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Playing By the Rules
Have you ever felt like your voice is just being heard by some people as though it is the teacher’s voice from the famous “Peanuts” cartoon? If you have tried to advocate, educate, explain countless times about the experiences we share while dealing with the ups and downs of blood sugars then you may be nodding your head in unison with me today. Maybe there are times when we think that people that are around us (& by extension life with diabetes) are not just nodding their heads politely but they understand the things that we relay to them. What about when we find out that this is far from the truth? How does that make you feel? Since we are each beautiful originals our answer to that question will vary. There are times when we may feel frustrated (exasperated) by this, or sad or alone and many other emotions. If we have been advocating & educating people around us for years then we may choose a stronger word to put a voice to our emotions when all that is heard at times is that teacher’s voice from “Peanuts.” (Enter my swear jar)
For 2 weeks my blood sugars have been especially berserk which is saying something. If you live with type 1 diabetes you know all about the zig zagging of blood sugars from one day to the next & at times even from one hour to the next. You also likely share the mini or bigger panic that comes along with dramatically unstable blood sugars because these can easily turn into a dangerous situation. Although I consider myself to be a glass the right size kind of gal, I am no Pollyanna. More than anything else in my life, when it comes to diabetes, I call a spade a spade. If I am having profoundly unstable blood sugars I will tell those people that are around me that need to know about this in plain terms. The idea is that then those specific people will either give me some space or support. The point is that then they will know that during those berserk blood sugar waves I am not going to be myself. I am basically at a point now where I feel sick & tired of pretending to be Suzie Sunshine when I am nearing emergency blood sugar numbers. And frankly I believed that at least a small, trusted circle of people who know me very well( that I have so openly shared my diabetes experience with) understood most of what I have been describing. The disclaimer is that I know with all my being that their hearts are in the right place thankfully. In the sting of the moment though how disappointed I found myself feeling recently with the realization that all my educating about diabetes has fallen far short of resulting in space or support when the chips were down.
Last weekend was the final baseball tournament of this season for our youngest son, Alex aka “the alligator”. It has been a wonderful experience for our son playing in this league for the first time. His favourite positions are short stop, first base & catcher. He loves baseball. He loves playing it & watching it & practicing & talking about the Blue Jays (his favourite team) & Kevin Pellar (his favourite player on the Jays team). Alex is the only player on his team that tucks his pants into his socks old school & likes to have his glove ready “for work.” He gets a serious look on his face in the outfield & a tiny, understated grin when he is waiting to go up to bat. He is a rule follower in life in general & of course this carries through to baseball. I have found myself learning about baseball rules that I had never paid attention to prior to this season. Kids are so cool to watch in so many ways & the sociologist in me cannot help but be reminded about how natural it is for kids to be immediately comfortable making new friends for the most part. It took no time at all for our son’s teammates to become buddies. They were so encouraging with one another & cheered one another on every game. Adults it seems take a bit of time to let our guards down & get to know one another. I found myself most of the baseball season quietly cheering the team on in a muted voice literally with accompanying subdued clapping. By season’s end though the parents also had gotten to know one another & felt comfortable around each other which was wonderful. By the time last weekend’s tournament arrived all of the parents were cheering loudly together & it was a blast. The best part was that the kids on the team were thrilled beyond measure with the collective cheering of the parents & family members.
