Journey for Max

There are a lot of things that I cannot imagine doing, healthy or ill. One of them is running across Death Valley in July.

But Connie Karras will do just that, and this year she is running to honor a friend with CFS.

Last year, Connie ran her first Badwater Solo and it was her friend Max Gordon who helped her do it. Despite her illness, Max stayed with Connie as part of her support crew. Connie credits Max with helping her finish. So this year, Connie will run another Badwater Solo to raise money for the CFIDS Association.

I've made my pledge in support of Connie's run. Will you do the same?

Not Again

Remember how I couldn't see the Yarn Harot last fall even though I was less than an hour's ride from her? It's deja vu all over again.

Stephanie Pearl-McPhee will be speaking at the Philadelphia Book Festival tomorrow and then signing books. I was hoping that I could go, despite the fact I'm still recovering from the trip to DC. My husband was pretty determined that I should go, and was willing to wrangle the wheelchair and try to get special accommodation from the Free Library folks (who have been friendly).

But I'm too ill. I would be in a full crash before I even got to the room filled with several hundred rowdy knitters. And waiting in line for her autograph would be completely impossible, even in my wheelchair. The noise and crowd is more than I can handle, let alone the strain of the outing itself.

I love Stephanie and I love her new book. She has been so kind to me and the various Swatchys that my friends have taken to her events. I would like to tell her in person how deeply she has touched my life with her humor and kindness. But I cannot.

Once again, CFS has interfered and stolen something from me. Once again, I have to tell myself that I can't do something even though I desperately want to do it. I have to give this up in order to safeguard my health for the next week. It doesn't matter how fun it would be; going to see Stephanie would put me in bed for several days and extend my current crash for a week or more.

My blog-friend Sue recently observed that coping with CFS takes incredible strength. It takes strength to stop yourself from doing something you would enjoy because you know how severe the consequences would be. I don't know, but maybe it is like the strength that is required by an alcoholic to say no to a glass of champagne at someone's wedding. You know you cannot take part in small, happy thing because of the consequences that will follow. You have to tell yourself no, and find a way to be ok with it.

Can you understand what this feels like?

Dealing with the Holidays

Part of our ongoing series about life with CFS.

The holiday season is upon us, and hard upon me. Every year, my husband and I fight the same battle with ourselves. Inevitably, we commit to doing too much and, inevitably, we fall short of our own expectations.

In the early years of my illness, I lived in great denial of my disability. I felt like a slacker for not working (although I gave up my job kicking and screaming) so I tried to do handmade holidays - handmade gifts, ten kinds of cookies, and even handmade wrapping paper one year. Last year, I tried to knit too many gifts, and made myself crazy.

Each year, I give up another "thing". Handmade gifts, handmade holiday cards - gone. Even baking is gone, and I really resisted that one. We've told our families that they each get "one shot" at us for Christmas. We can come to one family gathering for each side; they can tell us when but if someone isn't there, they'll have to come see us.

Yet every year, we hit the end of November and see the holidays coming for us like a mack truck. This year is my husband's 40th birthday, and we each bought tickets to an event to celebrate. I bought him concert tickets, and he bought NFL tickets. In our optimism (denial?), both events fell between November 20th and December 5th, with Thanksgiving in between. We didn't make it to the concert. We did make it to family Thanksgiving, which was lovely. Now I'm resting up for that football game. I am determined to go, and willing to pay the price afterwards.

Will we ever learn?

So Close, So Far

Part of our ongoing series on life with CFS.

Everybody here at Travels With Swatchy loves the Yarn Harlot. We love her so much that both Swatchy McPhee and Swatchy (the original) have gone to see her. Now she is coming close to my neighborhood.

This Friday, YH will be in Marlton, NJ. I will be just over one hour from Marlton, NJ. But never the twain shall meet.

I cannot drive because of CFS. Going out at night is extraordinarily difficult for me because of CFS. I have been very ill this week, with pain and brain fog especially, because of CFS. And on top of all of that, I made a promise to some of the dearest women in my life that I would spend the weekend with them.

