What Happened?

So much for my little pep talk yesterday about being flexible and going with the flow. Anytime you have the audacity to think you've figured CFIDS out, it pulls the rug out from under you again to remind you who's really in charge.

Ken and I did enjoy a nice dinner at our favorite local brew pub. The food was delicious, and I even had a tiny 2 oz. sample-sized pale ale to satisfy my love of microbrews. We were driving to the bookstore after dinner, to shop for our son's upcoming 12th birthday, when I was suddenly overcome by severe abdominal cramps. Within 30 minutes, I went from feeling fine to feeling horrible, knowing I had to get home NOW.

Despite the fact that I'm in the middle of a 90-day pack of birth control pills, my body was rebelling with painful cramping and bleeding. This has never happened to me before - another first for this crazy disease that wreaks havoc with your hormones, as well as all your other bodily systems. I drove home as quickly as I could and collapsed onto the couch, exhausted and achy.

I slept for 10 hours last night but woke up feeling completely exhausted. My limbs felt like they were filled with wet cement, and I couldn't seem to keep my eyelids open. I finally gave up and burrowed back into my pillow, unable to sleep anymore but also unable to get up. A t-shirt logo kept running through my head: "Some days it's not even worth chewing through the restraints." I've always found it amusing before, but today it just felt accurate.

I did eventually get out of bed, and breakfast helped a little, but I felt as if I'd been awake for 2 days, instead of 2 hours. I gave into the exhaustion and gave up my plans for the day - what else can you do?

I felt much better after my nap and even managed to grab a few things at the grocery store (although an unexpected wait at the seafood counter almost did me in again). Whew.

I have no idea what could have sparked this peculiar crash. In fact, yesterday was the most restful, stress-free day I'd had in months!

The Afternoon Slump

No matter how good I may feel when I start the day (and I am fortunate enough to have a fair share of "good days" now), I always feel crappy in the afternoon. This daily slump is really getting old. I have this pocket of useless time every single day. I've often wondered whether other people with CFIDS have similar daily energy cycles, and if there's anything I can do about it.

I learned long ago that I can best manage to live my life with CFIDS if I stick to a predictable routine. My doctor told me this when I was first diagnosed, and, much to my frustration, I've found she was absolutely right. Spontaneity became a thing of the past.

My routine is all about rest. I know that I need a good 9 hours of sleep at night to feel decent the next day. I have also learned that those lazy weekend mornings in bed that I enjoyed pre-illness (and pre-children!) won't work anymore. I have to get to sleep early each night because I wake up at the first sign of morning light. My husband, Ken, complains about the cave-like quality of our bedroom. My only hope of sleeping to 7:30 or 8:00 am is to obsessively shut out all light. We have room-darkening shades, and I even have to close the doors to the hall and the bathroom.

Even if I wake up from "the cave" feeling great, by early afternoon I'm ready to lie down again. I take a nap every day. When I first got sick, I avoided mid-day resting unless I felt really bad, but I soon learned that by the time I feel bad, it's too late to stop the freight-train of a crash. The power of preventative rest in CFIDS is amazing. Taking that daily nap allows me to feel good through the evening, so I can enjoy some time with Ken and the kids and even stay up until 10 pm (ooh!).

Even though I feel much better with my nap than without it, I often wake up feeling rotten. My mouth is dry, my legs ache, and I have no energy. I end up having to go lie down on the couch to rest from my nap!

The really stupid part is that I still sometimes try to make plans for my afternoons. Today, in a fit of feeling good and having the freedom to do anything I wanted, I looked through my favorite cooking magazines this morning and made all sorts of plans for delicious dinners to make for Ken and I this week (stuff the kids would never eat!). I figured I'd run to the grocery store after my nap. Duh! Now the store (and the dinner) will have to wait until tomorrow.

Oh, well. Besides routine, the next most important part of managing CFIDS is flexibility. So, I called my husband at work and made plans to meet him for dinner at a favorite restaurant. I should feel well enough by then to manage it, and I can hit the grocery store tomorrow (in the morning!). Hey, wait a minute...this is spontaneous, isn't it? You just gotta go with the flow.

Shhh...What's That Sound?

It's silence - something that's been in short supply since summer started. I drove my two sons to my mother's house in Connecticut yesterday and just returned this afternoon (the three-hour drive now requires a significant rest period before attempting the return trip). The boys will spend the next six days on a sailboat with their Gramie and Pop Pop - pretty much a perfect week for them.

I know that I'll miss them (I already do miss their hugs and sweet affection), but right now I'm relishing the solitude. Our sons bring incredible joy to my life, and I sincerely enjoy spending time with them, taking walks, playing games, cuddling together for movies. Kids are also a huge responsibility, though, and it is such a huge relief to me today to be responsible for no one but myself. What a strange feeling!

When I got home, I reheated left-overs for myself for lunch - no special requests, no extra work, no pile of dirty dishes. Then I took a long nap, without worrying about what time I got up or what was going on while I slept.

My husband just got home from work, and we're really looking forward to some quiet time alone together. We can eat whatever we want, talk about whatever we want, and even watch a movie together before 9 pm! OK, maybe it's not the wild partying of our younger (and healthier) days, but this is exciting for us.

Best of all, there is no background noise of non-stop quotes from Spongebob Squarepants and pretend pirate battles. We will dine this evening without once saying, "Boys, stop repeating that!" Ah, this is living.

Remember Who's Boss

The Boss? CFIDS, of course. I feel strongly about being myself and living my life, but I've learned again and again that I must stay within the limits defined by this disease or I'll end up unable to do anything at all. It's ironic, really. The only way to maintain any degree of freedom in your life with CFIDS is to live in a very careful way, always being ultra-aware of symptoms, activity level, and limits.

I got cocky this week and forgot that basic lesson. My energy and stamina have seemed a bit improved the last month or so, and I let down my guard, allowed myself to be less vigilant.

I've been running around like mad all week - grocery shopping, kids' orthodontic appointments, bank, post office, etc. I've also been cooking (and cleaning up) three meals every day. Even breakfast and lunch have been more elaborate than usual, as I've been trying to make some special things to help Jamie get through his two-week trial without dairy. It all caught up with me yesterday, but, even then, I ignored the signs (mild sore throat, exhaustion, sleep problems) and kept going.

By bedtime last night, I realized I had pushed too far, and this morning, I made sure to pay close attention to how I felt, instead of ignoring it. I'm trying to keep a positive attitude. Today is a day off. No to-do list. No errands. OK, I did make French Toast for the kids and their friend who slept over, but I've spent the rest of the morning propped back in the recliner, reading the paper, using the laptop (a bit), and even zoning out with a little TV (Food Network - yum!).

Sometimes, you have to get back to basics...rest, feet up, lots of fluids. My boys will be pooped out from their sleep-over, so we'll all take naps this afternoon and take it easy. Slow and easy.

Summertime...and the Living is Easy

Well, it's mostly easy. It's very nice not to worry about school schedules, homework, sports practices, etc. I wasn't feeling too well this afternoon (went to dinner with friends last night), and it's great to be able to just take it easy when I need to.

