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

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20 thoughts on “A Snails Pace

  1. Hey, i just landed here and it’s a pleasure. I can appreciate how much effort it takes even to write about the bad days, so from those of us too busy laying in bed to do that, thanks! I totally appreciate your description of hibernation and not answering the phone and then seeing who is there when you come out of it.

    My own similar experiences have been diagnosed as dysthymia and double depressions, although I am investigating if there may be an underlying cause or if dysthymia IS the cause. As many of the other commenters said, it’s always a comfort to hear from others with “invisible illness”

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  2. Bah! I feel like this too! I was put on a new medication for my ulcerative colitis and it is making me feel really fatigued! On top of this, my brain has decided that it is not my meds making me tired but that I am just lazy and trying to shirk my responsibilities! So not only do I need a new colon now, I also need a new brain!

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  3. While I don’t have Fibromyalgia, I DO have Bipolar II Disorder and on my “down” days (or weeks..), I can TOTALLY relate to feeling the way you described in the first half of this post :( It really sucks! But it helps me to know that I’m not the only one who feels shitty at times and there are people out there who can relate. Sending you well wishes chicky! xoxo

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  4. “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.” = I can’t stop giggling about this comment… (as a lay in bed curled up with my kitten) I can only picture myself and how big of a pain in the ass I have Prolly been for my family doing the exact same thing.. ha … Guess its only funny though when youve been that person.

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  5. Your blog is amazing, starting with your hilarious title. I have a circulatory disorder with some fibro-like symptoms, so I can identify with some of what you are dealing with. Thanks for telling the world what life is like with a chronic, invisible illness! And thanks for reminding me how important a sense of humor is to dealing with the difficult days. You’ll be in my prayers.
    And Geaux Tigers, even if that game was preposterous.

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  6. Hey hun <3

    Hope this finds you feeling even just the slightest bit better & more hopeful! I too no longer work (thank my husband, God, etc.) & am able to ride out the hibernation phases without having to push myself to extremes. I find the hardest thing to say no about & limit myself in is time with my family & the few friends who really DO care & show they do so by continuing to "come back" every time I "hole up" & don't answer calls. I always seem to "overdo it" & then promise I never will again. I see this weekend coming up being another such event & then some. But I just get so frustrated with the ways Lupus & weekly chemotherapy injections affect my life that sometimes I just HAVE to accept invitations to VIP events like my best childhood friend's engagement party in Jackson, MS this weekend. So not only will I be traveling in the car (ouch), but I will also be away from home & my own bed (double ouch). And of course it now seems the entire weekend is booked full with people to see… and I am in a bit of a panic over it all honestly. I just wish I could enjoy time with my family & friends without paying for it afterwards… and I guess I am venting here because I know YOU understand.

    I hope we can get to know one another better & become "blog buddies". I am new here & need a friend who "understands"! *HUGS*

    Keep on keepin' on! It's all we can do <3

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  7. *hugs* for you, it sucks to have bad fatigue days. I’ve just finished struggling through a block of days at work feeling like I was going to fall over…not fun…but I’ve successfully made it to a day off (only fell over once…) and my paycheck has come in, so I’m feeling kinda accomplished :)

    It’s so comforting to know I’m not the only one out there who can’t find a reason for the bad days, and who is still struggling to get diagnosed. And it’s nice to be able to accept that spending entire days off laying in bed watching TV when you are feeling bad is OK :)

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  8. I’ve had very well-meaning people offer me solutions to my fibro pain, from exercises to homeopathic tea. I can tell you that there are days when the exercise is all that and a bag of chips and I come out of the gym like Wonder Woman. There are times when I feel great right after, and then I feel like I got hit by Wonder Woman sometime after that. It’s mostly experimentation, really…which…sucks.
    I was very nice to all the people who offered me homeopathic solutions for a long time, and I honestly gave some a shot…a real..nasty tasting…can’t brush your teeth enough..shot. Now I quote a guy I saw on Last Comic Standing. “I understand that it’s natural. A pack of wolves is natural, though, and I can’t see taking one of those for a cold.”

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  9. In the words of Rev. Paul, Mary is a skilled, smart and VERY creative writer. I am not a computer person but I wait for her posts and when they are not on, I read the older ones. Even had a handshake with Monty. Love, peace and better days.

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  10. Sorry you’re feeling rough. You’re a skilled, smart writer. I would think maybe the writing and blogging is therapeutical for you, helping you to process your feelings, and it’s certainly helpful for others with the same malady and educational for the rest of us to know and learn about from someone experiencing it.
    Hope you get better.
    And oh, sorry about your Tigers but at least their consistent winners. Having your hopes raised only to have your heart ripped out year after year–not to mention often being humiliated from coast to coast on national/world TV by “America’s TEam” . . . well, there’s no therapy for that with the possible exception of too much drinking and that’s not healthy either.
    Grace & peace,
    paul.

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  11. I can so relate to this post. I, too, have been feeling extra poopy the past few days…damn fibro. I was able to stay home from work yesterday, but I used up the last of my sick leave so I had no choice but to go today. As much as I love my job (and the income), I wish I didn’t have to work so I wouldn’t have to worry about MISSING work when things get bad.
    I’m super excited to read your upcoming collaborations – but then again, I always love reading your posts! It just makes me feel better to know that I’m not alone in dealing with the craptasticness that is this disease.
    BTW – poopy fart days? PERFECT! :-) Here’s hoping for less of them!

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  12. A friend just sent me your blog. As a long-time sufferer who has some better days, and some not-so-good days, I could totally relate. I really loved your comment about the question being like asking if someone could be pregnant because they gained weight. LOL. Thanks for the humor as we all need it.

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  13. Thank you for the words your write. They always seem to come at such a perfect time! It’s so nice to know there are other folks out there in what can seem to be very alienating trenches. I too am quite the social bug normally, but my health constraints have left me feeling alone and misunderstood. Being able to touch base, even with strangers, and knowing there are other people who are moving through these life challenges, makes the burden quite a bit easier.

    Big cheers and a cyber hug to you!

    Stacey

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  14. Wishing you comforting thoughts and brighter days ahead. My sister is developmentally disabled and suffers from neuropathy. Different than your ailments but similar in that it’s hard to pinpoint the why and the where. She is in pain a lot though and it’s hard on those around her.
    I’m sending you a warm and fuzzy blog hug and hope you feel relief soon.

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  15. You and I were thinking the same thing this morning. I was so grateful to be able to stay in bed and rest as long as I wanted. When I got out of bed, the first thing I did was email my husband and thank him for working hard so I don’t have to.
    lol, African JuJu beans!
    Hang in there!

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  16. This is a great post, gal, and one that needed to happen. I applaud you! I know your blog was intended to be a giant box of randomness, and its going viral exposed you to a whirlwind of commenters, trolls, stalkers and new BFFs – but it also thrust you into the role of de facto expert on your condition. If you were, in fact, the expert, then you wouldn’t need to go to the doctor! Even doctors don’t know it all – that’s why they’re just “practicing” medicine!
    Thank you for writing this post. Thank you for clearing up some stuff for lots of people. Thank you for putting yourself out here in cyberspace. You are a great source of laughter, inspiration and information!
    Be well.

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