Celeste lovingly badgered me into emailing the Yarn Harlot to see if we could meet up in the afternoon. I was hesitant to ask for that kind of special treatment. Because YH is incredibly awesome, she sent me a very kind reply and actually apologized that her schedule was too crammed for a separate drive-by hug.

If you only understand one thing about life with CFS, understand this: I am unable to travel one hour by car to see the Knitter that I admire more than any other. This is what life with CFS means. I am so close, but may as well be a world away. The number of events (large and small) that I have missed is far higher than those that I have been able to attend. My energy is scarce, and I am still learning to prioritize how I spend it. (Feeling like crap + a promise to my family) / nighttime outing = no Yarn Harlot for me.*

There will be another time, I tell myself. I say that a lot. Does it ease the disappointment of missing out? Maybe a little. Maybe sometimes.


*Noricum, are you proud that I did math?

Not Celebrating Today

Part of our ongoing series on life with CFS.

Thirteen years ago, I walked into a brick wall. Actually, I was walking happily next to the wall when it gathered itself up and jumped on me.

Thirteen years ago, I went to work with a sore throat. By mid-morning, I could barely swallow. When I left work that afternoon, the sore throat had mushroomed into fever, dizziness, headache, weakness and aches so bad that it felt like being hit with a baseball bat. I took home a briefcase full of work, but I spent the next three days sleeping. I don’t even remember if I left my apartment. The following Monday, I went to my doctor. He said I had a virus and to call him in two weeks if I didn’t feel better.

That was thirteen years ago. That was the day CFS moved in to my life.

This blog is about coping with CFS. Noricum and I created Travels with Swatchy so that I could symbolically accompany friends and family on the adventures that CFS has taken from me. But for me personally, October 6th is not about coping and it is certainly not about celebrating. Today I try to remember what I felt like on October 5, 1994: my last day as a healthy person.

Almost One Year

One year ago, my essay about how knitting helps me cope with disability aired in Episode 34 of Brenda Dayne's podcast, Cast On. Noricum heard my essay and contacted me with the idea that became this blog. So, thank you Brenda and thank you Noricum. You have had a larger impact on my life than you may ever know.

Here is my original essay:

As I’ve listened to this series on Sense of Place, I’ve slowly realized how my knitting does, in fact, reflect my surroundings. I’ve only been knitting for five months, so I assumed it was too early for me to think in terms of such an influence on my craft. I wish I could claim that my knitting is shaped by the endless stretch of Montana grasslands, or the heart-stopping, gut-wrenching beauty of Crater Lake in Oregon, or even the lights of a city nightscape, but I cannot. On the contrary, I cannot leave my home for more than a few hours a week. I am enclosed within the walls of chronic illness, a disability that has remade my life in its own image.

I fell ill at the age of 26, just twelve years and several lifetimes ago. Whether through prescience of my future, or dumb good fortune, I had already slept beneath the big sky of Montana. I had hiked down to the edge of Crater Lake. But I was not a knitter then. Had I been, I suppose I would have knit fair-isle sweaters for nights by a campfire, or thick wooly socks to go with my hiking boots. Complicated lace charts would not have frightened me the way they do now.

My knitting reflects the emotional and spiritual place I occupy within this strange disabled life. I need to knit simple projects that require little attention to detail because I cannot concentrate very well. My energy is my most precious resource, so every stitch must be both pleasurable and successful. I strive to create productivity and accomplishment in my day, defying my body’s restrictions. I absorb every expression of the craft of knitting, from patterns to books, from blogs to podcasts, so that I can transport myself outside my walls towards the community of knitters that I cannot visit in person.

My knitting also reflects my physical place in a simple way. I make two kinds of projects: gifts for treasured family and friends, and comforting objects for myself. The gifts allow me to symbolically travel out into the world with loved ones, since there are too many times when I cannot go with them. The things I knit for myself are simple, warm, soft. Because I spend my life confined to my home, I try to make it a place of simplicity and comfort. I’ve made quilts, drapes, pictures and other things, and each object tells a story about what was happening in my life at the time. I remember where I bought each yard of fabric or skein of yarn.

