Tuesday, February 17, 2015


Finally getting back on here. I meant to update repeatedly over the last months, but there was kind of a lot going on, and most of all, I've been really tired. My tablet & phone have also taken over most of my Internet usage, making my laptop feel like a huge, heavy relic that takes sooooo much effort to whip out...

But here I am. Still tired. (And yes, I get the irony of just having finished a post about my dissatisfiction with the new name, SEID, and now complaining I'm tired...but I know you know that's not the point...Yes, I'm tired, but there are so many other reasons I've been miserable.)

Not sure what happened. I was feeling really good when I was doing the juicing and raw foods, but then I started getting tired. And never really stopped. It probably didn't help that I stopped my SSRI, and slowly spiralled into the grasp of depression and anxiety. After getting back on, that's mostly all better, but I'm still tired. For once, I'd be completely happy to stay home and lie around napping all day. Which is strange considering that even when I'm virtually glued to the couch during a POTS flare, I'm not sleepy, and my mind is always running.

Despite my disappointment at the new name for CFS, I was excited to read about the Rituximab trials in Norway. Unfortunately, I've already given most of my 30s up waiting for my Disability insurance, or a successsful treatment, so 2-5 more years, taking me into my 40s, is a bit much. Not to mention, I'm going to have to figure out how to survive on monthly Disability benefits that won't even pay for a 1 bedroom apartment soon...And living with strangers while sick has already gotten old.

I contemplated trying to get Rituximab in another country, but it still seems like it would be pretty expensive, and it is, after all, chemotherapy, so not something to mess with lightly. (It's usually used to treat Cancer and Autoimmune diseases like Rheumatoid Arthritis and Lupus. If I understand correctly, it wipes out these things called b-cells that are what's malfunctioning in a dysfunctional immune system such as with CFS, then your body can make new ones that work as they're supposed to.)

Thankfully, my Doc had a new treatment for me to try. Another anti-viral. It's supposed to help pretty quickly,if it's going to, but I just started it Saturday.  So we shall see how that goes. Trying not to get my hopes up too high, but still hoping. So far, I'm just feeling a bit fragile, not quite weak, not quite devoid of energy, but a bit different. Was a bit nauseous today, but that could just be acid reflux. So we shall see...

A New Name that Sounds the Same

As most of us with CFS/ME already know, the powers that be have chosen a new name for our illness. I was so excited to hear this, myself, assuming, that, naturally, the new name would be Myalgic Encephalomyelitis. So imagine my dismay upon hearing the new name: Systemic Exertion Intolerance Disease. I almost couldn't believe my eyes. The main problem with the name Chronic Fatigue Syndrome was that it implied that all that was wrong with  the patient was that they were just really tired. So why in the world would they choose a name that pretty much implies the same thing?!?! Actually, it may be worse. Because not only does the name imply that we are simply always tired, now we're tired and we can't handle it. So, for example, the misguided psychologist who told me, when I first got sick, that she hated getting up in the morning and was tired a lot too, implying that I was just needed to quit being a wimp and suck it up, no longer need waste her breath, because the name of the disease says it all. I'm tired and I can't tolerate it. I can't cope. Thanks a lot CFS renaming panel. Thanks a lot.

On the bright side, they are set to review the name and diagnostic criteria again in five years...

Seriously though...what progress have we made, when of all the things wrong with us, the medical establishment is still focusing on fatigue? Okay, so maybe technically "exertion intolerance" isn't exactly the same as fatigue, but it might as well be. They could have made the name reflect the immune system problems. Autoimmunity. Inflammation. Autonomic Dysfunction. But nope. We get to be intolerant to exertion. (Ahem. --Tired.)