Wednesday, November 29, 2017

Angry at Diabetes

Last night I was angry. I was angry at diabetes and as much as I tried to fight that angry, an impeding low brought it out of me.

"It isn't fair," I said sobbing like a child between the covers in bed.

 "It isn't fair that I have to do all of this."  

For me, I like to bottle things up, but like a carbonated drink, shaken over time, I do explode with grief every now and then.  I carry a lot of the burden of those that also live with diabetes, people who I admire, people who I know are struggling and just deserve a break.  I carry that on my shoulders along with my own grief and sometimes I crumble, like any human.

Earlier in the day after driving home from clinic I had a moment of reflection in the car, thinking about what life would be like if diabetes was no longer.

 What would I do with all that extra brain storage, that right now is plagued by carb counts, blood sugar checks, numbers upon numbers? 

What would it feel like if my guilt of not doing enough went away?

How would it feel to not fear complications, or the worry that I won't live a full life?

Upon arriving home, I left those thoughts in the car and didn't think about it. Until that low, when all those feelings came rushing back and I felt as though I had no feelings at all, yet more feelings I knew what to do with. I felt empty and blank, yet explosive and angry.

I knew I wasn't sad, it wasn't a feeling of being sad. It was pure anger at something I did not ask for, something I did not cause, something that was given to me when I was eighteen that I can not return or justify getting.  I was angry.

After some reassurance from M, telling me that he understands my anger, my frustrations but that I need to be strong and keep on going.  I let my anger leave the room, as I did not want to fall asleep with that anger.  Tears, some choice words, and candy to cure my low, I let that anger free (for now) and fell asleep.


Saturday, November 25, 2017

Note to self: Don't Forget

"I can't believe you forgot that!" 

How many times have you heard this? I don't mean forgetting your keys or your wallet, but rather, those diabetes things that we as people with diabetes are supposed to remember but time after time forget.  

I decided to compile a list of the things that I personally always forget and hopefully in turn you can let me know, that I'm not the only one!

1.  Extra Sites

You're out for the night and you're up dancing and your partner snags your site and rips it out.  Now, there is no insulin flow and you're already 10 mozzarellas sticks and 5 mixed drinks in. What do you do?   Use an extra site you've packed in your clutch .... but actually no, because you forgot to pack an extra site.

2. More Insulin 

Now you're having dinner at your in laws and you are about to sit down and enjoy the wonderful meal.  There is even delicious cake to enjoy afterwards, but guess what? As you bolus you realize you have 2 units left.  Yeah, that low reservoir warning you heard before you left your house, that was real.   Now, you have to either forgo the mashed potatoes and cake, or pay for the high blood sugar you're about to experience because you forgot to refill your reservoir.

3.  Low Supplies 

Anyone else sweating profusely? Is the ground shaking?  Are these lights exceptionally bright? No, just me? You're shopping with your friends when all of a sudden all the low symptoms come on.   Easy, take a moment to enjoy your low snack in your purse? Oh wait, you never refilled it the last time you used it.  Now you're waiting in a huge line just to buy a bottle of pop to recover from your low because you forgot your low supplies.


Friday, November 24, 2017

Sometimes it Actually Sucks

It's not always sunshine and rainbows.

It doesn't always have a happy ending or life lesson.

"Sometimes it actually just sucks," said one of my teens at my social group.

I am guilty of adding cheerful lessons of life, sentences of thankfulness and wrapping my sometimes sad blog posts with a glittery bow of, "but, it's all okay."  But, that isn't always the case.  In fact, most of the time diabetes isn't okay.

Last night I heard loud and clear that wrapping up blog posts with a happy ending isn't always wanted nor easy to swallow.  As a blogger for over eight years, I can't help but realize I have spent most of my writing career trying to balance the literal highs and lows of diabetes while trying not to complain too much, but also be honest.

As a generally positive person, it can be hard to spill out the frustrations and leave them untangled for everyone to read. I try hard to show how grateful I am by balancing my anger with praise.  While, I won't deny those feelings, after speaking to other people with diabetes I have come to realize sometimes that may come as a disservice to those that are trying to understand diabetes, or those that have diabetes and are trying to relate to me.

Loud and clear, diabetes is hard.  Living with diabetes is incredibly frustrating and at times feels like a giant black cloud that follows our every thought.  I worry about my future with diabetes, I worry that I am not doing enough or that one day I will look back and blame myself to an unbearable degree if I get complications or diabetes prevents me from being able to do something such as have a family. I worry about the people my diabetes effects, my fiance, my future children or my own personal well-being.  I also continuously worry about what I can do to give back to the community, to alleviate the frustrations of others.

As the positive person that I am, I still struggle a lot with balancing diabetes and my life. I brush off a lot of things and play down how much diabetes gets in the way.  I am not a 'perfect' diabetic, not even close and I want all those that read my blog or speak to others with diabetes to know that we are fighting a battle every single day.

As hard as it is to not wrap this up with that glittery bow, I want to be honest and I want to be clear, that diabetes....sometimes it actually sucks.


