Category Archives: diabetes burnout

The Mental Part of Diabetes…Day 2 of Dblog Week

730x1207[5]The mental part of diabetes is huge.  It is  the  part that the average person  really doesn’t understand. It’s the part that scares me the most.

Everything that a person with diabetes does requires thought. Every action requires planning.  Getting up involves testing blood glucose levels to see if you can pee or if you need to have insulin or food before your first trip to the washroom.

Eating food requires a math lesson–how many carbohydrates are in whatever you/your loved one plans to eat.  Now, how much of that is fiber? Okay, how much fat or protein is in the meal? What is the anticipated activity level for the next four hours? What was the blood glucose reading before sitting down to this meal? When was the last time that insulin was taken? Is there still some insulin floating around in the body that has to be taken into account? What time of day is it? How much insulin to you normally use at this time of day to cover a pre-established amount of carbohydrates? Is there any illness or stress that is impacting blood glucose levels at the moment? After all of these questions have been answered, the totals added, subtracted, and divided, an insulin dose may be given…and you pray you go this one right.

This procedure is repeated every time a person with diabetes wants to eat anything that has any nutritious value…every time.

Going for a long walk or working out is just as an intense of a process.  A person with diabetes must make sure that they have their supplies handy.  Do they have enough glucose if they feel themselves dropping? Have they taken just enough insulin to avoid a high but not enough to cause a low when physical? Have the changed their insulin delivery for the next ____ amount of time to deal with the post-exercise drop and the adrenaline during the event? Do they have enough test strips?

That brings us to simply walking out the door.  People tease me about my purse. It’s a suitcase.  Even though my son with diabetes no longer lives with me, I still tend to carry a massive purse. Once upon a time it had to carry glucose tablets, juice boxes, crackers, test strips, needles, alcohol swabs, hand sanitizer, and medical tape to name just a few items. No matter where my son goes, he has to bring his insulin pump, meter, test strips and glucose. His pockets are never empty.

Imagine the burden of having to remember all of this “stuff”.  Imagine the burden of having to remember to test, to bolus or inject every time you want to eat or nibble at something.  Imagine the stress of having to worry how a meal will impact your blood glucose levels. Imagine having to worry about how that exercise will impact your body while you sleep. Imagine having to worry about going low while you drive.  Imagine having to worry about how that beer will impact your readings later on this evening.  Imagine simply being afraid to go to sleep because you might not wake up.

Everything around diabetes requires thought.  I worry about the toll that that can have on those living with diabetes like my son.

As a parent of a person with diabetes, how do I survive? It has its own challenges.  When my son was small and for all of the years that he lived at home with me, I survived four hours at a time.  I realized that I could only control four hours–the amount of time that his fast acting insulin was supposed to be working. If my son was in range from  7-11am, I would be happy.  I would put the potential  high at 2pm out of my mind. For that moment, I would bask in the glory of getting it right for 4 hours.

Later, I would move on to the next time slot.  Four hours is a relatively small period of time but in the world of diabetes, it can be forever and celebrating getting it right is a wonderful thing.

My son doesn’t live with me at the moment.  That has changed my role dramatically.  At first I was stressed out completely.  He doesn’t look after himself the same way that I do.  Would he test at night? Would he stay up or set an alarm to re-test? How would he handle it when he needed to make changes? How would he manage going to appointments? How would he handle stress? How would he manage alcohol or girls? I was too far away to monitor and he quickly pushed me further to the fringes.

As I was pushed away, I learned that this was his disease.  He had to find his way. I was there when he had a question. I was there to encourage. I am still there to remind him of what he does know.  I am there to watch him learn from a distance.  It is hard. It is also very freeing and that leads to a lot of guilt.  I can now turn off diabetes in a way. I don’t think about it 24/7 but he can’t and I can’t change that.

I worry about him.  He has been dealing with diabetes for his entire life.  He has no memory of life  before needles and testing.  He is quiet. He doesn’t discuss diabetes with people. I fear he will burnout. When he is with me, I help with some of his care. I allow him to choose how much help he wants.

So how do you handle the mental side of diabetes? First, four hours at a time.  Don’t overwhelm yourself with the entire day, just look at the next four hours.

Second, ask for help.  Whether you are the primary caregiver or the person with diabetes, ask for help, accept help.  You need a break. Life with diabetes is not natural. It is stressful and crazy.  Take a break by handing the reins over to someone else if only for a task or two.  They won’t mind and you will be able to breathe.

