at first - I'm so used to reading things about diabetes on the internet because I'm always either on Twitter as @DiabeticDais or reading diabetes blog posts or writing them myself.  It took a good few seconds before I realised that the status was out of place and that I'd never seen this person talk about diabetes before.

Anyway, we got chatting and it turned out he'd been diagnosed as a type 1 that night.  I let him know that I was there if he ever needed to talk, mainly because I wish that I'd had someone who understood what I was going through when I was sick of doing jabs or carb counting or just sick of diabetes in general.

Here are our messages, diabetic to diabetic:

Me:  Hiii, you ok?  How did your appointment with the specialist go today?

X:  Hey :) Yeah I'm alright thanks.  I'm used to stabbing myself now, aha!  Got the same as you, 4 times a day which is more flexible but obviously you know that aha.  

Me:  Aw, yeah, 4 a day means you can have a lie in if you want (Yay! Haha!)  Glad it went well and that you're already becoming a pro :P Have a nice day and watch out for low blood sugars in this weather! Carry something sugary with you just in case.

X:  Haha!  I wish!  I'm up at 8 most mornings.  Wakes you up when you stick a needle in your bum!  No worries about low blood sugars - it was 26 yesterday, 11 this morning and then 8 about an hour ago so it's steadying out now.  Carry a bottle of Lucozade with me now just in case, haha.  I'm sure after a week or so I'll be fine!

Me:  I bet it does!  You inspired me to give it a go but I chickened out last minute and stabbed my leg instead :)  Lucozade's the best, especially when you're bored of eating! I woke up at 16 this morning and felt crap so your 8 is impressive!

X:  It hurts more in the belly than in the bum!  Probably because I've got a fat arse, haha!  16?!  Someone lavished up on sugar yesterday - I'm a pro now too you see :P

Me:  Ok...I admit it! I did indulge in some Ben and Jerry's last night - I did inject for it though!  You still gotta' live right!?

X:  Haha, well I've eaten a Ben and Jerry's Caramel Chew Chew so I'll let you off.  I did my injection in my leg tonight - thought I'd mix it up a bit, aha!

Me:  Bloomin' 'eck, that's it, live the Diabetic high life! :P  What insulins are you on?

X:  I haven't a clue - one's a silver pen and one's a blue pen.  That's how clued up I am :P  I'm learning slowly!

So there's a snippet of our conversation.  Just thought it was funny how something as simple as having some ice cream involves so much more thought and consideration for a diabetic and how it's nice how another diabetic can appreciate this too.

Day 7: Fat Lantus

I recently went to visit my Diabetes Nurse for a check-up and a chat.  When I moved away from home for University last year, I decided that I'd retain my diabetes care in Nottingham rather than moving it up to Leeds.  The main reason for this decision was my Diabetes Nurse.  She is, in a word, fabulous.  The quality of my relationship with her and her care and knowledge were of far more importance to me than the convenience of having a diabetes team in my city.

Most of all I'd been concerned about gaining weight.  I don't have some hang-up about thinking I'm fat or anything when I know I only weigh within the lower 8 stone region, but I'm also only 5ft 2" and even a pound or two extra is noticeable to me at least.  I'm not idle - I exercise regularly.  I love food, but I don't eat more than I should.  So why was I starting to constantly feel like I'd stored a large sack of uncooked potatoes somewhere in my body?

After a few conversations with other diabetics, I started to blame my long-acting Lantus insulin.  To those who don't already know, insulin is a hormone.  Hormones inevitably have an affect on your body in some way, whether they change your mood, behaviour or something else.  Lantus is renowned for increasing a person's weight, much to the disappointment of many diabetics.

My Diabetes Nurse understood my concern.  After all most people want to feel that they're in control of their appearance.  She said that an alternative insulin called Levemir would probably work better for me.

Levemir is also a long acting, basal insulin.  I am able to take pretty much the same dose as I did of Lantus, twice a day.  However it is different in three massive ways:

1. Levemir is more flexible.  If you need a dose adjustment you can do it and it will take affect straight away.  Lantus, however, can take up to 3 days before you even start to see a difference.
2. Levemir is not as acidic as Lantus, so it doesn't sting when you inject.
3. LEVEMIR DOES NOT CAUSE WEIGHT GAIN.

From this information it would seem that overall Levemir is more favourable than Lantus.  So why are diabetics even put on Lantus to begin with?  Of course I'm sure that lots of diabetics witness no negative side-effects of Lantus.  Still, when there are many who do, I don't understand why they should be made to endure weeks/months/years of seemingly unexplainable weight gain and other problems, especially when they could just be put on an arguably better insulin instead!

Sorry that this has been a ranty post - I'm sure there probably is a reason as to why Lantus would seem to work better for some people, but from my own experience it's just a recipe for frustration.  Backing good old Lev all the way!  

