When I posted my first M.E. story video recently, I didn’t realize I was was going through another viral reactivation. I initially thought I was just dealing with a prolonged, severe crash. It turned out to be another viral reactivation episode for me, which meant substantial exacerbation of all M.E. symptoms. I didn’t realize this until I started getting new pain from shingles. In retrospect, I should not have done any kind of “strenuous activities” such as making videos and rest in bed as much as I could. I should have known better to do nothing while feeling so sick to need IV fluids. Oh, well, hind sight is 20/20. I was just enthusiastic about participating in M.E. awareness movement (especially Chilli M.E. Challenge), and wanted to act on it, especially because I was feeling lousy that week.
After noticing the nerve pain that I associate with shingles (I can distinguish it from postherpetic neuralgia), I panicked. It was my 5th time since last October, and with each viral reactivation (shingles is caused by the reactivation of chickenpox virus, or varicella zoster virus), my M.E. has been worsening dramatically. At that point, I was already mostly bed-bound and experiencing shortness of breath just from sitting against pillows. I knew I still had not hit the bottom yet based on past experience, so I went to the hospital, hoping they might be willing to do some aggressive therapies to minimize the damage to my body.
Now I am back home, still bed-bound, after spending 8 days at the hospital. I wonder if I never went to the hospital and tried to just rest at home, I’d at least be able to stand up for 30 seconds to get to the restroom. But I can’t play what ifs and the reality now is, I am a severe M.E. patient. While at the hospital, I also tasted what it would be like to have very severe M.E. During those moments, I was practically paralyzed and could not eat, drink, or speak. I think it really solidified my resolve to be an active part of M.E. community. I am not going to wait passively hoping for a cure, knowing in the future, my mind could be trapped in the shall of my body.
I recorded this video on my last day at the hospital. It’s been a few days, and I’m just getting around posting it. I am so thankful about tech gadgets that let me still be a part of the world even if my body is confined on my bed. Please watch my video posted below, and make a donation for M.E. research.
GoFundMe for Chilli M.E. Challenge
End ME/CFS Project @ Open Medicine Foundation
CFS Research Center @ Stanford
For UK: Invest in ME
You will see me pause frequently while talking and it is due to cognitive impairment caused by M.E. My language errors (that cannot be blamed on English being my second language!) have become more and more noticeable past couple of weeks as my M.E. worsened. If you see glaring errors from anything I write, you know why, so please don’t judge me! It is difficult enough to write while stuck in bed and getting drained just for being awake, so I apologize for being unable to proof read my writings.
Please check out #chilliMEchallenge for other stories and funny videos!