Down Days and Toughing It Out!

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I struggle tremendously with two opposing aspects of life with diabetes! I have an intense motivation to prove that living as a T1 diabetic, nothing slows me down. I want to scream to the world that if I take good care of myself, I am perfectly capable of doing anything anyone else can do at anytime! Then I have a few days like the past two that make me want to beg for a reprieve from the real world and all of my obligations! These are two opposing ideas and I genuinely despise the conflict!

I am not a perfect T1. Really, what does that mean? Does being a perfect T1 mean that I continuously have in range BG levels? Does it mean that I tackle it with all I have got and never give up? Does it mean that I fight every government battle, happily support anyone else that lives with diabetes, am a triathlete, an incredible fundraiser, and above all else, can cure anyone’s struggles with diabetes? Goodness NO! I think the word perfect is used more than average in the world of diabetes. The average population does not refer to this adjective nearly as much. Listen and see what you hear. I only find people that struggle use this word! I hear it at support groups, those with addictions, and those that feel inferior in some way. What a shame that we allow this word to be a defining level on our scale of self value or worth!
I struggle with proving to others that I am just having a down day and I can tough it out! I struggle to let others think I am perfect. I do not fool myself to think that people would believe I am the perfect mother, friend, daughter, etc. To those that do not live with diabetes, I want to show as much perfection as possible. This really means that I show no disruptions in my day or anything that would slow me down.

We all have down days. We all can tough it out on most days. There are days that we just need to shut it down and accept it and not feel guilty! I confess to clients that we should embrace our challenges, not let it get the best of us, and move forward. I preach that it is ok to have down days. I tell others that it is ok to take the day off when our BG values are wildly fluctuating or we are sick. It is true, we feel worse with a cold than the normal population! No doubt about it! Why then do I struggle so with this same concept when it comes to my own responsibilities?

I have had unexplained high BG levels for two days. Was it something that I ate? Did I do something “bad”? did I “cheat”? Do I have an infection that would justify these levels? Do I have a bad insertion site? I hear other people use these all the time. Could I have tried harder? That is the thought that conitually runs through my head as a T1. The simple truth is that I do not know! This is most infuriating. I do not have a fever or a virus that I can tell. I have not pigged out on more carbs than I can handle! I have tried to be active and productive. I have taken my daughter to her activities, fed my pets, cleaned my house and all I want to do is get in my bed. This doesn’t sound terribly unreasonable to many, especially the busy moms and dads out there!

The problem is that I already crawled in my bed for nearly 12 hours and I still feel the same way! Yesterday, I let my family know that I was overly tired without much reason behind it. My BGs were elevated, but only hanging out in the 200 range. Occasionally dipping into the high 100s and occasionally creeping over the 300 borderline. Not my usual, but no need to run to the ER for any reason. I crawled in bed at some unreasonably early hour, and let my family fend for themselves. I woke on and off throughout the evening/night. I remembered to test, and sigh at the still elevated numbers. I remembered to get up and remind my daughter that National Junior Honor Society was scheduled early for school tomorrow ,so “set the alarms” as I would also do. I could rouse myself when the wifi went out and she needed assistance. I could wake and brush my teeth, although I admit my clothes stayed the same. I was able to wake and be assured that she had eaten dinner and was ready for school and going to bed at an appropriate hour. That was it. Each time I woke, I felt heavy, unnatural, and kept getting angry at myself that
I couldn’t snap out of it!

I was able to wake at the time my alarm went off this morning. I was flat out exhausted! How is that possible? Many people love to tell me that you can get too much sleep! I believe that is a possibility, but I would say extremely rare with someone that lives with diabetes! On any regular night I wake up because my BG fluctuates. I basically wear two devices on my body that can occasionally feel uncomfortable (or hurt) while I lie down. I have to use the bathroom. One of the two or both of my devices may alarm for various reasons. I have actually spent one night with them all going off about every hour! Low reservoir, low battery, high BG, Low BG, the unusual “you haven’t pushed a button in enough hours, so I want to make sure you are not passed out” alarm. That doesn’t begin to take into account the other parts of life that can disrupt sleep: pets! The sleep bandits are my dog that wants out of her kennel to take up as much space on the bed as possible or the one cat that is obviously missing life in the wild! He goes into my daughter’s room and ferociously grabs a ball of socks from her drawer, and howls as he carries this “kill” throughout the house at all hours! He proudly drops it at my feet waiting for praise! Did I mention how much safer I feel knowing he does this? Hahaha! I should also mention the occasional neighborhood car alarm, the plain restlessness, or heaven forbid- the hormones that cause hot flashes, sweats, or plain old body aches and pains!

