I wrote this journal entry quite a while ago, but it’s taken me several weeks to decide to share it. Here goes…
Decadron, 1mg. Adderall XR, 30mg. Caffeine, 1-2 cups of coffee or bottles of Yerba Mate a day.
Go to bed tired.
Wake up in the middle of the night, tired.
Wake up in the morning, tired.
I’ve had the misfortune* of experiencing a number of mysterious ailments in the year and a half since my bone marrow transplant. Blood clots, nausea, crazy teeth sensitivity, incessant itching all over my body, muscle atrophy, easy bruising, arthritis, inability to eat or drink certain foods, more nausea, anemia. Broadly, many of these are due to a not-uncommon condition known as GvHD (Graft vs Host Disease) where my donor’s T-cells orchestrate an immune system attack on my body’s organs. Others are likely due to the battery of medications I’m on.
But the hardest thing to deal with? Fatigue.
And I feel wussy talking about it, because what’s the big deal about being tired?
Except when it lasts days, weeks, MONTHS.
When it makes it hard to motivate myself to do anything, when I can’t sleep, can’t function, and can’t ever not feel tired.
When some days I go into work in the morning and have to leave an hour later without a single thing done because I walked too much the day before.
When I spend every weekday morning at the gym to help regain muscle mass and regain stamina… And only barely notice a change.
When it’s Sunday night at 8, I’m already nodding off, and I doubt I’ll have the energy to be my best tomorrow.
When I feel like I’m letting down my friends because I’m too tired to hang out in the evenings. And letting down my coworkers because I can’t muster the energy and enthusiasm I owe them and owe my work. When I feel like a paler, weaker, imitation of my former self.
That’s when the fatigue feels like just about the worst part of all this.
I went to a Bone Marrow Transplant symposium a couple months back and learned that post-BMT fatigue can last 2-3 years, or forever. That the ‘new normal’ never really is. That people go back to work part-time in 12-18 months. Some never go back full-time.
I went back in 9 months. Full-time, and incredibly eager to go back to living a normal life. But my normal life is running me into the ground.
I feel like I shouldn’t be complaining… because I’m still alive, right? I’m still breathing. When they found this thing in me, I had a death sentence. A year later, I was filled with hope. Now?
But writing this feels therapeutic. And reminds me that it’s a long road.
I need to give myself time.
* It’s not all misfortune, mind you. The silver lining on GvHD is that some amount of it is correlated with a lower rate of Leukemia recurrence. That’s a good thing.