Living Strong with CFS

Dawn with "Effie" on winter ride.

For twenty years, I rode a blind roller coaster, not knowing where I was headed and what shape I would be in when I got there. From the time I was a teenager I was struck with disabling periods of illness that left me dizzy, weak, with migraines, painful glands, massive hair loss and literally hundreds of other symptoms.  The illness had been a mystery for so long that my family and I had begun jokingly calling it “Steve” in our “Over the Hedge” reference to anything that was unknown.  It was only last year that I was finally diagnosed and – although I still ride that roller coaster- the blind-fold has been removed.  After finding an amazing doctor that actually listened to me, after almost a year of every test you can imagine (treadmills, MRI’s, CT’s, more blood taken than a Blade movie…) I was finally diagnosed with Chronic Fatigue Syndrome.

There is not nearly enough room in this blog to explain just what this illness can do to your life. Sadly for me, the earlier you get a diagnosis the higher your likelihood of recovery. I think I missed that window a couple of decades ago but I refuse to live a life “half-lived”. If you think CFS is just about “being tired” as the asinine name suggests then please learn a little bit more about this illness by reading the award winning New Yorker article "A Hidden Illness" written by Laura Hillenbrand (yes, the author that wrote “Seabiscuit”, the one that became the movie, and the new book “Unbroken”), her experience as written in this article is amazingly similar to what I myself have experienced.  If you only have time to read one article this week, stop reading this one and read hers instead. (Then come back to this one later.) http://www.cfids-cab.org/MESA/Hillenbrand.html



Single mom, no bike.

For those that know me, I am a farm-raised kind of girl who determined her self-worth by how hard she could work, by how many hours she could labor and sweat without rest. I struggled to maintain that identity the whole time I was ill, unknowingly further harming myself. I just could not understand why I felt so exhausted, I was not a lazy person. I had fallen so far down into the “pit” that just walking a partial block was too much for me to bear. Then came a divorce and I was solely responsible to support and care for two young daughters. I did the best I could and was able to function to care for them, but that was about the limit of the quality of my life. 

Then I met Chris. Chris was an avid cyclist and an incredibly active man. I doubted my ability to keep up with someone like him while I struggled to walk a block. This and other obstacles did not deter him from pursuing me and I felt that if he was willing to weather the storms in my life than the least that I could do was meet him halfway. His love of cycling and his desire to share it with me helped me to overcome my apprehension and I started to ride with him.

The first ride pushed me to my limit and left me shaking, dizzy and disoriented. We had gone only 6 miles. I was ashamed and I felt that surely Chris would not have the patience to put up with a woman so weak. To my shock, he held on with me and his refusal to give up on me fueled my fire. Don’t get me wrong, riding with Chris is tough because he COULD… NOT… GO…. SLOW! He would always assure me that he would just ride ahead and ride back to meet up with me but I hated being left behind, it was too much of an analogy for how I had lived my life for so long with CFS. So I did what the stubborn farm girl in me always did when challenged, I hauled ass. Months later I had managed to barter for a nice little hybrid and I was pulling thirty and forty mile rides averaging 17 to 19 mph. I named the bike “Effie” because on her I felt “effortless”.  On straight-aways I could maintain 22 to 23 miles per hour and on downhills I was a brick that knew no fear of fast curves. In that way I was able to keep up with Chris aka “the Kite” and rebuild myself into something of an athlete.

For a while, I forgot I had this mystery illness. I worked teaching at a smaller local college, often commuting on Effie and for play I ate up the trails with a joy of freedom I had never before known. Then Effie was stolen and, for a while, I lost my heart.

Looking back, I can’t help but think that the electric shock I felt in my heart when I discovered my beloved bike was gone had jump started “Steve” back to life. A few months later I became ill with pneumonia and fell right back into the pit that I had thought I had forever escaped.  Illness, miscarriage, disability and bankruptcy awaited me in the pit and it seemed that every time that I could start to climb out again I was caught by the ankle and pulled back down into the sulfurous depths.



Newest (and last) Grove addition.

