Wednesday, September 25, 2013

Giving Up, Giving In

Giving up has a bad rap. We are taught - by our parents, by our schools, by society - to never give up, to persevere, to overcome whatever obstacles stand in your way. I have always been a fierce push-through-it kind of person which made adjusting to my new life with ME/CFS so much harder. This illness runs contrary to everything we have ever heard in our past lives: if you keep pushing through, persevering, never giving up...then you just keep getting sicker and sicker.

My first years with ME/CFS were defined by this crazy rollercoaster ride known in CFS circles as the push-crash cycle, especially before I had my diagnosis or learned about post-exertional crashes. I'd feel horribly sick - too sick to do anything at all - so I'd lie on the couch and in bed, unable to do anything. Then, I'd miraculously feel better and jump up and resume my normal activities again - even worse, I'd do more than normal in an effort to make up for those lost sick days. Then, of course, within a few days I'd be back on the couch again. Back in those days, the ups and downs made no sense to me. Now I know better, but it is still hard to go against all those societal norms and give up.

I had plans today, urgent plans. I "had" to go to the Post Office to mail my step mom's birthday gift so it will arrive in time for her birthday on Friday. I "had" to go to the Verizon store to change an erroneous bill and fix my sadly broken cell phone. I "had" to stop at the grocery store and grab a few items for the rest of the week.

But I woke up feeling awful - exhausted after 9 solid hours of sleep, still tired but too wired to sleep anymore. I thought I'd feel better after washing up and doing some gentle yoga. I procrastinated on getting my package ready and instead read my e-mails while watching the Today show. I kept telling myself, "I don't feel that bad." I tried to trim down my to-do list, thinking that I have to get to the Post Office but I could put off the other errands.

Finally, after putting in a load of laundry and noting the sore throat creeping in and the aching-all-over feeling, I gave up. After 11 years, I should be familiar with this sort of day - what I call a Plan B day - but it still took me several hours to finally admit that I needed to give up and give in. The world won't end if I don't get those things done. I decided I will just call and let my step mom know that her gift may be a day late.

You know it is a crash day when you finally decide to give up your to-do list and stay home and almost weep with relief. Maybe it was the very busy weeks and weekends filled with houseguests we've had lately. Maybe it's my son's cold triggering an immune system flare-up. Whatever it is, I've been struggling all week - told my husband yesterday I've just been feeling wiped out and sluggish in spite of getting plenty of rest - and it just feels so good to give in.

I've made another cup of herbal tea, piled up the pillows on the couch, and gotten myself horizontal. I have my book by my side and the Fall book catalog I never seem to find time to go through.

I am giving up and giving in. It is the right thing to do. It is what my body needs. Why is it so hard to do?

Monday, September 23, 2013

Movie Monday 9/23

Whew, another hectic, exhausting week and busy weekend. This soccer schedule is killing me - it's the first time my son has played for his school (last fall, he made the freshman team but was then out all season for knee surgery). Every day is either practice or a game, with usually two games a week (3 last week). The games are scheduled for 4:30 or 5:00 and are sometimes as far as an hour away! Whoever came up with the idea of starting a 90-minute game at dinner time was definitely not a mom (or someone with ME/CFS!). 4 pm is a bit early for dinner even for hypoglycemic me, but by 7 pm, I am ready to pass out!  Silly me, I thought I'd have EXTRA time to myself during the fall, with Craig not coming home from practice until 5 pm, but I didn't count on all these game days nor on having to pick him up myself some of the time.

