Wednesday, February 3, 2016

There is No Freedom with Diabetes

Sometimes I hear how certain technological advancements will give people with diabetes freedom to do what they want and when they want. People even claim this about insulin in general, giving children and teens the opportunity to live a full life.  We praise the idea that people with diabetes can accomplish anything, for instance, people quote my accomplishment of climbing Mount Kilimanjaro as proof that we as diabetics can do anything. Heck, I am pretty sure I have ever said that.

While this is mainly true, there is no freedom in living with diabetes. For instance, someone with diabetes is constantly thinking in terms of carbohydrates, how they feel, wondering what their blood sugar is and overall trying to navigate their day based on their diabetes.   I have an insulin pump, CGM, a fridge full of insulin and a drawer full of strips and I am not free.  

Recently I just got back from a vacation in the Caribbean. I am a seasoned traveler so packing for my diabetes comes easily, however the trip is never the same.  I could have a great day of blood sugars or a day full of highs [more likely the latter] I am having to take time to change my site, fill my reservoir, clip & unclip my pump and make sure that all my supplies are safe during my duration.  The fear of running out or losing diabetes supplies on vacation is very real. 

There is no freedom in that.  There is no freedom in waking up having to eat right away because you're dizzy, there is no freedom in waking up countless times in the night to use the bathroom because your blood sugar is high.   It doesn't matter if you're stocked with supplies to last a lifetime, or just enough for the week, diabetes does not give you any freedom. 

I am thankful, don't get me wrong. I am so thankful that I have supplies & that I was diagnosed at a time of such great technology and medicine.   But, there are moments when my pump can feel like a ball and chain. I wouldn't doubt that being on injections would feel the same way.    So remember next time you're talking with someone with diabetes, they have a lot on their mind and there isn't a moment that passes that diabetes can be forgotten.  

Kayla 

Tuesday, January 19, 2016

Calories & Carbs

The moment I realized that counting calories was somehow more important to me than counting carbohydrates was a moment that has stuck with me.  Last week I went to the diabetes education centre for a three month check-in.  Before my appointment I had to fill out three days worth of food logs including the carbohydrate count and the doses of insulin.   Of course I left this to the absolute last second, just before bed and my appointment was at 9 a.m the next day.   

Luckily for me, I didn't have to think back, trying to imagine what occupied my plate three days ago, instead I pulled out my food diary and copied down the food that I wrote down.  It was all accurate, I don't neglect to write a food item down, but the only missing thing was something very vital to diabetes, the carb count. 

I don't always keep a food journal or keep up to date on apps like MyFitnessPal but when I am looking to make healthier choices, lose weight or maintain my weight I need something to hold me accountable. So, that is when I begin logging down what I put into my mouth, including the calorie count so I know what my limits are, both for minimum and maximum amounts of calorie intake. This system works for me, and while sometimes I question its control over me, I know that if I wasn't keeping note, the pounds would find their way to me somehow.     

But, the issue is that while I know basic carb counts for most of the things I consume, they are not my focus, and really haven't ever been. Not as much as I think they should be.   I spend way more time looking at the calories of food than I do at the carbs and mostly because I know a majority of the food I am eating, which is mainly wholesome, non-packaged food, so I don't bother in knowing the specifics, but rather guesstimate a good chunk of the time.


And, I am not awful at it.  In fact since I began food logging again {December 29th} I have rarely had high blood sugars and instead have gone low more than ever, reinforcing that no carb is made alike. My nurse and dietician were very happy with my blood sugars and the extensive checking I have been doing, but all in all when I had to fill out those food diaries I spent a good chunk of the time scanning my cupboards, googling and estimating how many carbs were in the food I was consuming.  Calories, were so vividly marked all over the page, I knew exactly how many calories I consumed each meal, each day.  

Like I said, in that moment I realized I was paying a whole lot of attention to calories and neglecting to think about the carbohydrates. Both things really do have an impact on my body and how in the world am I going to manage my diabetes if I am not thinking very wisely about how many carbohydrates are in each thing I am eating.  [Needless to say, I am not eating high carb food] but it is still important. 

Growing up I always struggled with body image and weight. I remember the teasing and comments that have been said in the past, many, many years ago and despite being so long ago they have always stayed in the back of my head.  Losing weight and seeing myself in a positive light has likely been on my mind since late elementary school and after being diagnosed with diabetes, health really came a key component in my life, never have I ever seen so many doctors, dieticians and nurses nor had to look at food in such a practical light. 

Diabetes gives us an outlook on how food effects our bodies and minds and while at times it can become incredibly unhealthy and obsessive  there are moments when we need to step back and think about what is important, losing weight to be 'skinny' or being healthy.   For me, not properly counting carbohydrates is not okay, and I need to regain that focus.  I can check my blood sugar fifteen times a day, but if I am not giving proper doses for my carbohydrates, what good am I doing? 

Kayla 


Monday, January 11, 2016

Recap

It has been a long while since I last sat down at my desk to write.  I must admit, life has gotten so busy that I haven't really been doing much of anything that revolves writing and I am starting to miss it.  Part of me thought about leaving the blog for good. Parting ways with something I started in the days after diagnosis, but a part of me just couldn't think about letting it go.  So, here I am attempting to revive the blog and at least try to remember to post once in awhile.

