Videos from the 11/11 CFSAC Meeting

The Department of Health and Human Services has posted videos from the first day of the recent CFSAC meeting in Washington on their website.

I'm not sure why they still haven't posted videos from Day 2, but there is a complete set of videos on Youtube.  This Youtube Playlist lists all of the videos available there.

And here is the agenda from the meeting so you can choose which presentations you are most interested in watching.

Thanks, Denise, for the links!

The Invisible Wall

We have returned, like conquering heroes, from visiting my family in Rochester for the Thanksgiving weekend.  We finally made it up there, after a 2-year hiatus, the trip went well, and we are all still in one piece (more or less).

I thoroughly enjoyed spending time with my family, but, of course, it was tiring.  I managed better this time than past trips, though, which tells me that I am definitely doing a little better these days (probably due mainly to beta blockers and Immunovir).  I noticed I slept better; usually sleeping away from home is a huge struggle.

I have several different branches of extended family in Rochester, so we had some sort of large social event every day, from Thursday through Saturday, which was like a marathon for me!  A single social event can totally wipe me out.  But we have learned from past mistakes and scheduled in plenty of quiet, down time at my Dad’s house in between.  In the old days, we would schedule three different visits in a single day!  I also went up to bed by about 9 pm every night, and I think that helped, too.

I thoroughly enjoyed spending time with my family, but my illness forms an invisible wall that now keeps me somewhat separate from everyone else.  There are a couple of people who understand how challenging our daily lives are, but most of my family has no idea how profoundly our illnesses affect every moment of our lives.  Of course, I don’t want to talk about our illnesses at social events; that would only make people feel uncomfortable.  It’s just that I am living in a completely different world than everyone else.

It’s not that I am hiding anything on purpose or that they are uncaring.  In fact, all of my family knows about our illnesses and most are kind and compassionate, but, as we all know, it’s just impossible for anyone not living with these illnesses to fully understand how completely they affect every aspect of our lives.  So, even in the midst of talking and laughing with my family members, I still feel somewhat apart from them.

When everyone else is standing around the kitchen (as people tend to do at social gatherings!), I am sitting down, at about the height of their belly buttons.  While others are enjoying beer, wine, and lots of cheesy appetizers, I am sipping ice water and nibbling on plain tortilla chips.  We can’t attend gatherings in the afternoon because I need my nap in order to make it through the rest of the day.  I hated having to sit on the sidelines while the rest of my family played football on Saturday.

More than those physical differences, though, are the differences that come up during conversation.  My cousins were all trading stories about taking their kids to amusement parks, Disney World, water parks, etc.  Those kinds of places are like Kryptonite for someone with CFS!  They began making plans for all of us to meet up at Hershey Park next summer to spend a weekend together (it’s a huge amusement park and water park); I could never manage a single day there and Jamie probably couldn’t right now either.

My best friend from high school has taken up running…not just any running, but marathons!  She’s running 26.2 miles at a time, and I feel awful tonight because I went to the grocery store today.  She also talked about triathlons, how much fun spinning class is, her job, and all the travel and hiking she’s been doing.  Even talking about our kids is tough because Jamie is so far from a normal teen right now.  I love her – she is still my soul sister – but we seem to have little in common anymore.  It just makes me kind of sad, you know?

I don’t want to feel these barriers between me and my loved ones.  I’m used to being a what-you-see-is-what-you-get kind of person, but that’s no longer true.  People look at me and I seem normal and healthy, but I’m not.  I’m missing the emotional closeness that comes from shared experiences.  Maybe this is why I enjoy my book groups so much – discussing books is one thing I can do just like everyone else.

I hope this doesn’t sound whiny.  I didn’t mean to complain because I truly did enjoy our trip and loved seeing my family and my old friend.  I just felt separated from them by this invisible barrier all weekend so that my happy social occasions were slightly marred. 

And then I realized there were people I could talk to who would totally understand…thanks for listening.

P.S. I discussed similar issues with social events five years ago in my post, Living in a World Apart.  I guess things haven't changed very much!

Tuesday Tidbits

That's my way of saying that I don't have time for an in-depth blog post this week, so I'll just tell you what's been going on around here!  I should be either packing or filling our 13 medicine boxes, but I don't feel like it.  Why do today what you can put off until tomorrow?  I think that's my new motto (joining "better late than never").

Well, part of the reason I'm pooped out tonight is that I went into Craig's English class today and spoke about writing and reading.  Actually, I spoke to two 8th grade classes today and two yesterday, 2 hours each time, so that really wore me out!  It was fun, though, especially talking to the kids about what books they like and recommending others to them.  I used to do a lot of public speaking and teaching (adults) in my pre-CFS career, and I do sometimes miss that kind of interaction.  Contrary to what Social Security thinks, I could never manage a full day of this now!!

We had a busy weekend.  First, Jamie and I traveled to NYC on Friday, along with another local family, to visit our CFS doctor (well, the two boys had appointments, not me).  That was fun - we ate lunch at a great diner and browsed in a very cool (and very tiny) toy store before heading home.  But it totally wiped me out!  I wasn't even driving; I was just along for the ride and tried to rest on the way home.  By 6 pm, my body hurt all over - I felt like someone had beat me up!  And I was crashed on Saturday.