 

Dealing with Diabetes Burnout..A Book Review

Ginger Vieira recently released her third book called Dealing with Diabetes Burnout,  How to Recharge and Get Back on Track When You Feel Frustrated and Overwhelmed by Diabetes. I was once again lucky enough to be given a copy of the book to read. As I prepared to write my overview of the book, I  took a glance at how many pages of interest I had marked off. A lot! That means that this was a wonderful book with many excellent points for me to share!

I really wasn’t sure what to expect when I began reading this book.  What would I learn? Would much of it apply to me? Who would this book fit? Well, I learned quite a bit. I gained a new perspective and I can think of quite a few people who this book would help.  Most importantly however, it is a great hands on resource for people who live with diabetes–Type 1 or Type 2.

This book doesn’t just give you a bunch of information and feel good stories.  It is filled with exercises and activities that Ginger challenges you to do to help you deal with your own diabetes burnout.  She doesn’t chastise you for the fact that “I haven’t checked my blood sugar in three weeks (ehh…months)” –a fabulous title of one of the chapters of the book.  Instead she reminds you that you are being asked to manage something that your body is supposed to do on its own based on a variety of other physiological and hormonal processes. (page 21).  She tells  you to look at all of the great things that you are doing and praise yourself for the one thing you are getting right. “developing the ability to step back and see what wasn’t working–rather than blaming yourself–is the trick to creating a new plan that will lead you to your goal.” (Page 33)

This theme is further emphasized by all of the great chapter titles like “I want to be perfect by tomorrow (or I’m giving up!) where Ginger notes that some times are not ideal for change. She suggests that you create your own personalized “pick up plan” to help you refocus in times of stress.

Ginger offers tips on how to handle support from well-meaning people who really don’t get it as well as how to best make use of people who do get it and do want to help.  She shows you how to use technology to make your life a bit easier as well as great real life tips for those of us who would just like to live a healthier lifestyle but find ourselves giving up too soon.

Being a parent of a child with diabetes, as I began to read this book I felt horrible.  I was a failure.  I was the parent who struggled to understand how you could “forget” to do something that you have done all of your life.  Did I push too hard?  Should I have been calmer when his doctor praised him for testing more than once per day and I was looking to see 8-12 readings per day? I was sure that I had totally ruined my son’s childhood.

Thankfully I got some reprieve from my incredible guilt when I moved into the chapter called “Crazy Little Thing Called Love”.  Here Ginger talks about raising a child with diabetes and how truly difficult it is to do. She highlights many of the fears that we have.  The torture we go through when our child is low and disoriented or the failure we feel when they are high and we are positive that we alone are responsible for the kidney damage they may one day have. She offers more wisdom and options to dealing with our children and how to get through to our teens. I was left knowing that I hadn’t scared my child completely…well at least not in that realm.

Nearing the end of the book, I came across one of the very best quotes I have ever read on the issue of diabetes care and one that should be framed and read by everyone dealing with this disease (especially us guilt laden parents)….
“Doing the best any of us can do in life with diabetes does not have to mean perfect blood sugars all the time. Sometimes our best is awesome and sometimes it’s not quite so awesome but it’s still our best in that moment.  And that’s okay.  It has to be, because “perfection” is a crazy expectation.”  

Dealing with Diabetes Burnout is a fabulous resource. If I had one criticism of the book it would be having too many personal stories illustrating various points in the book. Reading through page after page of examples of other people’s burnout was taxing on my incredibly shrinking attention span. That said however, I have no clue as to how I would have cut back on some of the submissions that were used.  They were often very powerful stories that needed to be shared.

Who should read this book? Anyone living with diabetes because as Ginger Vieira notes, at one point you will go through some form of burnout.  To a lesser degree, parents of children of diabetes (no matter what age your “child” may be).  This book will give you insight into the emotions that your child may be dealing with and will also give you a few tips to help you in your own life as well.
diabetes burnout book

