Friday night, I spent hours speaking to a dear friend about my fatigue, and about my future. She helped me realize I had stopped hoping for any kind of cure, or even to just get a little better. As we talked about the possibilities of me returning to work, feeling better, or starting a family, the landscape of my future seemed increasingly bleak and hopeless.
Then, Saturday morning, I woke up to a miracle; I felt better.
I woke up feeling like I was in complete remission. When I did a body scan, I realized that my pain, migraine, and issues with dexterity, strength, and concentration haven’t actually gotten any better. The only difference is that my fatigue level dropped, but that made such a big difference that I felt like my old self!
Since getting sick, I have had a smattering of days when I’ve woken up with a little bit of unexpected energy. I am accustomed to using that energy for about 5-15 minutes, getting things done I haven’t usually been able to do for myself while sick. Then, I am used to reaching a point where my energy levels plummet. It usually feels as if my body is punishing me for “overdoing it” for those short stretches. I often have to get back in bed or lie down on the couch, unable to have a conversation or think clearly for a long time before my energy returns to its normal sluggish level.
When I woke up with some energy on Saturday, I assumed that I had happened upon a day like the one I just described. A half an hour passed, though, and I was still active, with no signs of the deep, relentless fatigue that has plagued me for so long. I knew that I might be risking a longer, deeper crash, but I kept going.
At every moment, I expected the other shoe to drop. Instead, my energy carried me through 16 hours of sustained activity on Saturday. 16 HOURS. On my very best days in the past two years, I’ve had a total of four hours of productive energy in a day, scattered throughout the day in 30 second to 60 minute chunks. Yesterday, I had four times that. It was active work, too! I was up and down the stairs all day, doing many things I haven’t been able to do since I got sick, including laundry, cooking for my partner and our neighbors, walking my dogs for two whole blocks, and even bringing out the trash.
Never before has my heart soared over being able to take the trash out, but believe me, being able to take care of myself and my partner like that felt nothing short of miraculous. It made me sing, and skip, and bound, and jump around. And still my energy held strong.
Last night at bedtime, I started sobbing. I realized that I was terrified to go to sleep. I was terrified that I would never again wake up feeling like my old energetic self. I felt like my life had been on pause for the whole time since I got sick, and it had just been unpaused for that one perfect day. I wanted the day of energy to go on forever. Finally, though, I did sleep.
Today was yet another miracle day, full of sunshine and joy and sweet, sweet energy. Ten full hours of it.
I even got to talk to my Dad on the phone for 15 minutes for Father’s Day. I think that call is remarkable enough to write about for two reasons. First, because phone calls are often too exhausting for me, and it was amazing to be able to “be a good daughter” and reach out to him and show my love. The second reason I mention that call is that, when I told my father about my weekend through tears of joy, I could hear tears in his voice as he said, “Your news is the best gift a father could get on Father’s Day.” I’m crying just writing about it. I was touched beyond belief to hear just how much he understands about my fight with fatigue, and how much love he showed in meeting me in feeling deep relief and joy.
As I write, I have finally hit my energy wall. I feel achy and clammy and deeply bone-weary.
At this moment, I have absolutely no idea what tomorrow or any other part of my future will look like. I may never get more days of remission. I may have one or more good days scattered over time. I may have longer periods where I feel like I have my life back. Or, my days of fatigue might be mostly behind me. There is no way of knowing. I’m just so grateful to have had these precious days, and to have my hope for the future rekindled.
The Professional Patient 
That is great news! I hope it keeps up.
Fatigue is a killer, I can hit a wall several times a day and have to lie down, I can’t even sit at my computer. My body suddenly feels so heavy and achy it’s difficult not to feel down. I have two teenage boys, one with ASD whilst at the same time just going into menopause, so overall feel very shitty…… I have PBC an autoimmune liver disease and it sucks
Hoping for comfort and relief for you!