Day 4: Why I write.

Someone recently said to me "Why write about diabetes? I might as well write about my size 11 shoe."

It helps me to manage my own diabetes because knowing that I need to keep posting on a semi-regular basis means I'm reminded that I need to maintain my focus.  I can't ignore my diabetes, not only because I'll be an absolute mess and really ill, but because I'll have nothing to write about!

Writing this blog helps me connect with other diabetics.  It's a pretty rare occasion that I will meet another type 1 in my every day life, whereas through the Diabetic Online Community I make new acquaintances and friends every week.

I'd also like to think that by writing about diabetes I am able to provide inspiration and support to other diabetics, just as other Health Activist Writers do for me.  I love how I can write about something sad, annoying or funny about my diabetes and I'll receive comments from people saying that they've had the same experience or they know just how I feel.  Writing about my diabetes makes me realise that I'm not alone in this.

Most of all though, I write about it because I have diabetes.  I have to live with it 24 hours a day, 365 days a year, so I'll write about it if I want to!  So, to the person who made the comment I mentioned at the beginning of this post: take your size 11 shoe and shove it where the sun doesn't shine!

A Letter To My Parents - In Aid Of Mother's Day

Mum and Dad

Seeing as it's Mother's Day I thought I'd take the opportunity to let you both know how much I appreciate you both.  So here goes...

I think it's hard for anyone who doesn't have to deal with diabetes on a regular basis to realise just how difficult it can be.  Although I know how it feels to have diabetes myself, I think that in the past I've underestimated how much it has affected you both too.

Being told that your three year old child has a incurable disease such as diabetes isn't what any parent wants to hear.  No parent wants to have to inject their child, draw blood from their fingers or force them to eat, otherwise they'll be ill or worse (remember how I used to hide my second piece of toast in my room, only to be found weeks later?!)  From the moment of diagnosis your lives were changed and I can't even begin to imagine the fear and shock you must have felt.  Despite this you both accepted it and tried your hardest to learn the in's and out's of my diabetes, in order to make sure that I was healthy and that my blood sugar levels were controlled.

Mum - Happy Mother's Day!  I know that the last 15 years haven't been easy for you, but I thank you for supporting me with my diabetes through them.  In all honesty I realise now that I didn't always help you in helping me.  I often thought that I knew best when it came to my diabetes and didn't listen to your advice when I should have done (I know you told me dozens of times that I needed to follow my fast acting hypo treatment up with slow burning carb, otherwise I'd drop again!) 

You have done so much to encourage me in taking care of my diabetes.  You even altered your diet to make sure that I was eating what I needed to.  You and I have had some 'adventures' with diabetes, from going low on the top of a cliff in Devon with no hypo treatment, to several hypo's on motorways (one resulting in me eating stale bread to bring my bg up!) 

Thank you for always reassuring me that, if I make diabetes my main priority, it never has to stop me from doing anything.  I know you used to hate going to the hospital for my check-ups because the doctors were judgmental - they never had any right to be.  You have done such an amazing job with my diabetes and without your input I wouldn't have the positive attitude towards it that I do.   Mum, you are an angel.

Dad, I know you worry about my diabetes care and I also know that over the past 15 years it's caused you a lot of stress.  I want you to know that now I'm older, I do take care of it and I do so because of how you have educated me.

I love how you send me links to diabetes websites with information about the latest technologies and the progress that is being made with regards to finding a cure.  Thank you for buying me books on diabetes and nutrition and subscribing me to Balance Magazine.  You take an interest in everything to do with my diabetes and that has encouraged me to be interested too.

I know that you worry because you love me, but you really don't have to.  Because of you I am eager to take care of my diabetes.  Again, I'm sorry that I haven't always taken notice of what you thought would be best but I listen to you now and you inspire me.  Dad, I trust you with everything.  You are my rock.

More than anything I want to thank you both for noticing of my symptoms, knowing that I had diabetes and for making sure I was diagnosed (despite being told by a GP that it was just a 'stage' I was going through).  You saved me and you have made my life a healthy and happy one.

We might not be the most conventional or nuclear family (okay, we're definitely not) but what we are is friends.  Thank you for bringing me up, for reinforcing the importance of controlling my diabetes and for supporting me always in everything I do, including writing this blog.  I couldn't have wished for better parents and I love you both with all of my heart.

From your Dais xxx

Retinal Rage and Making Mistakes

Last week wasn't the best.  Unfortunately new-found knowledge managed to put a downer on the majority of my days.  I'm now ready to blog about it and perhaps vent my frustrations about the current circumstance regarding my diabetes.  Apologies in advance, just in case.


I try to maintain a positive mind-set about my diabetes.  I acknowledge that there are far worse diseases to have and much more unfortunate situations to be in.  I also respect that diabetes, when well managed, doesn't have to compromise your general health or lifestyle.  That's why it just about broke my heart when I received a letter to inform me that I have developed background retinopathy.


