What’s in a Name?

If there is one positive thing to come out of the tragic passing of Robin Williams, its the fact that so many people are talking about depression.  There is a huge effort to help people to understand the dark insidious nature of this disease–and the fact that it is a real disease not just a feeling of melancholy that we all experience now and then.

Clinical depression is a prolong sadness that has a chemical component that most often requires specific medications to begin to improve. It requires the use of a medical doctor and can be physically debilitating.

The most interesting thing that I have read in the past 36 hours or so since I heard about Robin Williams’ passing is a debate that I hear in the world of diabetes all of the time–people would pay more attention to this disease if it had a different name.  People think of depression as fitting things like “rain on your wedding day and a free ride when you already paid” to quote Alanis Morrisette.  These are not exactly issues that lead a person to take their own life…unless they are already experiencing a much deeper pain.  There is a feeling of a need to disassociate the mental illness from the emotion.

In the world of diabetes, we see this same desire often.  People feel that the label Type 1 diabetes does not go far enough. It doesn’t show the true nature of this disease.  It does not remove itself far enough away from another condition that is often associated with poor diet and the ability to be “cured” with diet and exercise.

Personally I am always led back to Shakespeare when this debate is brought up.  “What’s in a name? that which we call a rose By any other name would smell as sweet.”  Okay, diabetes is not as pretty as a rose and when you can smell “sweet” when dealing with diabetes we know that you are in serious trouble but you get the point. A name means nothing. It is all about the awareness.

Type 2 diabetes is not limited to people who are overweight. It is not magically cured by diet and exercise, but it is able to be managed that way unlike Type 1 diabetes.  Type 1 diabetes will not be cured with insulin.  Wearing an insulin pump does not mean that you don’t have to think about diabetes ever again.  Misconceptions.  Fallacies. Misinformation.  It happens with every disease.

The general public is ignorant about many things. I knew nothing about diabetes until it tried to steal my son in March of 2000.  I now know more than some medical professionals but I know little about Multiple Sclerosis or other diseases. We educate ourselves to what is important to us. It is our job as people who have become experts is to educate the outside world to the important parts of our conditions.

They do not need to know how to carb count but we must work to teach the general public that there is no known cure for diabetes…unless you are a mouse.  An insulin pump does not mean that you have diabetes “really bad” and it does not cure your diabetes. It is a management tool that requires work and fine-tuning but is preferable by many to help maintain better blood glucose levels.  Myths must be debunked to create better understanding and support.

Much of the same can be said for depression. It is important that the stigma be removed–just as the stigma of diabetes needs to be gone.  No one “caused” either condition.  Both require medical attention and serious work to be able to manage.  Ironically depression is twice as common in people living with diabetes as it is in the general population and if you have depression but don’t currently have diabetes, don’t worry because people living with clinical depression are more likely to develop type 2 diabetes!

Robin Williams is getting people talking about depression. Mary Tyler Moore, Brett Michaels, and Nick Jonahs have all done the same thing in the world of Type 1 diabetes.  Our goal as people who live with these conditions each day is to make sure that the conversations do not end and to take this opportunity to educate people on the realities and dispel the fantasies.
rosePlease remember that if you are experiencing a prolonged sense of sadness that is impacting your daily routine or having thoughts of suicide, please contact a medical professional. If you are having trouble dealing with life with diabetes, a counselor or life coach may help you to find new coping mechanisms.

Diabetes and Depression

I don’t want to get out of bed. What difference does it make any way? I am tired. I don’t matter. I can’t take it any more. I can’t lift this dark cloud that hangs over me. I am poor company. My family is much better off without me. I don’t make a difference in the world. I am just taking up space. No one would miss me. What is the point?

Does any of that sound familiar? Many of us have had some or all of these thoughts to varying degrees. Yesterday’s passing of Robin Williams showed us that money, fame, and talent do not protect you from the devastating reach of depression. Sadly, if you live with diabetes, you are also twice as likely as the rest of the general population to be effected by depression.

