I Wish People Knew That Diabetes...(The 2016 Edition).

Round of applause for Kelly Kunik for this initiative!

I took part in this initiative last year. 2015's version can be found here.

I wish people knew that diabetes is my constant giver of perspective.

Although bad days cause me great frustration, I also find myself eternally grateful for the access I have to insulin, test strips, tech, a healthcare team and the DOC. One minute, I want to throw my pump at the wall, the next I remember how incredibly lucky I am to have it. I moan about how bulky my meter is, but then I tell myself to quit complaining because at least I have one, and one I didn't have to pay for. I ask myself "why me", and in the next breath wonder where I'd be now if I didn't have it. Because as much as it doesn't define me, it changed me as a person.

I wish people knew that diabetes takes up a lot of space in my head and heart.

From perspective to blood sugar balancing, gratitude to fear. I've learnt to manage that aspect, and I try not give it more space than it needs, but I'm only human. We're only human. And sometimes, diabetes needs a bit more space before you're able to shove it back in it's box. Community helps a lot with this. And it's why I'm grateful (gratitude's back) for #IWishPeopleKnewThatDiabetes Day. And Diabetes Blog Week. And Diabetes Awareness Week. Peer support is powerful, and makes me feel all the feels. So if you need a great big cup of "me too" (which today has 100% been), please go check out the hashtag on Twitter. It's a virtual group hug if ever I saw one!

November.

Here we go again, November. 

Diabetes Awareness Month. 

A whirlwind of campaigns and blogs all aiming to raise awareness of diabetes, whatever the type, with World Diabetes Day falling in the middle of it all (November 14th). 

This year, it seems to be kicking off with the JDRF campaign T1D Looks Like Me. 

Whilst my aim this November is to shine a bit of a spotlight on diabetes and raise awareness, I'm also hoping to pay some attention to some other advocacy efforts that are taking place. 

November doesn't just mark Diabetes Awareness Month. It is also Lung Cancer Awareness Month, Pancreatic Cancer Awareness Month, Alzheimer's Disease Awareness Month, Stomach Cancer Awareness Month, Mouth Cancer Awareness Month, Movember...I could go on!

By writing blogs and campaigning like we do through November, we hope to reach a community wider than our own DOC bubble. I'm sure those adovcating for other health conditions throughout November hope to do the same.

So whilst advocating for myself, I'm also going to listen to others outside of my bubble.

November, let's go!

Insulin For All.

Diabetes Awareness Month and World Diabetes Day are fast approaching, and I'd like to make you aware of a returning campaign in the run up to November 14th.

Last year, Liz from T1 International and Lucy from The Pendsey Trust got together and created a campaign with the resounding message being "Put the world back into World Diabetes Day" and it was a huge success.

This year, the message is going to be slightly different - "We are the world in World Diabetes Day" - but the aim is the same - insulin for all.

I've written a lot about this (see here and here) and, out of fear of repeating myself, I'm not going to go on in this post. But I will say this (and repeat myself anyway): insulin is not a luxury, it is necessary to live. Every single person in this world diagnosed with diabetes deserves a chance at living with it, no matter their age, background, country. The fact that type one diabetes is still a death sentence in some countries is shocking, especially in the year 2015.

So, how can you get involved?

It's pretty simple. Like last year, the main premise is to take a picture of yourself holding a sign that says "We are the world in World Diabetes Day" and share on social media with the hashtag #insulinforall

And if posting a selfie isn't enough for you, feel free to check this list out. 

I have no doubt there'll be more to come in the lead up to WDD :)

Dealing With Diabetes (Written By PWDs).

A little while back, I received an email from a guy named Joe. He works for a company called Voucher Codes Pro, and was writing an article about dealing with diabetes to be published on their site. I was asked to contribute something, which I did (disclosures and all that). And I'm sharing it here with you because I think it's a great piece that Joe has put together.

