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I wanted to post something in-depth about ME/CFS Awareness Day. Something with informative links to CFS research, resources, and charities. Then I thought maybe I could do a video about CFS. But the truth of the matter is, I just don’t have the energy. (I suppose you could check out what I wrote last year for CFS Awareness Day.
Welcome to Chronic Fatigue Syndrome. It sucks.
If you know me in real life or on Twitter, you know that I say I’m tired a lot. A LOT. Exhausted. But the truth is, I was doing fairly well for almost a year without a serious relapse. Yes, I was tired, but it wasn’t this bone-deep exhaustion. I’ve been tripping down the relapse trail for the past few months. There are a lot of Chronic Fatigue Syndrome symptoms that accompany the exhaustion. Lately, it’s been the brain fog, poor memory and concentration, joint and muscle pain, and – of course – depression.
The problem is that I have underlying anxiety and depression issues anyways. The mood disorders fuel the CFS, which in turn makes the depression worse… and so on. My grandma, who lives in Florida, has been in the process of dying since February. She’s been unresponsive for nearly a week now, with nothing to eat or drink. It’s just a matter of time now. Grief is a good reason to be depressed. But those strong emotions trigger everything that CFS decides to bring to the party, and I find it nearly impossible to do the things that I need to do.
When you see pictures of me online, or video clips, or even meet me at a conference…I’m having a good day. You see me with my makeup on, able to stand and talk to people as needed, smiling all the while. You don’t see me crashing for the next week after a wedding or a conference or whatever, when I have to crawl up the stairs and have trouble stringing words together. Oh sure, I can fake it sometimes, especially online – but I always pay harder when I’m able to “turn it off” and give in to my symptoms again.
I’m open about my illness because I want to spread awareness and show people that real people do have Chronic Fatigue Syndrome. There’s a terrible stigma attached to CFS, and I want to fight it. When I’m having a good day, I can do amazing things. When I’m having a bad day, I need a lot of help and support to make it through.
The part I hate the most is the brain fog, which goes beyond “memory and concentration” to affect pretty much the entire thought process. I write for a living, and it’s been very difficult for me to write anything lately. I’m very grateful that I have a team of writers to help me with my business. Editing still isn’t easy with the brain fog, but it’s a lot more doable than writing.
I’d like to have a powerful conclusion here. But I can’t think of anything strong enough to tie it all together. I’m frustrated with my own abilities. I guess you can check out the piece I wrote about Moms with Chronic Fatigue Syndrome. (Link is no longer valid, as the website no longer exists.) Extend a real of virtual hug to someone you know with CFS. We’ll appreciate it, even if we may take a little nap on your shoulder.
Read my Big Fat Medical Update for more details.
That’s me: Christina Gleason. I’m a writer, editor, and disability advocate. I'm a multiply disabled autistic lady doing my best in this world built for abled people. I’m a geek for grammar, fantasy, and casual gaming. I hate vegetables. I cannot reliably speak, so I’ll happily conduct business over email or messaging instead.
