A Snails Pace

I’ve been as productive as a sloth the last few days. Not sure why, but my pain has been worse than normal and energy has been low. Way low. Like non-existent low. Thus I’ve turned into a slow-moving snail, crawling from room to room wrapped in a blanket and moaning a lot. I’m sure I’m a real treat to be around. It may be recovery from the Holidays or the weather or the moon or it may just be that, hey, this illness doesn’t need a reason for you to feel bad. Even when you’re doing everything right, you’ll have poopy fart days. Luckily, I am jobless, so I let those days come and pass and rest until recovered. I still wonder what it would be like if I had my old job, and had to work an 8 hour day through feeling this way. I remember those days all too well. Then I get really nauseous at the thought and watch another episode of Frasier.

(For those of you out there still working with this illness, hang tough. I know what those days feel like. We’ll get there)

On days like yesterday, I have no desire to see or talk to anyone. My phone rings and I just can’t bring myself to answer. The feeling is rough because I am a social animal after all and love my friends and family a lot. But there are some things you just can’t fake. And when I’m feeling that way, there’s no faking enthusiasm. I’ve tried it and failed enough times that now I just don’t answer. The person on the other end would have a better conversation with Monty than me. Maybe I’ll pass the phone to him next time. I realize that this makes me, at times, a shitty friend, sister, grand-daughter, aunt. But I know how the conversation would go.

Hello? Hey Mary!! Hey. How are you!? Awesome. You don’t sound awesome. You got me. What’s wrong? Feel like death.What’s bothering you? Just really tired? Yeah, just really tired. Did you try those South African JuJu Beans I sent you? They’re supposed to be good for energy! No, too tired to stir the mixture. Bye.

South African JuJu Beans. P.S. I made this up.

See? Worthless conversation. And explaining my symptoms to people over the phone doesn’t help either, not to mention it makes me the Debbie Downer of the Century. I’d rather just hibernate until I don’t feel so lifeless. Whoever’s still around when I emerge from the cave are the people I call friends. Anyway yesterday was the National Championship and I was supposed to go to a party to watch it but since I was half dead I didn’t show up. Coincidentally the Tigers didn’t show up either. (BURN!) I watched it in PJ’s on the couch with Monty while icing my legs because they’ve been cramped for days. Then I scoured Facebook and laughed at the angriest statuses I’ve ever seen. “Completely Embarrassed.” “Time to FIRE LES MILES!” “Worst LSU game EVER!!!” “If we run the option again I’m going to MURDER MYSELF!!!” I don’t know why angry statuses humor me. They just do. Don’t hurt me.

Anyway, I’ve been receiving a lot of emails lately from people who are seeking help in getting diagnosed or who think they may be mis-diagnosed. I wish I were more an expert on CFIDS so I could offer real help but in the end I’m just a sick kid with two anatomy classes under my belt. (My mom on the other hand has a medical background and has suffered with the illness for over 20 years. I’ll get to that later) The most important thing I can tell you is there seems to be a key difference between Chronic Fatigue Syndrome and Fibromyalgia regarding exercise. It’s complicated since there is not one diagnostic test for either, but a main difference is that exercise seems to be helpful/relieve pain for many people with fibromyalgia. On the other hand, exercise can be extremely detrimental to those with CFS. An easy way to tell is just to pay attention to how you feel the day after you exercise. Having sore muscles is a normal reaction. If you are completely crashed, as in, feel like you’ve been hit by a truck and have trouble getting out of bed, you most likely have CFS, or the component which causes “Post-Exertional Malaise.” Trying to push through this ‘crash’ will only set you back and make you worse. It basically comes down to this. Do you feel like this the day after exercise?

Then Stop.

Or do you feel like this after you exercise?

Then continue!

There is so much misinformation out there that I truly am surprised I was effectively diagnosed and treated. But this took years and didn’t happen until my mom found a specialist: Dr. Nancy Klimas. There’s also a lot of people trying to sell things that won’t help you. So be wise. Currently, there is no cure for CFIDS/Fibro. So be wary if someone offers you the cure-all. I’m going to attach some helpful links for those interested in reading further on the illnesses for now. BUT, I am ALSO going to collaborate with my mom on one of my next posts and try to clear the air about some things regarding ME/CFIDS/ and Fibro. I am also going to try to get my doctor in on the conversation because I know she holds a lot of vital information that is scarce and hard to find but would help a lot of people out. So stay tuned.

I’ve also received some emails that read “Hey, I’m tired all the time. Do you think I have CFS? How do I get diagnosed?” This question is kind of like the equivalent of asking “Hey, I gained some weight in my midsection. Do you think I’m pregnant?” For one thing, calling it ‘tired’ is like calling the atomic bomb a fire cracker. It’s hard to give it a word or name people can understand, but tired definitely falls short. Think more along the lines of bones-crushing fatigue. Anyway, while feeling like you could sleep for days and being extremely exhausted are key symptoms, they are far from the only symptoms. CFIDS is an autoimmune disorder, meaning every autonomic process in your body is basically haywire. Thus, you feel like death. And chances are you look like it too! Anyway, the links are below. But I promise to devote space in the future dedicated to debunking some myths and trying to spread accurate awareness about these illnesses. In the meantime, guess what? I’m tired.

Health, Happiness, and Hang In There.

http://phoenixrising.me/

http://www.cfids.org/about-cfids/do-i-have-cfids.asp

http://www.pandoranet.info/

AboutMECFS.org