That quote is in my head this morning, as I check social media and see an outpouring of support from other patients that is incredibly heartwarming. I am starting week 5 of a severe crash and had an especially rough time this week, having to cancel a long-planned trip to my mom's and wracked with aches and exhaustion so bad that I couldn't even sit up most days. These kinds of severe weeks- or months-long crashes used to be common in the early days of my illness, especially at this time of year, but they have become extremely rare, thanks to a number of treatments that have helped me. In fact, I was only crashed for a total of 3% of the days (just 11 days) last year! That's made this crash even harder for me to deal with, since I am so out of practice.
I wasn't online much this week, unable to sit up and recognizing that even using my laptop while lying down wears me out and is not truly resting. But a few times each day, I would pull the laptop onto my lap, check my e-mails for anything urgent, and check Twitter, my blogs, and the Facebook page for this blog just for fun. And every single time, I was blown away and cheered up by the support from other patients during this ongoing crash. When you feel so isolated and - let's face it - sorry for yourself, knowing that there are other people out there who not only get it but are rooting for you makes all the difference in the world.
If you haven't yet connected to other patients in this way, I highly recommend it. You can join Twitter or Facebook with a pseudonym just to interact with patients, if you prefer. There are pages on Facebook, like mine, focused solely on living with chronic illness, and there are hundreds of groups where you can interact with others like yourself. I run one for Parents whose kids (including teens, young adults, etc) have ME/CFS and related illnesses. Myalgic Encephalomyelitis Global is a nice general patient group. And you can find over a hundred other groups specific to ME/CFS at #MEAction Network. If you have other conditions, look those up, too - there are groups for everything!
I did manage one quick post earlier this week by compiling together some older blog posts: Surviving a Crash - A Look Back in Time. These helped me and I hope they will help you, too!
That's enough blogging for me today. I just wanted to say THANK YOU to everyone who has reached out to me the past few weeks and let you know that you have made a real difference in my life.