True, I don't get much accomplished with my two boys around all the time, but when I can arrange for friends to come over, they're all old enough to keep themselves occupied. Right now, there are three muddy, sweaty boys in our basement, playing a board game and sucking on popsicles. They spent two hours out in the woods behind our house, playing in the stream, climbing on rocks, and swinging on vines. Great summer stuff!

They should cool off quickly down in the basement, where the temperature is cold enough for polar bears. That's the part I hate about Delaware summers - the heat and humidity. We had an unusually mild week last week, but now we're back to 90 degrees and humid. I grew up further north (Rochester, NY) where summer temperatures usually stayed in the 80's, with nice, cool nights, and I have never adjusted to the more southern heat and humidity, despite several years in New Orleans.

It's worse now, with CFIDS. My whole body temperature seems to have risen in the past couple of years. I used to be the cold one in the house, always piling on the blankets and sneaking to the thermostat to turn the temperature higher. Not anymore. I have a closet full of warm sweaters that didn't get worn at all this winter and rarely pull more than a sheet over me at night, even with our air conditioning on. It's crazy! Even though I need it more, I still don't like to live in air conditioning. I'm a fresh air girl. So, you can see, I'm kind of stuck here. I'm out on our shaded porch for now but will soon have to escape back to the A/C.

All of that seems like silly complaining, though, considering how well this summer is going. Ken and I are incredibly grateful that both of our boys are feeling so good and are able to enjoy their summer. These classic summer days of playing outside with friends seemed like an impossible dream six months ago. So, I guess the living is easy....

I'm Back!

Jamie and I on top of the world in Shenendoah National Park

We returned from our vacation this week (you can see pictures at our vacation blog). It was a wonderful trip, one of my best since getting CFIDS. I felt relatively well most of the time and had no major crashes. Hurray! Road trips actually work out very well for us. Even if I've been pretty active, I'm guaranteed plenty of time off my feet every day in the car, and even the boys will take naps every day while we're driving.

Best of all, both of our boys are doing well. Without the mental exertion of school, both of them have plenty of physical stamina. So far, they've been able to do whatever they want this summer. Today they're running around outside with their friends, playing tag. We are incredibly grateful for such normal kid moments. It's a big relief after some of the difficult times they've been through. Thank goodness for Florinef!

Jamie, our 11-year old, has decided to try another dairy-free test. Although he's been great overall, his GI symptoms have gotten worse. It's finally bad enough that he's prepared to try going without his precious milk and ice cream, at least for a little while. I don't know if this will help him, but giving up dairy greatly improved - almost eliminated - my own GI symptoms, so we'll see what happens.

We had a wonderful vacation, but it's also nice to be home again.

Digging for diamonds in Arkansas

Back on My Feet

Wow, that was one heckuva crash this time. I was pretty much bed-ridden for a full week. I'm finally feeling better and back on my feet...just in time for our vacation! We're heading out on our annual summer road trip, driving to Oklahoma to visit my husband's family. We're taking our camper along and making lots of fun stops along the way. We can't wait! Now we just need to finish getting packed...

I'll resume writing when we return.

CRASH

I've been severely crashed all week. I almost feel like Rip Van Winkle, except that I haven't woken up completely yet.

This week was supposed to be busy and fun - the last week of school, time to welcome summer. I have a long list of things I wanted to do to get ready for our vacation next week, get gifts together for Father's Day, and wrap up the school year. Instead, I've been in bed for days. I don't feel much better today, but I couldn't stand it anymore. I took a shower and am attempting to tap out a short blog on my laptop.

How can the CDC use words like Fatigue and (my favorite) Malaise to describe this complete debilitation? When it gets this bad, I am a prisoner of my body. I am too weak to walk, sitting up makes me sicker, and my throat hurts horribly. All those medicines and supplements I take seem to do nothing when I crash. I really hate this helpless feeling. Nothing to do but lie down, rest, and wait.

I've reached the end of my tiny bit of stamina. Time to close the laptop and lie down flat again. I just keep reminding myself that it will lift soon.

Exciting New Viral Evidence

It just makes my day to check my e-mail and find exciting new breakthroughs in CFIDS research!

They've identified a new virus that may be behind CFS. As a bonus, they think it's also the cause of MS, so CFS is linked to a "real", well-known disease in the news report.

Check it out:

Potential Animal (Zoonotic) Virus Identified in Patients with Chronic Fatigue Syndrome, Multiple Sclerosis and Epilepsy

How Much Do You Tell?

Living with CFIDS, I frequently wonder who I should tell about our illnesses and how much I should say. There's a careful balance between telling the right people enough information so they'll understand what they need to without overwhelming them.

We had a wonderful treat this weekend when my closest childhood friend, Michelle, came to visit us from Ohio with her family. Michelle and I met when I was five years old and she was four, and we were inseparable all through our childhood and teens, even after her family moved out of our neighborhood. We've kept in touch as adults but only get to see each other about once a year, so we thoroughly enjoyed this weekend. Our kids had a blast together, and Ken and I had a great time talking and laughing with Michelle and her husband, Tom.

At one point, though, I began to worry that we were sharing too much about the challenges of our illnesses. That may sound silly since they're good friends and we talked in-depth about a lot of things, but I didn't want to bore them with details of our school battles or alienate them or make them feel sorry for us. A bit of empathy and understanding is always nice, but sometimes I see a look of pity in someone's eyes, and I know I've said too much. I guess there's also an underlying fear that if I talk about illness too much to my friends, I'll scare them away. It's not just paranoia; I did lose some friends when I first became ill.

On the other side of the coin, I was talking to the mom of one of Jamie's best friends yesterday at our local pool. I mentioned that Jamie was attending all 5 of his classes these last two weeks of school and was feeling really well lately. She said that she never realized he had an illness until recently. Jamie and Craig play with her son all the time, and I thought I had filled his parents in on Jamie's limitations from that very first sleep-over. I guess I didn't.

Certainly, I need to provide some information to parents of Jamie's friends if he's going to be at their houses, but how do you know how much to share? At our Mardi Gras party this winter, a friend asked how Jamie was doing, and I was happily sharing the news of his improvement on Florinef when I realized that some of our friends were listening with a look of mixed horror and pity. I thought it was great news that he could now attend three classes a day, but these other parents were obviously distressed to hear of the extent of his debilitation compared to their normal, healthy kids. And these were close friends.

Even harder, how much do you tell acquaintances? The parent of a not-so-close friend who's invited Jamie over to play, the members of my book club when I bring my own foot rest and have to leave our meetings early, other parents at school who look at me funny when I have to sit or put my feet up while they're rushing around helping, the kind neighbor who asks how I've been...what do you say?

Part of this conflict is also due to my fervent desire to help educate the general public about our often-misunderstood disease. I want people to understand that CFS is not some silly designation for wimpy people who feel a little tired, that it is a serious and debilitating illness that deserves serious research funding and respect from the medical community. The need to educate feels especially urgent when people say things like, "But you look great!" or "He always seems to have so much energy." I feel compelled to explain these seeming paradoxes and to tell skeptical doubters what our bad days are like.

