Food, Guilt And Diabetes.

There's a lot of guilt that comes with diabetes. For me personally, a lot of that guilt revolves around my food choices. 

I feel guilty when I have a baguette for lunch, as I know that I really struggle to bolus for bread. 

I feel guilty when I indulge, even though I know it's not a regular occurrence.

I have a complex when I carb count my dinner and the total comes out at 90 grams - I feel like I should not be putting 90 grams of carb into my body in one go. 

Likewise, 90 grams of carb for me equates to 13 units of NovoRapid, and I also have a complex when it comes to injecting more than 10 units in one hit - I tend to split the dose. 

Image taken from Google Images.

And I hate it when other people call me out on my food choices, as, even though it's my diabetes, and I know what I'm doing, I still feel a level of guilt, as if they're right and I should know better.

It's a difficult balancing act, one I struggle with. I've written previously about my issues with food. It's part of the reason this blog was started.

This week is National Eating Disorders Awareness Week (NEDAW). Although this post isn't specifically about an eating disorder, it is about a disordered attitude toward food.

When I was diagnosed with diabetes, everything became about food: good foods, bad foods, carb-free (read: fun free) foods, knowing how different foods affect blood sugars, knowing how to count carbs, having to eat food when hypo. Food was at the forefront of everything for me, and, god forbid I saw food for what it was: food. 

This has lessened over the last year or so, and my attitude toward food is much healthier. It's not perfect, and I have my moments, but on the whole, it's positive. I eat healthily, but allow myself the treats, and know how different foods affect my blood sugars.

Food, guilt and diabetes. It's a delicate balancing act. 

[As mentioned, this week is National Eating Disorders Awareness Week (NEDAW). You can find out more by visiting B-eat's website and the Diabetics With Eating Disorders website (DWED)].  

    

Back To Basics.

I don't know what it is about February, but that seems to be the month where I go back to diabetes-basics. Maybe it's because in January I'm so caught up the whole "this year, I will..." that there's no room in my head for diabetes resolutions too. 

This month, I set myself the target of keeping a paper log of my blood sugars, insulin doses and any relevant notes. We're now nearing the end of the month, and I'm happy to say I'm still keeping a record of things! Although, I have to be honest and say I have found it quite a tedious task, especially knowing that my meter keeps a log of everything. 

But I have most definitely learnt a lot:

1. Exercise definitely makes my blood sugars plummet. 

2. My blood sugars also bottom-out when it's my time-of-the-month.

3. I regress back to a child-state when I colour in with crayons. 

4. Beer is not my friend when it comes to blood sugars, but I like it too much. 

5. I know stress tends to cause my blood glucose to go up, but I didn't realise how significantly until I had a grad scheme interview. Definitely need extra insulin when stressed.

6. Indian takeaway dinner - not my friend either, luring me into a false sense of security when I went to bed on a 6.9 mmol/l to then wake up to a mouth as dry as the Sahara Desert and a blood sugar of 15.5 mmol! 

7. Playtime, however, with my godson is great a lowering blood sugar. Sometimes a bit too much though.

Diabetes: it's a constant learning curve!

To Have Diabetes Or To Be Diabetic?

After hosting the Our Diabetes tweet chat last Tuesday, another conversation caught my eye:

"Thoughts on the word diabetic?"

As sad as this might be, I've spent a lot of time thinking about this. 

To be a person with diabetes. To be a person who has diabetes. To be diabetic. To be a diabetic. 

So many variations, and so many opinions about which is preferred.

I personally use all interchangeably. I can't say if it's a conscious decision or not, but in pondering this, I've come to the conclusion that it very much depends on the context of the conversation and who I'm engaging in conversation with.

When I'm with people I don't know very well, I say "I have diabetes" but when I'm with my family and other people I'm close to, I'll use the word "diabetic", and I think this is because I know my family and closest friends are well aware of the fact that there is more to my life than living with this chronic condition. But to those I don't know, I don't want to be remembered for that reason, as, like my family and friends know, there is so much more to me.

