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.
It’s been a month since we moved to a new apartment. With dramatic change in my functionality and becoming bed-bound, we had to find and move to a new place ASAP to accommodate the hospital bed and mobility devices. We had to move later in the summer anyway, but with my sudden worsening of ME, any kind of “plans” we had meant nothing.
Within a week after my discharge, my husband managed to find us a new place, and we moved the week after. I was (am) still bed-bound, so you might wonder how I got around, getting to doctors and moving to a new place. The magic device is my reclining wheelchair.
I was discharged with the order for one (how I got it ordered is a part of a long story that I will write sometime), but the DME vendor that the hospital used didn’t have one in stock, and they didn’t know when their order would come in. Medical transport service that the hospital case manager referred us to quoted us $600 for a round trip to my doctor’s office. We (my husband) called around but the best we could get was $450. Yeah, no. So my awesome husband called around other DME vendors to locate a reclining wheelchair rental, and he found one!