So, I'm constantly trying to balance my need to explain and to educate against the fear that I'll drive away those closest to me. How much do you tell?

More School Woes

Once again, the staff at my son's middle school have brought me to tears.

Jamie's homebound tutor (who handles two of his classes at home for him) thought that Jamie could handle attending all 5 classes for these last two weeks of school, and I agreed. He'd be able to participate in all of the end-of-year review and be better prepared for final exams, plus he'd be there for the fun stuff at the end. I talked to the coordinator at the school, and she said OK. So, I thought it was no big deal (I should have learned by now that everything at this school is a big deal). I sent an e-mail to the two teachers involved, just to let them know that Jamie would be back in class for the last two weeks. The coordinator at school responded to me in a scathing tone that she was "shocked" that I would send a "directive" to the teachers, blah, blah, blah.

It's been like this all year. I'm so sick of being constantly attacked and misunderstood. Every little aspect of Jamie's schooling has been blown into huge conflicts since the start of the school year. It's exhausting. In fact, all this conflict and stress has been the source of several severe crashes for me this year.

My husband and I are nice people. Our boys are kind and courteous and are both excellent students. We're only trying to do what's best for our son, trying to understand the proper processes, just trying to get through the year. It's horrifying for me to think that some of these teachers and staff members obviously perceive me as an overbearing, meddling parent. I try to be a good person, and I want other people to like me (perhaps one of my downfalls!). I hate all this conflict.

Our experience at our son's elementary school last year was just the opposite. Led by an intelligent and compassionate principal, the entire staff approached Jamie's illness in a friendly, cooperative way - just as we approached them. We've been continually stunned by the middle school's adversarial approach this year and blind-sided by every battle.

I'm sick of battles. I'm sick of constantly having to defend myself and to fight for what's right for our son. I just want to throw up my hands and say, "OK, you've won! Do whatever you want."

It seems so unfair that we should have to deal with all of this, in addition to dealing with a seriously ill child. I guess it's similar to some of the battles with medical people and disability services that I've heard from other people with CFIDS.

These Are a Few of My Favorite Things

Last week when I was severely crashed, I managed to keep my spirits up most of the time with an attitude of "this will pass," but by the end of the week, when I felt worse instead of better, I slid into the quicksand of self-pity and mourning that so often accompanies chronic illness. I found myself thinking too much about all the things I can no longer do, all the limitations in my life, all the can'ts.

Back to normal (for me anyway) this week, my spirits are revived, and I'm trying to focus more on the things I can still do. Here are some of the things that bring me joy and make me feel good:

1. Being outside, especially in the sunshine
2. Camping
3. Taking a walk - something I used to take for granted that I now relish on my better days
4. Spending time with my niece and my new nephew (holding a baby can cheer me up no matter how low I'm feeling)
5. Losing myself in a really good book
6. Watching a funny, uplifting movie (some of my favorites are Elizabethtown, Love Actually, and As Good As It Gets)
7. Listening to favorite music
8. Laughing with my husband
9. Going on road trips with my husband and kids, cocooned in our car and our camper and living at our own pace
10. Talking and laughing with good friends
    
11. Being at the beach - I love the salt air, the wind, the sound of the waves
12. Hiking - our hikes are shorter than the old days, but I'm grateful I can still enjoy the outdoors with my family
13. Playing games with family and friends
14. Writing, when I'm "in the zone" and the words just flow
15. Re-telling old stories with my family and laughing so hard we can hardly catch our breath
16. A quiet, clean, uncluttered house
17. Anything with my two sons (even though this one directly contradicts the last one). Just being with them makes me feel good.
    

I'll look at this list the next time I'm feeling bad to remind myself of all the joy in my life!

Out of the Abyss - Again

I feel as if I've just woken up from a week-long coma. I haven't felt good in several weeks, but I was coping. Then, last Monday I went into a severe crash - one of my worst ever - that lasted a full week. I spent most of the week in bed, too sick to even read or watch tv.

I feel the need to document this lost week, so I won't forget what it's like and what I'm fighting against. I also want to remember how much other people with CFIDS are suffering. Whenever I crash badly like this, I think constantly about all of the people who feel that bad every day. I know I am lucky to have periods where I can still function, even if it's only 60% of how I used to function. I am appalled and amazed at the thought of so many people, all over the world, who cope every day with the kind of debilitation I experienced last week, being housebound or bedridden and feeling unable to escape.

My one week seemed unending. We spent the weekend at my Mom's house in Connecticut, along with my sister and her family, to celebrate Mother's Day. I was struggling to get through the weekend, but by Saturday night, I hit rock bottom.

I hurt all over, felt exhausted but couldn't sleep, and no longer had the strength to keep my spirits up. I crawled into bed and sobbed. After a week of suffering, with no end in sight, my mind was in a near-panic state, all optimism forgotten. Terrified thoughts bounced around in my head: "I can't take it anymore. Nothing can help me. I just want to escape." I stumbled into the room where my boys were sleeping, to remind myself of what I was living for, what I was fighting for. I said a silent prayer that it was me suffering so much this time and not either of them. Desperate for any comfort, I gently removed one of their many stuffed animals from the bed. I went back to my own bed and resumed my tossing and turning, clutching the tiny beanbag dog like a life raft. Benadryl and Ambien finally won out over my pain, but I felt as if I was only half-asleep all night. My body hurt wherever it touched the mattress, so I was constantly moving around to try to get comfortable. I awoke in the morning no better, still in a fog of pain and exhaustion, still feeling as if I could not live with this illness a moment longer.

By the time we got home last night, I felt good - not just better, but really good for the first time in weeks. It was like being reborn. I felt like myself again.

What makes this crazy illness turn itself on and off? It's maddening to have no control, to be so helpless. During my crash, I tried everything to make myself feel better. Meditation, gentle yoga, lots of rest, extra supplements - all of these things will normally help me. None of them are miracle cures but each thing helps a little bit. Not last week. Nothing I did made any difference at all. It didn't matter how much I rested, I always woke feeling even worse. Maybe this crash was triggered by allergies (my eyes hurt horribly last week), maybe a virus made my immune system go into overdrive, maybe all the storms last week affected me. What does it matter if there's nothing I can do about it?

As important as remembering the extent of my suffering, I also want to remember what it feels like when it ends. I was elated last night by the simple, normal feeling of having energy - just normal energy like most people have every day. I could sit up, I could take care of my kids, I could sleep without heavy sedation. What a gift!! I am so thankful today to feel "CFIDS-normal" that just writing about it brings tears to my eyes.

To all those people out there who suffer so much every day, my thoughts are with you. I admire your courage and will do all I can to help move research forward for myself, my children, and everyone else suffering from this horrible disease.

We Are Here, We Are Here! *

(* Dr. Seuss in Horton Hears a Who)

Just like those tiny Whos living on the dust speck in Horton Hears a Who, all of us with CFIDS must speak up and let our voices be heard by those who have the power to save us.

Today in the U.S. is the 14th Annual CFIDS Association Lobby Day, when 90 participants are visiting members of Congress to ask for increased funding for CFIDS research. I had planned to join them but had to cancel when I realized I wasn't well enough to manage the short trip to Washington. Friday is International CFIDS/ME Awareness Day.