Since the end of September [when I last wrote] I did a couple of things.  First, I went to Vancouver, B.C to the IDF - Young Leaders conference.  This is the same conference I attended in 2013 in Australia.  It was so great seeing familiar faces that I met in Australia, but also it was nice meeting some new faces. That sad part is always saying goodbye, and even worse, not knowing if I will see them again. My training for the young leaders program was completed and I decided not to run for an elect position.  Reason being? I have realized a couple things, I take on too much and I need to focus on the things I have in my hands at the moment. It is great being an ambitious person, but at the same time, it's not always practical.

The second big thing was going to Barbados to see someone very special get married. Way before Kilimanjaro, I had a pen pal - actual hand written pen pal named Krystal, and then, a couple years later, I climbed Kilimanjaro with that very person, then a couple years later (two conferences, Australia & Canada) I was invited to attend her biggest day.    It was so surreal and I am still missing that sunshine, fun and the amazing Bajans.

This brings us to January, but not really because obviously many things have happened in the past few months.  I have had a shift of ideas, thoughts and really I have come to the point where I am feeling the burn out of being too involved in the diabetes community. Not in the sense that I am going to abandon it, but in the sense that I need to pick and choose what I am involved in, in order to give it my all in those things I do choose to be involved in - if that makes sense.

I added myself to every diabetes group on Facebook at one point in time. With the combination of the groups and the actual people with diabetes on my Facebook, I was being bombarded with diabetes talk on the daily. It was sometimes nice because I felt like diabetes was a normal thing, at least online, but part of me started to feel overwhelmed - TOO MUCH DIABETES.  I have since unsubscribed to groups that I do not need to be in.  Really, if I need to reach out to anyone, I have great close friends with diabetes I know I can lean on.

I think this year is going to be about finding time for myself, making myself comfortable in my own situations and learning to say, no thank you.

What's your outlook for 2016?


Kayla

Wednesday, September 30, 2015

Check Ups

Today I woke up feeling like crap.  While at first I thought it was just sleepiness since Cola was up almost every 2 hours for some unknown reason - I soon realized it was more than just sleepiness.   My blood sugar was 18 mmol/L after nearly fasting for 10 hours and I felt sick to my stomach.  While I hate calling in sick to work I knew I had to stay home in order to sort this all out. Plus, when you work with children you don't really want to be passing on any type of sickness (even though they often pass things on to you.)

I began to trace back my steps as to what could have gone wrong but I am totally unsure.  I went to bed with a blood sugar of 7 mmol/L and even bolused for the couple cups of popcorn I had before bed. My tubing isn't kinked, I just changed my site, reservoir and insulin yesterday afternoon and for the most part my blood sugars were pretty awesome yesterday.

After going through the check-list of checks, I am marking this one down as unknown - possibly getting sick.  That's okay, I will sort it all out and hopefully be back within range by lunch time.  But, I did want to stress to myself how important it is to check frequently.  It's easy to get busy within our days and especially in a job where we are looking after others, whether that's a teacher, a nanny, a nurse etc.  We often put ourselves aside and neglect some of the basics of taking care of ourselves.

I need to test more and focus on what my body is telling me.  If my body says it's time to take a break it's time to take a break.  I will often work all day, come home and do chores and not physically sit down or rest until bed time.  My weekends are often packed full of things to do and I simply do not check when I should out of trying to pack everything in and not worry about myself - but that's bad!

I have my meter close by and my goal today is to check as often as I can.  Focus on myself this morning and get back to feeling 100% by this afternoon.  I don't do sick days well - I don't like to sit here and do nothing but I need to remember that it isn't just me that needs myself healthy - it's many others.

Kayla

Thursday, September 24, 2015

I'm Not Alone

There are days when I get incredibly frustrated that I have diabetes. I will look at my insulin pump and think, "I can't believe this happened to me." While I know wearing an insulin pump is truly not a hassle at all, I mean if my biggest complaint is getting hooked on the occasional door handle, then I think I am O.K.  However, somedays I get sad that this is what has been written in my life story.

I think because I am such a busy person I don't take enough time for self reflection or decompression. I am a go-go person.  I like to be busy and I like to work on projects and help as many people as possible (that being said, I hardly ever say no to lending a hand, whether that's physically or emotionally).  In saying that, I think I lack a full grasp on life events that are life changing, and what they mean. For instance when my uncle passed away I don't feel like I fully processed it, I mean, it's a thought that will always be there, but I don't believe I fully took the time to grieve or cope, instead I tried to be strong for my father & family. What does this have to do with diabetes?  Well, when I was diagnosed with diabetes I instantly thought, 'Okay, I need to be strong, I need to be a role model, I need to do something." I never really allowed myself to get pissed off - for lack of a better word.  I never processed it - which I think sometimes effects the way I look at my diabetes or my uncle's passing.   It hits me hard when I take the time to reflect.

