Wednesday, July 31, 2013

Leave of Absence - August

Just wanted to post a quick note so that no one worries about me!

We have a crazy busy month coming up, with vacation (yes, we get to go!) and all the exhausting prep that goes with it, a big family gathering, and getting the boys ready for the return to school/college. So, I probably won't be posting much here in August. When we vacation, we camp and are mostly tech-free (that's part of the point) and once we get back we will be very busy, so I won't be checking in for a while.

For those of you who've been following our recent medical saga, my husband's eye surgery went very well and was the best possible outcome. He had no new retinal tears, no sign of retinal detachment, and the bleeding was just from a broken blood vessel connected to an old repair. A quick laser repair did the trick, and he is now recovering and seeing a little bit better every day. Thanks for your kindness and concern this past week.

We're still not exactly sure when we'll be leaving on vacation, and we need to come back a bit earlier than expected, but the doctor gave him the OK to travel, and we are thrilled that we will have our little getaway - we've waited 14 months for this!

So, I'll post again when things settle down here, toward the end of the month. Hope everyone enjoys a happy and relaxing August!

Monday, July 29, 2013

Movie Monday 7/29

So, our sons were gone all last week, sailing with their grandparents off the coast of Rhode Island, along with their cousins. I really needed the time to myself, though the week at home didn't turn out quite the way my husband and I had envisioned it. He is in surgery right now, for his eye, so he could only see out of one eye last week and had a bad cold as well (more on all that tomorrow, once we know more). So, we spent a lot of time relaxing with movies and TV:

On my last night alone, I watched Smashed, a movie about hard partying woman who gradually realizes that it's not all fun and games and she has a serious problem. Puking in front of your kindergarten students tends to have that effect. It was an interesting movie and well done, though somewhat depressing. She does seek help and eventually begin to pull her life back together but not without some significant bumps in the road. It does end on a hopeful note, but it's a serious and sometimes disturbing story.

After Ken got home from his trip, he and I watched The Impossible, a movie about the 2004 tsunami in Thailand. The story focuses on a British family - the parents are played by Ewan McGregor and Naomi Watts - who are vacationing at a beautiful, secluded resort when the tsunami hits without warning. This is a heart-pounding, edge-of-your-seat movie from beginning to end! The visual effects are just stunning, and seeing what this family went through is heart-rending and terrifying. We were both captivated by the movie from the first moments to the last.

With the kids away, Ken and I also caught up on some TV shows that we like. We watched the first few episodes of the new season of Perception, an excellent show about a man with schizophrenia who helps the FBI, played fabulously by Eric McCormack. We also watched a few recent episodes of Graceland, a new show about a group of law enforcement officers from different agencies, all living together in a California beach house and working undercover to put a dent in the drug trade. It took us a while to get into this very fast-paced show, but we are hooked now. And we watched all of the episodes so far released of Under the Dome, a new mini-series based on Stephen King's massive novel. Ken read it, and I didn't, but we are both enjoying the show, about a town that is mysteriously cut off from the rest of the world by an invisible but impenetrable dome.

Have you seen any good movies or TV shows lately?

(If you are also interested in what we are reading, check out the Monday post on my book blog).

Wednesday, July 24, 2013

Listening To Your Body

As most people with ME/CFS quickly learn, listening to your body is probably the most important thing you can do to improve your quality of life and prevent constant, unpredictable crashes. Unfortunately, it is also the hardest thing to do. Even after over 11 years with this illness, I am constantly relearning this important lesson.

I am alone this week - my kids are spending the week in Rhode Island, sailing with their grandparents and cousins - so the level of noise and chaos around me have quieted down enough that I can actually hear my body again! I had a really bad week last week. My husband was traveling, so I was on my own to get unpacked from our camping trip and get the kids ready for their trip. Now, they are 15 and 18, so they did their own packing and even loaded the car. But with them around, I still had plenty to do, plus two extra trips to the doctor for my son's ear infection, two trips to PT for his knee, many trips to the drugstore, and an exhausting trip to his school to turn in his sports physical forms (the main office is a long walk down the hall and up two flights of stairs, plus the front entrance was closed for construction!). Anyway, I won't bore you with all the details (really, there's more), but the bottom line is that I went way past my limits last week.

When I finally got back home on Saturday after dropping them off (a 4 1/2 hour return trip on my own, stuck in traffic), I was a mess. I completely collapsed and spent the next few days lying on the couch. It was such a huge relief to have no one to take care of but myself! I realized this weekend that I expend an enormous amount of energy simply taking care of food for our family - planning meals, going to the grocery store, cooking, cleaning up afterward (my husband helps with dinner clean-up). Realisticially, that probably takes up a large portion of the limited stamina I have available each day. It's important to me, though, to have healthy, tasty meals for my family, and I actually enjoy cooking, so I'm not sure that can change much.