I am severely crashed today. I've spent all day in bed, which is very unusual for me. I am in the process of using up every precious drop of energy I have today so that my voice will be heard, even though I couldn't make it to Washington.

My health and my life - and the lives of my children - are at stake. I work very hard to accept my life of limitations and make the best of it, but I desperately want to get better and want my boys to be able to live normal, healthy lives. Nothing will happen without more money for research and more attention from the government.

Go to www.cfids.org and click on the Grassroots Action Center to send letters to Congress and others with the power to change our lives. It's automated and only takes a few moments. I took a few extra minutes to add a couple of paragraphs about the impact of CFIDS on our own lives.

Go do it now. If you live outside of the US, take 10 minutes to write a letter to the editor of your local newspaper about ME/CFIDS Awareness Day.

Our representatives need to know that those 90 people at Lobby Day today each represent another 10,000 of us with CFIDS who couldn't be there.

We are here!

Yearning to Be Normal

" My body is suffering, my mind is sometimes neurotic, but my soul is at peace."
- Dr. Dan Gottlieb, on Fresh Air with Terry Gross

This statement caught my attention today as I scanned through radio stations during my 10-minute drive to pick Jamie up from school. Dan Gottlieb is a psychologist who hosts a radio program, Voices in the Family, on our local NPR station. I've heard his show once or twice, enough to recognize his voice, though my husband and I always joke that his show is sort of depressing, as in, "Let's talk about pain and suffering."

Today, NPR was replaying an interview of him by Terry Gross, host of a really great interview show called Fresh Air, and I learned something surprising. It turns out that Dr. Gottlieb is/was a quadriplegic, injured in a car accident twenty years ago (he's now partially recovered but still in a wheelchair). He's just written a book, Letters to Sam, imparting life lessons about being different to his grandson who suffers from autism.

I just loved his statement about his body hurting but his soul at peace. That's what I aspire to achieve (well, I'd love to skip the body suffering part, but you can't have everything). Plus, there's nothing like hearing about someone worse off than you to shake yourself out of any thoughts of self-pity. He was a quadriplegic and is now in a wheelchair...and I think my life is filled with limits??

Terry asked if he ever just falls apart, since he always seems so together. He said that one day when he was driving his specially-adapted van, he passed a guy jogging along the side of the road, and he just burst into tears and had to pull over. It was an every-day sort of thing to see, but it just hit him a certain way.

I don't for a moment think that living with CFIDS is on a par with life as a quadriplegic, but I've had those moments, too. In fact, seeing someone running can hit me hard, too. I mean, I could run, but I'd suffer for it for many days. I try so hard to just keep living my life, focusing on what I can do, and finding joy in everyday stuff, but sometimes the yearning to be normal can hit you like a punch in the gut.

More of the Same

Wow, it's been a week since I've written here. That's unusual for me; I am usually brimming with thoughts and words. I guess my silence has been due to a feeling that there's nothing new, just the same old routine. I haven't felt inspired to write about it and certainly doubt that anyone would want to read about it.

It's been a relatively rough week physically. I had a few days of being severely crashed,unable to do much of anything, and the rest has just been feeling not-so-good. Who knows why this time? The weather? Allergies? Lingering effects of my over-activity last week? I'm bored with trying to figure it out yet again.

Emotionally, my impatience with the same old stuff has been punctuated by flares of stress. Even that is the same old routine, though - mostly school issues, worrying about another round of standardized testing next week, frustrated by my unreturned calls, another round of calls and concern from my younger son's principal over his excessive absences.

That's probably the source of much of my stress (and probably the long crash, too). We have been focused on our younger son, who missed another couple of days of school this week. We thought last Friday that he might have strep throat or an ear infection (i.e. something normal and treatable), but the doctor told us the same old story: he feels feverish but he doesn't have much of a fever, his throat hurts horribly but it doesn't look too bad, no sign of an infection or other reason for his feeling so horrible. Sound familiar? It was clearly a crash brought on by last week's over-ambitious activities.

We did get some hopeful news. I explained Craig's situation to Dr. Rowe, the pioneering doctor at Johns Hopkins who first identified Orthostatic Intolerance in people with CFIDS. As in the past, he responded quickly and thoroughly to my e-mail. He thinks Craig's chest pains are related to OI and that treatment might help. So, the bad news is that it's probably time to get Craig officially diagnosed (at least with OI), but the good news is that we may be able to help him feel better. Who knows - maybe early treatment of the OI will prevent or slow the typical downward spiral of dysfunctional systems in CFIDS.

I'm very grateful that tomorrow is Friday, and this same old week is almost over. I'm ready to start fresh and feel better.

Oh, but we do have fun!

Yes, that's me, my youngest son, Craig, and my husband, Ken, wearing togas. The last few days have been hectic and crazy but lots of fun. It's been one of those weeks filled with school projects and functions, requiring non-stop activity. And, yes, I'm crashed today, but it was worth it. The kids had a blast, and so did we.

On Tuesday, we kicked off our odyssey with the usual school-day stuff, plus an orthodontist appointment, my Mom arriving on the train, and Craig's spring concert at the elementary school. But the real scramble came on Wednesday.

It was Greco-Roman Night at Jamie's middle school. The 6th graders had to make a recipe from Ancient Greece or Rome and bring it to school to sell in a bazaar-like atmosphere to raise money for an end-of-year activity. Jamie and his best friend, James, chose Shrimp in a Honey Glace (which I encouraged due to its quick preparation!) and also sold iced mint tea.

Now, we're not ones to do things half-way, so when the instructions said to wear a costume, we of course assumed it applied to the entire family. My Mom and I spent the day figuring out how to fashion togas from fabric we bought on the $1 table at the fabric store. Ken picked Craig up from soccer practice, stopped at home long enough for me to wrap them up, and the five of us headed to the school.

Would you believe we were the only adults, among the families of 300 students, who dressed up? You might think we'd be embarrassed, but we got into the spirit of the evening and had a great time.

So, today it's payback time. The middle school gathering had all of the characteristics that someone with CFIDS fears most: big crowd, warm room, lots of noise & chaos, and a full hour of standing with no chairs available. I had pulled through the previous days' high activity by shutting myself in my dark room several times a day to nap or meditate, and I made it through Greco-Roman Night. By 9 pm, though, I was in bad shape. I had so much pain in my legs and back that I thought I'd never fall asleep (thank you, Ambien!).

I'm in recovery mode today, not trying to accomplish anything and lying down as much as possible. All things considered, I'm not doing too badly. And we have more happy, laugh-filled memories to add to our family album.

A Life of Contentment, with Pockets of Despair

I have always loved my life. Perhaps that sounds like hyperbole, but it's not. At every stage of my life, I have thought that my life was pretty much perfect. I have always felt fortunate and blessed. Oh, sure, I had problems, just like anyone - the usual high school angst, nasty break-ups with boyfriends, overwhelming times at work, difficult colleagues - but these always seemed like minor detours in an otherwise happy journey.

