Declining on a roller coaster

Hard to believe my last entry was only written 18 days ago. But M.E./CFS can rapidly decline in a few hours so it’s no surprise. I feel like I’m losing control of my body and life. I am. When I saw my mom Thursday she said I seemed drunk (she knows I’m not – she’s just saying it seemed like it). I couldn’t hear what she was saying, I couldn’t reply to her, I was dropping things, I was a zombie, etc. I had been feeling improved on LDN (low-dose naltrexone, a neuroimmune disease medicine) and now I am slipping into a sort of relapse. Just now I wondered if maybe I made myself sick by trying to ice skate again (skating was my childhood hobby). I was trying to enjoy as much of life as I could and maybe I should have just rested and enjoyed being able to function a little more around the house. Of course I was still ill and limited – I hardly count ice skating once a week and sleeping the whole rest of the week as a “normal” health status, obviously. But I won’t think twice about it, because I got to actually taste an increase in function for once in 8 years and what is most likely happening is that my body is simply getting resistant to the medicine after 8 months on it. Grateful that it lasted that long. So I’m going off it for a month to see if it’ll work as good again when I go back on it. I can’t think anymore so I’m ending this here.


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