The Holiday Marathon

Whew, what a weekend. We drove to Rochester, NY, on Wednesday to spend the Thanksgiving holiday with my extended family. And I do mean extended - my mother's family is there, my father's family, my mother's husband's family - lots of aunts, uncles, cousins, etc. So, our visits there are always packed full. I have backed off a bit on the agenda since getting CFS. We used to go to 3 different houses a day! It's still hectic, though, with lots of large gatherings. In fact, I have lots of friends from both high school and college in the area that I never have time to see because we have so many family members to visit.

We had a good time and enjoyed seeing everyone, but it was exhausting. I thought I was doing OK this morning, until about 10 am when I suddenly felt so tired! I'm not really badly crashed, just very, very tired.

At one point this weekend, I said to Ken, "I know I haven't done anything physical all weekend, but just sitting in a big group of people talking totally wipes me out." He said, "It wears ME out, and I don't have CFS!" The kids had a blast playing with all their different groups of cousins all week, but that was a LOT of physical activity for them. Craig was fine this morning, but Jamie is exhausted and said he woke up about 10 times last night - and that's with his sleep medications. I hope he rebounds quickly - he has an all-day trip to Washington, DC, tomorrow morning, leaving school at 5 am!

And now, tomorrow is December already! Christmas is only three and a half weeks away. Yikes! I haven't even begun to think about Christmas shopping. So much to do in such a short time. How does everyone else manage the holiday marathon?

Movie Monday 11/23

I had a weekend of highs and lows - the high of going hiking with my family on Saturday...and the low of thinking I had managed it OK, then crashing on Sunday afternoon. At least, I suspect it's from the hike, but who knows? Still in bad shape today and feeling a little down (and very worried about the rest of our week, traveling to see family for the holiday weekend). I have been looking forward to Movie Monday, though!

We watched two movies this weekend:

• Million Dollar Baby I put off seeing this Academy award-winning movie for quite a while, in spite of its glowing reviews, because I really detest boxing, but I saw it on the shelf at the library Friday and decided to give it a try. I still think that boxing is brutal and cruel and shouldn't be considered a sport (I covered my eyes for most of the fighting scenes!), but there is no question that this is an excellent film. The story itself is both triumphant and sad, and the acting is superb. Hilary Swank is great in the title role, Clint Eastwood plays a perfect gruff old man, and I love Morgan Freeman in every role he plays! I have to warn you, though, that this is a tough movie to watch and not just because of the boxing scenes. So, you should probably stay away from this one if you don't like sad movies, but, if you feel as I do - that any movie(or book) that can make you feel something is worth seeing (or reading) - then you should give it a try.
• Snow Falling on Cedars OK, this is a funny one - not the movie but the story of us watching it! I saw it at the library and thought, "Oh, I've always wanted to see this." So, I put the DVD in that evening and 5 minutes into it, Ken says, "Haven't we seen this before?" I told him I know I didn't see it. Another 10 minutes and he says, "I'm sure we've seen this before," and I keep insisting we haven't. At some point midway through, we finally decide we did see it. I asked Ken, "Do you remember how it ends?" Nope, me either. So, we watched it again! As for the movie, it's an excellent one, a mystery that ties into the prejudices against Japanese-Americans after World War II. Very well-done. As for the two of us, well, let's just say this isn't an isolated incident! Ken said to me, "At least you have CFIDS! What's my excuse??"

Hope you had a fun weekend and enjoyed some good movies, too!

Quote It Saturday 11/21

I've borrowed a weekly feature from my book blog, where I share quotes from favorite books that spoke to me, as someone living with chronic illness.

This week's three quotes are from the novel The Tenth Circle by one of my favorite novelists, Jodi Picoult. The Tenth Circle uses parallels with Dante's The Inferno to help tell the story of a teen girl who encounters a terrible situation. These quotes are from the girl's mother, and her thoughts on dealing with her challenges and sorrow are remarkably appropriate to those of us living with chronic illness:

God, according to Dante, was all about motion and energy, so the ultimate punishment for Lucifer is to not be able to move at all. At the very bottom of hell, there's no fire, no brimstone, just the utter inability to take action.