There have been times throughout my life when I have felt so utterly content that it almost scared me. I felt so fortunate, so blessed by my perfect life that I would occasionally think that it couldn't last. A person couldn't possibly have such a happy life without some kind of major challenge cropping up. I mostly felt content and satisifed, but there was a tiny part of me that was waiting for the other shoe to drop.

And then, of course, it did. On March 2, 2002, I suddenly became ill with the "flu" that never goes away. It would be a full year before I was diagnosed and understood that I now had a truly chronic illness, with no known cure. Like so many other people with CFIDS, my life now seemed neatly divided into "before" and "after." I dealt with some serious depression in those first two years, something that stunned me. I had rarely even felt unhappy before, so I was completely unprepared for the dark curtain of despair that seemed to be taking over my life.

Those days are thankfully behind me, but I am still sometimes ambushed by small pockets of despair. I am mostly still content with my life, perhaps even more aware of and grateful for my blessings. I often tell my husband that, despite the challenges we're now living with, I still love my life. I still feel blessed by him and our boys and still find joy in every day.

Sometimes, though, like last night, my symptoms worsen and my contentment is drowned by a wave of despair. I think that I can't live with this illness any longer, that I can't possibly go on coping with the battle inherent in every moment of every day, that it's just too much. I sob for all that I've lost and for the unfairness of it all.

That overwhelming darkness always passes, usually fairly quickly, but those feelings remain as a black spot on my otherwise happy life, never far from my consciousness. I've come to realize that my life has never really been perfect. My contentment is more the result of my outlook rather than some unusually good fortune. I can still carry that optimism and joy with me now, even in the shadow of this never-ending disease. The battle is not only in my body, but in my mind, as I struggle against feelings of self-pity and helplessness and try to hold tight to my life of joy and contentment.

Great Expectations

Well, it's Friday, and once again, I've accomplished nothing that I set out to do this week! I'd like to blame this problem on CFIDS, but the truth is that I've been over-estimating my capabilities since the days when I had boundless energy (and still couldn't get "everything" done). I've tried hard to scale back my expectations now, but I'm still planning far more than I am capable of and coming up disappointed.

Here's the list of what I thought we might do during this Spring Break week (keeping in mind that we returned from out of town on Monday night). Seriously, I really wrote these things down last week:

• Help Craig with Market Day project for school
• Help Jamie get ready for Greco-Roman Night project
• Go to craft store for supplies
• Get boys new shoes
• Take boys to Target
• Go bowling (we got a free coupon in the mail)
• Paint dining room?

Guess what? We didn't do a single thing on this list!! The only evidence of a touch of sanity in this list is the question mark about painting the dining room (since we've only managed to paint 3 rooms in our 11 years in this house). And we will still have to tackle those school projects this weekend.

Looking on the positive side, here are the things we actually did do this week:

• Unpack & do laundry from trip
• Buy groceries
• Go to library for books & DVDs
• Take old books to used bookstore (including a full shopping bag that had been sitting in our office for over 5 years!), with plenty of time for browsing and using our ample credits
  
• Watch "The Sound of Music"
• Go to a baseball game
• Make meals & do dishes, ad infinitum

Plus, I rested a lot, and my boys spent several days playing with their friends in the woods behind our house. All in all, a pretty nice week. I don't know if I'll ever get the hang of accurately planning my time, but at least we always seem to have fun!

A Preview of Summer

It's Spring Break week here, and I'm getting a preview of what summer will be like, with my boys out of school and a string of warm, sunny days.

The absence of schedules and timetables has been wonderfully freeing. I've been sleeping as late as I need to in the morning, without worrying about making lunches or scurrying for the bus. I certainly haven't missed my several trips a day to middle school to try to keep up with Jamie's rotating schedule, get him to every class he's able to attend, and squeezing in home tutor time in between. We're all enjoying the break from hectic evenings of homework and strict bedtimes.

So, it's been nice in many ways, and I'm counting the days until June! But, as always, the specter of CFIDS is there to remind me of all that I can't do. I'm remembering how exhausting it is for me to have the boys around all day. Even with Jamie's crazy half-day schedule and Craig's frequent absences this year, I can still count on some quiet time to myself most days. It took me three days and three tries just to write and post yesterday's blog!

I'm frustrated by my limitations. I want to enjoy my boys' company, take them places, do things, just be a regular Mom. Instead, my body constantly reminds me of my illness by striking me down after any period of freedom and fun. I crashed after an ordinary day at home on Tuesday, just from being on my feet too much - cooking, doing dishes, running errands.

I took it easier on Wednesday so I could manage taking my kids to a baseball game in the evening (my husband had to go out of town again). My strategy worked,and I handled the outing to the game just fine. In fact, we had a great time, the kids ate their way through 9 innings, and our home team won. Then we came home and I put them to bed and reality set in. I was suddenly aware of excruciating pain in my legs and feet and an overwhelming exhaustion coupled with a strange kind of nervous energy. I woke up in the middle of the night in terrible pain and had to limp to the bathroom to re-medicate myself. Today, I managed to send the boys to a friend's house for the day, while I lie in the quiet house and try to recover.

On the plus side, the boys seem to be handling the heavy activity this week quite well, giving me some optimism that they'll be able to have a good summer. I guess I'll just have to get better at "staying within my energy envelope," something I seem to find just as hard to do today as four years ago, when I first became sick. Time to go pick up the kids.

Home for the Holidays

We spent the Easter weekend in Rochester, NY, (where I grew up) visiting my family. It went as these trips always do, starting out enjoyable and ending with a crash.

I actually enjoy the 8-hour drive there and back, as does the rest of my family. We listen to favorite music and audio books, munch on snacks, and take naps. Even my husband, who does all the driving on family trips, enjoys the ease and solitude of the four of us together in our cozy truck.

So, I felt good, really good, when we arrived Friday evening. We met my family for dinner. It was lots of fun, I was glad to see everyone, and I wasn't even too upset about having to avoid dairy and alcohol in an otherwise delicious meal.

Saturday was a little rougher but still nice. I woke up feeling exhausted (I sleep so poorly when I'm away from home, like a little old lady), and I was back in bed by 10 am. That helped, though, and we enjoyed spending the day with my dad and his wife and my aunt and uncle. We took a nice walk in the park, enjoyed the beautiful day, and had another delicious meal at my aunt's house. Despite it being a 2-nap day, it turned out pretty good.

I crashed on Sunday, predictably, I suppose, after climbing hills in the park with the boys the day before. I also made the mistake of going to church. I thought it would be nice to join my family for Easter Sunday service and hear my little cousins sing in the choir. And it was nice, but the hour and a half of standing (always a killer) and sitting up knocked me out. This time, a nap didn't do much to revive me.

I spent most of the time at our family dinner lying down in a quiet room alone. My throat hurt, my legs ached, and I had that all-over flu-like feeling that signals a bad crash. My husband and sons were out in the yard with their cousins, aunt & uncle, and grandparents playing a rousing game of soccer after dinner. I was in the living room, with my feet up, hanging out with the over-80 crowd. Holidays seem to do this to me. It can get a little depressing, although I rebounded the next day, with another 8-hour drive to keep me off my feet. Sometimes I just get so sick of feeling sick so much.