"I'm Joe, I'm 26, and a type 1 diabetic, and part of the content team here at Voucher Codes Pro. Not the smoothest opening line to your possible future wife, is it? I was diagnosed at the ripe old age of 18 when I was about to venture into the world of booze, university and relationships. Thanks to a pancreas that was more interested in taking a permanent holiday than producing the insulin my body so badly needed, I knew I had a battle on my hands."

To read the rest of his article, please click here.

And, thank you, Joe, for asking me to contribute! 

Diabetes Blog Week: Day 4 - Changes.

Today, let's talk about changes in one of two ways. Either tell us what you'd most like to see change about diabetes, in any way. This can be management tools, devices, medications, people's perceptions, your own feelings - anything at all you feel could use changing. OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes. Were they expected or did they surprise you?

The biggest thing I want to see changed? 

Access. 

Access to insulin.

Access to glucose meters.

Access to test strips.

Access to education to learn how to live a life with diabetes.

I've written about it before. Many times. And I've spoken with those working on changing this. Insulin isn't a luxury, it's necessary to live.  

To read more posts for day four of Diabetes Blog Week, click here.

I Wish People Knew That Diabetes...

Hat tip to Kelly Kunik of Diabetesaliciousness for this one! Here we go!

I wish people knew that diabetes is hard. People with diabetes may make it look easy, but it's not. And there is no time off - it's something I manage and make decisions about 24 hours a day, 7 days a week, 365 days a year.

I wish people knew that diabetes brings me a lot of guilt.

I wish people knew that (sometimes) diabetes makes me cry, whether it be over a stubborn high blood sugar, a low that just won't come up, frustration over a kinked cannula or just grieving for the life I had pre-diabetes, when I was 17 years old.

I wish people knew (and sometimes I need reminding) that diabetes is not a character flaw. I spent a long time thinking it was and hiding behind it and I feel I missed out on a lot because of that. It is not a character flaw. Just a small part of a greater whole.

I wish people knew that diabetes doesn't have a certain look about it. People don't "look diabetic", there's not a certain physical description you need to fit to have diabetes. It's a disease that doesn't discriminate.

I wish people knew that diabetes isn't cured by eating less sugar and exercising more. Okay, I find watching what I eat and exercising helps make it a little bit easier to manage my diabetes, but it by no means jump-starts my pancreas into producing insulin again.

I wish people knew that diabetes isn't cured by my insulin pump either. Just because I no longer do injections on a day to day basis doesn't mean I'm cured. My insulin pump is just the device I choose to use to manage this thing, and it's what works best for me at this point in time. (Also: my insulin pump doesn't mean I have the "bad" kind of diabetes.)

I wish people knew that diabetes is an unpredictable fucker: you can do everything exactly the same, two days in a row, and see completely different results. And it's a bit of a mind-fuck for a while as you try to work out why.

I wish people knew that diabetes-related paraphernalia is a luxury, and one I don't take for granted. I'm incredibly fortunate to live in a country where we have an NHS, meaning free health care. I don't have to pay for my insulin, my insulin pump, my glucose meter, the test strips that go with it, lancets...nothing! Yet there are still people in this world that struggle with gaining access to insulin. And that makes me angry.

I wish people knew that diabetes has caused me to see food as a number before I see the food itself. So when I go to delve into that lovely lemon poppy seed muffin from the coffee shop at work, know that I know exactly how many carbs are in that and how to bolus for it.

I wish people knew that diabetes, for all the things I hate about it, has brought be some of the best friendships. People that I can't imagine not knowing. And that screws with my head as well. Because SO MANY wonderful people have entered my life as a result of this diagnosis. I want to keep the people, but kick the diagnosis. But it doesn't work like that. I know that I can't have one without the other. And I think...no, I know, that I will always choose the people over a life without diabetes. Like I said, some of the best friendships, both online and off.

Zero.

So, this happened:

"It's oddly satisfying when the insulin left in my pump is at zero on cartridge change day"

Insulin isn't something I take for granted. I'm so extremely lucky to have access to it. All I have to do is go to the doctor, put in a repeat prescription, allow 48 hours for the doctor to process it and get it to the pharmacy and then pick it up. Same routine for my test strips, lancets, needles for my insulin pens.