There are times when it 'hits me hard' and I feel as if I have entered a different state of mind.   I think about the consequences of diabetes, and when people say things like, "my uncle lost his leg, or I'm slowly losing my sight" it scares me.  In this state of mind, I picture it all happening to me. I wonder why I was diagnosed with something that has such an awful  track record with those that have it, I think about scary things like, life expectancy, not having a successful pregnancy, going blind, losing limbs, all of those things no one likes to talk about, hear or think about.  It all comes at once.

How I pull myself out of that - makes me think that these thoughts are likely normal and not something to be concerned about.  Everyone has bad days I assume, diabetes or not.  When I find myself alone, thinking about these things I often think about the others living with type 1 diabetes.  I remember that while some of these things are true, the consequences of high blood sugars or lows, all type 1's have those things on their minds or at least they're aware of it.   We (all type 1's) are on a similar ride together, we may not all make the same pit stops or get off at the same time, but that's life.  Together we are on this ride, we have each other to lean on and to keep us going.

I have very close friends with type 1, I have a mini-diabetic best friend, I have amazing support around me physically and online that are type 1 - we are all going through diabetes together and that's what brings me back.

Kayla

Tuesday, September 22, 2015

Schedule Changes/Diabetes Changes

As most people with type 1 know, when your schedule changes, your diabetes management has to change. Even minor changes in ones schedule can cause an unexpected low or high throughout the day. While it seems like it would be an easy fix by changing your insulin dosages, it really isn't that easy.

Today I had my dreaded diabetes appointment at the clinic, and to be honest it wasn't as 'dreadful' as I thought. While there is always room for improvement, I think they know I have a level head on my shoulders and know what needs to be change.  I try to be very honest with them when I go to my appointment and I think that pays off instead of trying to make excuses for myself.

I did realize when looking at the printed sheet pump upload they examined, my blood sugars are kind of everywhere.  There really is no pattern to my blood sugars, I may be high one morning but low the next two.  I tried to think of reasons why this may be, as they asked me things like, "What did you eat?" "Did you change your site?"  "Were you sick?" While most of the time I couldn't remember, I did realize that my work schedule has changed quite drastically and that is likely the culprit in my diabetes scramble.

My work schedule is all over the map and I have been eating less and moving more. So, of course any one can assume, I am going low a lot more often.  However, I do spike every now and then which I am still trying to figure out why.  Taking on the new jobs plus working more hours has really affected my diabetes and how I go about managing it. I am still trying to figure out what works best for me and how I can prevent lows and random highs.  This of course is an ongoing battle and I know there isn't going to be a fix-all solution.

The diabetes clinic appointment made me realize that sometimes I need to slow down and look at the big picture.   I sometimes get fixated on the moment, for example, my blood sugar is 6 mmol/L and that's because I took the right amount of insulin for dinner.  I don't look at the day as a whole, where did I go high? when did I go low? How am I feeling? What can I change?    There is a lot going on in a day, a week, a month and in all of that your control of diabetes can easily be affected.

My goal is to put more of a focus into my diabetes management and activity make changes. While it's  important to know the numbers of right now, it's also important to assess your management from a big-picture point of view, and to make those needed changes based on the changes in your life.

Kayla

Friday, September 18, 2015

Don't Judge

In the diabetes community there is a lot of cheering on, lots of check-ins and advice but there also is a lot of judging that goes on.  This isn't really a surprise since everything on the internet is judged but I don't really want to focus on the internet community as much as I want to focus on the real-time community, that being your friends, family, nurses, doctors and other professionals alike.

I have a diabetes appointment coming up. With that comes some strong anxiety, as it's time to renew for a new insulin pump (woohoo!) That being said, I know that this is likely when they take a hard look at your past years of managing diabetes and make some assumptions, notes and decisions. This is the first time I have had to renew my pump, since I have only been pumping for five years - so I really do not know what to expect. I do expect judging.

While I realize likely 90% of the time when people talk about MY diabetes, they aren't trying to harass, judge or shame me, but at the same time why does it always feel that way? I mean, it's hard enough when I woke up this morning with a blood sugar of TWENTY-FOUR and thought to myself

"WHAT DID I DO?" 

"SHOULD I EVEN HAVE BREAKFAST?" 

"DID I GO TO A BUFFET AT MIDNIGHT WITHOUT MY OWN CONSENT?"

Knowing that that number is going to make an appearance on the printed sheets of my pump upload next week terrifies me.  I know I didn't attend a midnight buffet, but I do know that I may have underestimated the carbs in my before-bed snack and I also know I changed a site before bed which is on the top 10 bad things to do when you're on a pump (if there was such a list).

Am I failure at diabetes? Maybe this morning. Those that claim to master diabetes are either hiding some secret solutions or are lying.  I vote the latter.   Managing diabetes is a lot of work. It's frustrating and it doesn't always make sense.  No pizza, no stressor, no menstrual cycle, no workout is created equal and in saying that managing diabetes with all the unequalness of the world isn't a small feat.

That being said, in my dream diabetes world, there wouldn't be anxiety over doctors trips, and there wouldn't be judging.  I want to hear more of;

"So you had a bad day, let's try again tomorrow."

"It's not your fault, we will figure it out together."

"Diabetes is whack." 


Kayla