Monday 16 May 2016

Diabetes Blog Week: Day 1 - Message Monday.


Let's kick off the discussion by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you Heather Gabel for this topic selection.) 

Why am I here? Honestly, I don't really know.

I started this blog when I was feeling a little lost. I was living abroad, struggling with my diabetes care, and I guess I was searching for that genuine "me too" feeling that I now have, thanks to this community.

My healthcare since my diagnosis has been far from sub-standard. I've always been lucky enough to have access to a good healthcare team, a DSN who is only a phone call away, a dietitian if I need to see one, and, most recently, psychological care, because the emotional side of living with diabetes is just as important as the physiological side.

Between them, they can help me change my insulin doses, hone in on my carb counting skills, teach me about different bolus settings on my insulin pump. But what they can't do is tell me they understand. That, for me, is where community comes in. I always say my healthcare team can tell my how to use my pump, but they can't tell me how to live with it. Purchasing a pump garter to stash my pump in with that dress or what to do with it in those intimate moments is only something you learn from those that live with diabetes (and wear an insulin pump) too.

So why am I here?

I've always referred to blogging as my diabetes therapy. Writing down my thoughts, whether privately or through this blog, helps clear my head. Seeing my thoughts in front of me helps me to organise and realign where I'm currently at, and in the same breath helps me see what I need to do to get to where I want to be. At the same time, it's my way of giving back to a community that has given me so much.

I always remember something Kerri writes in her blogs frequently, regarding her motivations for blogging, and that's that she googled diabetes during those pre-blogging years, and the results were scary. I cannot tell you how grateful I am that when I googled diabetes 6 years ago, I got blogs. People living with, owning, type one diabetes. They gave me hope for my future. They still do. And I will be forever grateful for that. I'm here to add another story to the hope column.

This week is Diabetes Blog Week (thank you to Karen at Bittersweet Diabetes for organising this for the seventh year running! Seventh!) To read more most from Day 1, please click here. For more information about Diabetes Blog Week, click here




Wednesday 20 April 2016

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!

Tuesday 29 March 2016

Six.

Things I've learnt having been sans insulin since 2010:

  • There's a life after diagnosis. 
  • There are times when diabetes scares me. It's not something I voice often, but it does. 
  • There are times I wish diabetes wasn't my reality. 
  • On the flip side, however, there are people I wouldn't have met if it wasn't for this disease. People that I can't imagine not knowing. 
  • And as much as I wish it wasn't my reality, what frustrates me more is that there are people in this world that don't even have access to insulin. And as much as I'd like a cure, I'd like to see insulin for all happen first. Because diabetes shouldn't be a death sentence. 
  • Sometimes, diabetes is funny. Sometimes it isn't.
  • Testing my blood sugar is the best way for me to keep my diabetes "on track" - I wish it were true that my pump just "sorts it", but it's just a tool that I choose to use to manage my diabetes, along with my Freestyle Libre. 
  • Diabetes and food is so complicated. But a healthy balance can be found. 
  • Diabetes changed me: it's made me more in tune with my health. I watch what I eat, I exercise, I see my health care team regularly. It's made me more appreciative of the world around me. It inspires me to do more, love harder and not let it hold me back. 
  • I have type one diabetes = I'm a person with diabetes = I'm type one diabetic. Some people have preferences about this. I personally don't. Bottom line: my pancreas doesn't work.
  • I am not alone. 
  • Knowing that, community and peer support has become as essential to my diabetes care as the insulin I infuse. 
  • Diabetes is not a character flaw. You accept me with it, not in spite of it
  • Disclosing my diabetes acts as a barometer for jerks. When disclosing, I'm carefully watching, looking at how the person reacts.
  • Emotional health is SO important: my blood sugars get chaotic quickly when my head's not in the game. 
  • NovoRapid ain't that rapid. 
  • Pre-bolusing is the one. As is actually carb counting, and not just guessing.
  • (The point above first came out as "Pre-blousing is the one. As is actually crab counting, and not just guessing" because autocorrect.)
  • Diabetes sometimes makes me cry, and that's okay. It can be a relentless fucker at times, and every now and then a good cry is what I need. In the same breath, I celebrate the victories too. I wear my heart on my sleeve, and it's totally okay to feel all parts of life, whether diabetes related or not. 
  • That time flies pretty damn quickly! When I was diagnosed, hitting five years with diabetes seemed like forever away, let alone getting closer to the ten year mark! 
  • That I can do this. 

