Holy crap you guys, month four has been amaaaaaaaaazing. Something is working. And it’s working well. It started in early October with some momentary glimpses of feeling more like myself, and I’m happy to report those glimpses are now stretching into entire days.
I mean, I’m not symptom free at all. Not by a long shot. I had one week where I was just sort of inexplicably floored with fatigue. And even on the good weeks, I have reminders that I’m sick every single day. But they feel so manageable right now. For 4 of the last 5 weeks, the tasks of daily life, they didn’t feel hard. During those weeks, I was able to work a full day (even 10, 11 hour days) and come home with enough energy leftover to prepare dinner from scratch, make some vegetable juice, walk my dogs and clean up a little around my apartment.
Just the other weekend, I cleaned out my giant under-the-stairs closet that I’d haphazardly moved the entire contents of my former 2 car garage into last June (you can imagine what a disaster THAT space was). I was crawling around small spaces, lifting boxes, moving bookshelves, and sorting through things like it was no big deal. ME! A girl who just weeks ago was having trouble bending over and picking up a heavy bowl from a bottom drawer of my kitchen.
I sort of expected to pay for it the next day, but I was still doing well. I walked down to South Lake Union for breakfast and walked all the way back up the oh-so-steep Denny Avenue without stopping AND had enough energy left over to play with my ab wheel for about 10 minutes afterwards. It was the first day that the thought of lifting weights occurred to me as a very real possibility. But I needed a nap instead. In fact, that whole next week I fell into a fatigue so intense that it felt tiring to breathe at some points. I had to stay home sick 3 days that week. That really threw me, and I’m still sort of struggling to recover my previous levels of energy. Still, I’m getting there!!
Things I struggle with lately include:
- Poor vision – but most days I’m about 70% with my glasses on, which is an improvement
- A stiff neck – but for the first time, I’ve had whole days without it!
- Ringing ears – nothing has dented this yet
- Numbness in my hands, particularly my left hand at night
- Still have nightmares almost every night, but they are less vivid (and I had ONE good dream, my first in a year; I had 3 guinea pig pets and was learning to sew them hoodies. Ha!)
- I still feel a little too hyper mentally most the time; I wake up with a racing mind earlier than I want to and can’t get back to sleep
- Some transient foot pain, especially right when I stopped rifampin
- Some transient joint pain, especially in wrists and elbows
- A few little moments of feeling off balance and dizzy, particularly when out
Things I’ve noticed less of this month:
- Headaches! That’s a first.
- Plugged ears – I had this maybe one or two days, amazing!
- Muscle pain
- Low back pain
- Generalized weakness, sweatiness and heart palpitations
- Strange vision problems like light sensitivity, zig zags or holes in vision
- My appetite has improved, eating actually occurs to me
- Nausea, heartburn and bloating are entirely resolved
- No muscle jerks / myoclonic seizures
- Very very little jaw pain, even after dental work
- No brain fog, fight/flight or exaggerated emotions this month
- My visit to LymeStop 6 weeks ago
- This month I quit Rifampin and plaquenil
- I started Bactrim and Omnicef and Grapeseed Extract
- I increased my doxycycline dose from 300mg to 400mg a day
- At the very end of the month I also changed my Thyroid meds to favor T3 instead of T4
It could even just be the passing of time. The truth is, I’ll never know what’s working or how long it will last. So I’m focusing on enjoying the progress and trying not to overdo it.
One of my favorite memories of the month is visiting the pumpkin patch with my fella and some of my dearest friends. While we were there, standing around waiting, I started doing this goofy mating dance that I’d seen this bird do on a documentary recently. My friends laughed and I giggled, and for a moment everything was just so normal. These are exactly the kinds of things my brain hasn’t had space or energy to even conceive of since I got sick a year ago. And even though a silly dance move has zero impact on my practical life at all, it means a lot to get those lighthearted moments back. Even if it’s just for now.
But I mean really…
I’ll also share this video of my progress on bending / back pain. Remember these two videos from week 5?! I took this on October 2nd, which would be week 14. Quite a change!
Here are a few photos from my super fun month. Wishing everyone out there many many moments like these.
During the week of fatigue (and still sort of now) things are back to looking a lot like this… and really, that’s ok too. It’s all part of the process.