...That weekend, Laura learned that there are no cosmic referees. Time-outs do not get called, not even when your world has taken a blow that renders you senseless. The dishwasher still needs to be emptied and the hamper overflows with dirty clothes and the high school buddy you haven't spoken to in six months calls to catch up, not realizing that you cannot tell her what's been going on in your life without breaking down.

...It was a catch-22: If you didn't put the trauma behind you, you couldn't move on. But if you did put the trauma behind you, you willingly gave up your claim to the person you were before it happened.

- The Tenth Circle by Jodi Picoult

She really hits the mark, doesn't she? I could relate strongly to all three of these quotes.

Hope you're all having a great weekend!

The Cost of an Onion

I read something yesterday that affected me profoundly. It was a post originally written in the Forums at Phoenix Rising. I read it at Cort Johnson's blog (the founder of Phoenix Rising). You should follow this link and read it for yourself because it's beautifully written, but essentially, the writer talks about how 31-day months, like October, are extra-hard when you're on disability because it's so difficult to figure out how to feed yourself for an extra day. She writes of wanting to buy a small onion so she could make a stew and not being able to afford it.

Lately, I have been constantly worried about our finances and how to pay our ever-rising medical costs. Ken and I talk about it all the time. In the midst of worrying about our own problems, though, I see now that I have lost my sense of perspective. I may not be able to earn much these days, but Ken has a good-paying job with excellent (though expensive!) health insurance. We live in a very nice home in a great neighborhood. Although I am careful at the grocery store - comparing prices, buying the store brand, using coupons - I have never, ever worried about any of us going hungry. We pretty much eat what we want to eat (I hear Craig opening the fridge again now!). I haven't been seeing the bigger picture. We are very, very fortunate.

Here's a cool website recommended by a CFS friend, Global Rich List. Go to the site, plug in your annual income, and see how your family compares to the rest of the world. It's pretty eye-opening.

So, while we're worried about paying for plane fare to see Ken's parents, Craig's braces, and our increasing health insurance costs next year, there are plenty of other people with CFS worried about how to pay for a single onion. They're not worried about paying for expensive medicines and specialists because they can't afford any medical care. Maybe some of you reading this are in that position.

I need to remember this when I think things are tough and try to keep a sense of perspective, as well as helping other whenever I can.

In this season of Thanksgiving, I need to remember all that we have to be grateful for.

Movie Monday 11/16

I decided to start a new weekly feature: Movie Mondays! Ken and I almost always watch DVDs on Friday and Saturday nights, and I thought it might be fun to share my thoughts on the movies we've watched. I'd love to hear your thoughts and recommendations, too!

We really enjoy our movie nights on the weekends. Not only is it far cheaper (free, most of the time, since I borrow DVDs from the library) than going to the theater, but I can lie on the couch - and Ken in his beloved recliner - sip my tea, and just press pause whenever I need a bathroom break or a snack! Plus, it's something we can enjoy together no matter how sick I am.

So, this weekend, we watched:

• Mamma Mia! I requested the movie version as soon as I got home from seeing the live show on Broadway because I enjoyed it so much. Of course, the DVD couldn't quite compare with seeing it live, but it was still a lot of fun. Ken and I thought the lead roles were sort of odd choices - Meryl Streep and Pierce Brosnan for singing roles - but it was enjoyable. I might even consider buying this one (a rarity for me) because I think it would be a good pick-me-up/feel-good movie to watch when I'm feeling bad. You just can't help but sing along and smile!
• Slumdog Millionaire We just might be the last people in the universe to see this movie, but it was well worth the wait. Wow. What an amazing and powerful story of an orphan from the slums becoming an overnight millionaire and national hero. The conditions he and his brother and friend lived in and the things they endured as children were sometimes hard to watch, but it is the ultimate rags to riches story. The scenes of the slums of Mumbai at the beginning reminded me of a wonderful novel I read, The Space Between Us, about two women in India, a middle-class woman and her servant.