And I don't have to pay, thanks to my medical exemption card.

But not all people are so lucky. For some, insulin is like liquid gold: unaffordable and inaccessible.

Insulin isn't a luxury, it's necessary to live.

The Spare a Rose campaign is live once again. The concept is SO simple: one rose costs about $5 (so, what £3.50 roughly?!). Buy your loved one one less rose this Valentines' Day, and donate that money to Spare a Rose. That money provides one months' worth of insulin through the IDF's Life for a Child programme. One month of life. Your loved one still get flowers (or whatever else you choose to buy them - I feel I should make it clear that this concept isn't exclusive to those who buy flowers!) and at the same time you help a child.

So let's share the love this Valentines Day, and help spread the word.

Spare a rose, save a child.

#WalkWithD And Donate.

Source.

It's beautifully simple: Between November 1st and November 30th, LifeScan (part of Johnson & Johnson) will donate 100 blood glucose monitoring testing strips to the International Diabetes Federation's Life for a Child for every posting connected to the social media campaign #WalkWithD. (Source).

I told you. Beautifully simple. 

If you don't know, Life for a Child works to help children with diabetes in developing countries. The programme aims to provide:

• Sufficient insulin and syringes.
• Blood glucose monitoring equipment.
• Appropriate clinical care.
• HbA1c testing.
• Diabetes education.
• Technical support for health care professionals.

I'm lucky enough to have access to all of the above, and I know that my health care professionals have access to technical support too. But there are still far too many people in this world that don't have access to insulin, let alone blood glucose monitoring equipment and clinical care.

So this November, hashtag away! #WalkWithD. And help those that aren't lucky enough to have the access we do to the tools that help us manage our diabetes.    

Putting The "World" Back into "World Diabetes Day".

This year, for World Diabetes Day, T1 International and The Pendsey Trust have joined together to form The Access Alliance and have create a new initiative: #InsulinForAll. 

Taken directly from the website: 

"Many people living with Type 1 diabetes struggle to survive because they cannot afford their insulin or keep it cool, for example. Others do not have access to blood glucose test strips or other essential diabetes management tools.

Although World Diabetes Day began in 1991 in order to 'draw attention to issues of paramount importance to the diabetes world' we feel the spirit of the day has been somewhat lost. We believe World Diabetes Day should be used to raise awareness of the most pressing diabetes issues. We want to inspire action within the diabetes and global community to find sustainable solutions to these life and death issues for people living with diabetes worldwide."

This is my advocacy itch. My mobile is a luxury. As is the laptop I'm using to write this post. And my iPod. And my insulin pump. But the insulin that I put into my pump, that's not something I consider to be a luxury. It's something that I consider necessary. Not wanting to sound too dramatic, but put quite simply: without insulin, I die. And no one should die from a lack of insulin.

So, to kick off Diabetes Awareness Month (a few days late, I know!) I'm joining the campaign. 

Because insulin isn't a luxury, it's necessary to live. 

You ARE An Advocate.

On Tuesday, I ran the Our Diabetes Twitter account. With Diabetes Awareness Month just around the corner, I decided to talk about advocacy. The very last question I asked was the following:

Do you consider yourself to be an advocate?

A number of the responses to this question can be summed up with one word: No.

Don't get me wrong, there were some people that responded saying yes, but I didn't feel like "yes" was the majority.

But here's why it should have been. (In my opinion, at least!)

It doesn't matter how big or small your act of advocacy is, what ever effort you make means that, in my eyes, you are an advocate.

If you write a blog, you are an advocate.

If you take part in discussions online, such as the Our Diabetes chat or the GBDOC chats, you are an advocate.

If you talk to your local MPs, or write to them, about diabetes-related issues, you are an advocate.

If you give talks at conferences, you are an advocate.

If you give talks in your local community, you are an advocate.

Hell, if you just give a talk diabetes with the person that sits at the desk opposite you at work, or someone who asks what you're doing when you check your blood sugar, you are an advocate.

If you tweet about your diabetes, or write a Facebook status, or post a picture on Instagram of something diabetes-related, you are an advocate.

