The reality of never getting a day off from health challenges in chronic illness REAL… and HARD! My everyday begins with pills, and each day ends with pills… in addition I have to eat 4 meals daily of specialized food due to 20+ food allergies/sensitivities which all have to be home-made. I also have 30+ supplements I have to take daily in both capsule form, lozenges, liquids and special pharmacy compounded powers. Then there is the daily physical therapy, detox-work, mandatory 9 hrs a day of sleep, daily inhalers, all on top of regular doctor appointments every 2-3 weeks or more during acute illnesses. Then there is all the time needed to manage everything, keep medical equipment maintained, cleaned, keep supplements and medications in stock, re-order in time, have prescriptions picked-up/delivered… it just literally never ends.
I don’t even dream of vacations to go to a new place anymore, I simply dream of a day where I could have a vacation from the demands of this failing body.
If this is you as well today, just please know it is worth the continued fight and effort to preserve your health the best you can! When you are feeling low on motivation to keep up the grind turn to a loved one, or look to other spoonies here in social media land to give you strength. It sucks, it is exhausting like nothing else in life, but you are not alone, you are worth all the efforts, and there is hope for better days ahead.
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