OK, soccer rant is over! It's Monday and that means time to talk about movies. Though we had another set of grandparents visiting this weekend, I did get a few hours to myself to rest Saturday evening when everyone else went to a local college football game. I knew I couldn't manage that, especially the same day as my son's soccer game AND in the evening. So, I took advantage of my quiet time alone to watch a chick flick:

I watched Admission, a romantic comedy starring Tiny Fey as Portia, a Princeton admissions officer. It was perfect for my mood - light, funny, and warm - and better than I expected! Portia is an uptight Princeton representative caught up in her 16th season of reviewing applications from thousands of students (and turning down most of them). She encounters an old classmate, John, played by Paul Rudd, who runs an alternative school and introduces her to Jeremiah, a gifted student who dreams of going to Princeton. Oh, and John thinks that Jeremiah might be Portia's long-lost son that she gave up for adoption! Portia grapples with her very confused feelings while trying to champion Jeremiah in the admissions process, though his background is highly unusual and most of her colleagues think he is not "Princeton material." All the while, she and John are attracted to each other. Some of it is a bit predictable, as I tend to expect rom coms to be, but overall, I really enjoyed it and thought it was high quality. The acting is excellent - you can't miss Lily Tomlin as Portia's outgrown hippie mother!, Fey is both funny and endearing, and there are even a few surprising twists here.

Have you seen any good movies lately?

Thursday, September 19, 2013

Young People with ME/CFS - the Long Road to Independence

By the time most kids hit 18, they are more than ready to leave home and get out on their own. In many cases, they've been struggling to gain independence for years already, pushing their parents away, copping that infamous eye-rolling attitude, and itching to get away from the rules and structures of mom and dad's house. Even for those kids who can't wait to leave home, college can be a difficult adjustment - learning to take care of yourself, finding out what your limits are, and dealing with the stress of juggling multiple classes, tests, projects, etc.

Now imagine all of those adjustments and struggles while also managing a debilitating chronic illness (plus a few long-term tick-borne infections!). I know that many of you don't have to imagine it - you lived through it or are living through it now. I was perfectly healthy until I got ME/CFS at age 37, so it is hard for me to think of being that sick during my college years (I definitely burnt the candle at both ends!). My own 19-year old son is going through all of this now, and I had a rare chance this morning to cram a little bit of mothering, caring, and advice into our brief time together at a doctor's appointment.

Overall, he is doing quite well in college - beyond our wildest dreams a few years ago! He just started his sophomore (second) year, he lives on campus in a single dorm room, he takes 3 classes each semester, plus an extra one each during the brief winter and summer sessions, and has so far maintained a B average (he was a straight-A student for most of his earlier years, but again, just being there in college feels like a miracle to us).

I met him at a doctor's office this morning (he goes to a college nearby) for a follow-up appointment for an injury that happened a few weeks ago. I could tell the moment I walked in the door to the waiting room that he was not in good shape. He looked exhausted - beyond exhausted in that way that only someone with CFS can truly understand - and seriously brain-fogged (again, it takes a CFSer to recognize that vacant expression!).

He told me that he had pushed WAY beyond his limits yesterday and had an equally difficult day ahead of him today. He woke up at 8 am yesterday to fit in 2 hours of math homework before his first class, took a quiz, went to a second class, then had a 3-hour Chemistry lab! That meant that he and his friends couldn't get started on their group project until almost 9 pm at night. Until he went away to college last year, he rarely stayed up past 9 pm!! He worked on the project until 2 am - classic late-night studies for a normal college student but a superhuman feat of impossibility for a kid with ME/CFS, Lyme disease, plus 2 other tick infections. Today, he has two quizzes scheduled, plus a lot more homework. He was so wiped out that he woke up and came directly to the doctor's office, without having time for breakfast or morning medicines - a real no-no for him.

He sounded totally defeated and kept saying that he had no choice - he HAD to get all of this done. I only had a half hour with him, but I tried my hardest to be supportive and remind him that he does have options. I encouraged him to talk to at least one of his professors about postponing today's quiz. He has an accommodations plan with the college and already spoke to each of his professors about his illness at the start of the semester. It has been hard for him to learn how to speak up for himself and advocate for himself.