Dear Diabetes

Dear Diabetes;
I am done. Finished. Resigning.
We have been doing this dance for 13+ years now and instead of getting easier it’s getting worse.
My son is now almost 16 years old.  I can no longer keep him safe and with me at all times. I can no longer do all of his testing, carb counting, and bolusing. I have to let him go off on his own and stumble (or even fall) and I HATE IT!!
I have already done this “letting go” thing with my first son. I get that. He chose to live with his father for his last two years of school. I learned how to parent from a distance.  I learned how to let go a bit more when he moved across the country a few months ago.  It was hard but I understood it was/is part of life with children. 
I worried when he started to drive and got his first car.  I survived the call that said “Mom, I was in a car accident. I wrote off my car.” I made it through the phone call that said “I was out drinking with friends at a festival. We got separated and these guys jumped me.”  I was okay with the calls to pick him up the next morning because he had been out drinking all night, celebrating the end of his course, and had passed out at a friend’s house. These are all things that can happen when we have children. They are part of our lives as parents.
Diabetes, you change the rules and the level of worry.  I worry about my son with diabetes anytime he is away from me. I know that he will try to pretend that you don’t exist. He will skip testing. He will bolus for some of his food but will try no carb food to avoid drawing attention to himself and his pump. He will do his best to appear “normal” to his friends and will treat you as if you are not even there.
When he comes back after time away, instead of simply reliving his adventures, I am stuck dwelling on missed bg tests, high readings and diabetes care neglect. I feel panic levels rising as I know what damage you can bring Diabetes.  I know how dangerous you can be when neglected. I try to remind him.   I know that he wants to forget though. For those few days when he is away, I almost get to forget but he can’t. You are too dangerous, Diabetes.
He is now at an age when I have to worry about drug and alcohol experimentation.  The worry goes up ten fold because you are there.  Diabetes, you are not a helpful friend. You are an insidious enemy ready to further sabotage his attempts at stretching his wings and experiment with life. I am lucky.  My son has not showed a lot of interest in wild parties and such behaviour but thanks to you, I have a hard time focusing on how lucky I am.  I am forced to fret over how you are impacting his life when I am not there to stand guard and act as a buffer.
Diabetes, we have been doing this dance for a long time.  You jab, I duck.  You hit, I push back.  I have been forced to demand things of my second son that I never did of his brother.  “Did you bring your meter? You are NEVER to leave the house without it! This is non-negotiable.”
“Did you remember to bolus for that food when you were out? How many carbs did you figure for it? Did you factor in the activities that you had been doing before/after?” 
“Is that a new site? Make sure its secure before you start swimming.  Do you have a spare just in case? You may need more than one. Make sure you have someone to watch over your supplies.”
These are all conversations that have been had with my son since he was old enough to head off on outings without me.  His brother has never had to worry about the fat or calories in his meals.  He has never had to carry anything beyond his cell phone in order to stay safe and alive. 
Diabetes, you have robbed us.  You have stolen my son’s innocence. We have been cheated out of a carefree lifestyle.  You have made us both worry and obsess over his health when he should be concerned with looking good for this week’s love interest, not worrying about his blood pressure. 
Diabetes, I have had enough.  Really, I am done. Please move on to a rock or some other inanimate object.  People don’t get you and even those of us who have been forced to…well, we are just tired of you.  Life is enough of a challenge.  Your constant presence just makes it that much worse, that much more painful.  Its time for you to leave. Please leave no forwarding address. Please take everything that belongs to you and simply go. 
Sincerely;
A Tired D-Momma

Once again…

Why did I get such perverse pleasure from my son freaking out about his blood glucose dropping and my relatively cavalier attitude? Because this week brought us back full circle to Mom freaking out at him and him basically wishing that I would simply go away or at least give up the rant. 

Once again, I looked at his meter.  Once again all of those readings that he supposedly had but could not remember five minutes later were because HE DID NOT TEST!!!! Once again I lost it. Once again I yelled. Once again I told him that I HATE being lied to. Once again I said that he cannot be trusted.  Once again I wanted to sit and cry.  Once again I worried about the future. 

I still want to cry. I still am frustrated.  I still hate diabetes more and more.  My son is a teen. I get that.  He has a serious case of “teen brain”. I get that too. He is not my first teenage son but thankfully he is my last. 

I hate that no matter what diabetes is there wreaking some sort of havoc in our lives.  There have been a lot of changes in our lives recently. I have a lot of other “stuff” on my mind. I am trying to create a new business.  I am dealing with new budgetary issues. There is Christmas coming up, my car that needed brakes and tires and so much more of life’s daily challenges. I really did not have a lot of time to sit and hover over my son to make sure that he was testing when I asked.  It would appear that I needed to make time but… I DON’T WANT TO!!

I am tired of being the diabetes police. I am tired of testing, bolusing and counting carbs. I am tired of waking up in the middle of the night and convincing myself that I do not want to roll over and go back to sleep.  What I really want to do is to get out of bed, wander down the hallway, find my son’s glucometer and test him. 

