Tag 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 Online Burnout

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Its an interesting topic…burning out from your social support network.  It sounds silly but it happens. It has happened to me many times.

I first entered this world 15 years ago.  I was very alone and I found an online community that let me know that other people knew exactly what I was going through. Over the years, there would be squabbles but in the darkest hours there was always support.

I would step back and remove myself from certain groups.  I would feel attacked and even though I knew that some of my core support were there. I would step back.  I would unplug.  I would disconnect.

15 years later there are so many more ways to connect to people online than I was using back then.  The mailing list that was once my lifeline has been replaced by Twitter, Facebook and other outlets.

As the way we connect changed, so have my connections.  I offer advice now and then and provide support through Facebook groups. I share Tweets and take part in blog weeks. I post to my own website and Facebook page but not the extent that I once did.

Am I gun-shy because of the attacks I have taken? No, that is not it.  I have taken some vicious attacks, have shaken my head, and simply continued with my life and my work. Sometimes that has been easier said than done but the DOC has given me a core group of people who always ground me and remind me of my truth.

So how would I advise people to handle Diabetes Online Burnout?

  1.  Walk away.  It sounds easier than it is but seriously, sometimes we need to unplug, unsubcribe, un-visit places that are hurtful for us.
  2. Find your core peeps and keep them close.  Whether you frequent Facebook groups, Forums, or Twitter, you will find a group of people who click with you.  They understand you and you understand them.  Savour and work on that relationship.  They offer real friendship.  Remember that.
  3. Don’t take it personally.  You can’t tackle every issue.  You won’t be an expert in all realms. Its okay not to be a part of every battle.  Offer whatever support you have available even if its just a retweet, but don’t allow yourself to feel that you have to do more or that you aren’t doing enough. You are doing what you can and that’s amazing!
  4. Its not a contest.  If you make a difference in one person’s life, you are a super star! There are many people in the DOC that we would love to get to know better but out there, someone really wants to know you better as well.  Everyone is amazing and has something to contribute.  Don’t feel that you are any more or less than someone else.
  5. Make time to enjoy the outside world.  There is more to life than the online world.  We can become enamoured because we have found a place where people “get us” and then we are devastated when someone doesn’t. Take time each day out for your family, your pet, and for YOU!

Burnout isn’t a bad thing. Its just a time to regroup so that you can move forward stronger and more confident than ever!

 

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.

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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

Diabetes is HARD work!

Yesterday I finished reading Gary Scheiner’s new book “Until there is a Cure“.  I will be writing about it in more detail later this week but one thing struck me as I read–diabetes is hard work! As I have mentioned numerous times, I have been at this game for over 13 years now. I should kind of have an idea of just how hard this diabetes thing is to handle but seeing it in print made it worse.

I was tired and overwhelmed by what I read.  I worried about my son once again.  There were complications to concern yourself with as well as preventing complications.  There are reading before you eat and after you eat.  You need to try to eat lower glycemic food (I am only just figuring out how the glycemic index works after years of a mental block of the concept!). Some times you should graze, sometimes you should pre-bolus, sometimes you should….throw your hands up and say I can’t do this!!! I am not a pancreas! I am not God!!! I am just a fallible person!!!

Yes that was my foot stomping,  with childlike screams, and ranting on my sleep deprived Monday! Now granted after making me feel inadequate, overwhelmed and an underachiever, Gary notes the many great online resources out there. He never suggested that I am a failure. He doesn’t judge or say that you have to do this, this and this or else but just reading about the various types of insulins, meters, trending software, complications, and preventative care initiatives, I was exhausted and sad.

Diabetes asks so much of us. People think that diabetes management means that  you inject once a day, avoid sugar, and lose weight.  That’s no big deal.  Those of us who live with diabetes know the real story.  Parents of children with diabetes have the added grey hair, extra wrinkles and bags under the eyes to prove it! photo