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.
Energy budgeting as an ME patient is like having to make sure every penny counts when you are making less than the minimum wage. You don’t know when your paycheck would come in, and how much the check would be written for, so budgeting is even more difficult. You would deplete whatever savings you had. If your wallet has only $20, you are left with no choice but to use the credit card, which you would have to pay back with high interest (PEM). Or your credit card is already maxed out with nothing left in your wallet, and because you don’t have bus fare to get to work, you can’t work anymore, so no more paycheck – this is how I imagine very severe ME. Not even an option of energy budgeting because mere existence is piling up the interest. So energy is even more precious to ME patients, and “Four Chillies in a Pod” chose to spend their precious resources to help everyone with ME. I think it’s very noble and selfless for them. I am trying to pitch in whatever I can, but it’s nothing compared to what these ladies did. I also want to acknowledge everyone who are very actively helping out the campaign (I want to be one of them but need to get over the series of recent PEMs!) and everyone who has participated in the challenge.
I don’t know other diseases that just speaking for ourselves comes with the risk of that disease taking more and more away from us even if we approach it cautiously, with a good plan. As someone who was only recently diagnosed and just dipping the tip of the toes in the water, I admire and look up to all the patient advocates, some of whom have been active for many years. Honestly I am not sure I would feel this passionate about spreading the awareness if my ME didn’t get worse quickly. I was very frustrated by some of my experiences as I dealt with rapidly worsening symptoms, and I cope by talking, so my initiative to start a blog was, in a way, for my personal benefit. My priority is still my personal well-being, so my husband and I still have not worked on his #chilliMEchallenge, and I’m just occasionally showing up on my blog so that I can talk. But I am here now, and I hope one day I join the amazing people who have been working hard for someone like me.