So, I think I have griped about my lack of sleep in general enough. Why am I not able to say that I need another 12 hours in bed today?! I feel like a failure. Am I depressed? Why wouldn’t I be when I want to get up and have a perfectly productive day, but feel heavy eyelids all day long. I do not have anything on the outside that explains my tiredness. Make no mistake, my body is in a state of harassment to say the least. I would equate the tiredness, the occasional headaches, or queasiness that accompany swinging BG values to that of other medical crisis. I get no sympathy because I look like anyone else. Not that I would admit to wanting any sympathy. I just want to be able to write a permission slip for myself to be out today and not have to explain it or deal with repercussions!

It more than angers me when I hear cases of people abusing the system in the news today! Stop it! PEOPLE- Be honest and do what you are supposed to do unless there is a legitimate problem! I don’t whine much until it is time. (Ok, my girlfriends might say differently,) but when it comes to diabetes I try my hardest! I want to be able to have a down day and not simply tough it out!

I didn’t have a 504 plan growing up! Can I get one now as an adult?!? Pretty pretty please? I could use one!
I fought timed injections and the old school of life with diabetes when I was growing up. I know that I got low almost every day in Algebra and had to go into the nurses office. Was I grateful that my teacher let me do extra credit to get my grade up? Absolutely. I think I had to do twice the amount of homework that others did and I still didn’t “get it” because I missed the class instruction! Why didn’t I just go home? I was trying to prove that it wouldn’t stop me! In reality, who was watching or cared?

I think my coach always kept one timeout open in case I went low on the court. No one knew that once when I burst into tears while serving the volleyball that my BG was high, my muscles hurt, my vision had been compromised, and I just felt lousy. Nothing on the outside showed that. I certainly didn’t want to explain it to anyone. I wasn’t low where I could be justified by eating some glucose tablets on the side. I just let them think I was a weak player and went to sit on the bench. Most of my teammates told me to “shake it off”. I nodded, and tried my best. It never happened.

I think that when our young kids have the rough days it is somehow (not right) but somehow, easier to justify the rest required. It is the same idea in parenting in general. The commercial about the dad that peeks his head in and asks his toddler for a sick day comes to mind. I don’t have a red nose. I do not sound congested. My body is fatigued in a way that is hard to describe. I need another 12 hours in bed and not have to feel guilty about it, explain it or try and “make up” for my down time. I don’t want sympathy. I want an unchallenged break. I promise to work my tail off when I am feeling good! I promise not to let it stop me or use my chronic illness as a crutch. Can I get a hall pass?

So despite all my blustering about, it remains the same. Those of us living with diabetes don’t want a bunch of sympathy. We can usually do anything that we want if we take care of ourselves. I don’t want pity. I just want to be able to say time out. I don’t expect that to happen anytime soon. Maybe that is part of this challenge and a part that I will learn to embrace once again when my BG levels settle.

Don’t pass out the sympathy cards yet. Just add this bit to your knowledge bank. We all have down days. We all have days we can tough it out. We usually can do it. On rare occasions even the good intentions can’t keep me up and on top of it at all times. Be gentle with each other. Please pass less blame. Take responsibility in whatever you do, seriously. That way, when you need a break you are not “crying wolf”. Be a good example to others living with diabetes. Above all else, be honest. We seldom are with others and maybe we should be more so! Honesty might help us all out a bit more than we expect!

So, I am off to an appointment, a volunteer meeting, and will try to get my kid to soccer in between. No, I didn’t get my work out in today. I didn’t eat well today because I just didn’t feel like anything. I will not look as great as the other mother’s at this event tonight. I will be there, because I said I would be. I won’t be chatty. For those that know me, SHOCK! I will come home and crawl into bed (same clothes are still a strong possibility) and gear up for tomorrow. WE can do this! It just takes a lot of time and some occasional finesse! Don’t worry, after another good night of sleep— I GOT THIS!

Marianne Tetlow
The Diabetes Coach

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