The way I see it, whether I use the phrase "I have diabetes/I'm a person with diabetes" or go the with adjectival form "I'm diabetic", the fact of the matter is the same: my pancreas still doesn't produce any insulin.  However, I'm sensitive to other people's personal preferences, and I understand why saying "diabetic" is disliked. 

For me, however, "diabetic" is just fine.

What I Should Have Said.

This weekend, Louise came to visit, and it was so much fun. We went to a local coffee shop in town and met up with a couple of other people with diabetes. It was lovely. It's the one good thing to come out of living with this condition: the people I've met. 

As we were sat there talking about various aspects of diabetes and our lives in general, we noticed a family at the table next to us. The child had a glucose meter and was working out how much insulin he needed to take with his food. I've not had a great deal of contact with children with diabetes, but they are always the ones that make my heart ache when I see them checking their blood sugar or injecting insulin.

Our tables were pretty close together, and I could see the child's parents nodding along to some of the things we'd said. And I wish more than anything that I'd said something. Anything. Even if I'd just got out my own blood glucose meter as some kind of sign that said "Hey! What you were doing earlier, checking your blood sugar?! I do that too!"

But I didn't.

And I think of my parents. They have very little to do with my diabetes-life, but when my Mum's best friend's son (that's a mouthful!) was diagnosed a couple of years after me (also as adult) they gravitated towards each other even more because there was another common bond.

Okay, this family may have had the support of people who understand.

On the other hand, they may not have.

So I wish I'd said something. A "You know what, this sucks, but it's not the end of the world either" or a "You're doing great", some words of encouragement.

But nothing. This is what I should have said:

This sucks. Diabetes sucks. But it's not the end of the world. And you know what? You really are doing great. I know it's not always easy, but together as a family you can do this. And your kid? He's a hero in my eyes.

But I didn't.

Instead, I just reciprocated the smile and slight nod of the head they gave us as they left the café. 

 

Five For Friday: So Cheered Up.

Tonight at Brownies we're making "Cheer Up Boxes". In short, each girl is going to make and decorate their own "cheer up box" and then write about something nice about each other girl in the group. At the end, each girl will be given the nice things written about them to put in their "cheer up box" to take home. Awesome, right?!

In keeping with this positivity, five things I like about having diabetes, because if I focus too much on the bad stuff, the burden of this crappy condition will eat me alive:

1. The DOC - I love it! It's "open" 24/7, 365 days a year, and there's always someone there to listen, and I've been lucky enough to meet some of them off line too. 

2. The fact that I'm very aware of my health - I watch what I eat, I work out regularly, things which, if I'm honest, I wouldn't worry about so much if it weren't for my diabetes diagnosis. 

3. Being able to organise my diabetes supplies when I pick up a new prescription from my GP.

4. When I empty the make up bag I use to carry my diabetes stuff in at the end of the day and see the pile of test strips I've used - okay, it sucks that I checked my blood sugar however many times, but it also leaves me feeling like I was really on the ball that day.

5. The fact that there's a badge from Brownies on my blanket for diabetes awareness.

What It Means To Me (Happy Birthday, Vicki's Notebook!)

Image taken from Google Images.

Today marks one year of blogging. 

On February 11th, 2013, I wrote my first blog post, giving the link to a very select few of my closest friends. 

For some reason or another, I started getting readers that weren't just those I'd given the link to. To this day, I am incredibly humbled to have readers, and I want to say thank you for taking the time to visit this blog, whether you're a long-time lurker or a regular reader. 

I've learnt a lot over the last 365 days thanks to this little bubble of the interweb, a.k.a The DOC.

There are stories written by a bunch of people that always leave me thinking "me too", like those of Lizzie, Daisy, Louise, Jen, Heather, Mike, Emma and Mark of The D Team.