Exercise and CFIDS in the Real World

With the nice spring weather that's recently arrived, I'm inspired to try to increase my stamina a bit. I know I've lost a lot of muscle tone in the past few years, and my exercise capacity is quite low right now. Before CFIDS struck, I exercised hard and loved the feeling of strength and energy it gave me. I want to improve my stamina a bit, so I can hike with my family this spring and summer and enjoy our camping trips and vacations.

Theoretically, it seems simple: walk a short distance each day, gradually increasing, and do very brief sets throughout the day with light weights to try to rebuild some muscle. Unfortunately, this is almost impossible with the constraints of CFIDS in my everyday life. I think I could easily improve my level of conditioning if that was all I had to do each day.

But with CFIDS, every movement, every moment on my feet "counts" as exertion. I can only handle a limited amount of exertion each day, and it's almost always used up by the basic activities necessary to take care of myself and my family.

Taking a shower counts as exertion, doing a load of laundry, making meals - however simple, and doing dishes. Once I've taken care of these basic needs, there's often no capacity left for focused exercise that could help to improve my stamina instead of using it up. On a good day, when I might be able to take a walk or do some easy weight training, I instead need to go to the grocery store or handle other errands while I'm able to.

It's very frustrating. I was determined to start some easy weights today, but here I am with aching knees that signal I've already done too much for today. I guess making breakfast and washing dishes was it. I still need to somehow get through dinner preparation and clean-up this evening, too.

For me, the exercise/exertion intolerance is the worst part of CFIDS. I also believe this is at the heart of this unique illness and that understanding this bizarre phenomenon will ultimately help to unravel its mysteries. For now, though, I sit here in the recliner, with the footrest cranked as high as it will go, and hope that I'll make it through dinner tonight without completely crashing.

Emotional Highs and Lows

We had a short-lived freak snowstorm yesterday. The black sky suddenly filled with fluffy snowflakes that coated the blossoming trees and new daffodils in our yard. This bizarre juxtaposition of winter and spring mirrored the emotional ups and downs of my week.

I started the week filled with energy, a rare condition for me since CFIDS but immediately familiar as "the real me." I felt good and ready to tackle my week on my own while my husband, Ken, was away.

My in-laws called Wednesday evening to tell me that Ken's uncle in South Dakota had died suddenly. After I hung up, grief settled on me like the snow that had covered our flowers earlier. Uncle Myron was a gentle, fun-loving person with a kind heart. We thoroughly enjoyed our visits to South Dakota, sitting on the porch with him and Aunt Betty. I couldn't believe we'd never see him again.

It was even worse on Thursday when I had to tell our kids. We've lost eight people in our families in the past three years, with two very tragic and difficult deaths from cancer in the past year. Our boys have experienced far too much loss and grief for their young years. They were both shocked and distressed at the news of Uncle Myron's death.

Of course, the grief affected me physically as well. In fact, all three of us have felt poorly for the past day or so, with sore throats and heavier-than-normal fatigue. I think the spring allergies are affecting both boys, and I crashed from combined physical and emotional stresses of being alone and absorbing such a loss.

At the same time, I was in the midst of a happy project, putting together a unique box of gifts for my oldest friend's birthday. Michelle turns 40 on Saturday, and we've been close friends since we were five years old. Earlier this week (procrastinating, as usual), I decided to make her a box of memories to ship to her in Ohio.

I had a great time coming up with all sorts of silly remembrances of our many years together - a package of Pixy Stix (I couldn't find wax lips in our local stores!), a Clue game (one of our old favorites), a childhood movie we'd watched together, and other tidbits that reminded me of her. Best of all, I found an old cassette tape in our basement that I had sent to her when I was in sixth grade. My boys and I laughed like crazy at my childish voice reporting all the news from school and home to my best friend. I capped off the package with a homemade poster featuring photos of us, pictures of things we'd shared during our 70's childhood, and captions and phrases sure to bring a smile to her lips.

I had so much fun putting that box together! I know that I ran around too much for a few days, but I was smiling despite my growing symptoms.

The emotional changes this week have made my head spin. Ken is flying to his parents' house in Oklahoma from Texas tonight to accompany them to the funeral service in South Dakota. He won't be home until next Thursday. I'm doing my best to rest and recover, so I can handle another week on my own. At least I feel like I'm contributing a bit; it's very difficult to be so far from family during times like this.

So Much To Do, So Little Energy

Back to reality today. After all my exercise this weekend and the stress of re-entry on Monday, I crashed pretty badly yesterday afternoon. By evening, I was in rough shape, with a sore throat, achy legs - all the usual stuff.

I also had a major orthostatic intolerance (OI) episode. I was just lying on the couch watching TV when I could feel my face redden and flush, and I suddenly felt sicker. Those kinds of episodes are so bizarre! I drank some salt water to try to bring my blood pressure back to normal, but my face was still bright red when I went to bed.

I'm taking it easy today and am doing better this afternoon. While my body is resting, though, my mind is going on high speed. I tried to stay off the computer this morning and lie down. I made list after list on a notepad: writing ideas, book reviews I want to write, new magazines to query, things to get done at home. Now if only I could get some of it done!

On the plus side, my psychologist is fond of telling me that it's a sign of good mental health to want to do so many things. She specializes in chronic illness and has a grown son with CFIDS, so she understands, first-hand, the unique challenges of living with this crazy illness. She says people who are depressed often don't want to do anything, but people with CFIDS or other chronic illnesses usually have long lists of things they want to do, if only they could. Judging by the length of my lists, I must have a very healthy psyche!

So, with all of these projects I want to work on, why am I using up my limited energy on my blog today? Hmmm....good question.

The Great Escape

Our camping weekend was wonderful! Here's our home away from home, our little pop-up camper. We went to French Creek State Park in Pennsylvania and enjoyed the spring weather. We hiked, relaxed, and the boys did a little fishing (as opposed to catching, as my husband Ken said).


I felt really good most of the weekend. Even my allergies quieted down. It's no big mystery, really, just more evidence that stress affects CFIDS more than anything else. When we're camping, we're so relaxed. There's nothing to worry about. We have just a tiny little space to take care of, our meals are pre-planned and simple, and there are no competing distractions. No phone, TV, computer. No schedules or errands to run or to-do list to worry about. The four of us just exist in a peaceful, easy world when we're camping. And what could be more relaxing than sitting around a campfire at night?

We also had fun going on a geocache hike on Saturday. Some of our cousins got us hooked on geocaching last year, and the boys got a GPS from their grandparents for Christmas. Now, wherever we go, we enter coordinates into our GPS and go hiking to look for the "treasure" that's hidden nearby. Of course, we have to be careful to choose short hikes (we had to pass up on some great multi-caches this weekend), but it's still great fun.

