Everyday normal folks do not understand this, how lucky they are. Lucky that they don’t know, lucky they have an abundance of energy, which is something people with a chronic illness do not have. People with chronic illness energy levels are low even after sleeping all night and the reason is because there illness causes their immune system to continue in hyper drive even when sleeping.
Everyday normal folks don’t understand how lucky they are that they have to do every single thing pre planned and sometimes thought about days in advance. For instance a trip to go on vacation, I begin weeks in advance mapping our route so I know where every single restroom is. Also about two day before leaving to get there or leaving to come home I pretty much reduce my diet to nearly nothing. Which again normal folk don’t know what it is like to choose the pain of hunger over the severe pain of eating while being in a flare up with inflammatory bowel disease.
I love coaching youth sports, something that would be no problem to a normal person, they are lucky. Something that is a simple as spending a few hours a week doing something you love can leave a person that is chronically ill utterly exhausted, planning is a must. Planning how to save enough energy to do the event, and planning enough time after to recover. My wife whom totally has stood beside me gets pretty angry at me most weekends because much of them are spent sleeping to recover from my work week.
Everyday normal folks do not understand this, how lucky they are. Lucky they don’t know the planning of multiple Doctor visits per month, planning for blood monthly blood work, planning iron infusions or B-12 injections, planning for self injections of very scary medications, or the weekly hour filling a pill box. Every second of persons like who is a “Chronic Baby” is planned, this is don’t so we can be lucky and continue our not so normal, our new normal chronically ill life, why, because we have no choice.
WE DID NOT WAKE UP THIS MORNING WANTING TO HAVE A DISEASE, BUT WE DID.
We plan and we fight for every second of health we get and to quote
“You never know how strong you can be, until STRONG is the only choice you have”!
In Your Darkest Moment Always Remember There is Still Hope!!! 🙂