Have you seen any good movies lately?

Quote It Saturday 11/14

I've adopted a weekly feature from my book blog for my CFS blog, featuring book quotes that speak to our challenges in living with chronic illness.

Today's quote is from Christopher Reeve's amazing memoir, Still Me. I'm not normally into celebrity memoirs, but this one is unique. Reeve's strength and courage in the face of his complete paralysis is inspiring and awesome. I also highly recommend his follow-up memoir, Nothing Is Impossible. The things that he managed to accomplish while unable to move were incredible. Of course, vast wealth does help, but his positive attitude and personal strength in the face of such huge physical challenges is still awe-inspiring, as shown here:

If someone were to ask me what is the most difficult lesson I've learned from all this, I'm very clear about it: I know I have to give when sometimes I really want to take. I've realized instinctively that it's part of my job as a father now not to cause Will to worry about me. If I were to give in to self-pity or express my anger in front of him, it would place an unfair burden on this carefree five-year old. If I were to turn inward and spend my time mourning the past, I couldn't be as close to Matthew and Alexandria [his kids from his first marriage]...And what kind of life would it be for Dana if I let myself go and became a depressed hulk in a wheelchair? All of this takes effort on my part, because it's still very difficult to accept the turn my life has taken...
- Still Me, Christopher Reeve

See what I mean about his strength?

Hope you're all having a restful and enjoyable weekend!

Life Returning to Normal

Several times in the past six weeks, I've written that I was back to normal, then crashed again the next day, so this time I waited to be sure.

I've still got a bit of lingering chest congestion/cough, but I have been improving a little bit each day this week. No more fever, sore throat, or those terrible aches that went on for weeks. Our house is clean (no thanks to me - our cleaning service came this morning!), I got groceries, and Ken came home from his 9-day trip last night at midnight. Life really does feel like it is returning to normal, and, somehow, my own limited "normal" seems wonderful to me now!

Even better news is that Jamie only missed one day of school after his crash last weekend, then felt good the rest of the week. He and Craig had a blast on their day off Wednesday, running around with friends, and both of them still felt well enough for school on Thursday. We had friends over Tuesday evening for soup and fun (the kids played flashlight tag and my friend and I watched a girly movie - The Secret Life of Bees - loved it!).

Tonight, I'm making New Mexican Pork Chili for dinner with homemade cornbread. I'm thrilled to be able to cook again after being so sick for so long! Jamie is supposed to play in his last soccer game tomorrow morning, but it's still supposed to be raining (it started on Wednesday), so we'll see. The poor kid has missed most of his soccer games this season due to either illness or rain. I was really hoping to take the camper out for one last short camping overnight on Saturday, but I don't know if the weather will cooperate or if I'll be able to convince Ken to leave after 9 days away from home!

Whatever happens, it feels great to feel like myself again. Hope everyone has a wonderful weekend!

XMRV News and Updates

I've been collecting links to some very informative updates on the XMRV news but was too sick to tackle a link-heavy post last week! I'm still very congested (and now Jamie is home sick, too), but my energy is very slowly returning. I'm actually sitting up in the recliner this morning instead of lying flat on the couch (good thing because now Jamie had claimed the couch) - progress!

So, here's the scoop...

• An excellent, comprehensive summary of the discussion of XMRV at last week's CFSAC meeting from Cort Johnson's blog. This is one of Cort's (from Phoenix Rising) best talents - summarizing complex information in an easy-to-understand way.
  
• Videos from the CFSAC meeting from YouTube. I haven't had time or energy to watch all of these (which is why I was so grateful for Cort's summary, above), but the ones I've seen are amazing, especially this one showing testimony from Dr. Friedman. More videos are available in the sidebar on the right on that page.
• Interim XMRV Guidelines from the National Cancer Institute, as posted on Facebook by the CFIDS Association, addressing transmission and the blood supply. I'm guessing you have to sign into Facebook and maybe be a fan of CFIDS Association in order to read this, but I couldn't find another copy on the internet. Let me know if you have problems accessing this.
• Whittemore Peterson Institute's announcement of a new test available for XMRV from VIP Diagnostics.
• from the UK, a letter from the ME Association to the Chief Medical Officer of the Department of Health about XMRV.
  

