Whenever I experience a "crash" or "payback" due to ME/CFS my usual instinct is to go online to see where the research on a cure is up to and look for advice from other people with CFS on managing symptoms.
This is an activity which usually leaves me feeling very depressed on top of ill as it only serves to reaffirm that there is no cure, no one has enough money to conduct proper clinical trials, governments don't seem to care (despite the massive tax burden of millions of unemployed people), and people with ME/CFS continue to bash on about how sick they are in an effort to get somebody to do something about it.
In addition to this, despite the fact that a decent percentage of people with CFS do improve somewhat over time, there are not a lot of stories about it online. My guess is that most people who improve enough to be independent get away from the online depressionfest as fast as possible to protect their own mental health.
As I said, I go back to it when I crash, but I quite intentionally avoid it the rest of the time.
So why write a blog?
Three years ago I cracked some joke about CFS in the office where I worked. I can't remember what it was, but it got a laugh from the people around me.
It also got this response: "See! There's an upside to having Chronic Fatigue! You can make jokes about it!"
I gave Scott - the perpetrator of this remark - a death glare that made him shrink back against the pigeon holes and try to look small (quite a feat as he's a well built 6'3'' guy). At the time, I did not see that there could be anything positive about the illness that had basically destroyed all my life plans.
Not to be deterred though, Scott continued over the next three years, to identify all the positives he could about CFS. It became an ongoing joke between us and it actually served to make me feel a bit lighter about about the whole thing. He never trivialised it, he's actually one of the most supportive people I know when it comes to dealing with the downsides, but his attitude definitely helped me put it a little more in perspective.
And that's what I'd like to do with this blog. Find the humour. See the lighter side. Put it in perspective. There are enough blogs out there ranting on about how unfair life with CFS is. And fair enough. This one however will be about how life is not over with CFS, how there are people out there who are working hard to make a difference and how there is hope for things to improve.
I'd like to create a place for people with CFS to go when they crash and not be depressed off their nuts by what they find.
I'd also like to make CFS a bit more relatable for the general public (hopefully a few of them will find this entertaining enough to keep reading!) since general awareness will encourage funding for those in the medical community who actually care.