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.