There are incredibly raw accounts of being a parent of a child or children with type one diabetes, from Kev, Meri, Scott and The Understudy Pancreas, whose name I don't know, but blog I love to read.

There are the heartfelt accounts written by children and teens living with type one, such as Max's blog, and Brea's.

And I've barley even scraped the surface - there are so many more!

It's a constant reminder that we're in this together.

That's what it means to me.

Five For Friday: Random.

A very random list-of five for you this week.

1. The Spare A Rose campaign is live and kicking once again, and the blog posts I've read about it are brilliant (see Kerri, Scott, George, Kim to name but a few) so go check them out! And donate, of course!

2. As long as I log the rest of my blood sugars for today, I've managed one week of my month of logging. Success!

3. After Brownies tonight, I'll be heading back to Kent for the weekend for a number of reasons: 1) It's my godson's birthday next weekend, but this is the closest weekend to it that I could go home. 2) I also want to see the godson's lovely Mum, E.Hales. 3) And my family of course. 4) I have an interview for a grad scheme in London on Monday - much easier to get to from Kent. 5) I'm going to see Rent Monday night. Busy, busy, busy. Can't wait though!

4. Post-gym hypos are the worst. They pretty much defeat the purpose of even going to the gym in the first place.

5. I've offered to help out the Our Diabetes group with a few admin-type tasks. I'm not the most computer-literate of people, so I'm not sure how things will go, but I'm happy to be part of the team nonetheless!  

February: Month Of The Log.

Writing down blood sugars, insulin doses and accompanying notes, to perhaps help explain some numbers and doses, is something I'm awful at! I can never find a system that works for me. I've tried apps, such as the mySugr one, which I love, logbooks, spreadsheets, but after a few months (no, weeks) I start slipping and before I know it, I'm back to not logging anything again. 

Before my pump assessment appointment, I wrote down two weeks worth of blood sugar readings in my log book. My consultant also doubles as the head of pump clinic at my hospital, and her and I have a standing deal that I have to show up to appointments with two week's worth of blood sugars on paper. Whilst I was scribbling down the numbers, I said to my friend "I don't know why I don't do this more often, it's so much easier to see patterns!" 

During my appointment, my consultant asked me for my two week's worth of readings (in spite of being able to download them from my meter - I'm pretty certain she just wanted to know I was still upholding my end of the bargain) and she said to me "You write your readings down for us, which is great, but why don't you write them down for you? It's your health at the end of the day. I know people differ, and what works for one may not work for another, but it intrigues me that you do this for us, but not for yourself."

She made a very valid point. 

So, my target is one month. One month of logged blood sugars, insulin doses and notes to then take to my appointment toward the end of this month. 

I drew up a chart, all neat with spaces to log all the necessary information. But I knew I'd need something to keep me motivated to write everything down. So, I did a very grown up thing. I bought crayons. And stickers. Red for low blood sugars, green for high blood sugars (which I'm marking at 14.0mmol and above), stickers for the days I'm within my target range. 

February. The shortest month of the year. A mere 28 days. Month of the log. If I can't do it in February, I'm never going to be able to do it!  

Diary Of Food.

After my pump assessment appointment last week, another appointment was made for me to see a dietitian. 

This went down like a lead balloon. 

Of all the appointments I have for my diabetes, seeing a dietitian is probably the one I hate the most. I knew that the main reason for it in this circumstance was to make sure my carb counting skills were up to scratch. Nonetheless, not happy. 

"Vicki, do you mind filling out this food diary over the next few days so we can have a look at it when you come in on Friday?"

That paper book titled "Carbohydrate Counting Food Diary" is why I hate seeing the dietitians. 

I really, really don't like logging the food I eat. 

It's not that I eat badly or anything. Actually, given I'm a student and on a budget, I feel I eat pretty well. I love my fruit and vegetables, takeaways are a real treat, I always take my own lunch onto campus with me. Don't get me wrong, I also like the occasional cake with my coffee at Starbucks, or snack food when my housemate and I are watching the latest episode of Bones. I just know that in that moment, it's a treat, it's not an everyday occurrence, and if my blood sugar is on the high side after eating it, I'll deal with it. 