No I don’t!! I want to have a “normal” life. I want to worry about him being happy.  I don’t want to have to be the one to remind him that when he looks at his budget in career class, he needs to make sure that he can afford the extra $400+ per month required to keep him alive. I don’t want to be the person to say “I don’t think that career will pay you enough.” “Do you think you will have good medical benefits with that job?” 

These aren’t conversations that I have with my other son. My biggest concern with him is that he spend all of his money on restaurants and exotic groceries.   

We have been doing this diabetes thing for almost 13 years.  Some parts are easier…and some parts remain frustrating. Despite that, I am done. I am tired. I want off of this ride.  We have been on it for too long and knowing that my son will never get off tips me closer to the edge.

Once again I rant and scream. Once again it will change nothing. Once again I will breathe.  Once again my son will test in front of me. Once again I will pray that he truly “gets it”…one day. 


Diabetes its a Time out for you!

Dear Diabetes;

I know that you have basically given me the summer off and I appreciate it.  You were on vacation for four of the last six weeks and I have very little input into what you were doing to my son.  

You returned a few days ago behaving like a spoiled two year old child in full tantrum.  I would kindly appreciate it if you would stop! I have not seen a bg level below 10 (180) or even close to 12 (215) since my son came home. I have injected my son for the past two nights to get some sort of control going on and you have bucked that by still not letting him come down into range. 


You have made his body used to being high.  We have tried numerous site changes to battle you.  I am getting tired. 

You have me up at 3am each night fixing all of the damage you have done throughout the day. You are creating more and more highs.  You are causing me a great deal of stress. I can no longer go back to bed and sleep at 3 but instead toss and turn for two more hours wondering if I will win this round. 

I am tired, Diabetes.  I would really appreciate it if you can finish with this childish behavior and behave for at least a short period of time. We are heading off on a plane today and then will be a way from home for a few days. Granted if there are any major problems we will be in the best possible place next week but guess what? I really don’t even want to see minor problems. I am done. Finished. Consider yourself on a time out! 

Thank you;
A very tired Mom. 

My Diabetes Vacation

I’m back!!! Hopefully you enjoyed the stroll down memory lane while I was taking in the amazing beauty and history of Ireland. 



This trip was incredible for many reasons.  Obviously being in a country that is oozing history out of every pore was a dream come true for me. I love history. I spent a few years in university studying British history and this trip brought me back to a subject that I have always enjoyed. 



Another reason for it being incredible? I left Diabetes behind.  This was the very first time in twelve and a half years that Diabetes moved to the very, very back of the bus.  I kept in touch with my son about once per day.  Our conversations occasionally contained “What are your readings like?”  with his usual “Good” response. The amazing thing is that I never said “Good is not a number.  What is your reading?”. 


I began the trip in my usual style. “Don’t forget to reduce your overnight basal.  You were really active today.”  
“Do we need to adjust that time we talked about or do you think the rates are okay?”


After a few days of enjoying the sights of Dublin and taking in a few local pubs, our conversations became more of “How’s it going?”  and “What did you do today?” with only a small smattering of “How are your readings? Do we need to make any changes?” 

“The Brazen Head” The oldest pub in Dublin!



I have read that parents need to take a vacation away from diabetes. I have always felt it was important for my son to get any break he could now and then by me taking over bolusing, site changes, etc.  I often wish that I could do this for many others living with diabetes–give them a break when they have no one around who can.  I have never been able to give myself a vacation however. 


I am a mother. I worry. I wake up in the middle of the night prepared to test whether my son is with me or not. I look at meals and count the carbs.  I search for a meter two hours after a meal thinking that someone should be testing.  


On this trip, I still woke up in the middle of the night. I still wondered how my son’s readings were going but it was not my most pressing concern. Getting up at 6am, being ready for the bus, figuring out where our next stop would be, how I would fit everything into our luggage and where the best Irish coffee was made moved to the forefront of my brain.  I never looked for a carb count until I ate a cookie on the final plane ride home.  

This picture was right side up but after a few coffee…



I will go through my son’s pump and meter with a fine tooth comb when he comes home but while I was away?  It was something that I would deal with later. 




So my advice to all the parents out there? When your child goes to camp, spends a week with Grandma or goes away with their other parent for a period of time–ENJOY! Let go.  If only once.  Take your own vacation.  You have earned it.  As others told me, you have taught your child well so let them fly a little on their own. You are still there to fix any scrapes but the break will do you both good…speaking from experience!  