If you correct a comment, or speak up about a stigma, you are an advocate.

I used to think that to be considered an advocate, you should do something HUGE (all caps), but I no longer believe that to be the case. It doesn't matter how small or insignificant you feel your act is, it matters. It all matters. You are an advocate. And for that, I thank you.  

TALKing Hypos.

This week (September 29th - October 5th) is Hypo Awareness Week. "The aim of Hypo Awareness Week is to raise awareness of hypoglycaemia in the inpatient setting to help hospital staff recognise and treat symptoms and refer patients to the appropriate care teams."

NovoNordisk: Official partner of Hypo Awareness Week 2014.

This year's theme is "TALK hypos" (Think, Ask, Learn and Keep track of [hypos]), encouraging people with diabetes to discuss hypos with their health care teams and vice versa.

My hypos come in various forms but, more often than not, I look like I've got it together, despite how debilitating a low blood sugar feels. There's a video by Kerri Sparling of Six Until Me, in which she video-blogs whilst low. 

"I look and I sort of sound like I've got my shit together, but I don't. I felt so shakey and, actually, after I turned off the camera, I was talking to myself this was stupid, why did you do that? And then I kind of sat on the floor at my house and waited ten minutes for my blood sugar to come up and it was really weird, because it felt so debilitating, but it didn't look really debilitating. It looked...I could have fooled somebody into thinking I was fine."

 

For me, this is why we need to talk hypos: just because we may look fine in that moment, it doesn't mean we are. That, and it's also important to acknowledge that hypo symptoms aren't universal (check out the question Diabetes UK tweeted this morning). So this week, I'll be joining in the discussion, both online and with my (new) GP.

 

For further information about Hypo Awareness Week, click here to be taken to the Diabetes UK website. Also, you can watch the latest videos by Type 1 Uncut, discussing hypos and hypo hangovers.

 

The Summer Of 100 Bikes.

Yesterday, I was sent a video link from The Pendsey Trust, and it made my day. Today, I'm hoping it makes yours.

Show Me Your Pump!

It's been all over the diabetes online community, and other media outlets for the last few days. #ShowMeYourPump is the initiative of Sierra Sandison, the very recently crowned Miss Idaho, who realised her goal with an insulin pump clipped to her hip. 

Since then, she's encouraged people with diabetes to wear their devices (if they use them) proudly, and to post photos on Facebook/Twitter/Instagram with the hashtag #ShowMeYourPump. The hashtag has not only gone (still going) viral, but it's also putting type one diabetes in the spotlight, raising awareness and inspiring others.

I'm not going to lie...since getting my insulin pump, I've always hidden it somewhere on my person, whether it be in a pocket, in my bra or clipped around my leg with the help of an insulin pump garter.

Diabetes is a huge insecurity of mine - it's the one thing about me that I can't change, no matter how hard I try. So the thought of wearing my insulin pump for the world to see...it's daunting for me, and I'm sure there are others that feel the same.

That's why the #ShowMeYourPump hashtag is so awesome: it shows people from all over the world wearing their pumps with pride. It's been a better pick-me-up than my coffee this Monday morning!

So, adding to the Monday-morning-happy, my contribution to the #ShowMeYourPump feed. 

And a huge well done to Sierra for having the courage to strut her stuff with her insulin pump on show, and for winning Miss Idaho. I wish you all the luck in the world in the Miss America pageant. 

   

Air Time.

A couple of weeks ago, I wrote about Lucy and Alice's Fixers project, and how it was due some air time. The broadcast was actually yesterday, on ITV Anglia, but I can now share the clip here! 

Oh yeah, and I'm in it...albeit briefly, and a little uncomfortably! It was way outside of my comfort zone, but I believe in the project wholeheartedly, and, as I said in my first post about on this, I'm so incredibly proud of those behind it! 

Make The Grade.

