I have been living with my illnesses' most persistent and debilitating symptoms since 2009. You would think that living with something 365 days a year would become routine and controllable. But I assure you that it is not the case; especially when your illness is aggressive and progressive with no remission to come. At some point each week I think that I am as sick as I can possibly get, then I get even sicker.
What is most annoying is that my symptoms guide what I will be able to accomplish in any given day. It is near impossible to "make plans." One week I am in the pattern of being my sickest during the morning hours; the next week it is during the night hours; the worst is when I get no relief at all in a week--and I am having that right now. It makes me feel so insignificant when I can't do for my own son, when those who are caring for me have to make significant adjustments to their lives for the sake of my health.
This situation gets old but the illness never grows weary, it shows up right on time and loves to put in overtime hours. Nothing I am taking is alleviating the pain and pre-syncope symptoms. I've had my 3 intravenous infusions for the week and still my body is not able to moderate my blood pressure, it totally bottoms out when I go to stand, which means I am bedridden until it decides on what it wants to do next. Me? I wait. And wait some more. And it gets old. And I am getting older. And my son is getting older and responsible enough to do for himself when I cannot perform simple mom tasks. And it gets old. I wait. And wait some more.