Monday 28 March 2016

The Food Diary.

I've always avoided keeping food diaries. Always. There's a guilt that has always accompanied them, for me, so I've always dodged them, focussing my clinic appointments on other aspects of my diabetes care and not the food side of things. My blood sugars aren't exactly horrendous, so keeping my HCPs' eyes on other parts of my health, for the most part, is easy.

I had an appointment with my diabetes team last week. My hba1c wasn't where I wanted it to be, and I was told I'd put on weight. Not a lot, but, much like my hba1c, my weight is personal, and, again, it's not where I want it to be. As per usual, I kept emphasis on my ratios and basal rates, discussed my thyroid medication and my love-hate relationship with exercise.

With no mention of food or diet, I left my appointment and headed back to work before heading away on course the same evening.

It was Saturday evening, when I was sat watching X-Men with a (small) bowl of popcorn on my lap and a (large) glass of wine to my left that I wondered how I got here. I didn't feel hungry, but I was eating the popcorn anyway. And who knows where the glass of wine came from!! (Wine fairy, anyone?!)

That was when I resolved to keep a log of my food intake for a week. Not because I had to, and not because I was being told to by my health care team. But because I wanted to hone back in on my food choices and what I'm eating day to day. Because, it became very clear halfway through my movie that I had no effing idea what was happening day-to-day.

Now I'm coming to the end of my week of food logging, I remember why I don't like it. (Actually, it only took me a couple of days to remember why I don't like it!) It's not a level of accountability I enjoy or embrace, and I still feel guilty for some of my food choices. But (and I say this with SO MUCH reluctance) it's so damn useful. After just a few days, I could see that my coffee intake is shocking (and I can't even say the mug is small to make up for it), and my willpower is fine in the mornings and afternoons, whilst at work, but the moment I get home (or at weekends), I undo what has been, for the most part (let's ignore the caffeine intake) a balanced day of eating.

As insightful an exercise this has been, I'm happy to stop now. I know where the issues are, and I know what I need to do going forward. I'm glad to have made a conscious effort to realign my diabetes, brain and stomach. It's a step in the right direction to (hopefully) get my blood sugars back in check.

Wednesday 9 March 2016

Thinking About Blogging.

Hi *sheepishly waves from the safety and comfort that is behind my laptop screen*

I don't really know where to start. My time between blog posts seems to be getting longer and longer, and there are only so many times that I can make excuses for it.

So, this time, no excuses.

I somewhat lost interest in blogging.

Not because I didn't have anything to say, but because I needed to work out where I was at with regard to social media.

I love the Diabetes Online Community. I've said it time and time again: for me, it's as important as the insulin in my pump - emotionally, it keeps me grounded. Nothing beats understanding, particularly from those that are at a similar stage of life as me (twenties, wading through life not really having a clue where you're at, who you are or what you're doing, and T1D is along for the ride - if this sounds familiar, hit me up! We'll figure things out together :) ).


When I was at uni, I threw myself into the DOC. And I have no regrets over that - it's brought me some fabulous friendships that I wouldn't trade in for the world. The connections have been there through a hypo at 2am, the stories shared offering endless amounts of hope about my future with type one. But since leaving uni and entering the (exciting?!) world of employment, I've leaned towards being more of an avid reader as opposed to a contributor.

I needed to figure out what I wanted from the community, and what I wanted to contribute to it. (Because support required changes as often as insulin requirements - it's never static).

Blogs are something I love. Real life stories of living an *actual* life with diabetes are what I look for. Not only do they often resonate, but they also inspire me in terms of my future.

I loved (love) writing and blogging. It was (is) my diabetes therapy. I don't care how many or how few people read my ramblings (and this blog is most definitely a rambling!) One thing I have umm-ed and ahh-ed over, however, is privacy. How much of my life do I want online? This is what somewhat explains the blog tumbleweed. I needed to have a very long think about what I wanted online. Because we all know, once it's out there, you ain't getting that shit back.

And that's not always a bad thing. It's just a case of thinking about what I publish. You'll notice in past blog posts, real names are a no-go, particularly when it comes to my littlest friend (who's not so little these days, and will be taller than my 5ft1" self very soon, I'm sure!)