Things are happening! The testimony and attendance at last week's CFSAC meeting were truly remarkable, and the NIH seems to be finally taking notice of CFS (it's about time!). This is a very exciting time. Let's hope the momentum continues!

Quote It Saturday 11/7

Believe it or not, I have finally caught a virus, maybe the one the rest of my family had two weeks ago or maybe a new one (Jamie's starting to get congested again now). Although I've spent another week flat on my back, it's almost a relief to have "normal" symptoms like other people! For days, I've had a fever (a real fever!) and congestion. Who knows - maybe this virus will finally knock down my hyped-up immune system so I can get back to "normal." My spirits have been good, in part because of my nice weekend last week and in part thanks to some perspective gained from reading a wonderful memoir earlier this week.

The Diving Bell and the Butterfly by Jean-Dominque Bauby is the memoir of a man who was editor-in-chief of the French Elle magazine until a massive stroke left him with locked-in syndrome. He is paralyzed and can only move his neck and one eye. He communicates (and wrote his book) by blinking his eye. Kind of puts CFS into perspective, doesn't it? His book is uplifting and inspiring; his attitude is amazingly positive. You can read my full review at my book blog.

Here are a few brief quotes that I could relate to as someone living with an isolating chronic illness (while clearly recognizing the differences!)...

The doctors brought him a wheelchair, which made him realize that his situation was permanent and not improving, and caused him to move toward acceptance and consider the effect on friends and family:

Oddly enough, the shock of the wheelchair was helpful. Things became clearer. I gave up my grandiose plans, and the friends who had built a barrier of affection around me since my catastrophe were able to talk freely. With the subject no longer taboo, we began to discuss locked-in syndrome.

I think this is similar to what happens when someone with CFS is finally diagnosed, and I love the phrase "a barrier of affection." What a perfect description!

While someone wheels his chair outdoors along the shore, he spots a lighthouse:

I placed myself at once under the protection of this brotherly symbol, guardian not just of sailors but of the sick - those castaways on the shores of loneliness.

"Castaways on the shores of loneliness' - what a beautiful and fitting phrase!

And, finally, considering the difference between his old life and his new:

I am fading away. Slowly but surely. Like the sailor who watches the home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memories.

I would highly recommend this book (and I've heard the movie made from it is also excellent), especially on a day when you're struggling with self-pity. Bauby's words are honest and inspiring.

National Family Caregivers Month

November is National Family Caregivers Month, so I'd like to dedicate today's post to my husband, Ken, and all the other spouses/parents/partners out there who tirelessly help to take care of those of us who are chronically ill (and/or who care for aging parents - Ken's out in Oklahoma right now helping his parents). Most caregivers work hard every day with little recognition of their role and effort. People who don't live with these challenges (work colleagues, friends, even family) have no idea what caregivers' lives are like and how much extra effort they put forth every day.

Caring for someone chronically ill (young or old) requires hard work, patience, and often putting someone else's needs before your own. These caregivers are the heroes in our lives, but their challenges and needs are often overlooked. Some resources for caregivers:

• Medicare's Caregiver Page, with lots of resources for all sorts of caregivers
• Empowering Caregivers, a website with articles, message boards, and communities
• Today's Caregiver, a magazine for, by, and about caregivers
• Well Spouse Association, support for spousal caregivers, including local support groups

Ken and I have read two excellent memoirs written by caregivers. Mainstay: For the Well Spouse of the Chronically Ill by Maggie Strong is written by a woman whose husband has MS. Maggie alternates chapters telling their own personal story with chapters filled with facts, expert advice, and guidance for well spouses. Her book resulted in the creation of the Well Spouse Association, listed above.

Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife by Gregg Piburn is written from the perspective of a well husband caring for an ill wife. Gregg's wife, Sherrie, has CFS, fibromyalgia, and has undergone multiple surgeries for various sources of chronic pain. Gregg is a management consultant, so he uses a model of group dynamics to apply to families of the chronically ill, using his own experience as an example, with advice on how to move toward healthier relationships in a caregiving situation.