You know what does not play by the rules consistently? The answer is a resounding “type 1 diabetes”! The getting to bed after a late evening game & getting up at the crack of dawn for the next tournament game did of course not agree with type 1. After the morning game, my blood sugars climbed to the peak of Mount Kilimanjaro metaphorically speaking. When it comes to things that are important to our sons I suck it up & carry on sick or not & the tournament qualified for this. Once I got home I began drinking water like a fish to try to keep ketones away. Then I did insulin corrections & “suddenly”(insert many curse words) nothing happened to bring the sky high blood sugars down. The blood sugars instead stuck their tongues out at me & climbed from 17 to 22.5. (Canadian measures) “Crapatate”, I thought to myself because the last game of the season & tournament were to begin in 45 minutes which meant that we needed to leave the house in 20 minutes allowing zero time for insulin corrections to do anything helpful whatsoever. My experience is that usually when my blood sugars rise about 16 (Canadian measures), I feel like I am about to turn into Mr. Hulk…you know angry on steroids. It is a sucky feeling especially when you are not by nature an angry person. And then there is the additional sucky physical stuff that goes along with extremely high blood sugars like nausea, exhaustion, thirst, stomach pain, and more, more, more. I told my husband that my blood sugars had gone to 22.2 & that I would need some major space for at least an hour to try to force the blood sugars down, down, down. You know that feeling when you are holding it together & give yourself a mini pep talk like, “hang in there.” Yes, that is the one I gave myself only with swear words inserted because 22.2 sucks big time. And yes the number scared me into doing even more blood tests which is saying something since I already do 12 blood tests a day. My fingers look pretty nasty from all the extra pokes from last weekend. That also is just part of life with diabetes. It is not the worst part to me. The worst part is that diabetes tries to rear its ugly head during the most inopportune times. Sometimes it is not possible to take the best care of myself like having the luxury of resting when blood sugars sky rocket. I am not alone in that. Type 1 diabetes is complicated. Things that send blood sugars high & low are so extensive & vary even for a given individual don’t you find. No, type 1 most certainly plays by no rules. What works one day will not necessarily provide the same results on other days. Opposite results may occur in fact. For instance, I know that during extra stress I will not know whether I will be sent into a profoundly high blood sugar or a dangerously low blood sugar. The only thing I know during those times is that I have to monitor my glucose testing even more closely & respond accordingly.
Once “the alligator” & I arrived at the ball park, Alex went on ahead to join his team & warm up while I tried to hang out in the parking lot willing myself to be camouflaged somehow because I felt like I was going to hurl & pass out. Silently I hoped with all my might to be invisible & not meet up with anyone I knew at least for a short time. No such luck came my way. Within a couple of brief moments a vehicle pulled up right beside me & parked & out came folks with their hearts in the right place ready to cheer Alex on. Why this game of all of them my raging blood sugars shouted silently. I decided that I would come clean right away about feeling pretty sick due to sky high blood sugars. The response I got was less than ideal of “well you look fine.” Then the follow up was, “hopefully you can get your insulin pump fixed so that you feel better soon.” What? What? What? Their hearts were in the right place yet I felt perturbed & alone. I felt alone with diabetes. And I felt Hulk mad due to not only the 22.2 but also with the fact that these folks have known me 2/3 of my life & I have educated them extensively about type 1 & blood sugars & insulin pumps & life with type 1. I thought I was being heard but no, it turned out that I must have instead sounded like the teacher from the cartoon “Peanuts.” It would have been awesome to have received either space or support but sometimes it just does not work out that way with some people in our circle. Then it dawned on me that really my experience is that the moments of support that I have felt have most often come from either battle buddies living also with type 1 or my husband & children who live with me & by extension type 1 every single day. There are a tiny group of dear hearts that neither live with me & or type 1 & yet somehow against the odds lend support & space beautifully. Thank goodness for them. This is what I chose to focus on during the moments of frustration like the ones that I felt last weekend. Type 1 as we know only too well is an invisible disease for the most part. I hope we all do look fine of course but looking fine and feeling fine are 2 distinct things. There are times that I would like to scream from the rooftops that just because I have an insulin pump it does not mean that I don’t have to continue to work my guts out when it comes to diabetes management. And I am managing a disease that is complicated & does not play by the rules. My insulin pump is not malfunctioning when my blood sugars are terrible. There are a zillion factors that affect blood sugars. That is life with type 1. I cheered my heart out for that grinning 9 year old “alligator” & his team. In the excitement I suppose the insulin corrections decided to kick in so within 2 hours of the game my blood sugars had gone from 22.2 to 3.1! You talk about feeling like something the cat dragged in. I got to inhale 2 packages of bunny gummies & wait 45 minutes after the game in the parking lot feeling like I had gone through a mudder marathon. Yes type 1 definitely sucks most of the time in my experience & sometimes it sucks majorly. This was one of those sucks majorly times. What did not suck is that despite all of that I was present for important moments for our son. He will not know or remember his mom’s sucky blood sugar numbers from any given day but he will remember that his mom was at every game cheering him on with a wink & a smile.
My heart’s hope for you is that no matter what curve balls diabetes throws your way you have both space & support during the times that count the most. And as always I am cheering for you out loud with a smile & a wink.
Smiles, Saundie :)
Be gentle with yourself always. Please focus on the dear hearts who whether they "get" it about type 1 or not somehow against the odds give the gift of space & support at exactly the right moments. Let's save the fight for diabetes. Whatever you need to today from space to support & everything in between...that is what I wish for you. The next story sharing will be on Monday October 17th.