Sleep and I Are Not the Best of Friends
There are plenty of people out there who love sleep. Whether it’s sleeping in on a day off, taking a nap when you can squeeze in some time, or just enjoying the comfort of your own bed… it’s not hard to find a reason to enjoy closing your eyes and resting in comfort. I am not one of those people. The relationship between sleep and I has always been rough – – and if the body didn’t need sleep it would probably be pretty close to nonexistent. People who know me wonder how I can function so much without getting a lot of sleep. For most of my life I have been able to function on four to six hours of sleep a night. Even on weekends when I didn’t work I would stay up late and wake up early. Whenever someone would ask about being able to sleep so little and accomplish so much I often brushed it off by saying it was just something I was able to do. The honest answer is that diabetes was the start of where my relationship with sleep began to fade.
Before being diagnosed with diabetes I was sleeping like an average kid. It was normal and there wasn’t anything much to it. I went to bed and woke up like most kids my age. No problems. No reasons to avoid going to sleep. No need to wake up in the middle of the night for anything. I went to bed pretty content and woke up in a similar manner. Everything changed immediately the very same day I was diagnosed with type one diabetes. I was rushed to the hospital and was unconscious after having a blood glucose level of 1,500. I woke up the next morning with intravenous lines in both arms, monitors attached to my body, and hospital staff all over.
Sleep would never be the same. The first night I was woken up every few hours to have my blood level taken and asked how I was doing. I was also uncomfortable as can be after throwing up and dry heaving for two straight days. Trying to get comfortable under those conditions was quite impossible. The physical discomfort and medical procedures weren’t the only two things keeping me from falling asleep though. That night in the hospital I had a flashback of everything that happened to me. It was in such vivid detail it was as if I was right there again. I remember everything about throwing up, feeling so weak and sick, hearing my mother come home, passing out unconscious, being placed in an ambulance, being transferred from one hospital to another, and then suddenly waking up in the hospital bed sweating and breathing hard. This happened three times out of the total week I was there. Sleeping became not only uncomfortable physically, but it now entered into a realm of fear in relation to experiencing those flashbacks.
Finally, I was able to return home after a week of being in the hospital in recovery. I was looking forward to going home in the comfort of my bedroom and being able to sleep in my own bed. I optimistically thought this was going to the time where I could finally rest and recovery from the nightmarish experience of being diagnosed with type one diabetes. That was short-lived as I was informed and instructed of having to wake up every two hours in the middle of the night to check my blood sugar. After the initial diagnosis my body had no more insulin-producing cells in its body – which meant they needed to figure out the correct rate I would need to in order to survive. So for the first few nights my mother slept in my room and set alarms for both of us to wake up and check my blood.
It didn’t take long for me to hate the fact that not only I had to do that but so did my mother. She slept on a bedroom floor in order to be there for me and help out. Such an incredible thing for a mother to do and at the same time a shameful feeling that it was my fault she had to do that. So after a few of these nights I decided that I would stay up all night so she wouldn’t have to do any of that. I stayed up doing whatever I could so the alarm wouldn’t go off and wake her up. I listened to music, played video games, and read books to constantly stay awake. It wasn’t enjoyable for me – but I felt the least I could do was help her not have to experience the same thing.
After some time we were able to find out more about the correct insulin rates I would need. I no longer needed to wake up every two hours to check my blood sugar. Relief in hand, but after that another sense of anxiety began to sink in… returning to school. See, for the first week I was in the hospital and out of school and when I returned home I spent time focusing on recovering and getting my blood sugar under control. But that could only last for so long. I haven’t seen any of my friends, classmates, or teachers for some time and did not really know what to expect. Also, the loss of eighteen pounds, extreme dehydration, and the development of thrush (a fungus on my tongue) made it difficult to feel really up to going back to school.
Going to school was exhausting – physically and mentally. Concentrating was nearly impossible. And I was sleep deprived where my ability to function was extremely difficult. It didn’t take long for my grades to start declining (but diabetes and school is an entirely different topic). After this repetitive pattern it became easy for me fall asleep at night. Finally, at least the day in and day out exhaustion would push me to find comfort in being unconscious. But that was often interrupted. High blood sugars, low blood sugars, and those awful flashbacks of what happened to me in the hospital. Low blood sugars sent me to the kitchen where I would devour food. High blood sugars would send me to the bathroom having to urinate each time. And those vivid flashbacks would wake me up sweating and breathing hard, leaving a fear of falling back asleep. When that happened I would simply stay up and refused to go back to sleep.
This happened for a number of years. I started to hate sleep. And over those years I began to develop more ways of dealing with the lack of sleeping. I would stay up in the middle of the night continuing to read, watch movies, play video games, listen to music, draw, and even do work for my father’s consulting company. I became a night owl and a morning person at the same time – sounds completely horrible. Things did improve when I started making changes in my life as a type one diabetic. As I continued to accept the disease and work towards a healthy way of living it did help when it came to my sleep. For one, I was not longer interrupted by the high and low blood sugar levels. It still happens… but not all the time. Second, and most important, the flashbacks completely stopped. How and why I don’t really know. But as soon as I faced having type one diabetes and deciding to work towards living a happy and healthy life there has not been a flashback ever again.
My sleep has been impacted for so many years it was difficult to see that it was going to be anything but normal. So at the age of 18 I began working at a fitness gym in the morning before going to school. That required me to be up and at the gym by 5am. Did I go to bed early? Definitely not, most of the time I stayed up to 11 or midnight and woke up at 4am to get ready and go to work before having to be in school all day. I never took naps either – – except for what has become known as my weak cat naps consisting of setting my alarm for 10 minutes and closing me eyes. In April I will be reaching my 19 years of living with type one diabetes. Sleep has never been the same and it still isn’t. So where does that leave it now?
Despite no more flashbacks I still do experience nightmares. I experience nightmares actually quite often throughout the week. At the time of writing this post I experienced nightmares two nights in a row. I still have an extremely busy lifestyle working an incredible amount and having not as much time to just “rest.” I still deal with highs and lows, and most often lows. I actually have a pattern of low blood sugars occurring most often between the hours of 1 and 3 in the morning. The insulin pump doesn’t help as much either. Prior to being on the insulin pump I used simple needles to inject insulin. Now, with being on the pump I constantly have it attached to me – – which can make sleeping somewhat difficult. The insulin pump is often placed on my stomach and sides… and ironically enough I can’t fall asleep on my back (which would be tremendously helpful). So sleeping depends on which side my insulin is in and the ability to change positions is less available.
I have done some things to try and improve on sleep. One of the strategies is using a relaxing candle at night that usually has some kind of aromatherapy in it. It actually helps with reducing stress and mind racing prior to falling asleep. Another strategy I have used is recognizing that things can wait to be done (such as reading, writing, drawing, work, etc.) later after I get a decent amount of sleep. The best kind of sleep I ever get is actually after a race or long run. It is the only time where I feel most relaxed or comfortable falling asleep. So as my running has increased over the years I also recognize it as a time to get more sleep when I can. Other than that… I rarely have a night of sleep where I go all the way through uninterrupted.
That’s the story behind why sleep and I really do not get along. We are still not the best of friends. But over the years we have learned to get along. That’s a lesson you must learn while living with a chronic, disease with no cure. Learning to co-exist with type one diabetes is a must if I want to keep living.