(Both of these books are now out of print, though used copies are still available - see below. Other books are available at the Well Spouse Website).

I also recently read a memoir, In My Heart by Ursula Hanks, written by a woman caring for her aging parents that I'd recommend to people in a similar situation.

So, take some time today to thank the person or people who help care for you and to let them know how much you appreciate all the things they do. And if you're a caregiver reading this, take some time today to do something just for yourself - you deserve it!

Payback Time

Well, I didn't think I'd get to spend a whole day in NYC walking around and skipping my nap without consequences, did I? No, but a girl can always hope, can't she?

I only felt a little crashed on Monday, and pretty good (not great) on Tuesday. I've been couch-bound for so long, though, that I took advantage of yesterday's pretty good day to get groceries, deposit a stack of health insurance checks, and pay the library fines that piled up this past month. By Tuesday afternoon, I was starting to feel worse, and I woke up this morning back to truly horrible - a burning sore throat and aches so severe that I've spent most of the day in bed (bed days are much worse than couch days).

I'm not entirely sure whether this is a delayed response to Sunday's freedom, a sign that my stamina is so bad right now that the grocery store did me in, or yet another viral trigger messing with my immune system. Does it really matter?

Ken left this afternoon for nine days away, and we're both worried about how I'll manage. He stayed home from work this morning to get some stuff done around the house, which I really appreciated, and I'm glad I went to the grocery store yesterday to stock up, despite the fall-out. He usually tries to limit his time away, but he really needed to get out to Oklahoma to visit his parents, and it's a lot more affordable for us when combined with his business trip to Louisiana (yes, he's visiting our old home without me!).

Lots of good ideas for blog posts, but any more creative writing will have to wait for another day.

Victory!!

I did it - I survived and, yes, even enjoyed my big weekend!

I was still severely ill on Thursday and Friday, with horrible aches, so I spent most of Friday in bed, took two long naps, and started to finally perk up a bit Friday evening, in time to supervise pumpkin carving.

I was able to watch Jamie's soccer game Saturday morning, then came home to rest up for Halloween night. Remember how upset I was that I hadn't been able to work on costumes? Well, Jamie came through with a very creative idea, and Ken and my mom shopped for supplies. We dressed up as the characters from the Where's Waldo? books! Jamie was Waldo, I was Wenda, Ken was Odlaw, and Craig - who likes to do his own thing - came up with an awesome old man costume. My mom and her husband dressed up as Indians. I even managed to go to a few houses on our cul-de-sac with my family and the boys' friends before heading back home to hand out candy.

Jamie and his friend rushed back to the house, showered, changed into dress clothes, and went to their Homecoming Dance! They had a great time and are looking so grown-up now.

On Sunday, the boys in the family headed to NJ for a Jets game, and my mom and I went to New York. Ironically, yesterday was the New York City Marathon, and I ran my own CFS-style marathon in New York! My mom and I went to see Mamma Mia! on Broadway. What a fabulous, happy, upbeat show! Everything about it was wonderful - the cast, the music, the dancing, the costumes, the storyline. And we also enjoyed some excellent food. We had lunch at a little French bistro called Tout Va Bien, and I finally got to try the homemade table-side created guacamole at Rosa Mexicano for dinner. When I finally got on my (late) train to head home, I was stuffed and exhausted - I really did feel as if I'd run a marathon. A couple days ago, I was really sick of lying in bed, but it felt like heaven last night!

I'm back on the couch today, but I feel like I earned it this time. My mom was so worried about me last night - we ended up walking more then we intended because a lot of roads were closed for the marathon, so cabs weren't always possible. But I explained to her that this was a choice I had made, that I knew it would likely result in feeling bad the next day, but the joy and wonderful escape she gave me were well worth it.

Amazingly, Jamie and Craig both made it through their own marathon weekends and are at school today. All in all, a wonderful, victorious weekend!