"Make The Grade" is a Diabetes UK (DUK) campaign that tackles the problems children with diabetes face in schools. Taken from the DUK Make The Grade page, "sadly, too many children with Type 1 diabetes aren't getting the proper care they need - meaning both their health and education are suffering." This shouldn't be the case, and thankfully there has been a change in the law, and "from now on schools are legally required to look after children with medical conditions, including Type 1 diabetes."

I was really made aware of the campaign when Andy, Dad to L, a 10 year old child with diabetes, shared it on Twitter, rather proud of his son's contribution to it (and rightly so!) Since then, I've dipped in and out of the conversations around this subject, but, out of personal interest, remained up-to-date with it. 

Yesterday evening, there was a "Make The Grade" event in London (I know very little of the event, other than what was tweeted, so apologies for my vagueness here!).

This was the first tweet I saw:

Image from @DiabetesUK

And I just exploded with pride!

You see, what I didn't realise, until I read Kev's blog post yesterday, was that L was excluded from a residential trip because of his diabetes, which I think is horrific. What's more, he's not the only child with diabetes to be facing problems like this. 

So seeing the tweet above, and the ones that followed it that said "I don't let my diabetes stop me from doing the same things my friends do and I enjoy going on adventures" and "My school is great [L ended up moving schools]. They make me feel safe and happy", made my heart hurt and burst with pride at the same time, if that's even possible?!

Being diagnosed at 17 means that diabetes hasn't touched my childhood. It barely even touched my teenage years. It has, and will only, touch my adult life, and, rightly or wrongly, I'm grateful for that. So when I read about the incredible things that children with diabetes are doing, like L talking about type 1 diabetes at school and Amy, Kev's daughter, talking at the National Paediatric Diabetes Team Meeting, I'm inspired, and they make me feel proud to be a part of the diabetes community, online and offline.

They're real-life superheroes, as far as I'm concerned. But without the masks, as they don't need them. They have capes though. Who wouldn't want a cape?!

To find out more about the "Make The Grade" campaign, please click here, where you will also find further web links!     

(Almost) Wordless Wednesday: Oh, How Times Have Changed.

Today, I'd like to share with you an infographic, brought to my attention by BioSupply UK, which looks at how the way in which we diagnose diabetes has changed. It makes me feel "lucky" to be diagnosed now, and not at a time when things as routine as blood tests weren't even available! I'm incredibly grateful for the access to medication and health care I currently have.

I've done everything I can think with the image to make it as big as possible, but I've not once pretended to be good at formatting/html related things! (It's something I'm working on.) There is, however, a link to a clear, easy-to-read version underneath the image! 

Happy Wednesday!

http://www.biosupply.co.uk/content/10-how-do-you-diagnose-diabetes-ancient-vs-modern-infographic

 

Diabetes Week 2014: #ICan.

In case you didn't know, this week is Diabetes Week 2014, and the theme this year is full of positivity and empowerment: I Can (#ICan on Twitter).

 

I'm going to be honest and say that, initially, I wasn't too sure about the theme, because I can do the same as what non-pancreatically challenged folk can do. There's just diabetes-related stuff going on in the background. For me, it's a small part of a bigger whole. But then I starting reading the #ICan tweets and my mind was changed completely! If you haven't already checked them out, please do so! They are so full of happy, varying from athletic achievements to supporting loved ones with diabetes, having a blood sugar within [your personal] target range to acknowledging the fact that you can correct a high blood sugar thanks to things like insulin pens and pumps. Yes, we're all living with diabetes, but the things we're all doing with it...in spite of it...because of it...AMAZING!

 

I spend a lot of time worrying about my diabetes, and how it will come into play in my future. I know that the numbers my glucose meter throws at me are just that - numbers - but I still feel the stab of guilt when my blood sugar is high, wondering where I went wrong, or I immediately regret whatever it was I let myself indulge in earlier in the day. When my Hba1c comes back, again, I know it's just a number, one that tells me where I'm currently at so I can make changes to get to where I want to be, but I still get upset when it's gone up. I worry about how my health care appointments may be viewed by future employers now that I'm finished with university; meeting someone and having to explain diabetes, and, thinking even further ahead, what if I decide I want to do the whole kid thing? How will my diabetes impact that?