In May, my husband and I celebrated our tenth wedding anniversary. We met shortly before my illness, and he has walked a difficult road with me. To honor this milestone, we traveled to New Mexico, a place I had long dreamed of visiting. The trip came with a high price, paid with pain and exhaustion, but it also felt like we were playing hooky from our day to day existence. We visited a small wool co-op, and I purchased three skeins of natural colored wool. When I got home, I chose two Barbara Walker stitch patterns: Navajo basket and tri-color tweed. I had never knit without a pattern before, but I calculated my gauge, held my breath, and somehow knit two pillows for our family room. The shades of brown and texture of the stitches remind me of the New Mexican landscape. I use the pillows every day to support my back or cradle my head. Most importantly, the process of this knitting keeps me connected to the most important place of all – the part of me that is not illness or disability, but strong and brave and powerful.

1994

Eliza's pictures from Scotland in the Black Cuillins post reminds me of a trip we took together back in 1994. Do you remember, Eliza?

Eliza and I took two weeks to camp and hike in Oregon. We visited Crater Lake, my personal favorite, but we also traveled to the Three Sisters area. This used to be the site of an active volcano, and the evidence of eruptions can still be seen.



I was so struck by the contrast between the green of the pine trees and the black of the volcanic rock. This trip was the last camping trip I made before I got sick. We traveled at the end of July 1994, and I fell ill in October. It is so weird to think that this was the last time Eliza and I slept in a tent, made a fire, and hiked in a forest. At the time, I expected we would make a trip like that every year.

How To

Part of our ongoing series on life with CFS

People with Chronic Fatigue Syndrome are all too familiar with prescription medications and supplements. There is no cure for CFS, so all we can do is try to manage our symptoms. Like many patients, I have taken medications for a variety of symptoms, including pain, sleep, and IBS. Most people with CFS are very sensitive to medications, so dosages must be carefully managed and changes must be made slowly. Recently, I needed a written refill for one of my medications. Here is my "How To" guide to getting a refill from a doctor:

1. Call medical assistant, requesting that written prescription for your essential medication be waiting at the front desk the next day (since you have another doctor's appointment in the area).
2. Go to office and discover the prescription is not waiting for you.
3. Try and stay calm as medical assistant tells you she did not get your message because she was out of the office the day before, and no one covered her phone.
4. Wait as assistant speaks with doctor about prescription.
5. Control frustration when assistant tells you that doctor will not write prescription for your essential medication because you were a "no-show" at your last appointment.
6. Correct medical assistant, pointing out that you had rescheduled that appointment because you had no one to drive you on the day in question.
7. Wait in examination room while assistant asks doctor to come speak with you.
8. Control anger when assistant reports that doctor said, "Tell her I do not run a walk-in clinic. She can't come in off the street and get a prescription. She can make an appointment to see me on Monday."
9. Agree to provide assistant with phone number and fax number for mail order pharmacy, so that attempt can be made to secure refill that way.
10. Go home and count how many doses of this essential medication you have on hand.
11. Reduce dose of essential medication in attempt to stretch out what you have left.
12. Call assistant every day to check on status of the refill request.
13. Start looking for a new doctor.
    

There are so many things wrong with this recent encounter with my doctor, and I won't bother to point them out. I'm sure you can figure out why I am angry.

But I actually think that I am lucky. Why? I am fortunate to have prescription coverage, so that when I eventually get the refill I will not have to pay hundreds of dollars for the medicine. I am fortunate to live near a city that has other doctors to choose from. Many people with CFS are not as fortunate. Less than 20% of the people who have CFS have been diagnosed, so the vast majority of people are not getting help for their symptoms. Even patients who have been correctly diagnosed struggle to keep health insurance (if they have it to begin with). The chances of a person with CFS getting the correct diagnosis from a doctor who believes them and has the knowledge to treat symptoms appropriately? Not good for most people.