He said to me today, "But a college student is supposed to just get everything done and be independent. I don't want to ask for special treatment and have him think I'm not capable." I gently reminded him that he is dealing with several very serious, debilitating illnesses, that his professors won't understand how it all affects him if he doesn't explain, that his accommodations are not special treatment but just a way to try to level the playing field, and that the Disability office is behind him. I encouraged him to explain to his professors how a late night studying or too many quizzes in one day affect him, how his brain just gets overloaded and stops working. He finally agreed to talk to one of the professors today about possibly taking the quiz tomorrow, so he can rest first.

Then I had him follow me to a nearby coffee shop, where I bought him a blueberry scone (his favorite!) so he at least had something in his stomach for his first class. I think I convinced him to ease up on himself and open up more with his professors. I hope the rest of the day will be easier for him. I'm so glad I happened to be able to see him this morning, right when he needed some support, though I wish I could have done more. It was hard to say good-bye and drive away.

This period of growing up and becoming more independent isn't just difficult for him; it's tough for us as parents, too. Like all parents, we hate to see our child suffer and want to protect him and keep him safe. He is only 20 minutes away at college and comes home every Sunday so I can refill his 6 overloaded, always-changing medicine reminder boxes. In between those brief visits, we try very hard not to interfere and to let him live his own life. We want him to experience all that college has to offer, including that growth toward independence. But it's a hard balance to maintain when your child has been ill for so long, and you are used to doing so much for him.

Until about a year ago when he started college, he was severely incapacitated for much of his junior and senior years of high school, due to starting his treatments for Lyme and the other two tick infections. We had to do almost everything for him, not because we were overprotective parents but because he was literally incapable of getting up off the couch much of the time (see How My Son Went from Couchbound to College for more info). We acted as his advocates, with both medical personnel and school administrators and teachers, fighting for his rights and refusing to take no for an answer. He was so sick senior year that he barely managed to graduate on time (with the help of home tutoring, exemption from all 4th quarter work and from most final exams, and working through the summer), so he had no extra energy for college or scholarship applications. I did all of that for him, except the essays, because we had no other choice and he so badly wanted to start college on time. And somehow, he did!

It's a hard transition for us, to go from doing so much for him, taking care of him, and advocating for him, to suddenly not even knowing what is going on in his day-to-day life. We try let him do things for himself and don't text him unless we need something specifically. I think he is doing very well overall - he loves college, loves being on his own, loves all the time with his friends. On days like today, however, it is hard not to just bring him back home and take care of him until he feels better!

It is a long and bumpy road to independence for both him and us, but we are grateful that he is on that road at all. Intellectually, I know that he will get past this tough period this week and be fine, but emotionally, I want to wrap him in my arms and take care of him. Old habits are hard to break. I know that all parents go through this struggle to some extent, but it is just so much more complicated for parents of kids who are ill or have special needs.

I am sitting on my hands so I can't text him...

Tuesday, September 17, 2013

Movie Monday 9/17

A day late (again) - my schedule has gotten very busy now that soccer season has begun for my son. I normally set aside afternoons (after my nap) for blogging activities, but now we are running to soccer games two days a week (picking up from practice the other days) then having a late dinner...and last week, we also had Parents' Night at the school! The good news is that I was able to go for the first time in years, and my husband didn't have to go alone. In fact, I need to leave to pick up my son in a few minutes...sigh...

Anyway, we had a very busy weekend with houseguests (my dad and his wife were visiting), but it was fun, and we did watch one movie on Saturday night when my son slept over at a friend's house:

We watched The Place Beyond the Pines, starring Ryan Gosling, Eva Mendes, and Bradley Cooper. Gosling plays Luke, a stunt motorcycle driver who travels with a carnival. When Luke returns to Schenectady and learns he has a one-year old son, he decides to leave the drifting, wild life behind and settle down. His new commitment to being an upstanding citizen doesn't last long, though, as a new friend in town convinces him to rob banks with him so that Luke can afford to support his son. Bradley Cooper plays a rookie police officer who chases after Luke during a robbery attempt. The two men's meeting not only has a dramatic effect on their own lives, but their intersection goes on to affect the next generation. I tried to choose a movie that would appeal to our disparate group that night, since it combines suspense and drama. I guess there wasn't enough action to keep my dad's attention because he ended up reading his Kindle (maybe he gave up before the bank robbery scenes!). My step mom liked it, though she didn't understand why there was so much profanity. Not sure what it means that I didn't notice that! I really liked this movie. It's a bit of a downer - sins of the father visiting on the sons, etc. - but I liked the ways that the characters' lives intersected and the domino effects down the road. It's a somewhat thoughtful yet suspenseful movie. Only problem is that none of us understood where the film's title came from! (Aha! Wikipedia says the name is the loose meaning of the name Schenectady, derived from a Mohawk word.)

Have you seen any good movies lately?

Time for the new fall TV season premiers this week! Which shows are you eager to return to or try out?

Friday, September 06, 2013

Comprehensive ME/CFS Research Initiative at Stanford

Cort Johnson has done it again - written a fascinating, complete overview on his blog of a critical initiative going on in the ME/CFS world. You can read the full article here, but I'll tell you about the high points.

Many of you have heard of Dr. Montoya's  breakthrough antiviral study that was published several years ago - he shows some amazing results in treating severe ME/CFS patients who'd tested positive for high levels of both HHV-6 and EBV with Valcyte. Some of the patients recovered so much that they were able to return to work.

Fast-forward to the present and, as Cort's excellent article explains, Dr. Montoya has now created a comprehensive research initiative for ME/CFS - that in itself is great news but making it even better is the fact that this initiative is at Stanford, the nation's #2-ranked medical school. The work done at Stanford has the potential to be widely recognized, shared, and certainly respected across the nation and the world.

Dr. Motoya has established a team of 21 medical professionals in a wide range of specialties - just to investigate ME/CFS. They are continuing the research that Montoya started a few years ago, investigating potential viral infections that might be behind ME/CFS, but also moving the research into new areas - looking at other infectious agents (including the bacteria that causes Lyme!), genetics, immunology, the brain, and the heart. In all, it sounds like a comprehensive research plan, investigating all aspects of our illness.

And it's STANFORD (did I mention that?)! The rest of the medical world will take notice.

This fabulous initiative at Stanford, combined with several other huge studies looking for immune dysfunction, biomarkers, and infectious agents in ME/CFS, gives me tremendous hope for the future - not just the future of our children but our own not-so-distant futures as well. I think we are on the brink of some discoveries that could change everything for people with ME/CFS.

I highly recommend reading Cort's entire article on the Stanford ME/CFS Initiative - it's all so exciting and hopeful! It also includes a video clip of a presentation given by Montoya.

Tuesday, September 03, 2013

Movie Tuesday 9/3

I wanted to resume my Movie Monday feature this week, then Monday quietly slipped by with the holiday weekend and the kids back home - oops! But, Ken and I did have plenty of time for movies this weekend, so here is Movie Tuesday:

With our oldest son away at college and our younger son invited to the beach with a friend, our weekend began early, on Thursday night, when he left for the beach directly from soccer practice. Ken and I had a quiet dinner for two and then watched Erased, a fast-paced thriller. Aaron Eckhart plays Ben Logan, who, as the movie opens, seems to be a normal single dad living in Belgium with his teen daughter. Ben goes to work one morning at his job as a security specialist and finds his entire place of business has vanished - the rooms are all empty and his co-workers are nowhere to be found. Soon an assassin is after he and his daughter, and they must go on the run while trying to figure out what happened to Ben's company and who wants them dead. As they struggle to stay ahead of the bad guys, Ben's own secrets about his past begin to come to light. This is a typical thriller - action-packed from start to finish with lots of suspense and surprises around every corner. It wasn't a perfect movie but is a good choice if you enjoy action and suspense.