When I started this blog, I was 20. I was living in Spain (oh, tapas and sangria, how I miss you!) I was struggling and I was removed from my support network. So I blogged, blogged, blogged. Anything and everything. And, for the first time in a long time, emotionally at least, I felt better.

Now? Now, having had a long think about privacy, and discussions with a few friends, I've decided I want to get back into blogging. For real this time. Because the blogs found in this little corner of the Internet have helped and inspired me immensely. And I want to continue to put my story "out there". Providing a story that resonates with just one person makes it all worth it, in my opinion.

Monday 25 January 2016

Advocacy Guilt.

It was brought to my attention yesterday that January is Thyroid Awareness Month. (Well, in the US it is, anyway, but it doesn't change this post, nonetheless).
.

I had no idea.

Self care for my diabetes is so involved: I check my blood sugar, I wear an insulin pump, I count my carbs and dose insulin accordingly, I adjust my medication for exercise, stress and other emotions. I meticulously count the gulps of juice when I'm low to avoid over treating, and I do everything in my power not to rage bolus when my blood sugar is high and my insulin doesn't seem to be touching it (but I know it eventually will).

My family, friends and colleagues know I have type one diabetes. And to those that don't, I wear a medic alert bracelet, alerting them to the fact I have a health condition of some kind.

Self care for my underactive thyroid involves taking a tablet at 8.30am everyday.

That's it. My family, my closest friends and my boss know that I have an underactive thyroid. My family and closest friends, because I spoke to them about where I was at before I started thyroid medication. My boss, because I was at work when I got the diagnosis, and I had a little pity party.

I don't think about my thyroid and what it doesn't do in the same way I do my pancreas, and what it doesn't do (but I so badly want it to do). My lack of thyroid action doesn't impact my life in the same way my lack of pancreas action does. For the most part, diabetes peppers the background of my day, and my underactive thyroid I don't even consider an issue, as I just take my medication as prescribed, and that's it.

I wonder how different it would I only have an underactive thyroid, and no diabetes. Would I still consider it a "nothing issue" or do I just think of it like that because I'm comparing it to something that, in my opinion, is much more involved?

Would I be writing about my underactive thyroid in the same way I do my diabetes?

Who knows. I'll never know.

The point is, I feel somewhat guilty, as if I should be as eager to advocate about my "other health condition"' just like I am when it comes to my diabetes. But I'm just not into it. Maybe because I don't know enough about it? Or maybe, like I've said, compared to my diabetes, I don't even consider it an "issue"?

I don't know. But because it is Thyroid Awareness Month (and I still have a few days until February), I am going to research some blogs, and learn from those that are sharing their stories online like I am. (I'll also see if there's UK based awareness campaign for thyroid-related problems, and probably watch from the sidelines. I feel participating may be somewhat out of my comfort-zone, unlike talking diabetes online, which is my norm. We'll see!)

Because, whatever chronic condition(s) we live with, although we are not defined by it (them), it (they) does (do) help explain us (last line credit to SUM's tag line).


Sunday 24 January 2016

2016.

Oh, hey there! It's been a while, hasn't it?! I mean, we've not spoken since, what, last year?! Crazy, right? How have you been? I hope life's been treating you well.

Me?!

I'm doing really well thanks. Been off my advocacy/blogging game for a little bit, with other things taking priority, but I actually welcomed the break from the online stuff. I feel like I've been truly present in my "actual life" and that feels pretty darn good. As incredibly grateful I am for this little corner of the interweb, and the "me too" comfort I sought for a long time, sometimes a step back is what I need. Not because I no longer seek that comfort, but because I've found it's very easy to get so involved here, that I then start to neglect other priorities.


2016.

How did that happen?! Seriously?! (Happy New Year, by the way! I've just scrolled back up and checked - I've not said that yet. Very rude of me.)

My plans for this year?

They're pretty non-existent, I'm not going to lie. This year, I've chosen to not set resolutions. What's with the January pressure to do that anyway?! That, and 12 months is a really long time. There's a very good chance that what I "resolve to do in January" will be null and void before the end of the month! Things change, and I'm okay with that.

Instead, along with still pursuing balance, my plan is to...well...just go with it. Because, no matter how hard I try, navigating my way through my twenties isn't something I can plan to the letter. Plans change, life happens, and I just need to roll with the punches. It doesn't mean I'm failing, it means I'm adapting, and open to change.

I have no idea what the next 341 days have in store for me, but I'm excited to see where 2016 takes me.

Game on, life, game on.