Today was the most productive day I’ve had in a while. I woke up around 7, made myself breakfast and sat down to watch Netflix. After I ate I took my pills, ordered my husband a present off Amazon, added to yesterday’s blog post, and emptied the dishwasher. I laid down for a couple hours and then around 11 folded all of the clean laundry in our apartment – about four baskets full – before making lunch for my husband. We caught up on a few of our shows that we had fallen behind on and then he fell back asleep. I took this opportunity to do some work I hadn’t been able to get to during the week. I don’t like being behind and I finally had a three hour block where my headache was under control and I felt focused. That has been one of my major problems this last month that I didn’t even realize was happening until today – I have been completely unable to focus or concentrate on something for very long and I have been confused a lot more easily than usual.
Anyways, my day was productive and I felt accomplished. The only downfall, besides the massive headaches, is that I couldn’t manage to make it through my shower tonight. It felt like someone was sitting on my lungs. I tried pointing the water off to the side so it hit the wall instead of pummeling me in the chest, I tried making the water colder, and I tried just standing for a minute with my arms at my side, but no matter what I did, I couldn’t get my heart to stop fluttering and I couldn’t catch my breath. I would normally be afraid I was relapsing already, but the doctor said the Prednisone can cause the jittery/fluttery feeling.
I had to get out of the shower and sit on the bathroom floor until my heart rate returned to normal. I then proceeded to cry for a solid ten minutes. Why are even the simplest of things so much harder lately? I don’t want a pity party and I don’t want to whine about how life isn’t fair, because it could always be worse and I’ve been blessed with so much in life, but I just wish I could know what’s normal. I wish I could know how much longer things are going to feel this way. I just want answers to questions that have none. For instance, how does one’s immune system just all of a sudden stop recognizing its own RBCs and platelets? Is there a cause? Is there something I could have done to prevent this? Is there a chance my immune system will ever reverse its decision to hate itself? I want to know more but ES is so rare that there is little to no research on cause, prognosis, or effective treatments. Every patient responds differently to the medications and it is essentially a guessing game – trial and error.
At this point, all I care is that I can get something for this headache because the Tylenol isn’t cutting it.