On the morning of Monday, August 3rd when I woke up to begin my work-from-bed job on my laptop, I discovered I was relapsing with my ME/CFS.
I couldn’t get to the kitchen or bathroom at all at first. My legs wouldn’t work. My body felt like I had been in a bad car wreck or fallen down a long flight of stairs, from head to toe. I could feel “injuries” on my neck, back, legs and feet. My legs were the worst (usually my arms and neck are the worst). My calves were totally locked up and my knees had huge swelling and red/purple bruises covering them. Perhaps Tonya Harding’s cronies had taken a club to me while I slept.
When I managed to walk that day I used my cane and hobbled slowly with weird backward reverb of my upper body each time I took a step. I don’t know how to describe it. Luckily, my step brother was there to help me with things I really needed. He brought me food several times and made things a little easier on me.
My mom’s side of the family were out of town (except step brother). My dad’s side of the family happened to come by at one point to drop something off and they asked me if I been in an accident and wondered how in the world this had happened. I explained this is what my disease does to me. My stepmom was kind enough to bring me food right away.
I managed to keep working my job that whole week. But that’s because the brain “fog” (horrible name for it – it’s far worse than “fog”) wasn’t what was bothering me that week. A couple weeks before this particular week, brain “fog” had been the problem and I had to tell my boss one day that I was only able to do 3 tasks per hour because of severe brain “fog!” (Glad I only had to say that one day. The other days I pushed so hard it was like running a marathon.)
Now, what caused this relapse? This is what I believe happened. On Thursday, July 31st, (the Thursday before the Monday I relapsed), I started back on 2.25mg of low-dose naltrexone (LDN) that night. Initially, it gave me a decrease in symptoms and I got so excited. I had been having a decline in health for all of July due to taking 1 month off LDN because LDN had stopped working for me in June. So when I felt an initial decrease in symptoms that Thursday on the LDN I decided I was going to make the most of that weekend and I did more than some one with moderate ME/CFS would, but it wasn’t that much – nothing a healthy person with a very lazy sedentary lifestyle wouldn’t have handled with no problems at all.
I knew I’d pay for it but I paid for it way more than I thought I would.
Today is Friday, August 14th and it’s been 11 days since my relapse now and I feel my body is almost healed back to the baseline sickness it was at the day I took the LDN (Thursday, July 31st), except residual weirdness on the left side of my body but that’s usual for me.
Next time I get back on LDN, I’ll start low at .5mg and be super careful with my activities. I can’t mistake the sudden decrease in symptoms for an opportunity to increase activities much.