The Diagnostic and Statistical Manual of Mental Disorders characterizes clinical depression “as having five of more of the following symptoms during a 2 week period and represents a change from previous functioning with at least one of the symptoms being a depressed mood or loss of interest or pleasure.  The other symptoms included a diminished interest or pleasure in almost all activities most of the day, may appear tearful,  significant weight loss or gain, insomnia or hypersomnia nearly every day, psycho-motor agitation or retardation never every day, fatigue or loss of energy nearly every day, feeling worthless or excessive or inappropriate guilt, diminished ability to think or concentrate, or indecisiveness, recurrent thoughts of death, recurrent suicidal ideation without a specific plan or suicide attempt.  These symptoms are not brought on by medication or other physical condition and impair ones social, occupational or other important areas of functioning. ”

Everyone has those days when the world seems dark and bleak.  People living with diabetes however are cautioned by experts to watch a bit closer for signs of clinical depression in their own lives.  Gary Scheiner mentions this issue in his book “Until There is a Cure“.  He and others note that the pressure that comes with diabetes care, the need to “get it right”, and be the perfect diabetic can lead to failure and a deep sadness that can spiral into clinical depression.

We are also reminded that the people with diabetes are not the only potential victims.  Parents of children with diabetes may also find themselves in a pit from which they cannot see the light. We often experience our own guilt for first somehow allowing our child to develop this disease. There is the guilt over nagging them to test or inject.  The feelings that we are robbing our children of a “normal” childhood by forcing them to take responsibility for their diabetes care too soon can be overwhelming. The list of reasons for sadness go on in both those living with diabetes and those who care for them. The challenge is to recognize the symptoms and get help.

The Mayo Clinic feels so strongly in this that their website specifically cautions people living with diabetes to be very alert to signs of depression.  If you feel that you are suffering from clinical depression, please see your doctor.  Just as you take insulin to deal with the imbalance in your body thanks to a non-functioning pancreas, it is important to take medication that can help to work with brain chemistry that has somehow found itself out of balance as well.

Counseling, therapy, and even life coaching can help to deal with the daily stressors of diabetes care.  They can help you to deal with triggers and create coping strategies but they will not fix the chemistry if you suffer from clinical depression. If you are struggling with a diabetes diagnosis, please look for support from others. If you feel that the depression and sadness has become prolonged or overwhelming, please see your doctor. Together you can  create a plan to help you find your way forward again.

robin williams

Thank you for the years of enjoyment and sharing your talent. May you find the peace in death that you were unable to find in life. RIP

Confessions of a D-Momma

At the beginning of the year I posted about people living with diabetes and depression and/or burnout.  As parents, we ache for our children going through this each day and do our best to relieve some of their burden. Many parents go through a depression or period of mourning at diagnosis but I wonder how many feel that they may have developed depression in part because of diabetes moving into their homes?

When my son was diagnosed, it took me months before I sat and cried.  Initially I was so happy that he was alive that I didn’t think beyond that.  As he grew stronger, my focus was on learning and the fear of “what if”.  After months of testing and injecting, it hit me one night…I would never make him better. I would continue this routine until he would do it himself but he would not be cured. I sat alone in the dark and cried.

I moved on after that. I took control where I could because diabetes had left other parts of our lives so out of control. I found an amazing online support group.  I met some local people who became friends.  They understood my life and it made me feel less alone. I plowed through and worked on a variety of issues. I tackled the federal government and had them change the Disability Tax Credit, making it more fair for people with diabetes. I joined groups and committees. I advocated for change in a variety of areas. I organized diabetes walks, created a website and eventually began this blog.

Despite all of these great things and the encouragement of many, I always had a sense that I was not doing enough. I was inadequate. Change was slow.  Rewards were gifts to the heart.  Because most of what I did was volunteer, there was very little, if any, financial reward. Money is what makes the world go around and if you have no financial worth then what is your value? People would tell me that I should “get a life”.  I should “get over it”. I needed to “get a real job”.
In my heart, I know my value. I know what I have done as a parent, a mother and an advocate are very important. These comments still haunt me however. They still make me wonder.  I know the good things that I have done and continue to do. I see my son’s A1c when he is with me and I know that I am important to his health. I know the real value of that gift  When I begin to forget my worth, I often receive amazing emails and comments that truly light up my day. The value of these comments and the friendships I have made are well beyond a financial measure to me. 

And yet there are some days this knowledge is still not enough to see me through to the next day. The demons, the comments, the fears, the exhaustion–they are all there in the back of my head.  They lurk, telling me that I am not good enough–as a pancreas, as a parent, as a person.  The depression takes over. A black cloud hovers overhead.

Its a cloud that I cannot quite seem to easily escape. I look at myself and ask, what gives? I have a lot of blessings in my life. I have a lot to be thankful for. What is my problem?