When it's written down, however, my mindset is different. I know it was a treat and I know it's not a regular thing, but when I then see it written down on paper, I feel guilty. Like I should have known better and realised that it would have an adverse affect on my blood sugar.

Consciously logging food. Not good for me. It brings past food-related issues back to the surface.

Food issues are complex enough as it is. Add diabetes to that and you've got an even more complex situation on your hands. It's something I've put a lot of effort into getting under control. I don't expect to ever be rid of them, but I'm at a point where my relationship with food is healthy.

I guess I was just reminded of how easy it is to go back down that road, something I don't want to do. The days/weeks/months/years spent controlling them, and the smallest trigger could cause a big setback.

All this from a paper booklet.

Damn you, Diary of Food!    

Interview: The Pendsey Trust.

Trying something new with this blog post. Today, I'm posting an interview with Lucy, founder of the charity The Pendsey Trust. Never heard of it?! I hadn't either until a few weeks ago, but I feel I should have as the work they do is inspiring!

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Vicki: Can you tell me a bit about yourself and your connection to diabetes?
Lucy: Hey! I'm Lucy - I'm pretty much your typical 24 year old. I work full time and have a pretty hectic social life; I love exploring all the amazing restaurants and bars in London as well as running and generally being active. I just happen to run a charity in my spare time. 

If you had asked me about my connection to diabetes a few years ago, my answer would have been remarkably little. My Grandfather had Type 2 diabetes and my cousin Charlotte was diagnosed with Type 1 when she was very young - so I had witnessed first hand the difficulties of living with diabetes in the UK and understood the basics of the condition. It is funny because a lot of people assume, because of what I do, I must have diabetes - which is actually not the case. This is a cause which pretty much found me!

V: What is The Pendsey Trust?

L: The Pendsey Trust is a small charity which provides access to educational opportunities for young people in the developing world, so that one day they can enter employment which will fund the costs of living with the condition and enable them to look forward to a happy, sustainable future.

V: How did The Pendsey Trust start?

L: The Pendsey Trust started in 2010, when I was working as a journalist. I represented the UK with Young Reporters Against Poverty and attended a series of conferences about international development issues in Brussels. I stumbled across a tiny conference run by IDF about the situation for those with NCDs (Non Communicable Diseases) in the developing world and with my small knowledge of the condition was absolutely stunned at the terrible situation facing individuals with Type 1 in these countries.

I successfully applied for funding from One World Media to travel to India, where I stayed with Dr. Pendsey, a remarkable endocrinologist who witnessed cases of children from the slums being brought to him on the verge of death by their desperate parents. There is no NHS in India, and with insulin often costing two thirds of a family's monthly income, so many children die for lack of the lifesaving drug. Dr. Pendsey and his wife decided that they must help and established the DREAM Trust, which ten years on has helped provide free insulin for hundreds of children from poor Indian families. 

When I returned to the UK I was so inspired by what I saw, and how terrible the situation was for those with Type 1 in the developing world, that I decided that I also must do something. Thus, after a lot of support from family and friends, The Pendsey Trust was born.

(The radio documentary I made and the accompanying blog is only at www.thedoctorwhodreamed.wordpress.com)

V: What countries does the Trust focus on?

L: We currently assist children and young people at Dr. Pendsey's clinic in India but as we are growing rapidly are hoping to take on more countries and help take Dr. Pendsey's vision to others with diabetes across the globe.

V: What are the main struggles for people with diabetes in the developing world?
L: This is a really interesting question. I have volunteered a lot in the developing world and the situation I saw for the young people was so much worse than anything else I had encountered. I would split my answer into several parts:

- Cost: As I mentioned before, the monthly cost of insulin and medical care for children with Type 1 is £14, which is around two thirds of a poor family in India's monthly income. In many cases, parents simply have to take the decision to let the child die, or in some cases the child's insulin comes at the cost of the education of all the children in the family. Where families try to provide insulin, often they cannot provide a consistent supply so the child suffers ketoacidosis (diabetic coma), stunted growth and other complications. 

