Thursday, March 28, 2013

Post-Event Crash

As most of you know, I have generally been better in recent years, thanks mainly to beta blockers and Imunovir. I have more good days and fewer bad days. I can take walks and do some light weight lifting without going past my Anaerobic Threshold. I can even go to the grocery store without crashing the next day (on a good day with all conditions just right!). I have been baking again and cooking more for my family. And I spend far less time lying down than I used to.

But last week, I was reminded that despite all these wonderful gains, I am still held captive by the restrictions inherent in ME/CFS. It was an unpleasant reminder.

We had a very active, exhausting weekend. My dad and his wife were visiting. They are easy guests, but it is still different than being home alone. They were here for my uncle's funeral. He grew up near here (a fact I never knew before!), so the funeral was just a half hour from our house. Saturday was a very long and tiring day: visiting hours at the funeral home from 10 am - 11:30, church service at noon, graveside service at 1:30 pm, and lunch at 2:30 pm. I knew this would be like running a marathon for me, but we were prepared to leave early if we had to and drove separately from my dad.

Miraculously, I made it through the entire day! Just the late lunch alone was a big deal for me, but I packed plenty of snacks and guzzled a 12 oz. V-8 juice (for the sodium) before the church service. I wanted to be there for my family, especially my aunt and cousins, and I felt pretty good, so I hung in there. We finally got home at 4:30 pm, and I went right to bed for a very late nap. I slept soundly until 6 pm and probably could have just slept through the night, but we did have houseguests. It was a very low-key evening - we ordered pizza and watched a DVD - but the damage had been done.

I didn't feel too bad on Sunday - just very tired - so I went ahead with my plans to make a big corned beef dinner for St. Patty's Day. My dad and his wife left early Monday morning, my husband went to work, and the kids to school...and then I collapsed!

Lately, when I do too much and crash, it only lasts a day, so that's what I was expecting - maybe two days since this had been quite a ways over my limits. Each morning, I woke up expecting to feel better...and instead, I felt worse and worse. This was a severe crash - bad aches, sore throat, no energy, total exhaustion. I tried to listen to my body and stay on the couch - thankfully, it was a normal week, with the kids in school and my husband around in the evenings to help out. Finally, by Friday I felt a little better. Not great yet, but well enough to manage the grocery store (and frustrated by my lack of productivity all week), I thought. By Friday night, I felt awful again and woke up on Saturday morning in my worst state yet. My husband was very supportive and made me stay on the couch. Finally, on Sunday - a week later - I began to improve.

This week has been another rough one. I am feeling better, but my husband has been out of town all week, and my older son is home on spring break. Given his own health problems, that means a week filled with doctor's appointments, lab tests, etc. plus I am doing all the stuff my husband usually helps with - getting up at 6 am to drive Craig to school, doing dishes, driving to and from all kid stuff. I've been pushing my limits all week...and have been cranky and exhausted as a result.

So, once again, CFS has put me in my place and reminded me who's boss. I have no regrets - I am glad I was able to manage the funeral for my family's sake (and my own, too). I know that a couple of years ago, I never would have made it to 4 pm and would have felt far worse all day. But it is discouraging to be reminded so starkly that my life is still governed by these arbitrary limits. I can not skip (or apparently, postpone) my afternoon nap. I can not manage an all-day event or social occasion without paying a steep price for days or weeks afterward.

Don't get me wrong - I am grateful for the improvements I have made and for all of the things I can do now. But in the big picture of life, these are small gains - meaningful, yes, but my life is still defined more by what I can't do than what I can do. I would have loved to walk with my friend in her MS walk last week, but 3 miles is way beyond my capabilities. I am dying to take my kids to NYC to see all the sights, but I can only manage a couple of hours at a time before needing to rest. We haven't been to Disney since our big teen boys were ages 5 and 2. I am thrilled to be able to take walks again, but I am limited to 20-30 minutes at a very slow pace, every other day.

I really try to focus on the positive and on what I can do, not what I can't, but these last two weeks have been difficult. On the plus side, we are taking a little mini vacation this weekend, so that is something to look forward to! I am trying to take care of myself today and rest more.

Hope you all have a good, relaxing weekend too!

