I am tired. I had Remicade and my steroids last week; usually steroid withdrawal is over by now. But yesterday I was completely in withdrawal mode: unable to concentrate, light-headed, physically tired, clumsy. Today I just want to crawl back into bed. I’m not sure how much of this is withdrawal and how much is depression related to being pulled out of a “normal” life all the time and being unable to concentrate.
My medical team has suggested two things to try to improve the situation. The first suggestion was for me to try to keep a regular schedule. I almost laughed at this one — it is nearly impossible. I’ve been trying to do this for years, but I found that resting when I feel I need to lie down is the best way to salvage a certain level of alertness the rest of the time, even if I don’t have the focus energy to be able to work. Afterwards, when I thought about this suggestion, I felt somewhat angry because it has a bit of the implication that I haven’t been trying hard enough, even though I know that’s not what the medical team meant.
The second suggestion was to try modafinil to help with the tiredness, and methylphenidate (Ritalin) to help with the lack of concentration. (I’ve tried Ritalin a few times but, on its own, it doesn’t keep me awake). There’s hardly any research on modafinil and Crohn’s. I’m afraid that these medications may mess me up even more. It’s extremely frustrating to not be able to use my mind the way I used to, or to be able to work without getting exhausted, though, so I may try it.
In the meantime, I just want to crawl under a rock.