- An advocate is a fighter for the interests of those who would otherwise be ignored and trampled upon by society.
- Advocacy can take innumerable forms. Political activism, educating the public, and social/cultural criticism are just some of the forms that diabetes advocacy can take.
- Rather than seeing diabetes advocacy as an activity of a select few, we should see it as a project that all diabetics (and their loved ones) can engage in.
- The perfect health care system is a myth. Regardless of the form of system we choose to have, health advocacy is essential to the protection of the interests of patients.
- We need to broaden our view of what constitutes diabetes advocacy.
- Diabetes advocates can be thought of as forming a choir. More individuals = a louder collective voice.
- The louder our voice, the more that it’ll stand out amongst a sea of other voices.
- An ideal advocate would be one in whom a fighting spirit is tempered by prudence.
- How one chooses to advocate isn’t what matters most. The main thing is that one is taking action.
- Since our project is a team effort, we don’t all have to be doing the same task. We can each contribute in such a way that is in line with our talents, interests, etc. There’s a place for us all.
A month ago I was testing 2-3 time a day. On most days, my numbers remained above 200 all day, and I’d often see at least 1 number over 300. Numbers in the 400s – which had formerly been rare – happened almost every week.
Fast forward to this month. I’ve been testing 6-10 times a day. On most days, my numbers remain above 200 for most of the days, but I’m starting to see due some decent numbers. Numbers in the 400s – which been all too common a month ago – are now non-existent. Improvements have been made.
Being a pessimist, I’m adept at seeing the negative aspects of any situation. In my present situation, I could easily choose to focus on the fact that my blood sugars still remain, on average, higher than what I’d like to see.
Although I could choose to see my present situation through tinted glasses, I have decided not to. To interpret my situation in a negative manner would do me no good.
It’s essential that I keep things in perspective. Although my blood glucose readings are important, they’re not what’s most important to me. Of far greater significance to me is the fact that I’m testing my blood sugar frequently.
My current blood glucose readings are irrelevant to me, so long as I’m in the habit of frequently testing my blood sugar. Although, by itself, it won’t have a major impact on the extent to which I have my diabetes under control, it will form a firm foundation for me as I continue to recover from diabetes burnout.
Discernment is essential.
Diabetes burnout struck me like a tornado. Where skillful diabetes habits had once stood, there remained nothing. A once-magnificent city had been replaced by a vast field of rubble.
In the immediate aftermath of the storm, I was left in a state of shock. After gaining an appreciation of what had transpired, my shock turned to self-pity and despair. Being stuck in the position I was in felt like an injustice, and the magnitude of the task at hand inspired nothing but despair.
These days are now behind me. Having freed myself from self-pity and despair, I was able to focus on the process of rebuilding.
This process started in December of 2013, and has continued into the new year. Although a noticeable amount of rubble has been removed thus far, a significant amount remains.
I’m starting the process slowly by continuing to test my blood sugar more frequently. When I’m ready to move on to another task, I will focus on being more physically active again. For now, however, I still need to focus most of my attention on the first task.
Despite the large quantity of work that has yet to be done, the outlook is optimistic. Things will be restored to their former glory.
As I continue reestablishing skillful diabetes management habits, I need to pace myself.
I’d experienced diabetes burnout from September until the middle of December, during which I formed numerous unskillful habits. For instance, I was only testing twice a day, I didn’t change my pump site as often as I should, etc. Given the plethora of bad habits I had formed, I’m basically starting from square one.
Given the magnitude of the task at hand, it’s essential that I focus on one or two habits at a time; otherwise, I risk overwhelming myself. I risk burning myself out all over again.
Although the road to adequate diabetes management is long, I’m certain that, so long as I pace myself, I’ll reach my destination.
The wisdom of properly pacing oneself extends to other areas of life as well. I’m currently trying to pace myself in these other areas as well. This blog is one example of where I can implement it.
Therefore, I’m going to lower my posting frequency. For the rest of January I plan on posting twice a week – on Monday and on either Thursday or Friday.
I want to write about diabetes burnout – in particular, my most recent bout with it. I want to find a way to incorporate the posts I made on tumblr a month ago, when my burnout was at its peak. As I attempt to achieve these goals, I’m continually falling short. I’ve hit a brick wall – and keep hitting it over and over again. Writers block has reared it’s ugly head.
After writing and re-writing this post repeatedly, I’ve decided to give writers block the finger, and write about writers block. I ain’t gonna let writers block slow me down…
If you can’t tell already, this post is essentially going to be a free write until I’m able to magically transition to the topic I had initially planned on writing about.