Monday, March 18, 2013

Movie Monday 3/18

We had a long and tiring weekend. My dad and his wife were visiting, and we spent all day Saturday at my uncle's funeral nearby. Visiting hours in the morning, church service at noon, graveside service at 1:30, and finally, lunch at 2:30. Believe it or not, I managed the whole thing (with the help of snacks in my purse and a big, salty V-8 juice before church). We finally got home at 4:30 and I went right to bed - very late for my nap, but I slept soundly until 6pm. I probably could have just slept all night if we didn't have guests who were waiting for dinner! I was totally useless by that point - limp as a wet noodle - so we ordered pizza and watched a DVD in the recliners (our family room is now ALL recliners - love it!) Surprisingly, I wasn't in too bad of shape on Sunday or today, just very tired (still). So, here's what we watched:

Ken picked out Total Recall from the Redbox. This is a remake of the classic Arnold Schwarzenegger sci-fi action flick from 1990. This new one stars Colin Farrell as Douglas Quaid, a factory worker living in a dystopian future where chemical warfare has made most of the earth uninhabitable, except for the United Federation of Britain and The Colony (Australia). People travel between the two via a super high speed train that travels through the center of the earth along a tunnel. Douglas commutes to UFOB each day for his job working the assembly line for police robots. He loves his wife but is fed up with his dead-end job (you would be, too, in this depressingly bleak world). He gets lured in by an ad for Rekall, a service that implants fake memories in your brain so that you can have whatever past you dream up for yourself. He chooses secret agent, but the process is aborted when it is discovered that he really was a secret agent in his past. Things get confusing from there, as Douglas is pursued by government agents and police, though he still can't remember this past life they claim he had. This is a very fast-paced movie with plenty of action. The females among us thought it was good but a bit too action-y, but the males (my husband son, and father) all loved the chases and fights. I have to admit that seeing a car chase with floating mag cars was something new!  I did enjoy the sci-fi plot, too. Lots of suspense and a pulse-pounding pace kept us all on the edge of our seats.

Have you seen any good movies lately?

Thursday, March 14, 2013

Exciting New ME/CFS Research Looks At Infections

I am way behind in reading up on recent ME/CFS research, just like I am behind in everything else these days! So, this update was posted on Phoenix Rising back in February, but I am glad I kept it sitting open on my desktop all this time!

Ian Lipkin, a superstar in the research world of viruses who worked on the XMRV lead, is heading up a new research initiative to try to uncover the cause of ME/CFS. They already have 400 CFS patients enrolled in the study with 400 healthy controls, and that number by double by the end. They are using advanced methods to search for likely pathogen candidates, plus looking for protein and immune abnormalities that could point to previously undiscovered pathogens.

The details are summarized in this excellent article on Phoenix Rising in simple, easy-to-understand terms (there's even a nifty diagram!). Check it out.

So, rejoice! Perhaps by the end of this year we'll have answers to some of the many questions those of us with ME/CFS face - exciting times!!

Monday, March 11, 2013

Movie Monday 3/11

Craig finally went back to school on Friday!!  Hurray! Even better, he didn't crash afterward, worked on make-up work all weekend, and went to school today, too! He seems back to his old self - what a relief for all of us. Of course, we are never all well for long - Jamie came home from college on Sunday with a bad cold. You know how that affects CFS. He went back to campus last night with a pile of extra medications and is trying to take it easy this week.

Well, anyway, Ken and I enjoyed a great movie on Friday night:

We watched The Kids Are All Right, a movie I have wanted to see ever since its theatrical release. It was very good, with a fabulous cast. Julianne Moore and Annette Benning star as a gay couple who have two teenage kids. Benning's character is a doctor who is a bit uptight and controlling. Moore's character is more of a hippie-type who is trying to start a landscaping business. They seem to live a nice, quiet life together, until their son decides he wants to find out who is biological sperm-donor father is. His sister, who is 18, contacts the donor agency, gets a name, and sets up a meeting with him, played by Mark Ruffalo. Things begin to spin out of control from there. Ken and I both enjoyed this drama/comedy - the cast is all excellent, the story is engaging, and there's even a great soundtrack behind it all.

Have you seen any good movies lately?

Monday, March 04, 2013

Movie Monday 3/4

Yet another long week of being mostly housebound with my son, but we are finally seeing signs of improvement. He did perk up a bit, starting on Friday, and had a decent weekend. He was finally able to do a little bit of make-up work for school, and he had a friend over for a few hours on Saturday. The idea was that they would just chill out and play video games, but they went outside for a walk in the woods for a half hour. The poor kid hasn't left the house in almost a month (except for doctors and surgery!) and hadn't seen any friends at all, so it is hard to take it easy when the energy finally comes back - I'm sure you all understand that! We were hoping he'd be back in school today, but he slept until 11 am and is feeling wiped out again. Hopefully, he will get back to at least partial days this week.