I have to remind myself of that, so I can keep my outrage in perspective. Because how I really feel is mistreated, insulted, and angry.

How Many?

Part of our ongoing series about life with CFS.

How many people have Chronic Fatigue Syndrome in the United States? Until recently, the answer was approximately one million people, almost four times the number of people with Multiple Sclerosis. Now, a recent study estimates that 2.64% of the population may have CFS.

In other words, approximately 5 million people in the United States have CFS. And the number could be as high as 7 million.

More people have CFS than have HIV infection. The CDC estimates that approximately 1.1 million people were living with HIV infection at the end of 2003, and 25% were undiagnosed.

More people have CFS than have breast cancer. Approximately 2 million women living in the U.S. have been treated for breast cancer.

So how much is our federal government spending on CFS research? $13 million in 2006. That's right, $13 million. Less than three dollars per patient. Angry yet? What if I told you that less than 20% of people who meet the diagnostic criteria for CFS have actually been diagnosed. Millions of people are sick and do not know why, or are being treated incorrectly, or have been told it's all in their heads.

Where is my government? Why is no one helping us? This new study has its critics, to be sure. But even if the study is completely wrong, and "only" 1 MILLION Americans have CFS, my government does not invest nearly enough money for research.

What will it take for our lawmakers to pay attention?

What will it take for you to help?

Edit: Check out today's article in the New York Times.

CFS Tuesday

Life with CFS is unpredictable at best. Today, I am awaiting a call from one of my doctors about some new test results. I meant to post and say that there will be no CFS Tuesday this week, but I guess this is a different sort of CFS Tuesday.

This Tuesday, my mind is occupied with questions about what will come next in my life with CFS.

Sorta CFS Tuesday

Not really part of our ongoing series about life with CFS.

I'm recruiting. Recruiting, I tell you! There are some amazing upcoming knitting events that I cannot attend. If you, or someone you know, is going to one of these events and would like to carry a Swatchy, give me a holler!

1. Stitches East - Miles of yarn in the Baltimore Convention Center and a bunch of classes I wish I could take. October 11-14, 2007.

2. Rhinebeck - The legendary New York Sheep and Wool. Knitting luminaries, lots of sheep and other fiber beasts, and LOTS of yarn. October 20-21, 2007.

3. Knitting in Italy - Dudes! Italy, knitting and Brenda Dayne! Gah! October 23-30, 2007.

4. Sea Socks '08 - A knitting cruise to Alaska with (take a deep breath) MamaE, Amy Singer, Chrissy Gardiner and Brenda Dayne! Departs May 9, 2008 from Seattle for 7 day cruise.

Is there a knitting event in your area? Are you going somewhere calm/exciting/fabulous/wonderul for summer vacation? Wanna carry a Swatchy? Gimme a holler here: knittahsp9 AT yahoo DOT com.

CFS Tuesday

Part of our ongoing series about life with CFS.

I am becoming more aware of how little it takes to upset my physical equilibrium.

My physical therapist has given me a home program that requires a certain level of activity every other day. Last week's IBS had such a strong effect on my overall energy level that I missed two days of the program. Even after twelve years of living with CFS, I am still amazed at the fragility of my equilibrium.

I keep records of my daily activity, symptoms and medication. The more detailed my record keeping becomes, the more fragility I see. Anything can upset the equilibrium. Bad news, an IBS flare, too long a wait time in the doctor's office - those are just a few examples. If I'm lucky, it only takes a few days to get back to "normal." Sometimes though, it can take months.

I see my equilibrium for what it is: a teeter-totter at the point of balance. Even the weight of a small bird can tip it in one direction or another. So what do I do? In order to protect this fragile balance, I would have to avoid unpredictability. It would be easy to take that to an extreme. Do I avoid talking to people on the phone? Do I carry food with me, and only eat what I am able to cook for myself? Do I limit my activity to that small amount I can easily tolerate, and never go to the movies or dinner at a friend's?