Pregnancy with our son was a blessing of good health as my CFS went into a short remission but the -100% natural- delivery depleted everything I had and I was once again in the hole. Now I was at home, chasing a very active baby boy (who seems to ignore the idea that babies need lots of sleep) at my not-so tender age of 38 with a full onslaught of CFS symptoms while my husband went to work every day to support our large, blended family. Honestly, it is hard to want to keep fighting when you are that exhausted.

Then my father-in-law, ironically also named “Steve”, posted a guest blog and introduced us to the www.livestrong.com site while talking about his own challenges to be healthy. Thinking of the considerable challenges he lives with, of how hard he fights to stand back up every time his health and heart faltered how dare I wallow in the “Pit of Steve” and not fight back too? Newly armed with a diagnosis –and with that a better idea of how to manage living with CFS- and a new account with the Livestrong.com website I began to track what I ate, what I drank and what I did each day. As Steve (the good one) urged in his blog article I was brutally honest with myself and I logged in every day for two weeks. I learned so much about not just what I ate, but how I ate. I was able to whittle away too-large portion sizes and limit the vices that packed in the calories. I went from an average of 2,000 calories per day to under 1,700 per day. I have lost three pounds in those 14 days.

The exercise is trickier; I have to be careful not to exhaust my small reserves. For two weeks now I have been slowly ramping up with yoga and then added Tai Chi. Now, I am ready for more. Today is day fifteen and will be my first gym ball workout but all of this is just working up the strength and breath to get back on a bike. We have not yet been able to afford to replace my beloved hybrid Effie so I am stuck with loaners but anything that gets me back on the trails is a worthy steed indeed.  

Before I wrap this up I wanted to thank Eric Taylor for sharing his story with us. His misfortune with his bike inspired not just a blog about his challenges but yet another blog about some of my own trials. This spring, Eric, I will see you on the trail! Stay strong.

Have You Seen This Trek?



Eric Taylor (photo by Scott Ivey)



Well, happy New Year Eric Taylor! I wish I could say that 2011 started out better for you. Who’s Eric? He’s a local guy, struggling to make ends meet and get an education in a world that seems more and more hostile and selfish. His life is already full of challenges –did I mention that he is deaf?- that he has to work through but he keeps himself on a positive track by cycling and going on rides with his buddies like the Hammerin’ Wheels Mountain Bike group.

Then just as the holidays were winding up some jerk decided to give himself a belated Christmas present, too bad it belonged to Eric. A 2010 4500 Trek (grey/black) that Eric had just signed up to race this January 23^rd.

“The bicycle was locked to the hitch of the truck when it should’ve been in the backyard or something :( “ Eric admits. He explains that he was not driving his regular vehicle “…On that truck i have a master 3/8 thick cable lock, locked to the anchor points (when I get it back I’ll lock it to the hitch because I realized how easy it would be to unscrew the anchor points...) but I didn’t take that cable out and ended up using a different (smaller) cable.”   

Eric called the police and reported the theft immediately and then cavassed the neighbors asking if they had witnessed anything. His search, to this point, has been fruitless and with his first race just a couple of weeks away he is getting frustrated. “Makes me very sad to think about it being gone every time I think about it! I have a race this month and no bike in riding condition ugh!!! EXTREMELY HARD LESSON LEARNED and thanks to the jerk who stole my bike I am now more paranoid than ever about things being locked up. It is now day 5 and I am still making calls, posting signs and asking around in hopes of finding it but I know I probably won’t.”




Eric and his now missing bike at a Hammerin' Wheels ride. (photo by Scott Ivey)

 

We can only hope that the community can come together to help Eric so that we can restore some of his faith in his fellow human. If you have any information or can help Eric in any way, please speak up. You can post to the comments section of the blog or click the button on the front page of www.grovetribe.com to send an email to us and directly to Eric simultaneously and/or contact the local authorities. You can also help tremendously by getting the word out. Forward this information to any group you can, repost where-ever you can. Heck, print it out and post it to your local coffee shop board! Maybe, just this once, a village can make the difference.