So, he and I watched a lot of TV again last week. He is really enjoying old episodes of Roseanne, especially now that David has shown up, played by one of his favorite actors from The Big Bang Theory. When our college-aged son came home on Sunday for the day, we caught up on 3 episodes of Arrow, an excellent new superhero show. And we watched a couple of movies this weekend:

Friday night, we watched The Bourne Legacy with our son. We all enjoyed it. It picks up where the last Jason Bourne movie ended, with the CIA and the public all in an uproar over the secret program that came to light. Now we find out that there is another super-secret program in danger of being exposed with all the publicity. They try to shut it down, but one of the super-soldiers they've created escapes....and the chase is on. Our son complained that there wasn't enough action in the first half of the movie and too much backstory, but the second half of the movie had plenty of action to satisfy him!  The movie was fast-paced with an intricate, complex plot and plenty of suspense.

Saturday night, Ken and I watched Looper, a thoughtful, in-depth sci-fi story set in the future. It's a time-travel story, so it is somewhat complicated - we had to hit pause at one point and try to figure out what was happening in which year - but that's what I love about time-travel stories! The basic plot is that in the future, it is impossible for criminals to get rid of bodies because everyone is electronically tagged, so there are hired assassins called Loopers who wait 30 years in the past. At a designated time, the  victims are sent back in time and  - bam! - the Looper kills them and disposes of the body. One Looper, played by Joseph Gordon-Levitt, is saving up for his retirement, until the day one of his intended victims turns out to be an older version of himself, played by Bruce Willis. I hadn't wanted to watch this movie because of the violence, but it turned out to be a very good, thought-provoking movie, incorporating all of my favorite time-travel themes.

Have you seen any good movies lately?

Saturday, March 02, 2013

Eleven Years Ago Today

Eleven years ago today, I woke up with an incredibly sore throat, feeling achy all over, and thought I had caught a virus. You all know how that story ends.

It is still amazing to me that my life changed so dramatically that day, and I had no idea what a momentous occasion it was. In fact, I didn't even stay in bed. We had planned on taking a day trip to Baltimore for a little winter getaway and taking the kids to the National Aquarium. We went ahead with our plans because we were all looking forward to it. My memories of that day are both foggy and remarkably clear. I spent the whole day feeling so very sick: the pain in my throat more severe than anything I had experienced before, so lacking in energy that I had to lean against the handrails as we walked past the aquarium exhibits, and my mind feeling like someone had stuffed it with cotton.

Looking back, though, I recognize that how I felt that day is exactly how I still feel now, 11 years later, during a severe crash. ME/CFS arrived that day, all of a sudden and yet completely without fanfare. How could something that changed my life so completely start in such an ordinary, insignificant way? It would be months and months before I realized my "virus" wasn't going away and years before I really accepted that.

March 2 - my Illiversary - used to be such a significant day for me, a reminder of all I had lost. Now it just feels like any other day. Yes, my life is dramatically different than it was pre-March 2, 2002, but I have adjusted and adapted to my "new normal." I'm no longer lying on the couch waiting to get better; I have long since resumed living my life. It is just a different life than it was before. I still have many restrictions and limits that define each day, but I have tirelessly researched treatments and have found several that have helped me get up off that couch and resume some version of my life (primarily treating sleep dysfunction, Imunovir, low-dose naltrexone, and beta blockers).

It's a different life, but it is mine.

Friday, March 01, 2013

New ME/CFS Website Offers Support

I have still been tied up taking care of my son, with little time for any writing or blogging, but I wanted to take a moment to tell you about a new ME/CFS website that an online friend of mine has launched that I'm really excited about.

The site is called MEcuperate, and one of the things I like about it is its very positive and life-affirming focus, as you can see just from its name. Its focus, as explained on the homepage, is very similar to that of this blog - to help people to LIVE with this illness, with emphasis on support, encouragement, and inspiration.

There are many informational portions - including Managing ME, Recipes, and Useful Links - of the website, but its real potential comes from its interactive aspects.

So, get started by registering for the site with a username and password. Then you can participate in its discussion forums or add your comments to any of the areas of the site, including recipes, pasttimes, crafts, and many others.  Two areas I am most excited about are the book club and movie/TV club, where participants can discuss books and movies. The first Movie Club selection is Skyfall, so once you are logged in, feel free to add your thoughts and comments!

I'm excited about this new way for people with ME/CFS to connect with each other and hope you will go check it out!