I am determined, though, during this week alone, to listen to my body and stay within my limits. It's still incredibly difficult, after all these years. While I am attuned to the symptoms that are big signs of danger for me (sore throat, flu-like aches, exhaustion), there is a much louder voice in my head saying, "But you have to do XYZ..." And normally, there is an even more persistent, real voice next to me saying, "Mom, can you take me to...(fill in the blank)." I have learned some lessons over the past 11 years. I usually know when it needs to be a Plan B day. But I still tend to go past my limits almost every day.

The interesting thing is that my limits have greatly expanded from when I first got sick, but as I am able to do more, I still keep doing more than I should! Of course, in that first year, before I was diagnosed, I didn't know about post-exertional malaise or exercise intolerance, so I had no idea why I would feel fine one day and horrible the next. Back in those days, my crashes were severe, leaving me useless on the couch and often lasting for weeks. With treatment (correcting sleep dysfunction, beta blockers for OI, low-dose naltrexone, and Imunovir mainly), I have many more good days now, my crashes are mild and only last a day or two, and I am able to do much, much more than before.

All that is good, but the more I can do, the more I push past those limits and try to do more! I guess it is human nature (and certainly it is my nature!). I guess it's just never enough! I suppose even perfectly healthy people try to do more than they should. But I know it's been bad lately, and I need to refocus on staying within my energy envelope, as they say.

I think that is one of the toughest things about living with CFS: having to constantly, always be aware of your symptoms, your limits, your activity level, etc. It's mentally tiring to keep tabs on it all. In fact, in the first years of my illness, my mother worried constantly that I was "too focused on my illness." She thought I'd feel better if I could just get my mind off it. I suppose she probably still thinks that to some extent, even though she understands CFS so much better now. A normal, healthy person really can't understand what it's like to have to be so ever-vigilant.

Ah, well. Lots of musings and not many solutions in this post, huh? Do you have any tips on staying within your limits? I could sure use some!

Monday, July 22, 2013

Movie Monday 7/22

I have missed several Movie Mondays in a row, so I will do a quickie catch-up today. We saw a few movies as a family recently, including one in the theater! And this weekend, I have been alone (ALONE!!) and indulging in movies my family would hate.

We watched a couple of 80's classics on DVD with the kids:

Mr. Mom, starring Michael Keaton as the overwhelmed husband who tries to take care of the house and kids while his wife works (my husband hates these movies, TV shows, and ads that shows Dads as totally inept!). Craig enjoyed the humor in it.

The boys and I watched Risky Business, Tom Cruise's first big hit, where he plays a high school student who starts a prostitution business in his parents house when they go away for the weekend. Best line ever from an 80's movie: "I have a Trig final tomorrow, and I'm being chased by Guido the pimp!" Both boys, ages 15 and 18, enjoyed it very much, as I knew they would.

Jamie was away with friends one weekend, so Ken and I and Craig actually went OUT TO THE MOVIE THEATER! This is a big event for us. We normally get out once a year, when the new Harry Potter movie comes out (how can they be over?), but this was our second time in the theater in the past few months. We saw Now You See Me, and we all loved it! It features an all-star cast (Mark Ruffalo, Morgan Freeman, Woody Harrelson, and more). Four magicians/illusionists receive a mysterious summons; the result is a magic show that captures the attention of the entire world. Their first show in Vegas results in a massive bank robbery in Paris. The FBI is put on the case but are always two steps behind them. It's an original story that keeps you guessing right up to the very last moments and was perfect to see on the big screen, with all the cool illusions.

The next night, the three of us rented a DVD, The Dark Knight Rises, the latest Batman movie. Craig had already seen it with friends but wanted to share it with us because he said it was the best of all the Batman movies! It was very good - classic action/superhero movie with a fast pace, nonstop action, and plenty of twists and turns.

I got back home from dropping off the kids on Saturday afternoon and was totally wiped out. I have been indulging in girly movies each evening since then! Saturday night I watched Now is Good, starring Dakota Fanning as a 17-year old girl named Tessa who is dying of leukemia. She has a bucket list of things she wants to do before she dies, and her best friend is helping her, much to her father's frustration since some of the things on her list are dangerous and/or illegal. Then Tessa meets the hunky boy next door, and her life takes a dramatic turn. My husband hates sad movies, and I bawled my eyes out over this one! It was very good, Fanning was excellent in the role, and a good cry over fictional troubles is always so cathartic!

After crying so hard, I decided I needed something light and fun next, so I watched Party Girl, a 1995 film starring Parker Posey that was nominated for an award at the Sundance Festival. Mary, played by Posey, is the party girl of the title, living a carefree and drunken life, barely scraping together enough money for rent and her designer clothes habit by throwing wild parties and charging for admission and drinks. She gets arrested for one of these illegal parties, and her godmother bails her out and gets her a job as a library clerk. Though it is somewhat light and fun, the movie actually has some heartfelt emotion to it. It was the perfect antidote after crying over Now is Good!

And, continuing the tear-jerker festival, last night I watched The Boy in the Striped Pajamas, a movie adaptation of a wonderful book I recently listened to on audio (my review) about a young German boy whose father is a high-ranking Nazi official during World War II. His family moves to Auschwitz, and the boy - desperate for a friend to play with - befriends a boy his age on the other side of the fence. Their friendship grows, though as anyone familiar with the Holocaust knows, there can't be a happy ending. So, another crying bout last night, but it is an excellent movie. It was also great on audio.

