It’s been 2 years since I last updated this blog. So much has transpired over that time that it’s hard to know where to begin. Over the next few months, I intend to let my story unfold for you. I feel in my heart that I have something worth sharing with you. That my journey is your journey. Whether or not you resonate with my process, I know that I cannot keep it to myself. I must write about it, share it–for whatever purpose it fulfills.
To that end, I begin my story at the urging of my partner to write about what’s it is like to live with a Type 1 Diabetic (T1D). I met Todd last year and when we began dating, he informed me that he was a diabetic. At the time, I had no idea how involved I would become in his life and nor how his diabetes would affect me. Todd is writing a book on T1D–and asked me to contribute a chapter on what it is like to live with a T1D.. I share part of that story with you now.
It’s 3:45 AM, I reach across the bed to place my arm over Todd. My arm falls on a mound of wet sweaty sheets. As I begin to awaken, I hear a spoon clanging against a bowl from the kitchen. The hall light is softly illuminating the bedroom. I roll out of bed and make my way down the hall to the kitchen. Todd is leaning over the kitchen bar shoveling spoonfuls of cereal and almond milk into mouth. He’s not speaking, he barely notices me.
“What was your blood sugar?” I ask.
“48 “, he responds.
I know better than to ask: “how do you feel.?” I know how he feels –he feels terrible. He can’t think clearly, he is sweating profusely, his balance is unsteady. He’s scared, he has to get sugar into his body, fast. I wait for him to finish his food. Soon he begins to come around and we check his blood glucose again.
That’s better. I think we can go back to bed now.
All during the previous day, Todd was checking his blood sugar at frequently regular intervals trying to get an idea of when his blood glucose spikes after eating and how long he can go between meals before it starts to fall drastically. He’s trying to figure out how to set his insulin pump so his blood sugar levels resemble more of rolling hills rather than peaks and valleys.Until I met Todd, I had very little contact with anyone with T1D.
I am a nurse practitioner and often see patients with Type 2 Diabetes–a whole different disease. I coach Type 2 Diabetics on proper nutrition, exercise and supplements and how to best manage their disease. It’s possible to reverse Type 2 diabetes; it’s preventable. It comes about because of one’s lifestyle choices. Type 1 is completely different and more rare.
Type 1 diabetes usually manifests during childhood or young adulthood. It is an autoimmune condition where the body attacks the beta cells located within a cluster of cells in the pancreas known as the islet of Langerhans. The beta cells are responsible for producing insulin. They sense sugar in the blood and then release the necessary amount of insulin to maintain normal blood sugar levels. It is not yet completely understood why some people’s immune system, which is supposed to protect you, mistakenly attacks and destroys these beta cells. Trauma is thought to be one of the causes triggering the body to attack its beta cells.
Todd’s condition was diagnosed when he was 14, during a very traumatic period of time in his life.Insulin is crucial to life. Without it, glucose cannot move from one’s bloodstream into the cells of the body to provide them with energy to function. When the pancreas fails to produce insulin, blood glucose levels rise preventing the body from functioning properly. Overtime, high glucose levels damage nerves, blood vessels, organs and eventually cause death.
Living with a T1D has been an eye-opening experience. There is constant pricking of your finger and checking your blood sugar–first thing in the morning, after breakfast, mid morning, before lunch, mid afternoon, before dinner, after dinner, before bed…sometimes in the middle of the night. It means adjusting the insulin pump to raise or lower the blood sugar, it means eating at regular intervals and carefully planning what you eat. If you don’t, you may end of eating anything within reach just to get the blood sugar to functional levels. It means being diligent whether you want to or not. It means that before you do anything in morning, you must attend to your blood sugar/insulin relationship. You have no choice. If you don’t, you will die.
When we were first dating, I thought it was a novelty when we would stop and check his blood sugar levels. I often joined in. We compared numbers–and planned our next meal or snack around his blood sugar levels. He would adjust his pump if too high or too low. I didn’t have to do anything. My pancreas would figure that out for me and administer the correct dose of insulin at precisely the right time and the right intervals. But Todd has to figure that out for himself and program his pump to do what my body does without me thinking about it–as long as I take care of myself, my pancreas will take care of me.