Location of theft: Rio Linda/Sacramento area on Claire Ave by Marysville Street

Time of theft: January 1, 2011 between midnight to 7 am

Angus The Big Blue Bike

ANGUS: The Big Blue Bike with his GroveTribe owner Chris

We wanted to give our friends a bicycle gift for the holidays and on the eve of Christmas we decided to share the story of Angus The Big Blue Bike. Angus is the name of Chris' mountain bike and one day we started talking about all of his adventures and making up stories about Angus. Here is the first one we wrote. Please share this with your kids, read it out loud to them as a part of your Christmas celebration. HAPPY HOLIDAYS AND A WONDERFUL NEW YEAR!

ANGUS THE BIG BLUE BIKE
story by the GroveTribe

Angus’ first experience of the world was dark and noisy and bouncy.  He did not know where he was or where he was going and he was a bit frightened.  After a while the noises stopped and he could feel himself being lifted through the air. He was set down, still in his box and everything was quiet for a long time. He sat in the silent darkness and wondered what was to become of him. He began to feel very lonely and cramped.

A while later, Angus heard voices and although he was still a little frightened, he was excited and hoped he would be let out of his dark shipping box. The voices got louder and he began to be jostled about, he heard a loud noise and a rush of light and air flooded into his box. Hands grabbed his frame and pulled him from the box. He was very happy until he heard the voices grow angry.

“What’s this? A mountain bike? Hey! Did you order a mountain bike?!?” One voice said.

“Of course not! We only carry road bikes! I wouldn’t order a mountain bike!” Came a reply. “I’ll call and find out what happened. I can’t believe we get this sort of mess up just a week before Christmas.”

The voices walked away and Angus was left alone once more. Or so he though. Looking around he saw dozens of other bikes. Sleek, small bikes with delicate frames and thin smooth tires.  None of them looked like Angus. He was big and tall and blue with heavy, nubbly tires and a big, tough frame. He began to hear whispering among the other bikes.

“What’s HE doing here?”

“Have you ever seen something so clumsy looking?”

“Who would ever want to ride THAT?”

Angus had wanted to say something as soon as he saw the other bikes but now he felt awkward and afraid to speak. He just sat there very still and said nothing until the first two voices returned.

“Well.” Growled the first voice. “It looks like were stuck with it. Put him up in the rack and hopefully someone will buy it before Christmas.”

With that, Angus was gruffly lifted into a rack in between a petite black bike with delicate vines and leaves painted on her frame and a tall, red bike with thick white letters and handle bars. Once the bicycles were left alone, the tall red bike sneered at Angus.

“You don’t belong here. No will ever want you!”

“That’s enough Orbert! Be nice!” said the delicate black bike on the other side of him. “My name is Annadale. What’s yours?”

“My – my name is Angus. Why don’t I belong here? Why did those others call me a mountain bike and said that they didn’t want me?”

“Others?” Asked Annadale not sure of what Angus meant.

“They don’t look like bicycles. They have no wheels.” Angus explained.

“Oh! Those are RIDERS. We are made for them. When we have a rider of our own we become free and we become fast and nimble and taste the wind! Oh, to have a rider is the greatest dream come true!” exclaimed Annadale with hope and joy in her voice.   “This is called a bicycle shop, this is a place where riders come to find us and take us home to become part of their family. It is every bicycle’s hope to have a rider.”

“He’ll never have a rider. He is far too ugly? What rider could fly on the back of such a beast like him?” sniped a black bike with an angry pink stripe that curved along her frame.

“Damia! Be nice, it’s not his fault he shouldn’t be here! He’s just misplaced but I am sure someone will want him too.” Angus could tell that Annadale was trying to be nice but she did not sound like she believed he would ever find a rider of his own. Angus thought Annadale was very sweet but he didn’t want to be in this place where he felt so ugly and unwanted.

As days and night passed by, more and more riders entered the shop. Some were shorter and smaller and looked at bikes like Annadale and Damia. Some riders were tall and slim and muscular and would take bikes like Orbert off the rack and sit upon his seat. Orbert would preen and shine and looked so pleased with himself. No one looked at Angus.

More and more of the bicycles left the shop. Angus was very happy to see Orbert leave with a rider and ignored how proud the red bike looked. The shop became more and more empty and the whispers of gossip about Angus faded away as the bikes and riders, everyone except Annadale, ignored him.