Back to the real world today. Ken left yesterday for a week-long business trip - always a challenge for me. I've stocked up on easy meals and am hoping my good health holds out for the week. The toughest part is mornings. I have to get both boys out the door to different schools at roughly the same time. Ken handles a lot of the morning routine, since I'm usually a slow starter. The boys and I were like a finely tuned military operation this morning - up at 6:45 (felt like 5:45 because of Daylight Savings Time - yikes!), out the door at 7:25, drop Jamie off at middle school, back home in time for Craig's bus to pick him up at 7:50. Whew. We did OK this morning, but wish me luck for the rest of the week! Have to try to recall that peaceful feeling sitting around the campfire eating s'mores...

It Was Good While It Lasted

Histimine molecule

Well, that was an exciting run - one whole day of feeling good. Wahoo!

My allergies started to act up again last evening, and I woke up feeling awful this morning. This is something that has fascinated me ever since I first got sick with CFIDS...how can you sleep for 9 hours and wake up feeling worse than when you went to bed?? I'm doing OK now, just not full of energy like yesterday.

So, did my allergies make me feel poorly today or did I do too much yesterday, kicking off a post-exertional crash that made me over-react to allergens? Which came first, the chicken or the egg?

I seem to have developed a new allergy in the past week- how exciting! For the past 10 years, I've had fairly low-level allergies to dust mites and molds that are pretty much the same year-round. I take some allergy medications and don't think too much about it. Last week, after our overnight at the beach, my eyes suddenly became horribly irritated - sore and constantly watering. Yesterday was the only day in the past ten days that I've been able to wear my contacts (and I don't have much patience for glasses!). This happened to me last summer when we went to South Dakota, but it's rare for me to have such an acute allergic reaction here at home.

I saw my doctor today, just my every-few-months check-up. I'm very fortunate to have a doctor who understand CFIDS. She's often not able to do much other than listen, record new symptoms, and refill my prescriptions, but it's still comforting to see her, to know that she's there in my corner if I need her. She had some suggestions today for additional allergy medications and told me that allergies are off the chart for everyone around here right now. I guess we're paying for our unusually warm winter.

So, I'll try the things she suggested and will hopefully get some relief for my poor eyes. Of course, the irritated eyes aren't the real problem; when allergies flare up, so do all my other CFS symptoms. The achy legs and lack of energy are far worse than having to wear glasses.

I'm very much looking forward to camping this weekend. It's always so relaxing for the four of us to get away together, with no stress or pressures. Now I just need to get through the next 24 hours of packing and preparation.

Slow and Steady Wins the Race

I'm back! After a week and a half-long crash nestled in a month of barely getting by, I feel GOOD today. What a treat!

Even the weather cooperated today. After a mostly cold March, today truly felt like spring with bright sunshine and 70 degrees. Here in Delaware, forsythia blooms at this time of year. Its vibrant yellow blossoms along roadways, fields, and neighborhoods represent spring to me.

I reveled in a forgotten sense of freedom today. Not only did I feel good, but both of my boys felt good and were off at school. My wonderful and incredibly patient friend Amy has been waiting weeks (months?) for this unlikely alignment of the stars so that we could go shopping together. We went to Trader Joe's, a fabulous whole foods store, and I stocked up (never know when I'll be able to get out again).

Ironically, now that our cupboards and fridge are overflowing, I ordered Chinese take-out for dinner! I've learned the hard way that shopping can easily use up my allotment of energy for the day. To also cook dinner would be asking for trouble.

It's so hard to moderate my activity level when I feel good. I want to do everything and make up for lost time. It still astounds me that exercise can feel so good when I'm doing it and result in my feeling so horrible a few hours later. I've long believed that this unique and mystifying reaction lies at the heart of unraveling CFID's secrets.

So, I'm taking a break but still enjoying this gorgeous day. I brought the laptop out onto our deck in my reclining chair to absorb all of this sunshine and sweet spring air. We're planning to take our pop-up trailer out for the first camping trip of the season this weekend. I need to pace myself so I can make the most of this fleeting gift of energy.

Weekly Inspiration: The Power of Hope

The first time I read The Anatomy of Hope by Dr. Jerome Groopman, I was pretty much at rock-bottom. It was at the end of my second year with ME/CFS, and I was in a terrible relapse. I was feeling that my health and my life were entirely out of my control. This book had an immediate positive impact on me (to see my full review, check out my book blog). 

Although Dr. Groopman is an oncologist and the patient stories in his book deal mainly with cancer, his conclusions about the nature and power of hope are relevant to anyone living with chronic illness. In addition, Dr. Groopman recounts his own 20-year struggle with debilitating back pain. 

He describes living with pain and restrictions in a way that is familiar to anyone with CFS: 

 "The boundary of my life was like an electrified fence at the perimeter of a prison; if I ventured too far and tested it, I was thrown back from the shock of its force into my confinement. If I stayed inside the fence, I was somewhat safe. So, I assessed each movement and task of the waking day for its distance from that perilous perimeter." 

Dr. Groopman carefully defines hope as just one aspect necessary for healing, not a miracle cure. He echoes my own feelings when he points out that many of the popular books on the power of positive thinking blame the patient if positive thinking alone doesn't cure them. If you're still sick, you must be doing it wrong.

Instead, Dr. Groopman defines true hope in words so comforting and encouraging that I have hung them over my desk: 

"Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion. Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them. 

There are real options and I have genuine choices. 

What I do can make a difference. 

My actions can bring a future different from the present. 

I have some control over my circumstances. 

I am not entirely at the mercy of forces outside myself." 

I found these words so empowering at a time when I felt I had no power over my body. It helped me immensely to realize that, no matter how debilitated I felt, there were always some things I could do to help myself: read an uplifting book, watch a funny movie, get outdoors for some fresh air, take better care of myself, and rest when I needed to. 

I've always felt strongly that life is all about choices, that you need to take responsibility for your own life and not be a victim. Now I realized that I had fallen into a victim mentality since becoming ill. It's pretty easy to do, when such a debilitating illness suddenly seems to take over your life. 

Groopman's book made me recognize that I still had choices, within the confines of my illness. I could decide when to rest more or when an activity was worth risking a crash. Even at my worst, I could decide to stay in a positive frame of mind rather than wallow in self-pity. 

Besides feeling better spiritually, replacing negative emotions with positive has some real physical benefits. We know that people with ME/CFS don't respond to stress well, that our brains don't produce the right amounts of stress hormones at the right times. It's reasonable, then, to accept that reducing stress and negative emotions will at least help to prevent a worsening of our symptoms. 

So, after succumbing briefly to despair one evening this week, I reread The Anatomy of Hope and tried to make the best of my bad week. I read a lot, wrote on the laptop when I was able, watched a great movie (Elizabethtown), and listened to some favorite music. I also made myself go outside each day, even if I could only make it as far as the front yard, to feel the sunshine and fresh air and watch my boys play. It may not seem like much, but just knowing that I have some control over my life helps a lot.

Read my full review of The Anatomy of Hope at my book blog, along with multiple options for where to find it.