I am learning to be more appreciative of my body, to feed it regular meals and never to take it for granted. I am learning how fortunate I am that my body works really well. I have very few health issues and mostly what I do have–achy joints and the tightness in my neck or shoulders– is manageable with stretching, yoga, massage, rest, etc.
Todd needs to plan his day with great attention to detail. He didn’t always do so and he is paying for it now with damaged vision and peripheral neuropathy (nerve damage in his legs and feet). There are other side effects too, and we don’t even know some of the long-term damage that may occur from the drastic blood sugar swings that have ravaged his body for so many years.
For many years I struggled to be in my body. I frequently ignored its signals of hunger, fatigue, pain. I pushed myself to keep going when I should have stopped to rest. I exercised rigorously to stay in shape, lose weight or keep those dreaded extra pounds at bay. Often I skipped meals either because I was too busy to stop and eat or because I thought starving myself would help me attain that perfect body. Then there were those times when I would polish off a carton of coconut ice cream or a bag of chips–my body craving immediate gratification. As I grew to love myself and listen to my body’s messages, I began to find refuge being in my body. It’s still something I am getting used to.
More recently I was experiencing some old thoughts and patterns reminiscent of my early days with my disordered eating and body dysmorphism. Frustrating because I thought I had laid this behind me. Then in walks Todd into my life, and I get to look at this head on. I am a firm believer that there are no accidents. I know without a shred of doubt that Todd and I were brought together for some very important reasons. I know if he had not met me and my access to cutting edge health care, he would be on a rapid train ride to some serious and likely irreversible medical problems. I have a strong intuition that he and I have something very important to share with the others regarding his healing journey to health.
But I wasn’t aware of how impactful his journey would have on me. I had no idea that I would get to face my unfinished business regarding my relationship with my body.
Living with a T1D requires patience, compassion, understanding, commitment. I am as committed to his health as he is and fortunately he is fiercely committed to his health. Just like an infant who cries incessantly until he is fed, Todd’s body requires the same attendance. You can’t reason with a baby and let him know that gee, this isn’t a good time to stop and eat. We’re too busy, too tired, too cranky to attend to your needs. Todd’s body won’t listen to any “reasoning”. When his blood sugar gets low, he HAS to eat. When it gets too high, he HAS to adjust his insulin pump.
I call him at work sometimes and ask him if he has eaten. When we prepare dinner, we cook for 4 so we have dinner for two and lunch the next day for the both of us. Being prepared is key to living healthily as a diabetic. It’s important for all of us–diabetic or not. It used to never bother me if I ran out of food in the house. I could always grab a protein bar for breakfast and run to Whole Foods or other healthy deli for lunch. Now when I see food getting low in our refrigerator, I panic. We need to replenish–now.
We never leave the house for a hike, a drive or a bike ride without food. We never go anywhere without his glucose monitor, we always make sure there is extra insulin on hand. Meals are planned out, carbs are counted, most food is prepared at home. Gone are the days for him of pizza, sandwiches, fast foods, convenience foods, sugary foods.
I cannot and will not ever ignore that Todd has T1D. Yes some days it is a huge inconvenience. Some days it would be so nice to just to lay in bed and get up for a late leisurely breakfast. Some days it would be nice not to have to sleep with an insulin pump next to me. His disease is part of our relationship, it doesn’t define who he is or who we are. But it is something that we both attend to every day. I am seeing how much it requires of him to manage his blood sugar:insulin:food ratio. I want to help him. To take some of the stress and responsibility from him. He managed it by himself for over 40 years. He doesn’t have to do that anymore. It is not a burden and it never occurred to me to not be with him because he has T1D. But I can truthfully say that I had no idea how involved it is to live with this disease.
For those of you interested in reading more about Todd’s personal journey on becoming a Type 1 Diabetic and what he is now doing to heal this condition, you can access his Kindle version here.