I’ve had the same hair style for a while – long hair dyed Burgundy, which would fade to brown, and curly permed, so that I wouldn’t have to do anything to my hair everyday. I’ve always been an I-would-rather-sleep-five-more-minutes-than-do-my-hair-or-makeup person, so I do not even own a brush for my hair. All I needed to do was to run through my hair with my fingers while shampooing.
As my M.E. picked up its pace quickly since last year, my hair washing became less and less frequent. By early spring this year, it was down to once a week, and by May, even that was becoming increasingly difficult. I hadn’t washed my hair for two weeks when I was admitted at the hospital.
At the hospital, when I asked for dry shampoo, they gave me a shampoo cap that I did not know existed. I just had to wear it like a shower cap, and someone would “massage” my hair to wash it with soap and water that were inside the cap. I brought a few of them home with me when I was discharged and used it occassionally. But shampooing this way while lying in bed meant no detangling hair during the wash – in fact I think it made it worse. Also the oil and dirt that were building up on my scalp could not be rinsed away.
On one of my better days several weeks ago, I noticed a giant knot on my hair. My ponytail was undone from rubbing my head against the pillow, and I couldn’t tie up my hair again because of the tangles. Without thinking much, I started running my hands through the mess.
I just saw an article from the Huffington Post about the Chilli M.E. Challenge, covering the challenge taken by Drs. Lipkin and Hornig at Columbia University (video) Center for Infection & Immunity (CII). It’s exciting to see this challenge pick up momentum, and ME receive positive media coverage.
ME patients have to pay for every little thing that involves any kind of effort, whether we are conscious about the expenditure or not. Just simply being awake has a toll, which I didn’t realize until recently because before my ME got more severe, my daily budget was sufficient enough for minimal functioning. The price each patient has to pay for any activity (or non-activity) is different depending on the disease severity and presentation, but one thing is universal: if we spend more than we have, we have to face PEM (post-exertional malaise) and potentially risk our long term health.
I want to share quickly what PEM looks like with an objective measurement. A good indicator of my condition is my heart rate. Here’s a poster I put together (using a free phone app and as quick as possible because I’m still not recovered as you can see, so please excuse the poor quality of graphical aesthetics!) showing my resting heart rate since last month measured by Fitbit. It tracks my baseline condition pretty well, with higher heart rate indicating my body feeling overworked, making me more susceptible to crashing.
PEM (Post-Exertional Malaise), also referred to as PENE (Post-Exertional Neuroimmune Exhaustion), is a hallmark symptom of ME. Patients with ME (PwME) experience severe exacerbation of symptoms following exertions. Threshold for mental and physical activities that would be too “exerting” is much lower for ME patients. Recovery time is prolonged, often lasting days or even weeks.
The top graph was snapped a while ago when I started thinking about this blog entry. The bottom graph was snapped today. Yes, I’ve been tachycardiac all day and writing a blog right now is not the best thing for my health, but f* ME! (And for that matter, publishing a post yesterday did not help but I have too many things that I have been working on and wanted to get something out). This poster would be better if I make it now instead of a week later, and I need to have a blog post to go with it! It is partially to show why I haven’t been as active as I would like recently.