I wish I knew. I have to fix it. I have seen many victories from many battles over the years–both personal and in the diabetes world. I should be happy with my successes. I should not be sad, depressed, blue, fearful or lack any self-worth. Perhaps its a shift that I need to make within me–to focus on the positive and push back the depression and feelings of inadequacy.   
Diabetes has taken over a lot of our lives. It has brought many changes and has brought me many blessings.  It has changed me. It has enhanced me.  It seems to have also brought a friend called depression but I won’t let it win any more than I will let diabetes win.

Diabetes Burnout

This morning I read a post about an adult who was suffering with depression and struggling to keep his diabetes in check. He knew what to do but just could not always bring himself to do it. The post really struck a chord with me.

As a parent of a teen with diabetes, I don’t have to remember to test before and after every meal or intensive activity.  I don’t have to remember to bolus for every meal. I don’t have to watch my pump for reminders of site changes, low cartridges and low insulin. I do not have to carry around constant reminders of my diabetes.

My son leaves the house and takes diabetes with him.  When he sleeps elsewhere, he is in charge of his own care.  I technically get a break.  I still think about it. I still count the carbs in a meal out of habit. I will still keep an eye on dates and ask about site changes. I will look at trends and deal with adjustments. I get tired and yet I am not the one living with diabetes 24/7. This scares me.

My son came home a few days ago after spending time with his father and other family members.  He didn’t change his site.  I avoided looking at his meter until later that evening. He had come home alive.  I did not want to ruin our reunion if things were not as they should be…and they weren’t.  When I finally scrolled through the meter that he used, I found times that he went over 12 hours without testing! The readings that were all “in range for the most part”, included a 28 (504). 

I was too tired to scream despite having just had five days away from diabetes. I was too tired to fight about it. I read through the readings aloud.  I asked him if he had used another meter because there were a LOT of missing readings.  He gave me his usual look of “of course I must have used another meter because I would never do something like totally neglect myself just because you were not there to remind me.” I knew otherwise. He knew I knew. I walked out of his room.

If I can get this tired, this frustrated, this worn out after 11+ years and its not my disease, how do those living with it handle it? How can we not expect depression? How can we not expect burnout? We can’t.

We can only offer help and be there to lean on.  My son has been able to bolus on his own for many years but there are still times when he hands me his pump after a meal.  He has been doing his own site changes since he was at least 11 or 12 but he still calls me in now and then to do them.  I am okay with those breaks. He knows what to do but some days its just nice to let someone else deal with it. I hope I can continue to do this for him…not forever but whenever we are together.  Hopefully it will help when he has to battle his own diabetes demons.

A moment of sadness

Last night I woke up at 3am as usual.  I grabbed my housecoat and headed across the hall to test my son.  He was low.  He had been high the night before but a site change and set things back on track…he was now low.

I decided against feeding him glucose tablets because of his aversion to the “glucose hangover”.  I headed instead to the kitchen to grab a glass of juice.  Just in case, I added extra sugar. It was 3am and I really did not want to be up until after 4. Armed with juice and straw, I headed back to his room. I touched the straw to his lips and watched him drink it down like so many times before. 

I went to my room to grab a book and my glasses. I had at least fifteen minutes to kill before retesting so it was time to get an Iris Johansen fix.  I curled up on the couch and settled into my novel.  I kept my phone nearby so I could see when my time was up.  Fifteen minutes quickly passed. I slowly walked back to his room. I tested him and he was in range.

Normally I would remember the reading that allowed me to leave my book for the night but last night was different. It was overshadowed by a sadness. I don’t normally allow any sadness or much pity to enter my life when it comes to diabetes. I have had a “no nonsense” approach since I learned my son would live. It has served me well for over 11 years.  Don’t get me wrong, at 5 am, after two hours of battling a low, I do still have meltdowns and the “why me??’s”. 

Last night, something different took over. It was a complete sadness. A sense of futility.  I looked at my son sleeping in his bed. I knew how lucky we were. I was grateful for a five second meter.  I appreciated the pump that kept his life almost “normal”.  I was glad that I was able to wake so often and catch both highs and lows. 

All of that paled in that moment for some unknown reason.  I looked at his sleeping form, peaceful and without a care, and I saw no end.  I saw no end to the highs and lows at night. I saw no end to the testing–no end to the worries. I saw him becoming a man and carrying this burden himself. I saw him trying to balance the financial burden with his need for quality health care.  For just that moment, there was no stopping the sadness–the desire to take it all away while knowing that you can’t. I felt hopeless. 

I slowly walked back to my room with a tear stain on my heart but in the morning I would be ready to face things again.  We can only take each day as it comes, brush away the sadness, and hope for a better tomorrow.