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.
It’s been a couple of weeks since I set my feet on the floor and motioned forward. When I did, I knew there would be consequences, but I never expected that would be the last time I would be walking for a while. I don’t know how long that ‘while’ would be. Days have been past. Weeks? Months? Years (I certainly hope not)?
A day at the hospital is surprisingly long and busy. You get woken up early in the morning by a phlebotomist for blood work. You fall back asleep, and it is time to take your vitals. Early morning flies by with nurses coming in and out introducing themselves after morning shift change, brining your morning medications, and asking you questions about your latest bowel movement, pain level, etc.; ordering breakfast and eating; and talking to your primary team doctors. Doctors discuss with you plans they have for you, and often times, you find out you need to talk to multiple doctors for specialist consults, all sort of therapists, nutritionist, social worker, financial team, and the list goes on. And all these people involved in your care come in one after another, and before you know it, your resident doctor is checking on you in the late afternoon before s/he passes the baton to the night cover doctor.
M.E. (myalgic encephalomyelitis) does not care about what you need to do, even if those are to make your health improve and help with M.E. symptoms, or very important life events that you absolutely don’t want to miss. It decides how much your body and mind can take before you must rest without consulting you, and often doesn’t tell you where that limit is. If you try to exert your will power and show who’s the boss, you quickly learn repercussions are not worth it and must obey M.E.’s will. Otherwise, it can leave you with heavy damage, sometimes irreparable.
When I uploaded My M.E. Story 2, I didn’t think it’d get more than 100 views – my family and friends, and some from people following #chilliMEchallenge. I appreciate every word of support that I’ve received since. I’ve gone through such a drastic change in my life past three weeks, not in a good way as you know if you’ve watched my video from the hospital, and seeing my message getting passed around gave me the positive spark I needed to continue what I was planning on before I ended up at the hospital. I have to give the credit to Brenda and Nicole who kept me company during my hospital stay, heard my numerous rants about frustrations I was encountering, and encouraged me to share my story with more people.
I started feeling more sick than usual from 9th, but initially I just thought it was a bad case of PEM (post-exertional malaise). I went out for a couple of hours on 12th which involved short walking with a walker and mostly sitting. Next day, I was feeling so bad that I went to the emergency department (ED) to get IV fluids in the late afternoon. I was thinking “I had to have one of the worst days while I was tweeting for #ChronicLife Tweeter take over.” I was tweeting my day as a patient with chronic illness, and it was partially for May 12th, the international ME awareness day. It’s also when I decided to open this blog, and be a more active part of the ME patient community. I went on leave of absence from school in April, and ME patient advocacy was one of projects that I had in mind as something to do at home while trying to get better. What an interesting start, huh?