Or is it worth tipping the teeter-totter in order to enjoy a little more of life?

CFS Tuesday

Part of our ongoing series on life with CFS.

CFS Tuesday snuck up on me again. I have a mental list of topics I want to write about, and I always plan to write a bunch of these mini-articles in advance. But it's Tuesday and I'm winging it again.

A year or two into my life with CFS, I developed irritable bowel syndrome. Up until recently, my IBS was pretty well controlled. I have never been able to identify what will trigger a flare, but I got better at taking my preventive medication. With the pain meds I'm on now, the IBS had largely disappeared. But in the last month, I've had a couple dramatic flares.

I have no idea what will trigger an episode. I've been unable to identify any foods that seem associated with the flares, not consistently anyway. It's very frustrating. I'll be feeling ok, and then wham! - full onset.

I don't know if other CFS patients experience this, but whenever I have an exacerbation of a symptom - headache, IBS, etc. - my whole body stops. It's like the flaring symptom sucks the life out of the rest of me. Before CFS, I took aspirin for a headache and kept working. Not anymore. Any upset in the symptom balance undermines my whole body. The only thing to do is lie down and wait for balance to return.

So now you know why CFS Tuesday snuck up on me again. I'm lying down, waiting.

CFS Tuesday

Part of our ongoing series on life with CFS

Yesterday was Memorial Day in the United States. The official purpose of the holiday is to honor all those who have given their lives in service to the country. But it made me think of another kind of memorial.

Many CFS advocates believe that Chronic Fatigue Syndrome kills. That position is most definitely not held by the CDC and medical establishment. I've had trouble deciding whether this illness can be classified as fatal.

How do people with CFS die? Many people believe that secondary illnesses - separate illnesses that result from having CFS - are significant risks. Clearly, being confined to a sedentary lifestyle by CFS puts us at increased risk of things like diabetes, heart disease and osteoporosis. There is also anecdotal evidence that people with CFS have an increased risk of some cancers, including non-Hodgkins lymphoma. Then there are the suicides. Excruciating pain, especially when inadequately managed by treating physicians, and secondary depression are the most frequent causes of CFS patients taking their own lives.

Two individual cases are of particular interest. Casey Fero died from myocarditis at the age of 23. Myocarditis is a viral infection of the heart muscle. Did Fero's CFS -affected immune system leave him vulnerable? In 2006, a British Coroners Court determined that CFS led to the death of Sophia Mirza. Specifically, the court found that death was caused by "acute aneuric renal failure due to dehydration arising as a result of CFS." To my knowledge, this is the first time CFS has been listed as an official cause of death.

Is CFS fatal? I'm not certain. The causal link is not as clear as in other illnesses; if you have a heart attack and die, the cause is direct. CFS is not like cancer, where the chain of causation is clear. AIDS is a better model. No one dies of AIDS; patients die of opportunistic infections after their immune systems are crippled by HIV. But the evidence for CFS is not as clear-cut. This is yet another area that deserves medical research. If I am at an increased risk of certain cancers or renal failure or myocarditis, then I need to know that. I need to know how to monitor my health.

As for suicide, that is the ultimate preventable tragedy. Patients with CFS need adequate pain management from healthcare providers. There are so many options now for pain control. And patients who suffer from depression deserve compassionate and appropriate treatment. We cannot be cured of CFS (yet), but we should not be discarded or ignored.

Knittah Representin'

Dear Swatchy,

Wow. Just, wow. You got to go to the Lettuce Knit SnB. You met the Yarn Harlot. And Amy Singer. And the Keyboard Biologist. Wow. It's a knit blogger's dream come true.

I would love to go to Lettuce Knit and meet all those great folks. But chances are, I never will. Travel is hard when you have CFIDS. The reality is that Toronto will probably never rise to the top of my long list of places I want to see. Unless the Yarn Harlot comes to Philly, I'll probably never meet her. At least Amy Singer is coming this summer, and Nori and I will try to get there.

