The final portion of my day is usually the time of day I finally start to feel most like myself in many ways, but it’s also the time my body pays for the day I’ve put it through. I’m by nature a night person and I’m at my best creatively after most people have gone to bed. So in a way, when night time comes I begin to be torn in two directions. Again a struggle against my own body.
At 9:30 I take my nighttime anxiety supplements, bringing me to 46 pills so far today. After watching my shows from 9-10, I start to prepare for the night. By 10 the palpitations are back and much stronger. I have a full headache again, the whole head, not just in one area. The bottom of my feet are burning and hurt, the burning goes up into my ankles where arthritis has taken over. Even the tops of my feet hurt. Sitting up makes the palpitations worse and causes some dizziness.
I spent 20 minutes writing in my journal, until the pain and numbness in my hands was too much (I’m old school, and still have a hand written journal). Have to take a break from any writing or typing.
At 10:30 it’s time to take my night meds. I take 20 more pills, vitamins and supplement. 3 more drops from the dropper bottle, 2 different powdered mixed drinks, one of which has to be made with boiling water. In an hour I have to take a 3rd powdered drink mixed with juice. It’s rough on my bladder having so many beverages with medicine in them to drink before bed. After that I flush my PICC line again with saline and heparin.
By the time I finish all that, I’m back in bed and its 11 when my favorite show (Chelsea Lately) is on. This is what I wait for all day, the 30 minutes to watch this show. I’m physically exhausted, and sometimes have trouble paying attention to the show. As the night meds kick in I begin to get sleepy.
When the show is over I sit up for a while to spend time on Facebook, which is a mistake as sitting up starts palpitations again, and the pain gets worse from sitting up at the laptop. But I needed one more fix of the Facebook before sleep.
After that I climb into bed, and put on TV or put in a movie to watch. I take a final physical inventory of the day as I get in bed. What hurts now? What is my current pain level? By now everything hurts, pain levels are around a 5 thanks to pain relievers and medications. Overall I am exhausted (not to be confused with sleepy). I did a lot today, though it may not seem like it. (After all I left the house for a whole hour.) I’m anxious about my PICC line, knowing I have to get up early to call the Dr to see what he wants me to do. I think of all the things I need to get done tomorrow, and get more anxious about not being able to do them if I have to spend the day at Dr’s and hospitals. I have to focus on my breathing and make myself forget about all of that, and start to drift off mentally. I finally stop thinking and just watch whatever rerun or movie I’ve seen a hundred times that I’ve put in.
Some nights sleep comes easily. Some nights it doesn’t come at all. Tonight I fall asleep at 1am, which is pretty good for me.
That ends my day, or all of it that I’m awake. 66 pills, several other forms of medication and mixes, 2 PICC line flushes, a PICC line dressing change, maintaining my symptom journal, keeping track of all my meds and checking off what I take, in addition to whatever “normal” life things I need to get done, and you have a glimmer of what a day is like for me, or someone with Lyme. When one of my best friends read the draft for this she said it was an eye opener, that most people just assume it’s like being sick in bed with the flu. People don’t realize all the additional work that goes into being sick.
Hopefully this will help give you a glimpse of what your loved one with Lyme goes through. Help people to understand why we can be in bed all day and still not be able to make or keep plans. It takes a village to recover from Lyme disease, and it takes a village worth’s of work to get through one day with Lyme.
To be taken to all 5 segments of my “Day In Life Of Lyme” visit http://lymebites.com/blog/category/day-in-life-of-lyme/.