“What does diabetes feel like?” This is a crucial question when you’re caring for, or dealing with diabetes, and its life-impact. If you have your own experiences, please comment, so that more of an understanding can be shed.”
Sometimes Rainie’s nose amazes me! I was driving past the kids’ playground to get to the part of the park we hike in every morning when Rainie uncurled from the floorboards, and frantically began smelling the wind coming through the open window. She was obviously in some distress, so I pulled into the parking lot, leashed her, and let her out. She immediately led me to the play area, and began alerting on a little girl who was running up the slide with a pink pump clipped to the back of her pants. Little pink-sweatered arms soon encircled Rainie, as I talked to “Emma’s” mom. Yes, her blood sugar was low (65), after having refused to eat breakfast. As Emma’s mom and I talked, she mused, “I wonder what it feels like for her when she goes high and low?”
This is a question I’m often asked, “What does it feel like?” It’s taken me a long time to figure out how to explain the answer . I’ll try to describe how it feels to me. (Please remember that I’m describing this as an adult diabetic. When I was young, I had the same feelings, but no words to describe them with.) And as I describe the differences between ‘low’ and ‘high’ blood sugar, please realize that a diabetic often fluctuates between the two states many times a day due to the nature of diabetes.
Low blood sugar, or hypoglycemia, might be fun if it weren’t so scary and disorienting. Hypoglycemia is potentially life threatening because the brain’s only fuel-source is sugar, and with too little sugar, the brain cannot function properly. Therefore, most of the sensations of low blood sugar are brain-based. If my blood sugar (BS) is dropping slowly, the symptoms may be unnoticeable at first and slowly become stronger; and if my BS is falling rapidly, I catch the symptoms as soon as I can. The first symptoms tend to be a general ‘fuzziness or blurriness’ in my thinking and perception. It is very easy to not even realize anything is wrong, and slowly become agitated and frustrated because ‘things just aren’t right’. I may also get very cranky or whiny. One of the most aggravating symptom of low blood sugar is frustration. I like to describe it by saying, “On a scale of ‘one-to-ten’ my frustration tolerance is ‘a negative-three’.” It gets in my way of dealing with every aspect of life, including my ability to make decisions that involve taking care of myself. Everything becomes annoying – kids, traffic, choices, loved-ones (and others), work, my low blood sugar alert dog, etc. I often figure out my blood sugar is falling because I’m so easily frustrated. Living in this frustrated state is especially infuriating on those days when my body is extremely sensitive to my insulin, so I’m dealing with low-blood sugars for many hours at a time. These periods of insulin sensitivity often happen for no reason I’m award of, and cannot be planned for or avoided. When they do happen, it’s difficult to be patient while taking care of myself, and dealing with others. I can only imagine what it is like for other people having to be around me! As my BS continues to drop, my thoughts and reflexes get slower and slower, and my coordination becomes poor. It becomes more difficult to understand conversations and new ideas. I may also make relatively impulsive decisions. These are the times I’m glad I have my low blood sugar alert dog, Rainie. Her alerts keep me from doing things (like driving) when I’m still feeling ok, but could easily put myself, or others, in danger. (I am not drunk – although I may look that way.) As the blood sugar continues dropping, I become physically unstable, emotionally fragile, and easily overwhelmed. I’m dizzy, clumsy, disoriented, teary, sensitive to light, easily confused, and unable to make up my mind (which is really bad because it means I can’t even decide what I want to eat in order to correct the situation). Even though my lips and fingertips may be numb and my vision may be blurry from the low blood sugar, I get angry when people begin to question me and offer help – often becoming defiant. And I need help! And at the same time, I’m somehow unable to take care of myself. And I’m scared! If things were to continue, there is a good possibility I would become unconscious, go into ‘shock’, and, in the worst-case scenario, die.
The symptoms of high blood sugar, or hyperglycemia, are much more physical than low BS’s are. The first thing I notice is a deep headache. Then I get thirsty and agitated – very ‘squirmy’ and unable to concentrate and be still. I crave water to try to dilute my sugary/syrupy blood. I’ve noticed my tongue feels like it’s a dry cotton-ball sometimes. Then, my body begins to ache. Every part of me feels toxic, as if I’ve got the achiness of the flu. I don’t want to move because it feels ‘too hard’ – like walking through mud. And my brain feels that way too. Sometimes I just want to curl up in a dark, cool room and not move. If my BS gets high enough that I begin to ‘spill ketones’, I can get very nauseated and vomit. High ketones are poison to the brain. I’m also very sensitive to the fact that a few hours after high BS begins, my vision gets blurry because the sugar in the blood makes the lenses of the eyes swell.
High blood sugars can be very stubborn and not respond to extra insulin the way low blood sugars respond quickly to sugar. Often, with high BS, the body is resistant to the insulin because of adrenaline released as a protective mechanism by the liver. This can happen as a response to low blood sugar, exercise, excitement and all sorts of emotions like fright/fear, crying and laughter. And at other times, I am extremely sensitive to my insulin and am ‘low’ for hours on end and have a hard time bringing my BS up. Frustratingly, sometimes blood sugar control seems impossible, as if it’s influenced by the weather or color of socks I’m wearing – there seems to be no rhyme-nor-reason to it. Unfortunately, even though it may only take a few hours for the blood sugar to ‘get back under control’ with either insulin (for ‘highs’), or sugar (for ‘lows’), it takes many hours for the cells in the body (and the emotions) to get back into balance.
Life with diabetes is a true seesaw. High and low blood sugars happen. It’s part of living with the disease. If you have diabetes, or know someone with diabetes, please be patient, and be present. We all have ‘one of those days’ occasionally; unfortunately, for someone living with diabetes, ‘those days’ happen almost every day.
Please help me explain what it feels like for you – whether you’ve got diabetes, or are part of the community that knows and supports someone with diabetes. ~h