Being told this at the age of 19 isn't what I wanted to hear, to say the least.  I felt upset of course...so upset that I bawled my eyes out for about an hour.  Most of all I felt angry.  Angry that I'm 19 and I have background retinopathy, angry that I feel like I've tried so hard for 15 years to control my diabetes well, but more than anything else I was angry with myself for, what felt like, obviously not doing enough.


I find that there's a lot of guilt involved in diabetes.  I recently read a fantastic post from Meagan Esler at Diabetes Health that confirmed this to me.  I end up feeling guilty if my bg's are too high or too low or if my HbA1c isn't the percentage it should be and I feel guilty that my loved ones are affected by it almost as much as I am.  If I let it, the guilt surrounding my retinopathy could probably consume me.  I feel awful that I've allowed those ketones to even exist, let alone harm me.


So I spent a week beating myself up about this, but there has to come a time when you stop torturing yourself and give yourself a break.  I deal with the rollercoaster ride that is diabetes management every single day of my life.  Alright, so in the past 15 years there will have been days when I haven't carb counted correctly or I've accidentally given an insulin shot later than I should have done or I've eaten a chocolate bar or two.  Perhaps these mishaps are the causes of my background retinopathy - I'll never know for sure.


I refuse to live my life continually making myself feel bad.  Of course, I am making changes; I'm now trying harder than ever and making even more effort to ensure that my blood sugar levels are balanced.  I just think it's about time that we diabetics cut ourselves a bit of slack.  Why is it that so many of us end up, probably subconsciously, thinking that having diabetes deprives us of something that makes us all human?  No one is perfect.  Everyone makes mistakes and everybody is allowed to...yes diabetics, even you!

Diabetes Hurts...

...literally.

So if we're not stabbing ourselves with needles and lancets every day, then the D is finding other ways to add insult to injury.

This is my thumb stuck in my sharps bin.  I was trying to push my needle into it when it decided to eat my fingertip.  Can't even tell you how much this actually hurt!  Sorry about the bad image, but it's quite hard to take a decent photograph with one hand when you're in pain.

Will take better care next time I think.  Hope you're all well! x

Happy 15th Birthday, Diabetes!

There it is - Date of diagnosis: 13th November 1996.  Happy Birthday 'D'!

Wow, 15 years old.  You're looking good for your age, Diabetes.  I only have a vague recollection of your birth, but since then I think we have created enough memories to last a life time.

We've spent some interesting time together over the years, you and I.  From hospital admissions, to lows on the tops of cliffs with no hypo treatment, to DKA, to emergency prescriptions.  It's safe to say that, with you around Diabetes, there's never a dull moment.

I won't be cracking out the champagne, blowing up any balloons or lighting any candles on a birthday cake, but I celebrate this day nevertheless.  15 years on from diagnosis and we're living pretty harmoniously.  You're part of me and you're here for the long-haul.  Here's to the next however many years...x

Dealing with Diabetes.

This is my first post in a while - DOC, I have missed you!  I'd like to thank everyone who has been checking my blog 'just in case'.  I'm back and I'm back for good.


I'm not going to lie, recently has been one of the strangest, most surreal and probably most difficult times of my life.  Along with the stresses and strains of leaving home and becoming independent, the unexpected passing of a loved one has impacted my ability to cope with my diabetes to a shocking degree.


Even as someone who is usually very dedicated to and knows all too well the importance of trying to keep on top of my diabetes care, once I had begun to neglect it, it wasn't long until things had spiraled completely out of control.


Currently, my life seems to consist of bouncing around between horrifically high and worryingly low blood sugar levels.  It gets to a point where you dread testing because you know the number on the screen is going to make you feel physically sick to read.  So, one day you don't test because you're wallowing and then before you know it you're stuck in a vicious circle.


Diabetes is unforgiving and impatient.  It doesn't stop, even when you want to.  It doesn't care how sad you are, or how much you've got on your mind.  If anything, it tries its very hardest to make things more difficult.  If I want to run away, I can guarantee that the D is coming with me.  There's no shaking that devil off my back.


Sometimes you need a wake-up call, a bombshell to hit before you realise that ignoring the D isn't going to help you at all.  Mine came in the form of this:

An off-the-scale high reading?!  Confirmation that I need to get back on top of looking after myself.  No matter how bad things are, allowing my diabetes to go by the wayside is not the solution and never will be.


So here I am, taking each day as it comes, battling with the bad times, dealing with diabetes.

Almost Wordless Wednesday

My new room and home at University...

At my bedside.

My testing monitor and injections are in the black wrap.  GlucoTabs for in-the-night lows.  Monitoring diary to keep track.  Diet Coke because I love it!

 My mini-fridge in my room to keep my insulin supplies and Glucagen kit...

:)