Not Safe For Work

I’m three weeks into a four-week treatment called Rituxan, which is designed to wipe out your B-Cells, hopefully letting them regenerate normally and allow your platelet counts to rise. With my IVIG infusions, I have a couple days of fatigue and headaches and then go back to normal. With the Rituxan, which I get every Friday, I have a couple days of intense fatigue, followed by ongoing fatigue. I’m told that the treatment could take up to eight weeks to fully take effect. I just hope I’m awake when it starts working, so I can celebrate.

Even before all this started, I had a lot of trouble waking up. I thought I wasn’t a “morning person.” Of course, I was still tired during most of the day, so I also thought I wasn’t an “afternoon person” or a “night person.”

Nothing showed up on the annual tests that my doctor ran, so for many years I assumed I was lazy or that I didn’t sleep well, and that I was somehow in control of how I felt. Isn’t that what we’re always told?

And then I found myself in the hospital being diagnosed with a platelet disorder. A few months later, my tests showed that I also had an immune system disorder. I didn’t want anything to be wrong, but finding out that this stuff wasn’t in my head was such a relief. In fact, many people who have immune system and platelet disorders deal with fatigue.

I found a message board online where people discuss their fatigue. The funny thing is that my doctors say that they don’t have scientific data that these conditions cause fatigue – but that a large percentage of their patients make similar complaints. I believe that someday they will have studies and evidence that back this up, but that in the meantime, the very smart people who live with these symptoms every day are all the proof I need.

With so much going on, I’m consciously scheduling fun activities with friends to keep my mind occupied and happy. But there are some nights I think, “I know this is going to be fun, but I think I need to take a nap first.” So I take a deep breath, meet my friends, have some fun, and then go home and collapse into bed.

Last Friday I got home from work and decided to take a “short” nap (which in my book means two hours or less). I asked my mom to call around 9 p.m. to make sure I got up and had dinner. I finally opened my eyes and saw that it was 11:45 p.m., and I was annoyed that I never got that wake-up call, and surprised, since my mom is usually very dependable. The next morning, I called to ask what happened, and she said, “We did talk last night!” I told her I didn’t think so. She explained that we spoke, but I was slurring my words, and then I fell asleep in the middle of a sentence. I still don’t remember it. At all.

I recently received an e-mail with a link that said the video was NSFW – Not Safe For Work. I stopped for a moment and thought, “Ha! Every morning I’m so tired that I’m NSFW!”