Have you seen any good movies lately?

Thursday, July 18, 2013

Up and Down and All Around

Whew, I feel like I've been through the spin cycle a few times. Sorry I haven't posted here in a while. This summer generally has just been so busy and exhausting for me - this past week in particular. Thanks to those of you who checked in on me - I was touched by your thoughtfulness. So, the highs and lows...let's start with the highs...

My husband and sons skipping stones along Lake Ontario at sunset.
We spent four days traveling and camping our way to the far northern reaches of New York state for my college reunion. As you know, I was worried about managing the trip and the reunion and thinking I might feel left out among the healthy friends of my youth. I shouldn't have worried. I had an AMAZING time! We mainly went for the reunion at my old sorority house. It was the 25th reunion for the year behind me, and they organized a massive group of friends from several surrounding years (from '87 to '90). There were probably 30-40 of us from those years who showed up, plus a smattering of alumni from recent times and from the 70's and 60's.

It was soooo much fun! Though I hadn't seen most of them in 26 years (other than letters at first and Facebook more recently), it felt as though no time had passed at all! We were all so happy to see each other. We reminisced and told stories and laughed and laughed and laughed. My face hurt from smiling and laughing so much!

I didn't feel left out at all. Most of them know about my illness from Facebook (I don't talk about it much among my friends and family on Facebook, but I do occasionally mention it, like on Awareness Day), so I didn't feel like I had to explain anything. There were lots of chairs on the porch, so I wasn't the only one sitting. And when I got tired of standing after a group photo, I just plopped down on the stairs - a couple of my friends joined me and the others moved down to the bottom so we could still talk face to face (I really hate being the only one sitting at a party and staring at people's bellies all night). Although most people were drinking beer or wine, I wasn't the only one drinking water, and - unlike when we were students - drinking was not the center of attention!

The only thing I missed out on was going out downtown (it's a small town) and dancing until 2 am Friday night! The women from our classes went out en masse, took over some of our old bars, and partied like it was 1986! They even went out to The Bagelry (an amazing place!) at 2 am for after-hours pizza bagels, just like the old days. So, I missed all that, BUT...I did manage several hours of socializing with everyone on the porch at the house both Friday and Saturday evenings, which was an amazing feat for me. I think all the laughter counteracted the exertion!

A big shout-out to my incredible family because I never could have managed this without them. We enjoyed camping, and it gave us a nice respite from the crowds of laughing, shouting women! My husband and my two sons were great sports, hanging out while I caught up with my friends (there was one other husband and one other teen for them to hang out with!). Everyone kept saying how incredible it was that two teen boys were so patient and thoughtful. I'm lucky to have all three of them!

Oh, yeah - the bad stuff. I don't want to dwell on that now that I am smiling thinking about the weekend. It's just been an exhausting and stressful week for me. My husband has been out of town, and the boys and I have had just 3 days to unpack from the last trip, clean up the house, and get ready for another trip. My son got an ear infection over the weekend, so we ended up making two trips to the doctor's office, 3 trips to the pharmacy, plus all the other errands, etc. Then my husband had a medical scare last night, 2000 miles from home (everything seems to be OK for now). Whew - just feeling totally wrung out right now.

Back to the positive more big, exhausting day for me tomorrow, packing up and driving the kids to their grandparents' house, with a stop on the way at our Lyme doctor's...and then...I get 2 days all to myself (by myself!!) and another 4 days alone with my husband. I have big plans - to rest and recuperate!

Here's a photo from the weekend - that's me in the front, holding the Phi, with a big smile on my face!

Saturday, July 06, 2013

Just. So. Exhausted.

I had good intentions this week to write a couple of in-depth blog posts, but I am still struggling - every day - just to get through the day and do all the necessary stuff for daily life.

My youngest son is off his crutches now, in PT, and feeling great. I no longer have to wait on him, fetching food, ice packs, video games, etc...BUT now that he's back on his feet, he wants to make up for lost time with his friends. I spent much of the week ferrying him around town - picking up his friends, taking them to the pool, and the driving range, plus he and I had a bunch of appointments. Lots of driving time this week. We had a houseful of teens here on the 4th of July, so I spent much of the day cooking!

So, I woke up this morning feeling totally exhausted. I really, really wanted to take a walk before it got too hot this morning, but there is no way I could manage that today. I am resigned to yet another day of feeling exhausted. Sore throat and aches are creeping in, too.

I think my other problem is that with the long days, I am waking too early. I always wake as soon as it starts to get light out, despite room-darkening shades and an eye mask. I can usually manage to stay in bed, dozing lightly, until about 8 am, but that is it. So, I suppose I need to get to bed earlier, but I already head upstairs at 9:30 pm! And I really enjoy my little bit of reading time before lights out.

Didn't mean to write a whiny post - just trying to explain why I haven't been writing much lately. Soooo worn out...