Wednesday, November 22, 2017

Sleepless, Restless, but Alive.

Sleeping. Just imagine a sound sleep without getting up, a sound sleep with no beeps or buzzes.  It doesn't happen as much as I wish it would, but I've learned to appreciate those nights when my blood sugar stays steady enough that I do not have to visit the bathroom, every hour, or chug water by my bedside as if I hadn't drank in weeks.  I appreciate not having to slowly and quietly unwrap candies and eat them with my eyes half open and my thoughts still unconscious.

A full sleep without disruptions of my insulin pump going off or CGM warnings.  I am fortunate enough to work from home where my start time for work depends on me and on those nights that I spent half the night tending to my diabetes, I do not have to rush to my car in the morning.  I think of the people that are barely functioning as their alarm goes off because they're surround by crushed juice boxes that they had to down in the middle of the night. 

It just isn't a great sleep having that constant worry even if your blood sugars are fine. What if I go low? Am I low right now? I hope I am not high all night. Then there is that internal battle between yourself and well, yourself to get up and check, or get up and treat your low blood sugars. Fighting between the warmth of your bed and having to tend to diabetes. 

I think about all my great new-mom friends with type 1 diabetes who are tending to their newborns and also having to tend to their diabetes, they deserve gold stars for their ability to wake up human every single day. 

However, each morning we do get up and we do go on with our days because doing both, manaing our diabetes and living out our lives is equally important to us.  Not allowing diabetes to take away all of our energy, despite feeling drained some mornings.   

We just do it, sleepless, restless, but alive.  

Thursday, November 16, 2017

Additions & Subtractions

Sometimes I think to myself, What is diabetes adding? What is diabetes subtracting?

This may seem like an odd thing to think about, but when it comes down to it, living with type 1 diabetes it both a mental and physical marathon.  You wake up each morning, sometimes having spent the night getting up and out of bed to use the bathroom, or having to treat lows, or maybe you had a great night sleep with zero disturbances and you wonder what life would be like if diabetes was not in your life. 

While I don't think it's healthy to spend too much time wondering 'what if' I think there are moments for all of us where we think about what diabetes has added to our lives.  As much as we don't wish to have diabetes, for some of us we have found friendships or experiences that we other wise may not have ever come across.   I pull from those 'additions' when I struggle to accept that cards I've been dealt.  The times that I have had to leave a party because my site ripped out, or had to embarrassingly ask for a glass of juice from someone I had just met.  

Then there are the 'subtractions' and for me those aren't the ripped sites, or time spent checking my blood sugar, but the future what ifs that linger across my mind every now and then.   Sometimes, those things I thought would be subtractions turn out to be okay and I am reminded that living life alongside diabetes is not a marker for disappointment. I can achieve my goals similar to my non-diabetic peers. It is my hopes that the subtractions stay distant, and are dissolved by the time they arrive. I am not naive to think I will never be let down because of my diabetes; however, I am confident that with the additions, I can stay encouraged and push forward. 

For all those that have walked before me with type 1 diabetes, and have documented their additions and subtractions, I thank you.  It is not easy to share our lives so openly and courageously, but in doing so, it gives those who follow your footsteps a string to hold onto.  


Friday, November 3, 2017

Diabetes Awareness Month: What is my role?

The fall is flying by and I hardly noticed that it was November i.e Diabetes Awareness Month until I saw all the posts online.  I find myself in a bit of a withdraw from blogging, reading up on diabetes related news/blogs and find myself immersed in life outside of the internet.  However, I am missing blogging and catching up with all the amazing things my fellow online diabetes community members are up to.

I find it interesting how time slowly changes us, the messages that stream across our social media begin to resonate with ourselves a bit differently and our drive of what to put energy into changes.  I remember when I was first diagnosed I was greatly involved in spreading awareness and advocacy, each year preparing for the diabetes walk in the spring and constantly finding opportunities to let my peers and community know about type 1 diabetes.  While I still have those goals and desires, I have found ways to put energy into that without losing energy for other things in my life beyond diabetes.  Some may say that's balance.

November is important to note as Diabetes Awareness Month, but part of me wonders what my role can be in this month.  Is my role posting on social media about my diabetes? Is my role correcting those in public that push stereotypes about diabetes?  Is my role to raise money, awareness, create new projects?

I feel that some may feel pressure to push out awareness, when most of us are tired, most of us have been in the diabetes world for awhile now and are running out of steam or inspiration. I think the important thing to remember is that everyone with diabetes deals with diabetes differently. We all find what's comfortable within ourselves and anytime we share our experiences, stories, words of education or wisdom, it comes from a vulnerable place that we are sharing because we want to be heard. That is our part of spreading awareness whether it is November, December, June or July.

For me, this month I will continue to do what I have been doing for awhile now.  I will spend every Thursday evening speaking to teen girls with type 1 diabetes.  I will blog when I have the time and inspiration and I will continue my work that I do on other diabetes platforms. Nothing extra, nothing different, but what I have the energy, comfort and inspiration in doing.