[Update 6/23/22: Eight years ago, my dad was diagnosed with melanoma, probably already at stage 4 at diagnosis. His prognosis was poor, and in fact, he did die one year later, at age 70. I was devastated and still miss him every day, but that last year we had with him was so special and irreplaceable. Immediately after his diagnosis, I sent him The Anatomy of Hope, and he read it cover to cover. I also printed those same quotes I included above for him to hang in his room. Although, obviously, hope didn't save him in the end, I do think this book had a significant effect on that last year for him. My dad was something of a pessimist generally, but reading this book seemed to move him into a more positive frame of mind. For that entire last year, right up until the cancer moved into his brain and he went into hospice that last week, he remained optimistic and kept fighting and trying treatments. I can't know, of course, but I suspect he would have given up much sooner and not lived as long (or as well) without that hope to sustain him. And that last year meant so much, to him and to us. We spent a weekend with him every month (he was 8 hours away)--even his teen grandsons willingly gave up their weekends to spend time with Grandpa! We talked and laughed, played cards, ate his favorite foods, watched old home movies, and enjoyed each others' company. So, I do believe that this book helped him ... and it has certainly had a huge positive impact on my own life.]

The Anatomy of Hope is available through Amazon or through these other options:

 

Listen to a sample of the audiobook here, from the introduction, and/or download it from Audible.

 

You can buy the book through Bookshop.org, where your purchase will support the indie bookstore of your choice (or all indie bookstores)--the convenience of shopping online while still buying local!

 

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

Chronic Illness and Hope

In search of comfort and inspiration today, I turned to one of my favorite books, The Anatomy of Hope by Dr. Jerome Groopman. As with earlier readings, Dr. Groopman’s stories of how hope (or its absence) deeply affected his patients’ lives pulled me right in and invited me to compare my own sense of hope with the tales in his book.

After reading about several patients who lacked hope, who gave in to despair, I thought about my own situation. I try to be optimistic (which Dr. Groopman says is different than hope), but what are my own barriers to true hope? I certainly think that my condition may improve somewhat over the years, but I realized that I don’t truly believe that I can recover.

In part, my scientific background gets in the way. I’ve read everything I can about CFS and follow all of the research closely. I know that scientists don’t yet know what causes CFS or how to cure it. I know that there are no effective treatments (yet). Worst of all, I am painfully aware that very few people ever fully recover; various studies estimate a recovery rate of somewhere between 2 and 10%. My analytical mind has absorbed those statistics and made them a part of me.

Dr. Groopman tells one story that really sticks in my mind, of a pathologist colleague of his who was diagnosed with a particularly deadly form of stomach cancer. He knew, from his own professional experience, that the recovery rate for this cancer was almost zero. Only 1-2% of people with this cancer live six months after diagnosis; less than 1% survive to nine months. Yet, this pathologist, with this scientific knowledge deeply ingrained in him, ignored the death sentence and embarked on a difficult treatment path that most of his colleagues thought to be foolish. He allowed himself to believe that he had a chance, albeit a tiny one; he beat the odds and survived.

I’ve tried to convince myself similarly that I can be among that 5% or so that recover from CFS. Sure, it’s unlikely, but why not me? Oddly enough, though, when I occasionally read of someone’s miraculous recovery from CFS, my first reaction is not inspiration but skepticism. I think they were probably misdiagnosed to begin with; they couldn’t have really had CFS because there’s no cure for it. How do I overcome this skepticism and encourage true hope in myself?

The uncertainty and supposed controversies surrounding CFS make matters worse. With the public and even some doctors doubting the severity of CFS, if not its very existence, what would it mean if I were to recover in the absence of a known medical cure? I know intellectually that this is an absurd thought, that I would welcome any relief from this devastating illness. Emotionally, though, it’s a fear lurking beneath the surface. Would recovery somehow negate the suffering I’ve endured these past four years or the plights of so many other people with CFS? I need to find a way to get past these illogical thoughts so that I can picture a better future for myself.

I certainly have no trouble picturing some improvement in my future, and I often focus on that goal: to find ways to improve my condition, a little at a time, to improve the quality of my life and my ability to do the things I enjoy. CFS requires a careful balance of hope and acceptance. Some level of acceptance is necessary in order to get through daily life and avoid crashes. To ignore my limitations would be to sentence myself to constant relapses. I am constantly searching for the right balance and for ways to keep real hope alive in my heart.

Riding the CFIDS Rollercoaster

Another song stuck in my head today:
When I get to the bottom
I go back to the top of the slide
Then I stop and I turn and I go for a ride
Till I get to the bottom and I see you again...
- Helter Skelter (Beatles and remade by Cheap Trick, U2, etc.)

Whee! In case you haven't guessed, I'm at the bottom of the slide today. Sometimes I just get so sick of these constant ups and downs.

We had a very nice weekend. For the first time in weeks, no one had a fever or required urgent medical attention! We took advantage of our good fortune Saturday and finally made the trip to the beach that we've been putting off for weeks. We've all really been looking forward to this little tradition of ours, escaping to the beach for a mini winter vacation.

We packed up Saturday morning (we've learned not to make advance preparations!) and headed out of town in high spirits. It was cold and windy this weekend, but the sun was shining and the change of scenery was just what we needed. We walked on the beach and deserted boardwalk, ate lunch at our favorite fish & chips place, browsed through bookstores, took a swim in the hotel pool, and just took it easy. Not easy enough for me, though, I guess.

My stamina has been very poor lately, and I guess I was on my feet too much, even though it didn't seem like much at the time. I could tell I was crashing by Sunday morning as the familiar aches crept into my body. I tried to pull back - sitting in the sand watching my boys play, sitting on the floor of the bookstore to browse the lower shelves - but it was too late. By Sunday night, I felt horribly sick, and Monday was a torturous blur spent flat on my back. I'm doing slightly better today - well enough to sit up briefly and use my laptop anyway.

I try so hard to stay positive and optimistic, to accept my "new life" and make the best of it, but sometimes it just seems unbearable. I hit bottom last night at bedtime, sobbing to my husband. At times like this, the thought of living like this forever is terrifying.

How can an easy-going 24-hour getaway make me so sick? How can I achieve my writing goals if I'm unable to make commitments for fear of not being well enough to meet them? I love to travel, to see new places, to explore the world, but I can barely manage a single night away from home.

OK, deep breath. I need to vent my frustration, but I also recognize that I have to try to regain my more optimistic outlook if I hope to feel any better. Stewing in self-pity only makes me feel worse.

First I need to remember all that I have to be thankful for. No, I don't have my health, but I do have a wonderful husband and children who bring a lot of joy to my life. And I do recognize, even during my darkest times, that I am truly fortunate not to be even sicker. Whenever I go through a bad crash like this, I always think of all the people with CFIDS who feel that bad every single day. I just read another wonderful article about Laura Hillenbrand. She's been far sicker than I have, for far longer, and look at what she's accomplished. What an inspiration!

Most of all, although it sounds trite, it's crucial for me to just focus on one day at a time. Considering a lifetime with this illness is too overwhelming. Thinking about all that I want to do with my life in light of my current restrictions is just too depressing. Better to focus on small goals, on getting through each day, even each hour. So, today I'll try to take advantage of this forced downtime to read some more (another thing I'm grateful for, that I can still read!). I'll rest aggressively to help myself get back to where I was as soon as possible, maybe some gentle stretches later. One...day...at...a...time.