When I had my trip to DC, Dave and I started talking to a nice couple in the lobby at the clinic that had traveled from Maryland, and she had a PICC line in her arm. We shared stories about our experience with Lyme and she had a lot of questions about a Powerline versus a PICC as she was thinking of switching to the Powerline. I didn’t really have an answer for her since I had just got it done, but I told her about my experiences with the PICC. We discussed medications and she asked what I was going to use and I told her meropenum. She immediately said, “Oh, the sleepy drug.” Uh Ohhhhhh…
I have only done my new IV infusions a few times, but now I know it definitely was not the trip or surgery that gave me extreme exhaustion. I have to do my drips morning and night, and I feel like toast after I do my first one in the morning. When I had my “fibromyalgia” diagnosis, I was very tired, but was able to push through and still held 2 jobs. People reading this might not understand, and I have heard from a lot of people that they “get tired too” or “the weather can make you tired”. When I hear this I kind of want to punch whomever said this to me in the face. No. This is pure exhaustion. Just about can’t keep my eyes open. I want to just crawl into bed and sleep the day away. But, I have a job. I need to make money. Mind over matter. I just have to get off my ass and push through this. I have pushed through a ton so far, so I need to keep going. No matter what.
So on my sleepy exhausted way to the convenience store, I get a 20 ounce cup of coffee to start out my day. It tastes good, as I always get the pumpkin kind, but it doesn’t even change this feeling of exhaustion. I have been still stuttering like crazy and lose my train of thought constantly. I can’t even remember what bills I have paid and what I haven’t. Now that I write this, I just remembered I didn’t pay one of my Doctor copays. Mother trucker.
So what were we talking about now? Only kiddin…. maybe.
On my way home from work, I get an iced coffee. Not a whole lot of help but I at least briefly get a placebo effect that it is going to do something, even before I put a straw in it. After doing my few hours of work and get back home with coffee in hand, I spend the rest of the afternoon on the couch looking at my messy house and the balls of dog hair that have accumulated on the carpet and don’t feel like doing a damn thing about it.
I have noticed that my lymph nodes in my neck are a bit swollen, and my arms and legs are sore. The bottoms of my feet hurt, even though I never spend any time on them. I have been bumping into things left and right, stubbing my toes on everything, and I had a fall on my ass in the tub. I have started to have a lot of emotional type seizures lately, well I am assuming so. I’m not a doctor, just out of character for me. I was walking down my 3 steps in the front of my house, and missed one, didn’t even fall or hurt myself, and I literally started bawling my eyes out. What the fudge is wrong with me?
Once again, maybe coincidence, but my tics have calmed down again since I started the new antibiotic. I never like to fully get my hopes up, but maybe these new types of antibiotics will really help some of my neuro symptoms. It’s still really early to say, and there will be a bunch of things added to the mix, but I at least once again I feel like I have some sense of normalcy, at least in the public eye.