- Stigma: I was horrified by the level of stigma surrounding those with Type 1 - largely due to a lack of understanding. I met children who had been forced to eat from different plates to other children as people believed diabetes was contagious, and for children who had to inject themselves at school, they were outcast and bullied.

- Women: Being a woman with Type 1 in India is a curse. Women with Type 1 are not considered to be suitable marriage partners and therefore are thought to be worthless. Many hide their condition from their partners, and others are abandoned when their diabetes is discovered. They are considered to be a shame upon their families. 

- Access: Even when insulin is available, there are issues of access. In many cases only a few weeks supply is available at a time and the parent of a child must give up at least a day of work and the cost of travelling to the nearest city to a hospital to pick up the insulin on a regular basis. Most rural villages do not have electricity and in the baking Indian sun, storing the insulin is almost impossible.

All of these issues have fallen below the radar of international development media, unlike with conditions like AIDS and Malaria which have received widespread global attention.    

V: The charity also aims to provide access to education. Why?

L: One of the things that most inspires me about Dr. Pendsey's work is that he had endeavoured to send as many of the children as possible to school, or suggest vocational courses for the young adults to attend. Just £40 sends a child to school for a year, or £60 pays for a sewing machine to enable a young woman to start a tailoring business. These are tiny amounts of money to us, but literally change lives as by entering a well paid job, those with diabetes are able to break free of the cycle of poverty and transform their lives. I met an inspirational young woman, Manda, who had become a nurse with Dr. Pendsey's assistance and was now funding her own medication, assisting her elderly parents, earning more than her husband and destroying the stigma around condition as she was considered a 'dream girl' by others in her society. She was also giving money back to help others at the clinic with diabetes. 

My dream was that The Pendsey Trust would be able to help individual break free of the situation facing them through education, and to take Dr. Pendsey's image that education is they key to a sustainable future to others both in India and globally. 


V: What does it take to set up a charity such as this?
L: It was a long and complicated process but we were lucky to have the support in the form of a mentor from the Small Charities Coalition, who had a meeting with us and talked through the basics. Then it was a case of thinking carefully about what we hoped to achieve, writing a constitution, choosing trustees, and getting a bank account. And a long wait for our HMRC small charity number.

It has been fantastic so far though and I cannot believe how we have grown. We aimed to earn £5,000 in our first year - we have raised over £7,000 and are applying to become a fully registered charity, and have had great fun hosting events from quiz nights to hog roasts. We have also developed a supporter base and were proud to be chosen as one of Newcastle University's charities for their RAG week in January 2014. 

Of course, most importantly, is how far all the money raised has gone. That is a lot of £40s! Most recently, we paid for five young people to attend a vocational training college for six months, after which they will graduate and be able to gain employment in their chosen careers - changing their lives forever.

V: How can others get involved with The Pendsey Trust?
L: As a tiny charity, we need all the help we can get! Whether this is by organising fundraising events for us (£40 sends a child to school for a year!), commiting to a monthly donation, writing blogs/tweeting about us or attending our events. We always love to hear from new people and need all the ideas we can get as we are a young and friendly bunch and still learning. You can email us at admin[at]thependseytrust[dot]org or tweet us @pendseytrust.

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To find out more:

Website: www.thependseytrust.org

Email: admin[at]thependseytrust[dot]org

Twitter: @pendseytrust
Facebook: The Pendsey Trust

Lucy's documentary: www.thedoctorwhodreamed.wordpress.com

DREAM Trust website: www.dreamtrust.org 

And, finally, a huge thank you to Lucy for agreeing to do an interview. I absolutely love the work that you do and look forward to hopefully doing something to raise some money for the charity.