by Tamara Flaherty
Today is one of those days.
I know that already, because I woke up exhausted and in pain.
These days just suck because I know ahead of time what I’m facing.
I don’t get to give the day the benefit of the doubt.
Before I get my coffee , before I kiss my husband, I reach for my prescription bottles.
I could probably muster up enough energy once my pills kick in, to get up, shower, and get dressed, but I know that once I accomplish that, I will be so exhausted that I will have to go back and lie down for the rest of the afternoon.
I’ve made the decision today to just stay in bed and preserve the energy that I have.
I don’t know what I’m preserving it for but you just never know.
Maybe something will come up later this afternoon and I will have to get up and do something.
Five years ago I couldn’t have even imagined my life being the way it is right now!!
I have always been full of energy, life , ideas, plans, and dreams. Usually really big dreams.
It seems crazy even to me that I’m spending today worrying about whether I will have the energy to attend my daughters social security meeting tomorrow and whether Aubrey will be upset at me if I have to reschedule my haircut.
I used to successfully manage a 3500+ sq. ft. home with seven children, a satisfying career working 12-hour shifts, a fairly active social life, and still had energy left to dance with my husband at night.
I’ve moved past the grief stage for the most part, and have now reached a tentative acceptance, however it still has the power to surprise me at times. The vast difference between what I had then and what I have now can still bring me to my knees at times.
I’ve tried everything to get my life back, to no avail. I’ve jumped through all the hoops. I’ve taken all the medications the doctors have pushed on me until recently. I’m done popping pills that ADD to my symptoms instead of relieve them.
You should have heard the argument at my last doctors appointment when I finally said “nope, not taking that.” I won the argument btw.
They even had me on prescription amphetamines for energy!!
You know, the drug that college kids take to keep them awake and alert for days! They sell it on the street because it’s such a powerful “upper.”
It doesn’t work for me, at ALL!
I’m honestly not convinced that they even have all of my diagnosis correct. I feel like a big piece of the puzzle is still missing.
In any case, this is where I am in my life until/unless I can figure a way out or around it. I still haven’t given up completely on getting my life back, although on days like today, the hope is hard to find.
I do take comfort and enjoyment in writing, and so have something now each day to look forward to.
I spend a lot of time researching, trying to make my symptoms match a disease that has a cure!
No luck so far but I’m still searching!
I still have good days and even good weeks sometimes. Not good like before when I just did whatever I wanted to without worrying about energy, weakness, or pain, but good in the sense that I can go most of the day doing pretty much what I want to do. I wish I knew how to make that happen at will.
I just started keeping a symptom journal to try to see if there is some pattern to how I feel and if there is some key to unlocking the good days more often.
So far nothing! No breakthrough pattern that will change my life.
I guess the lesson in this is to appreciate what you have.
I really never even thought about the blessings of good health, energy, and living without pain until I lost them. I wish that I had used those blessings to accomplish more than I did.
I wish that every day that I just bounced out of bed without a care in the world would have been celebrated.
I am learning to value and celebrate my life, even with its current challenges and limitations because I recognize that there are those who would welcome the blessings that I have as a beautiful gift.
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