Friday, Ken went golfing after work, and I had a couple of glorious hours to myself (after a long and exhausting day), so I rented a DVD I knew he wouldn't enjoy, Ginger & Rosa. Born on the same day in London, to mothers who are good friends, Ginger and Rosa are inseparable and grow up together. Things become complicated in their teens, though, as they both become involved in anti-nuke groups and Ginger becomes especially scared during the Cuban Missile Crisis. Rosa likes the drama and excitement of the protests and the people involved, while Ginger is truly frightened, with her fears growing as she listens to her radical father, Roland, spout his beliefs. Finally, something happens that tears their friendship apart, against the backdrop of the Missile Crisis. So, yes, this is quite a dark movie (which is why I watched it alone!) about the bonds of friendship amid the 60's anti-war movement. I liked it, though it is definitely a bit of a downer.

Sunday night, we watched The Company You Keep, starring Robert Redford and Shia LeBeouf, a political thriller which was definitely a two-thumbs-up movie! LeBeouf is a young reporter at a small newspaper in Albany, NY, who latches onto a story about a 30-year fugitive from the FBI's Most Wanted list who is finally caught. The woman, played fabulously by Susan Sarandon, was a member of the infamous Weather Underground, an anti-war group in the 60's that turned to violent means to convey their message. A security guard was killed when four of them robbed a bank, and the FBI has been unable to find any of them for over 30 years. As you've probably guessed already, Redford's character was a member of the same group and must now go on the run in order to protect his young daughter, with the reporter hot on his trail. Ken and I both really enjoyed this one - it's a smart, interesting plot and populated by a raft of top-notch actors. Our only minor complaint was that Redford (who is close to 80 now) and some of the other more mature actors are playing characters who should only be in their 50's - but, hey, it's his movie, right?

Have you seen any good movies lately?

Sunday, September 01, 2013

Finding Joy in Everyday Moments

Sunset over Lake Ontario - Selkirk Shores State Park, NY
As I mentioned in my recent vacation post, I struggle with trying to lessen the stress of my everyday life. With a family to take care of, plus my inborn drive, I tend to be busy every moment - often doing two or more things at once! - and forget to take time for myself. Of course, with ME/CFS, that often results in making me sicker.

Both of our sons are spending the holiday weekend at the beach with friends, so my husband and I are enjoying a very quiet, low-key couple of days. I woke with a killer headache yesterday and a moderate crash from the day before (long story but my college son ended up in the ER the night before and I spent Friday driving him all around town to pick him up from campus, take him to a doctor, the drugstore, etc. Don't worry - he's fine)...anyway, despite the list of things I wanted to get done yesterday, I gave in and listened to my body for once and rested on the couch with my laptop.

After I did a few productive things online (hey, I said I'm working on it!), I thought about how my husband likes to just play around with his tablet after dinner in his recliner - he'll just surf the net, look for interesting stuff, watch videos, etc. I never just relax like that without a purpose! He's been telling me about the TED talks and how interesting some of them are, so I went to YouTube and looked through the list of TED talks. I came across one that sounded intriguing (and wasn't too long - baby steps!) and ended up really enjoying it. It's called, "Cloudy with a Chance of Joy," and it's just about looking at the clouds. The speaker is warm and thoughtful and funny, and I not only enjoyed the talk but it also contributed to this same line of thinking and gave me some more ideas for ways to slow down and make space for more calm and peace in my life.

Hope you enjoy it:

And here are some of my own favorite cloud photos (as well as the one up on top) - I plan to take time to look up more:

Lines in the sky

Sky full of ridges

Snow sky

Try it! Go out in your yard or on your deck, leave the electronics inside (except maybe for your camera), lie back, and stare at the clouds.

P.S. I would love to hear from you about any talks or videos you recommend - anything interesting, amusing, enlightening. I really do want to try to make more time for myself. Please leave links or descriptions in the comments section!