Seeing your pictures is bittersweet. On the one hand, I'm thrilled that you and Noricum had such a great time. But it is a sad reminder of what I cannot do. That is why Noricum suggested this blog to begin with! I made you, Swatchy, because Noricum said she would carry you to great places, and a piece of me would come along.

She was right. A piece of me was representing along with you both.

Love, Knittah

*waves merrily at the Yarn Harlot, the Lettuce Knit crew, and all the muggles*

CFS Tuesday

Part of our ongoing series about life with CFS

Pop quiz: name three symptoms of Chronic Fatigue Syndrome. Fatigue is a gimme, so come up with three more.

Could you do it? Compare your list to the following:

1. Muscle pain, not related to injury or overuse
2. Joint pain, with no redness or inflammation
3. Fevers
4. Sore throat
5. Swollen glands
6. Irritable bowel syndrome
7. "Post-exertional malaise" - a fancy term for needing a 4 hour nap after a 20 minute walk
8. Memory problems, both short and long-term
9. Headaches
10. Word finding difficulties, both spoken and written
11. Inability to sustain concentration at pre-illness levels, such as only being able to read for one hour instead of four
12. Processing difficulty, specifically in understanding spoken or written information
13. Reduced reaction time
14. Difficulty sustaining focus, such as being able to block out sensory input to focus on a task or conversation
15. Insomnia and/or hypersomnia
16. Sleep disturbances, such as nightmares
17. Unexplained weight loss and/or weight gain
18. Orthostatic intolerance, which involves abnormal drops in blood pressure while standing

There are other symptoms that have been found in research studies, such as a variety of bloodwork abnormalities and dysfunction in oxygen use during exertion. And this doesn't count the anecdotal reports that patients are familiar with: increased risk of miscarriage, increased risk of certain cancers, and so on.

Something is clearly wrong with our bodies. And "fatigue" doesn't begin to describe what we endure.

CFS Tuesday

Part of our ongoing series about life with CFS.

Today is Lobby Day for the CFIDS Association of America. Almost 100 patients, caregivers, family and friends are pounding the halls of Congress to ask for more federal research dollars. I will not be with them.

I went to Lobby Day last year. Here is what I wrote about the experience then: "I felt empowered and encouraged that other patients felt it was important to participate, and that staffers felt it was important to listen . . . If CFS were not an invisible illness, we would not have to beg for research crumbs. So what’s the answer? MAKE THE ILLNESS VISIBLE!" But here is what I said about the aftermath: "Recovering from Lobby Day 2006. It’s a bitch. I’ve seen a lot of my bedroom ceiling and my nightstand. . . I don’t feel too terrible unless I get up and walk around. You know, for big things like using the bathroom or getting some water. So what am I complaining about, really?"

Although I felt the experience last year was valuable and empowering, I chose not to make the same sacrifice this year. Life with CFS means hard choices and not doing important things you might desperately want to do. Lobby Day is another one of those things.

But I will not be unrepresented. My mom and best friend will be lobbying on behalf of me and the more than one million other people in the United States with CFS. Today, a very few, dedicated people will try to speak loud enough for our government to hear. They will ask our lawmakers to mount a meaningful response to this illness, which costs our economy billions of dollars in lost productivity and healthcare costs. They will ask Congresspeople to pay attention, and to DO something about all that patients have lost and will continue to lose until there is a cure.

Would you like to help? Join me at the Virtual Lobby Day and write to your own representatives. Or donate to support the work of the CFIDS Association on behalf of the million-plus people like me.

CFS Tuesday

Part of our ongoing series about life with CFS

Living with CFS means missing out. The diagnostic criteria for CFS requires that the fatigue "results in substantial reduction in previous levels of occupational, educational, social, or personal activities." That cold, clinical description cannot convey what this means in real life.

I missed the weddings of two former roommates. I missed my cousin's graduation. A good friend's baby shower. Countless parties for birthdays, First Communions, and house warmings. And I've missed an unknown number of casual dinners and gatherings with friends and family.