Sometimes your the bug

Originally posted in 2009 but the feelings remain the same….

Today I am definitely feeling like the bug. Its after midnight and of course I was dying to get to sleep. I set my alarm for early tomorrow morning…my son’s last day of school. I found a meter and a strip. I grabbed a lancet, waded through all of the junk that the boys had left on the stairs rather than putting away and was off to test. One last check for a few hours. One check and I could sleep! We had been out for pizza to celebrate good grades so my youngest son would still be high. He was 16 (288) earlier so you know I was going to be able to rest.


Wrong! I took the meter. I filled his finger with blood. The strip refused to suck. What the???? Okay, I cleaned the finger. I got more blood. I tried again. It just barely accepted the blood. I waited for the reading…E5. It was an error reading!! Not enough blood. Oh the lovely four letter words that were on the tip of my tongue as I headed back downstairs. Let me try this again.


New meter. This one had to be better. New strip. Same lancing device. Back up the stairs, this time grumbling and picking up items as I went. I threw the items off to the side for the boys to deal with tomorrow and headed to my son’s bed. Once again, I lance his finger. Once again, I get a large amount of blood. The strip sucks this time. I walk towards the stairs not even thinking about having to correct. Good thing…he was 3.2 (57). More choice words as I shuffle off to get some juice. I fill a glass, find a straw and do those stairs for a third time in less than five minutes. He is not keen on drinking. I finally get him to sip. He drinks it all except the last few drops. Those are sucked up into the straw and then fly all over his pillow. He is using my cream pillow cases and I have managed to get strawberry juice on them! I can’t even blame him but I am choked. I clean them as best as I can and now I wait. Why are 15 minutes a lifetime when you are dead tired and simply want this day to end?


Yeah! 5.5 (99) and I am off to bed for two hours. Oh the fun! Oh the joys! Oh where is my DexCom Seven Plus????

Diabetes Boot Camp…Revisited



In March of 2009, I pondered the idea of a diabetes “boot camp”.  I had mentioned the idea in previous posts as an option for a non-compliant teen but began to think about it in a bit more of a serious tone at that point. I wondered if one could truly create a place for learning that was not a supportive atmosphere but a place for tough love?

So many people think of diabetes as not that big of a deal.  We often hear of teens who just can’t be bothered.  There are people with Type 2 who do not take the disease seriously and there are the adults with Type 1 who are just burnt out and can’t get up the energy to fuss any more. Could I create something to help these people had been my question. 

Over the years, this remains my most popular post.  Comments are still coming in and my mind is still wondering, thinking and inquiring.  As some of you know, I am a big supporter of the CWD Friends for Life Conferences.  I am on staff at the Canadian conferences and tell anyone and everyone that they should go to a conference. They are vital to many but there are a few who arrive desperate for their child to “get it”.  They hope that the interactions will be the magic pill that they need for their child to focus and take care of themselves.  I wondered if a more harsh approach would be best.

These teens often shrug their shoulders and skip vital sessions. They are not interested in making new friends and block out attempts to get through to them. Would a harsh approach work? What would a harsh approach look like? How could you get results like “Beyond Scared Straight” but for a disease?

What about type 2s? How do you get to them? I think that in some respects they would be easier than teens and in others they would be a lot harder to reach.  Someone suggested learning sessions with or without your partner.  I think that would be helpful. Adults know that they are going to die.  They can be shown that they are putting themselves on the fast track by pretending that they do not have a serious illness.

That leaves adults with Type 1.  They know the drill. They may even know what to do but they need a kick.  They are living with depression or burnout and they need help.  A butt kicking approach could be successful but with a lot of support thrown in once they decide to move forward.

Diabetes boot camps do exist. I have seen a few posted that are directed at primary care providers.  There were even one for people living with diabetes but I did not see anything along the lines of what is in my head.  What is that? Well its a very fragmented idea at the moment. I see three very different needs.  I see the need for specialized experts who are also very caring individuals.  I see the need for sponsors to be involved and the support of diabetes organizations. I see exercise as being important but so are many other areas. I see intensity and education balanced with compassion and understanding.

I invite you to re-read the old Boot Camp post.  I also would love to hear what you think on the subject.  What would you want to see? Do you know people that could use this approach?  Could it be virtual or should it be only a physical location(s)? What problems or benefits do you see? Leave a comment or email me.  I would love to hear from you as I seriously begin to revisit this concept in 2012.