As a writer, beginnings are my archnemesis. I need to find my groove; after I’ve done so, it’s takeoff! If I don’t, my writing’s a train wreck.
Perhaps it’s because I try too hard. Rather than putting my trust in my own abilities, I try to force myself to write rather than allowing myself to write. Perhaps having a preplanned subject matter adds extra pressure. Perhaps, like a guitar player, I simply have to relax my mind and body, and then just write.
The part of this post that is actually about diabetes begins after this sentence.
Now my groove is coming back to me and, of course, now I’m starting to feel low…
I’m actually 123 (a nice number for more than one reason).
That unpleasant interruption brings us to today’s topic: the psychological challenges of overcoming diabetes burnout.
When your blood sugar is high all of the time, you adapt to it. Chronic hyperglycemia is miserable to live with, but I get accustomed to living miserably. It also tends to make me feel depressed after awhile, which means I…lack of motivation.
In other words, chronic hyperglycemia eliminates possible motivations to improve my blood sugars, while also making it more difficult to feel motivated in general.
To complicate matters further, I know that, as I improve my blood sugars, I will both experience more lows and start to feel low when I’m not. Psychologically, there is little difference between the two. Both of them make me feel the same, and this feeling isn’t one I desire.
Do you remember how I mentioned wanting to incorporate something I wrote on tumblr into this post? Well…I’m about to do just that.
Here’s something I wrote while I was experiencing burnout:
The first sentence is the part of that post that’s relevant to this one.
Pulling yourself out of diabetes burnout involves making a decision between two shitty options. It’s not as black and white as it may seem.
If you’re stuck in a negative mindset, this taints your judgement. Both of them can appear to be equally bad if this is your mindset.
All of these things make diabetes burnout an incredibly difficult hole to climb out of.
What I have been describing is, of course, an extreme example. What I’m describing is a case where diabetes burnout and chronic hyperglycemia fed into each other.
It probably would have made more sense for me to organize the last three paragraphs into bullet points but what has been done has been done.
In conclusion, I don’t like writing conclusions, therefore this post will abruptly end here
My New Years resolution for 2014 is to fully recover from the diabetes burnout I experience from September-December of 2013, and to be more careful about not wearing myself out in the future.
Going forward, this blog will play an important role in staying faithful to my resolution.
In the coming weeks, I plan on exploring what this resolution entails, and I’ll be setting smaller (and more specific) goals that’ll help me stay faithful to this resolution. More on that later…
Happy New Year!
It’s an inevitability…
Whenever I attend family gatherings, that dreaded question is apt to get asked: “is your diabetes under control?” To which I invariably respond with a lie: “Yes.”
Sure, sometimes I do in fact mean it, but my intentions don’t wipe away the dishonesty of my reply. The dishonesty is multiplied.
Lately I have been doing better; however, despite this year being my best year on record, the lowest my A1C has been in 2013 is (if I recall correctly) 7.9% – not nearly as deathly as 14, but there could still be some improvement.
Before proceeding, I must clarify something: I am not ashamed of these facts, nor am I defensive about my past. What has been done has been done, and no amount of shame will wipe the past away, nor will trying to defend it do me any good in the future. My past is a resource: it’s there for me in the present as a treasure trove of wisdom as I wonder onwards into the future.
Once upon a time (2001-2003), when I was on an anachronistic (and oppressively strict) meal plan and was testosterone deficient, perhaps I could have honestly given an affirmative reply. Like my beta cells, those years have irrevocably gone away.
When I transitioned from MDI to the insulin pump in 2003 (a blue Deltec Cosmo), I was handed an unprecedented level freedom. There’s, of course, nothing wrong with freedom. Freedom rocks…but, as the cliche goes, with freedom comes great responsibility. Unfortunately, as a youngling with undiagnosed ADHD, responsibility wasn’t my strong suit.
I abused my freedom. I used my insulin pump as a free pass to eating whatever the hell I wanted when I wanted. This was the start of my not-so-helpful habit of ignoring my diet as a factor in managing to live with type 1 diabetes.
Then puberty hit, and extreme insulin resistance set it – on top of an amplification of my already rebellious spirit. It was during these years that I rebelled against diabetes.
In the ensuing years, I ignored diabetes. I tried to compartmentalize the incompartmentalizable. As a result of my efforts, my A1C peaked at around 14. Even worse was the effect that it had on others.
Given my desire to expunge all “unnecessary” thoughts of diabetes, I never attempted to help other people with type 1 diabetes. I never considered taking part in a diabetes walk. I didn’t seek to be a part of a diabetes community. I had isolated myself.
In retrospect, I was in denial; however, it was a softer form of denialism. I was in denial about the impact diabetes can have on the rest of our lives. I was in denial about my dependence on others in dealing with diabetes.
