I can't speak specifically to burnout with Hemophilia as we have been blessed with smooth sails. We may have had a few rough patches with gaining good vein access and Jackson has had to endure more than one IV stick at times. For the most part it has been Tuesday/Friday infusions or more if a bleed occurs. We infuse and move on living life.
I can speak to being a caregiver to three chronically ill kids and burnout. Here's the thing...there is no time for burnout. I get cranky, teary, sad but maybe get a power nap in or a belly laugh from something one of the kids has done or a big hug for no reason and the burnout melts away. I can't run or hide. Chronic illness is there...it's chronic. No breaks. No vacations. 24/7/365. Just ALWAYS there. Death is NOT an option and that's what would happen if I didn't take care of my kids.
So on those days where it seems as if I can't handle one more thing...I try to change my attitude. I try to find ONE good thing...maybe the sun is shining or the flowers are blooming or just that one thing that can refocus me from that fleeting thought of a black hole. I push forward and take it hour by hour or in some cases minute by minute.
After all...there is always a silver lining (I know, I know...kinda cheesy) it may be hidden but if you tilt your head a certain way or squint your eyes just right...it's there.
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