Saturday 17 March 2018

Burnout - Individual and family




I like this line from another post I read "would you accept a job that you worked 7 days a week, 24 hours a day with no annual leave or even sick days?" I know there is not an inch of me that would say yes but each one of us with T1D has exactly that, an endless job that does get the best of us sometimes and you fall into a state where you are tired, exhausted and you really don't want to or can't explain why this is happening to you.

Diabetes burnout, as much as we don't want to talk about it is a part of a chronic disease that we live with every second of every day. Burnout is just as it says you get to a point where you mentally don't want to continue the acceptance of either counting all the carbs, analysing the exercise, calculating the insulin, making sure that we have our numbers that can be always on a roller coaster are as flat as possible. It can begin with just one of these or it can be built up out of all of them at the same time. You become tired and to do the simplest diabetes task plays on your mind and frustration and anger rise. As an T1D adult that have lived with this for some 28 years I still go through times where I am just tired and question why me but I have also learnt to understand and recognise what is happening. I also believe that the biggest thing I have learnt is to accept what it for what it is and to process through it.

No matter how far I fall into burnout I ensure that my insulin and my tests are done but things that help are

  • Telling someone that understands - Even if it is to say I hate it and I don't know what to do allows you to get the feeling from your chest and to have someone else help with the burden even just for a second. This is very much an emotional understanding that we all need and require.
  • For me I treat myself to something that I wouldn't let myself have. I know that we can do or eat what ever we want, however I set myself limits both for control and long life health. For example I will go and get a cake or something similar, still have my insulin for it, but will go on the roller coaster that it brings. I will do this with no guilt as it is for a reason. I learn from both the feeling of control and lack of control. 
  • Accepting and allowing burnout to happen over a 24 hour period also helps but I use sleep as the catalyst to start a fresh. Each day brings new things and the ability with T1D to start again. You have no food in your system and no exercise altering what your body is doing.
I have talked of this before but today I see another side, I see a burnout from a carer of a type one child and me a T1 adult. It has now been 5 years that my whole family has needed understand this battle and because it is very much second nature to me I forget that it can be scary, daunting, overwhelming, confusing  and out right unfair on those that don't know what the T1 is feeling but has the complete responsibility for management in ultimately keeping someone alive through the actions they do. Don't get me wrong I still have all these feelings but I suppose to understand the intricacies of T1 has allowed me a slightly more process driven with the ability to go head first in managing what has to happen. In one way removing some of the emotion if you like.

We, as a family, have adapted and taken on a massive amount of information in a very short time, this information is not just to do a job 24x7 but to do the job while being a teacher, role model, doctor, nurse, dietitian and biggest of all a parent. The emotional elements that come with the last in the list are the driving parts that allow the rest to fit into place. This is a remarkable feet that I cherish each and every day.

Today I see burnout not as I usually do. Not from me having enough but from my family who can get frustrated because numbers are not perfect, because sometimes there just isn't an answer, because to not test at night (which would mean nearly 8 hour sleep) is like saying we will run the tight rope and hope that everything is ok and we all wake in the morning and because we allow emotion to take over from procedure. This is human nature and is in each and every day and needs to be there but as doctors do they remove emotion to ensure the logical path is taken rather than the emotional one.

This burnout is difficult as it is all encompassing and takes you out at the core of your humanity. We will never stop no matter the burnout we will be in because it is our daughters life that is at stake. We will learn together and I hope as someone that has lived this battle that I am not only able to share with my daughter some do's and don'ts but also help my family with information that will hopefully just make things a little less stressful. I was going to say easier but I honestly do not think any part of T1D is easy and to say so would be to disrespect to what we put into each and every day.

Prior to my daughter I managed myself and kept the nuts and bolts to myself because other than fixing a terrible high or low all the other things could stay with me. 

This disease is a battle not only to the T1D but those all around. Those who care enough to know what is happening and those who want to take the time to take on another full time or part time job. Next time you see or meeting a T1D acknowledge those who spend every moment of there life managing, learning and adapting to ensure there loved ones will continue fighting to become some of the strongest people in the world.