 

This is where the #ICan tweets come in, along with the DOC as a whole: proof that we can live normal lives with diabetes. We can work to bring our hba1c's down, fall in love, have careers, start families, climb mountains, run marathons, go out with our friends, support others living with diabetes. 

 

So, now it's my turn:

 
#ICan acknowledge that, in actual fact, I have no idea what I'm doing, but (fairly) good control and other dreams are what I am pursuing. And when diabetes makes me want to admit defeat, #ICan rely on you, the DOC, to help me back on my feet.  (Unintentional rhyming going on there!)

 

Because, as far as I'm concerned, you guys are awesome, my proof that a life lived well with diabetes is possible. So for that, I raise my glass to you, and say thanks. 

Happy Diabetes Week, everyone!

 

 

 

 

 

Day Of Diabetes: Take Two.

It started with a tweet from Kerri (blogs at Six Until Me) about doing another day of diabetes, and that was it: members of the diabetes online community started to come together saying they would do one too. The date was set (last Thursday (April 10th)), and since it had been a while since the first one I did, I decided to also participate. Here's a look at my second day of diabetes (well, not my second day of diabetes, because that was over four years ago now, but my second #dayofdiabetes).

6.9mmol on waking - great! And I'm a huge fan of the pre-bolus. It's not always convenient (like when I'm grabbing lunch between classes) but where possible, I like to pre-bolus. Usually, I find less of a spike after my meals. However, recently, I've had trouble just getting my blood sugar levels down into single digits. The change in routine that comes with being back at my parents' is having a huge affect on my blood sugars. 

13.9 after breakfast - not a reading I was happy with. But went for a walk in the hope that it would bring me down a bit, which it did. I was at 11.1mmol before lunch. For lunch, I played it safe with a salad and some mango and added my correction bolus to the bolus for the meal. Frustrated doesn't even begin to cover how I felt when my blood sugar clocked in after at 14.3! 

I've played with the settings on my meter so that when I get a reading of anything above 14mmol, an hour later it will alarm to remind me to re-test my blood sugar. The 2u correction dose I took for the 14.3 was taking effect, as an hour later I was at 11.3. 

I was at 8.6mmol before dinner. Seeing single figures made me so happy! I carb counted my dinner and the bolus wizard on my meter suggested 12 units of NovoRapid. I tend to find that split doses work so much better for me in the evenings, so I took 8u before dinner and the remaining 4u after. 

9.30pm rolls round, and it means it's time for me to take my levemir. I take 10u once per day, and usually inject it in my leg. Following this, I also did my post-dinner blood sugar check. Once again, I was high, and that feeling of frustration settled back in. I took another correction dose hoping that it would bring me down some before bed. For me, the problem with correction doses close to bed time is that I then need to set my alarm for 3am. Well...I say I need...it's kind of my own ruling - if I have to eat something to bring my blood sugar up a bit or correct a blood sugar, I also check my blood around 3am to make sure I'm still within range - I'd much rather deal with broken sleep than I would the hangover-like feeling after a hypo or the lethargic feeling that come with a high. 

I was down to 12.4mmol before bed. I set my alarm, feeling (you guessed it) frustrated at the highs, reminding myself that tomorrow is a new day and I can try again. And again. And again, if I have to. 

And that's exactly what I'm doing, trying to get these highs under control for the next 7 to 10 days, after which I'll be back in Norwich, and hopefully more stable blood sugars will feel more within reach too!

You can check out all the tweets from me, and many other people by searching for #dayofdiabetes on twitter.  

 

"Be Proactive To Diabetes, Not Reactive."

Not many words from me today. Instead, I'd like to share with you a video that popped up on my Facebook news feed from the International Diabetes Federation (IDF). I took a lot away from it, particularly the quote that I have used as the title of this post. Enjoy!

100 Campaign.

YESSSSS =>

"No one should die from lack of insulin.
Global campaign aiming to achieve 100% access to insulin by the 100th anniversary of its first use."

What are you waiting for?!

Go and 'like' the Facebook page!

Follow on Twitter!