This gloomy period didn’t last forever.
Around the time I was 16, my A1C naturally started to lower on it’s own. My type 1 diabetes remained an evil that I tried to ignore.
Ultimately, reaching adulthood was the turning point for me. It was only then that I started to take my health more seriously. It was only then that I began confronting my bad habits which had accumulated over the years.
All of this is in my past.
I confess these things not as an end in itself, but as a means. I am, through this post, taking a step towards cultivating a more skillful disposition. In recollecting my imperfect past, I’m preparing myself to flourish in the future.
On the eve of Christmas, I’d like to wish all of you a blessed time with those you love!
For me, this day has an added significance: it is the eve of my diaversity. This time of year is one of great gratitude: I’m grateful to be alive. I’m grateful that my family weren’t subjected to the pain caused by losing me at a joyous time of year. This thought is what…hurts me the most.
This thought rips me out of my self-centerdness. My thoughts, my concerns… These things no longer preoccupy my mind. I’m now permeated by feelings of compassion, sympathy…
It’s so easy to get caught up in the daily grind of living with this disease that we forget… we forget that this disease hurts us all. True, we do recall this from time to time, but, honestly, how often is it on our minds?
And isn’t this true of our lives as a whole? We get so caught up in our own endeavors – work, school, our goals, chores, etc. – that we forget to step back and truly show our feelings to those we have strong feelings of love towards?
I’m guilty of all of these things. My ego, my pride… Not even these can cover that up. I’m a deeply compassionate person (thank you diabetes and ADHD), but what’s it worth? Do I show it? Is my compassion – at least some of the time – mere form without substance?
Compassion: this is what the world needs more of. Living with type 1 diabetes has showed me that. Having to struggle through school (despite my high intelligence) thanks to having ADHD has showed me that. We have a crippling compassion deficit, and my actions don’t always make this deficit any better… and there is nothing that can excuse that.
A great human tragedy is that while each of us lives in our own private hell, we all act as each others gatekeeper’s.
Diabetes burnout feels like being mugged. It comes up behind you, seemingly out of nowhere, and robs you of any positive (or neutral) feelings towards diabetes that you may have had. In its aftermath, you are left feeling vulnerable and discouraged… temporarily stunned and immobile… And, although there’s nothing wrong with these feelings (in fact, something’s probably wrong with you if you don’t feel them), there come’s a time when you must get up and take action, despite how you’re feeling. You must report the crime to the police, and put your trust in them. You must accept that you’ve done all that you can, for now.
I was recently mugged. It seemingly came out of nowhere. My most recent A1C was the best it had been in 9 years, I was testing as often as I needed to, and I was exercising almost every day. Things were looking up! I was proud. The days (years) of not paying close attention to my type 1 diabetes were behind me…so I thought.
Something happened. My attention became lax, and, gradually, all my progress became unraveled. What once came naturally had turned into a disgusting chore. All of this happened right under my nose.
That’s the thing about diabetes burnout: it seemingly hits you out of nowhere, and it takes time to register what has just happened to you. Although it might be obvious to an outsider that all is not going well for us in dealing with diabetes, it isn’t immediately clear to us. Awareness comes in time. We’re not often immediately cognizant of diabetes burnout. It appears gradually; once it appears, our awareness of it is also gradual.
During my most recent encounter with diabetes burnout, it took me a good month to become aware that I had fallen. Until then, life seemingly went on as it had before.
Self-awareness slowly established itself. Initially, I was only aware that I wasn’t feeling as well as I had when I was testing more, exercising, etc. Then I put two and two together. Being aware of this, however, wasn’t enough lift me out of diabetes burnout.
Then things took a turn for the worse. I ended up – somehow – in the unenviable position of having to live my life while almost constantly being over 200. Numbers in the upper 300s, and even the 400s, had become a regular occurrence. Although, by then, I was painfully aware of my burnout, that awareness wasn’t enough to lift my out of the whole I’d fallen into and spur me to action. If anything, in the short term, my awareness only succeeded at torturing me.
At this point I knew that I had fallen into a deep hole. I was painfully aware that my ever-present hyperglycemia was slowly killing me. None of this helped. It only fueled the flames of negativity that hyperglycemia had started. It only succeeded at increasing my feelings of dread. I dreaded all of the habits I’d have to reestablish. I dreaded the thought of having to experience more hypoglycemia. My self-awareness still left me stuck in inaction. However, there are no eternal nights; this mental state did not remain for long.
