Sleep Guilt

Do you ever feel guilty for sleeping? The other night, I was in bed and really wanted to roll over and go back to sleep. I am a night-time tester and have been since diagnosis. I know some people do not believe in a need to test at night and that is their choice.  For me, night testing is not a choice but a job that I must do to keep my son safe, healthy and alive each night.

I know how important this is to me.  I know that there are nights that I have woken up at unexplained times to find him low and dropping.  I know that I have checked at other times and found him high or with site problems that I was able to stop before they turned into ketone issues.

I am very conscious of how “lucky” I am to be able to test my son at night. I know that there are parents who have lost their children to diabetes that would gladly take my place for a few nights.

I should be used to interrupted sleep. I have not slept through the night since the before the birth of my first son.  He was a terrible sleeper who never slept through the night until he was six years old! Waking, walking, testing, and going back to sleep to do it all over again a few hours later should be habit and simple.

Despite all of that, I often feel guilty when I wake up and don’t want to get up.  When I have those moments of decision–when was the last time he was tested? What was his reading? What are the odds of there being a problem right now? Do I need to test yet, should I do more research and visit their website one more time or can I doze off for another hour?

Sometimes those questions simply make sense.  It may have been three hours since I went to bed but I know that my night owl teen has only been asleep for an hour and he normally does remember to test before he goes to bed.  He also knows to tell me if there is a problem before he goes to sleep. It may therefore be safe to sleep a little while longer. Sometimes, those questions are purely selfish. My bed is warm.  My body is in a pleasant state of relaxation and I really don’t want to disturb it. It’s at that point that I feel guilty.

Getting up is my job. It is not one that I would have chosen but its the role that I have been given and it is very important.  My son will sleep through almost anything except the worst of highs.  Some days I wish it was different but as I have said before, everyone has something to deal with.  This is our “something” and honestly, the alternative is not worth a thought. So I live with the guilt of sometimes not wanting to get up.  I push past it and do my job–the job of a parent of a children with diabetes.  fight the d monster

My Petition to Mankind

Today’s blog week prompt challenges us to come up with our own online petition. There have been a few petitions circulating lately so if I had my choice, what would I petition for?

That is a real challenge.  I have read a few posts asking for greater meter accuracy and even petitioning test strips to find their way to the garbage can. I would of course love to see both of those things happen! I would also love protection for all children with diabetes in schools. I would love for cheaper air fares that would allow families to travel with greater ease to diabetes related events.

I think the thing that I truly want more than anything else is access to devices and supplies for EVERYONE!  I don’t care where you live in the world, you should have access to enough insulin, syringes, test strips, pumps, and CGMs. I cringe when I hear of anyone who can only test once a day (or less).  I cry when I hear of people barely able to afford insulin. My heart breaks when people have to choose which child will have an insulin pump because both children have diabetes but they can’t afford a pump and supplies for two children. That just should not be.

So pharmaceutical companies, governments of the world, humanity, I am begging of you…

  • Please ensure that everyone who needs insulin has access to  the best available insulin no matter where they live.
  • Please make sure that everyone, no matter where they live, have clean and sterile syringes.
  • Please ensure that all people living with diabetes have adequate access to the most effective glucometers and as many test strips as they need to manage their diabetes care to the best of their abilities. 
  • Please ensure that the most innovative insulin pumps are available to anyone with diabetes, anywhere in the world, who wants to use them.
  • Please ensure that Continuous Glucose Monitors are available to everyone who wants to use them as another management tool no matter where they live or how much insurance they have.
  • Please ensure that all people living with diabetes have access to the best possible tools, education, and devices regardless of insurance, race, financial background, or geographical location.

No one should have to make the choice between food and life, between electricity and insulin.  Let us become a humane and just society offering the best possible healthcare to all of the Earth’s citizens not just a select few.

Signed,

A mother who cares.

petition

Until There is a Cure–A Book Review

A few months ago I was asked to read and give my opinion on Gary Scheiner’s latest book.  I have listened to Gary speak at Children with Diabetes Conferences. I have spoken to him on  number of occasions.  I have heard the praises of his book “Think Like A Pancreas” and continue to swear that I will read it soon, so I was really excited to get the chance to read Until There is a Cure. I had no idea of what I should expect of the book. I wasn’t sure who the target audience was and wondered who would benefit the most from its wisdom? I began the book eager to see what I would learn. I love to read. I love to learn.  I love to find new ways to make my son’s life easier and more complete.  Its not surprising then that by the end of chapter one I had many passages highlighted and marked to come back to later.

cure bookIn the first chapter Gary aptly points out that it is unrealistic to expect your doctor or nurse to be the expert in your diabetes care. It is your job to do so.  It is your job to learn and become educated. Until There is a Cure allows you to do just that. Gary wisely warns that you must strike a balance in your diabetes care and tells the reader…”If you put more time and energy into taking care of your diabetes than you put into your family, work, or social life, something needs to change.”

 

By the second chapter, we get a lesson in Diabetes 101.  While most of it was review for those of us who have been playing this game for too many years already, there was still information to learn and understand. Information on dietary supplements like the megaspore probiotic that is all over the news lately, exercise, stress and depression help to make a demanding condition more understandable.

As the book moved on to discuss insulin and delivery, I was very intrigued.  It was great to see the “Trend” boxes with short tips and bits of information. The box which highlighted my own personal belief that “The type of pump should be chosen by the person who will be using it, not his or her physician.” made my day.  This was also a great section for those living with Type 1 as well as Type 2.  In reading it, I realized quickly what type of therapy I would want if myself or a loved one were diagnosed with Type 2 diabetes.

By chapter four we are over halfway through the book and get some great tips on the many glucometers available as well as some information on various Continuous Glucose Monitors.  I was a bit surprised when I read that “meters themselves cost about the same as they did 20 years ago, and test strip costs have actually increased.”  I see that meter pricing has not really changed although personally, we have been given a large number of monitors because of the large number of test strips that we use on a monthly basis.  Again personally, I have seen a slight decrease in test strips.  Perhaps this is a geographical difference and the drop is not overly significant but test strips which consistently cost at least $1 per strip, now cost me around 80 cents. Not a huge savings but I will take what I can!

The second to last chapter of this book deals with a subject that none of us want to look at.  It is a chapter that those of us who have been in this game for a double digit number of years fear.  This is the chapter on complications, but Gary doesn’t dwell on the negative.  This chapter is titled “Advances in Fighting Complications”  and addresses how we can be proactive in our care.  Instead of leaving you with a feeling of inevitable despair  there is hope offered here.

As I finished the book, I was exhausted to think of how complicated dealing with diabetes was.  The reader is taken on a journey through the glycemic index, graphs on glucometers, insulins, vitamins, exercise, Alzheimer disease, depression,  Diabulimia CGM technology, how to fight complications and finally where to find support .  Despite the daunting content, the book was surprisingly light and easy to read. It is a great resource for the newly diagnosed Type 1 or Type 2 person living with diabetes.  It also provides some great information for veterans and those who are diabetes information junkies.