Over and over he heard words like “Christmas” and “Hanukkah” and “present” repeated by the riders. The bicycles were always so excited when the shop was opened in the morning. Everyone was so joyful, except Angus. He knew that soon, a bike as beautiful as Annadale would go home with her own rider and he would have no friend left in the shop. Later that morning, one of the tall, muscular riders with eyes as blue as Angus’ frame touched Angus front tire and gave him a close look. Angus felt a rush of happiness and hope as the rider looked at his frame and his gearing and his brakes. Maybe, just maybe, this rider would want Angus!

Then a voice distracted the blue-eyed rider and he walked away, forgetting Angus and moving on to another part of the shop.

“Oh, Angus. I’m so sorry.” Whispered Annadale.  Angus just hung silently in his rack and refused to look at any more of the riders. It wasn’t until much later, when the shop lights went out and he turned to Annadale that he realized that she was gone. Annadale had been claimed by a rider and he hadn’t even said good-bye to her. He was so busy feeling sorry for himself that he didn’t share in his only friends joy that her dream had come true. Now Angus was more alone than ever.

The next morning the words “sale” and “clearance” and “Christmas Eve” were said by riders just as much as the words like “gift” and “under the tree”. More and more bicycles left and as the sky grew dark Angus found himself alone. The only bicycled that had not found his rider. The riders that helped the other riders find their bicycles started preparing the store for closing. Bits of paper were being counted. The floor was being swept and words like “family” and “dinner” and “time with the kids” were being used by the two riders left. When one of the riders turned the sign on the door around so that the word “closed” could be seen through the window. Angus’ heart sank. There would be no rider for him, he was big and ugly and alone. No one wanted him.

“No will ever want you!” Orbert had been right.

The two riders were pulling on jackets when a loud banging on the window made them turn around. One of them opened the door and let in a tall rider who walked right up to Angus. As soon as the rider looked up at Angus with his clear blue eyes and touched his frame.

“I want the Big Blue Bike.” The rider said. The other riders smiled and hurried to the money box while Angus felt himself being lifted by the strong hands of his rider.

“Do you want us to load it into your car for you, Sir?”

“No.” Replied Angus’ rider. “I’ve been saving up all year. I want to ride him home. “

The Plus 1 Factor - You always need another bike

You can't have just one. It doesn't apply to just potato chips and I find bicycles to be much more satisfying for my appetite. Which brings me to the kitchen table, eating breakfast with my wife this morning and going over the race calendar for 2011. It's no easy task to figure out how to get me to as many races as possible while still taking care of the family.

I notice that there are time trials on the list and start wondering if I should invest in a time trial bike.  I have done some informal time trials on my standard bike and had a blast which has left me salivating for a bike that is up to the task.

Then I start thinking about my work with the Folsom High Cycling Team and looking ahead to the mountain bike race season, I again think that I need to get a new hard tail that is more suited for racing than my Turner 5 Spot. (My Turner is an awesome bike, it just isn't suited for the cross country racing in my area.)

As we finish plotting out the race calendar, I notice an open entry at the end of the team calendar for cyclocross.  So I start thinking of how cool it would be to continue the race season into the late fall and winter with cyclocross racing.  I haven't tried cyclocross yet, but it looks absolutely awesome.

We stopped by Bicycle Plus in Folsom today to check out bikes and they happened to have two bikes that I was looking at stacked on the same display rack.  On top, the Specialized CruX.  On the bottom, the Trek Superfly 29er from the Gary Fisher collection. I stood gazing at two of my three dream bikes -my son thoughtfully holding on to one of them for me so no one else would take it- when Leej (of Bicycles Plus) gave me a knowing nod and said, "Ah, it's the "Plus One Factor". You always need another bike."

Of course, we leave empty-handed (I'm still trying to figure out how to afford race fees, let alone the cost of a new bike!) but on the way home we stop to get gas and I hand two bucks to my wife and ask her to get a couple of lottery tickets.  Because hope never dies, and neither does the need for.... one...more...bike....