What helped me begin the process of lifting myself up out of the hole I had fallen into? Honest self-expression. I didn’t let my pride get in the way of me expressing how I felt on tumblr. I didn’t let fear over what other people might think dictate what I published. I allowed my mask of strength to fall off, and showed my vulnerability by expressing my feelings of disgust, disappointment, and despair. Unlike in the past, I did’t let these feelings fester in me. By being willing to “stare into the abyss,” and express what stared back at me, I opened up the opportunity to take the necessary actions to restore myself to full health.
Where I stand now, I’m taking things one step at a time. Through my experiences of dealing with diabetes burnout, I’ve been taught the dangers of being over zealous. By rushing to improve things too quickly, we often set ourselves up for failure. Life with diabetes is all about balance. I have yet to find the proper balance, but I have faith that I eventually will, so long as I persevere.
I am doing what I can do, rather than focusing on what is out of my control. I can’t always control what my numbers will be, but I do have the power to get into the habit of doing the things that are necessary to get back on track. In short, my focus will be on the concrete actions that are needed to be healthier, rather than the abstract goal of “better health.” If I stick to this approach, I shall return to my former glory in no time 😉
I’m lucky. Yes, type 1 diabetes sucks, but I’m still lucky… Lucky to be alive… Lucky to have the treatment options I have available to me… In a word, lucky to have been born and diagnosed when I was. Lately I’ve become profoundly greatful for the gifts I have received.
As type 1 diabetics, perhaps it’d be beneficial for us to put the daily grind of living with this chronic disease in perspective. It is all too easy to get caught up in the daily routine of pricks & pokes, boluses & corrections. Perhaps it’d be beneficial to rise above our current (limited) perspective, and see the big picture. Stepping back and looking at what our fellow type 1 diabetics had to go through can help us do just that.
I’m profoundly grateful to have been born after 1922. From at least 1500 BCE – when type 1 diabetes was first mentioned by the Ancient Egyptians – until the discovery of insulin by Charles Best and Frederic Banting, type 1 diabetes was a cruel death sentence. In the words of one ancient doctor, “life (with diabetes) is short, disgusting and painful.” For avoiding this fate, I am profoundly grateful.
I’m profoundly grateful to have been born in the era of the disposable syringe – something we take for granted. Prior to it’s invention, the only was a person with type 1 diabetes could receive insulin was through painful glass syringes. For avoiding having to use these medieval contraptions, I am profoundly grateful.
I’m profoundly grateful for having been born in the era of blood glucose testing kits – even though my actions have often betrayed a lack of gratitude. I take for granted being able to know almost exactly what my blood sugar is. For not having to piss on a strip or be a bathroom chemist, I am profoundly grateful.
All of these things are gifts – gifts that have been given to us solely because we happen to live at the right moment in history. Although it doesn’t change the fact that type 1 diabetes sucks, let us stop and be grateful for the gifts we have received. To do so is essential for our mental health.
When you begin to see your insulin, glucometer and all your other diabetes supplies as gifts, something changes – at least for me. A burden is lifted. This simple act of changing your perspective on these things can be a powerful means to lift oneself out of the darkness of diabetes burnout.
I’Ve had type 1 diabetes since 2001; however, I didn’t begin to talking about it openly until 2013. Why? Was it due to timmidity? Fear of judgement? Embarasment? No. The reasons were less obvious.
In part, it was due to a desire to pay as little attention to diabetes as possible. Talking about it felt like an unnecessary nuciance. I preferred to compartmentalize the condition – “unfortunately” for me, diabetes isn’t compartmentalizable. I was compartmentalizing the incompartmentalizable.
An even greater reason for not talking about my type 1 diabetes was this: it ain’t easy. Although I’m a talented writer and can be abnormally well spoken for somebody my age, I still struggled (and struggle) to explain.
Describing what type 1 diabetes is like to a non-diabetic can feel like trying to create a detailed sculpture with a sledgehammer. Words fail to adequately describe what it’s like for me to live with this condition. The nuances are “lost in translation.” At times, it feels like all I’ve succeeded at doing was sculpting a primitive sculpture.
I don’t blame other people for this, nor do I blame myself. Explaining the existentials of living with type 1 diabetes is inherently complicated.
There are innumerable nuances… Countless difficulties.
If I go into detail explaining it, one can easily lose sight of the big picture. Giving an explanation with too much detail seems to give a one sided impression of diabetes. Ironically, being vague often seems to give the clearest picture.
Type 1 diabetes is a mixed bag.
At the best of times, managing it is simply a matter of habit. True, some of the things you have to do aren’t pleasant. With that said, they become a normal part of your life.
On the other hand, it can often be pure hell. The highs. The lows. The fear. The pain. The burnout.