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Lessons From the Dia-Hill
Some people living with diabetes vividly remember his or her diagnosis anniversary aka the “diaversary.” Maybe we remember by choice or perhaps we forget by choice. How about you? I find that my diaversary date of November 29th seems to stay with me. What do I do with this I ask myself each year.
This Sunday is my 8 year diaversary. Some years I have found myself feeling more nonchalant than others when my diaversary date approaches. This year I admit that I just plain feel beaten up. That is the feeling of being beaten up but never beaten down. Thank goodness for that mindset. Although I feel beaten up I continue to cling to a steadfast hope. It is not a hope for a cure for type 1 diabetes (that I was assured would be within 5 years). It is one thing to hope for a cure yet quite another to expect one within my lifetime. I decided a few years ago to not count on a cure anytime soon but rather to make the most of my life in the moment versus waiting to continue fully with life or putting a portion of my life on hold while waiting for a cure. Each one of us is a beautiful original so our coping strategies will vary & that’s understandable.
Even the most enthusiastic people with exceptional positive attitudes can feel beaten up at times. This is where I find myself even though I have been trying to climb out of a feeling of sadness currently. Then I realize that it all actually makes sense. Since last November 29th, I have lost 5 loved ones including one of my very best friends. I kind of get a sinking feeling when the phone rings as a result. It has been a year of struggle health wise too yet there has been less time than ever to deal with the 4 autoimmune illnesses that I live with 24-7. A few dear ones continue to need additional support from me due to struggles they too deal with. I feel such compassion for each one of them. I get how they feel. I remain strong yet silently exhausted. So many times I have tried to block off time to recharge however it is rare to not have something happen to this time. Over & over again I hear from one medical professional after the other that it is important to reduce stress. They each treat one fraction of me & my health. I tend to not disclose just how heavy the load is. What is the point is where I am at right now. It changes nothing so I continue to hang on at times by my fingernails each day. For sure I will get my strength rebuilt. This is no pity party for one & I am not a victim now or ever. At the same time though I am 3 dimensional so I live in valleys and mountains just like everyone else. What I refuse to do is to pretend that everything is perfect. Type 1 diabetes taught me a long time ago that you can do everything perfectly & still not have success with management on any given day. I live with my flaws & am okay with it all. I am okay with admitting to feeling beaten up & knowing that this will not last forever either.
Being an advocate has played a very important role in my life since being diagnosed with type 1 diabetes. As I have shared before my role as an advocate began with advocating for type 1 diabetes however this naturally lead to advocation for antibullying, suicide awareness, special needs children and more. Perhaps the place of cross section for many if not all of the advocation is that feeling that we each feel so often as outliers, outsiders, different or at times not accepted. I will not take a break ever from advocating. It has become part of who I am. There are times where advocating itself puts us on the outside of popularity to say the least. Telling the truth even when our voices shake is not always the easiest thing to do. We will not always be the life of the party so to speak. And stones (metaphorically) will be thrown at shiny things. In other words we will be challenged big time for various reasons. Long ago I learned the lesson that I am powerless over what others choose to say or do. It is my job to take charge over how I react to what others say or do instead. For instance since I am a hugely sensitive person I have a difficult time letting go of things that bother me. That is a work in progress.
We all struggle & have those extra demanding days every once in a while. During the last week of October I had one of those kind of days where you just don’t get a break even though you are trying with all your might to turn it all around. It began with a preventable injury that our youngest son sustained at school that he now has a permanent physical reminder of. The day had started out like any other & I was not contacted by this school (this has happened repeatedly during times that our sons have sustained preventable injuries at this school) & upon arriving to pick up our youngest son he was inconsolable due to the pain from the injury even though he is our stoic son. It always boggles my mind that a parent would not be contacted immediately & also that everyone around a crying, distressed child can be so oblivious to this. Not one person bothered to try to comfort my crying son. What a world we live in sometimes! To make a long story shorter the frustration continues with this particular school even though years & years of advocating have been invested. Our son lost a couple of days off from school including the next day whereby I had to take another one of our sons to a specialist appointment downtown Toronto. That trip back & forth to Toronto was brutally frustrating. It was teaming rain so it took 3 hours each way to drive there. Unfortunately to top it all off, sometime on the way to the appointment my infusion set got ripped out & I did not have a spare set with me (although I usually do). That meant that my blood sugars kept rising & rising. By the time I got home my blood sugars were in the 20’s so I tested for ketones, corrected, drank what felt like buckets of water, felt like something the cat dragged in & it took about 8 additional hours to see my glucose readings anywhere near in range. A few days later when I changed my infusion I hit a blood vessel & had to change out the infusion a few hours later & again go into sick day management mode. Life however as you know continues at the speed of light so just because we feel like we have been through the ringer so often we have to keep going & going. My calendar is literally covered in medical appointments that I am responsible for whether they are mine or my family members’. Honestly, I would love to take a big break from all of that. I am sure you know exactly what I mean.
My diaversary for some reason tends to remind me that when I don’t feel like doing something good for me that I need to do it anyway. This year I reminded myself that this has been too heavy of a year & I have to schedule in some fun even though I am not feeling like this at all. Elbows up, a break in the form of fun has been scheduled in short term & long term. It has been complicated organizing fun for our family since there is so much going on health wise for several of us. I hope that it all works out. We have to try. I do feel hopeful. Maybe the scheduled fun will prove to be a shift. I will never stop trying to lighten things up. As always I am not going to celebrate my diaversary itself however I do choose to be thankful to be here with my family to live a messy, beautiful life.
My heart’s hope for you is that you have at least one person to lean on when life’s struggles become too heavy for one person to hold.
On a lighter note our 3 sons just completed their letters to Santa & our 2 younger sons brought back a humourous memory from a Christmas Eve a few years ago. I had forgotten to leave carrots out for the reindeer so the reindeer apparently got into the refrigerator & left half eaten carrots on a couple of shelves & also hoof prints. The boys included a stern warning to the reindeer about ever doing that again. It really is about the wee moments. This is one of many. May your week ahead include many memories that bring a smile to your face. And may we all live presently in each & every moment. Next Monday’s story is “The Light or the Reflection.” xo