In a few weeks, I will miss an important business event for my husband's company. I considered accompanying him to Los Angeles. I didn't care about the crash I knew would follow. No, I decided not to go so that my husband would not be distracted by worrying about me. As my primary caretaker, he is always aware of my physical state. Do I need to sit, lie down, go home, take medication? Have I eaten enough, slept enough? If I were to go with him to LA, he would spend the whole time torn between taking care of me and taking care of his business. I can't put him in that position.

So once more, I will miss out. Family and friends do their thing, and out of necessity I am left behind. I've grown more accustomed to the feeling. I don't get too angry about this anymore. Now I feel sad acceptance of my situation. I cannot go, but others should not suffer because of it. This is just the way it is.

Noricum proposed the Swatchy project as a partial solution to my missing out. Now, at least, I send my Swatchys out into the world to take my place. It works! Through Swatchy, I feel more connected to all the events that I must miss. It doesn't erase the pain, but does make it easier to bear.

CFS Tuesday

Our ongoing series about life with CFS

CFS changes everything. It's a cliche that doesn't really help you grasp how having Chronic Fatigue Syndrome forces a person to see even the smallest activity in a new way.

I've been working with a physical therapist for over a year. This week, we added walking to my home program. Sounds great? It is; I am very excited. But let me put this in perspective. The physical therapist has prescribed four minutes of walking every other day. I have to take my blood pressure (because people with CFS frequently suffer sudden drops in BP) and rate my fatigue/pain before and after the walking. My husband has to walk this four minutes with me to make sure I am able to make it back to the house.

We see this as a tremendous accomplishment.

Do you understand what I'm saying? Walking for a total of four minutes - every other day - is a huge accomplishment.

Perspective? The day before I fell ill in 1994, I was at the gym at 5 am. I walked for almost an hour on a treadmill set at a medium incline. Then I got ready for work, walked to work, and worked all day. And still had energy at the end of the day. Walking used to be my preferred way of getting around the city. Hiking was my favorite sport. Three months before I got sick, I had gone on a camping trip in the Pacific Northwest, and hiked at least 2 miles a day for 10 days.

Don't get me wrong. I am incredibly grateful that I have now progressed to the point of attempting this walking program. But this is what I mean when I say CFS changes everything. The simple act of walking is now a battleground where I fight for every step.

CFS Tuesday

(our ongoing series about life with CFS)

Yes, it's Wednesday. I just realized that I completely forgot about CFS Tuesday. Let's talk about why, because it is an interesting look at life with CFS.

My brother is on the staff of Virginia Tech. Thankfully, he was not injured in the shootings on Monday. Thankfully, he has a cell phone so my parents and I were able to speak to him very soon after the shootings. However, I spent most of Monday glued to the television. Even though my brother is ok, I am still very upset by these shootings. I am spending a lot time thinking about the VT community. The campus is beautiful, and it is hard to imagine what it is like now.

So Monday was a high stress day. And CFS and stress do not mix. Stress is a guaranteed path to exacerbation of all symptoms. By Monday evening, I was physically and emotionally exhausted. My pain escalated; my sore throat resurfaced. An upper respiratory virus that I thought I had recovered from came back with a vengeance.

Tuesday passed in a blur. I spent the day in bed, only coming downstairs for dinner and a little television. I slept a fair amount, and my throat has become very painful. My tonsils are red and swollen, and my congestion has increased. I'm hitting it with all the OTC drugs I can, and monitoring my temperature for any sign of fever.

Now on Wednesday morning, I'm wondering what happened to the week. I forgot about CFS Tuesday, and maybe half a dozen other things. I lost last week to the respiratory virus, and now I've lost a few more days. This week illustrates one of the challenges of life with CFS. A deviation from the norm, and unexpected stress, has consequences for days afterwards. I can't work a little harder to catch up. I still only get two hours or less a day of functionality. Navigating the uneven waters of life is tricky when it is so difficult to keep yourself on even keel.