I rested up Saturday morning, then we went to a get-together with our local group of families whose teens have CFS.  Having illness in common is no longer all that relevant - we have become close friends with these other families who are all great people.  The kids hung out in the basement and played games, talked, and laughed a lot, and the adults relaxed in the living room and chatted.  It is just so fabulous to have this group of people who totally understand what we're going through.

On Sunday, Jamie went to see The Immortals AT THE THEATER with his two best friends.  This was a major event, as it's been a very long time since he's been able to go out to do anything social.  He loved the movie, but unfortunately, all those activities this weekend added up, and he was badly crashed by Sunday afternoon.  So, he's been home from school the last two days - Thanksgiving break starts tomorrow, so at least he won't be getting further behind.  He did get to school last week, but he's not making much progress catching up because even when he is in school, he doesn't have much energy left for homework or make-up work.

On the plus side, his new homebound tutor for English came by yesterday.  She has lots of experience with college application essays, so she is going to help him with that, as well as catching up in his World Lit class.  I spoke with the guidance counselor today, and she thinks she has found someone to tutor him in his other subjects as well.  He used to teach at Jamie's school and actually lives right here in our neighborhood, so this could work out well.  She also told me that the school administration approved Jamie to drop one of his classes (AP Economics) and graduate 1 credit short.  That is a huge relief to Jamie, as he was furthest behind in that class.

So, that's what's been going on around here.  Very busy, as you can tell.  We are planning to spend the Thanksgiving holiday with my family in Rochester, NY.  Hopefully, we will all be well enough to make the trip.  You may remember that we had to cancel our plans to visit on Labor Day weekend.  I know it will be tiring, but I am really looking forward to seeing my family, some of whom I haven't seen in 2 years!

If you are here in the US, hope you have a very enjoyable and healthy Thanksgiving!

Summary of Latest CFSAC Meeting

I plan to write a lengthy post on school accommodations for kids with ME/CFS but am still pretty run-down and just not up to it yet.

In the meantime, I thought I would post a link to an excellent summary of the latest CFS Advisory Committee meeting (for the U.S. Department of Health and Human Services) that took place last week.  As you may recall, I had planned to go but with Ken traveling, me not feeling well, and being denied time for public testimony (they had more speakers than they could fit in), I did not go.  They didn't videocast the meeting this time due to budget cuts, so I really had no idea what happened at last' week's meeting.

Fortunately, Jennie Spotila, Board member of the CFIDS Association and ME/CFS patient (and friend), posted a clear and comprehensive summary of the meeting on the Research 1st website.  Jennie's summary is brief and easy to understand, so I encourage you to take a look.  While you're there, the blog has also posted several different people's testimony from the meeting.

I was highly disappointed to see that the CFSAC meeting did not address any issues related to pediatric ME/CFS.  As you may recall, our family - and many others - made a special effort in May to attend the CFSAC meeting in person to bring attention to this neglected and important issue.  By the end of that meeting, the committee said they'd been very impressed by all the testimony about the plight of sick kids and teens and that they would devote part of their next meeting to hearing from pediatric experts and learning more about it.  Now, I may be jumping to conclusions - perhaps it was briefly mentioned or tabled until the next meeting - but it appears that the topic was not discussed.  It required a lot of time, money, and precious energy  for all of us to attend that meeting, and it is discouraging that nothing seems to have changed.

OK, that's it for tonight.  I'm not badly crashed this week anymore (i.e. in bed) but am still feeling really run-down and achy.  Jamie is back to school this week (hurray!), but now Craig is home sick.  It seems like "just" a cold he picked up at school, but that tends to knock him out completely.  Always something with this exciting illness, isn't it?

Movie Monday 11/14

We had a rough week here last week.  Jamie was home from school from Tuesday on, and I was badly crashed from Thursday on.  Maybe we were both exposed to a virus or something.  I can drive myself crazy trying to figure these things out!  My mom and her husband came to visit for the weekend.  It was great to see them, and my mom took over the kitchen, which I really appreciated!  I had been too sick to even get groceries, so she planned meals, went to the store, and did most of the cooking.  What a relief!

I'm doing a little bit better today, though still not in great shape.  More importantly, Jamie went back to school today and is even doing a little homework now.

Despite all the sick days, we didn't watch many movies.  Jamie read 5 books last week (!) and he and I watched some TV shows On Demand during the day and on DVD with the rest of the family (mainly Bones, The Big Bang Theory, NCIS, NCIS-LA, and some episodes of Psych).  We did fit in one movie, on Thursday night since the kids were off school the next day:

• We finished off our X-Men trilogy that some friends lent us with X-Men: The Last Stand.  It was pretty good, like the other X-Men movies - lots of action and battle scenes in this one but also some interesting plot elements, where a "cure" has been developed for people with mutations (like the X-Men).  The politics of these movies have been interesting because you can see similar trends and controversies in some of our own current politics, mainly in the fear of people with differences.  All in all, it's been a good series, and the boys really enjoyed it.

Have you seen any good movies lately?

(If you are also interested in what we've been reading this week, check out my book blog.)

My CFSAC Testimony: Educational Support

It's been a very busy week here, with Jamie back on the couch and my husband out of town, but I thought I'd just take a moment to share my CFSAC testimony with you.

The CFS Advisory Committee to the Department of Health and Human Services (U.S.) met yesterday and today.  I had requested a speaking slot, after speaking for the first time at the May meeting about the plight of kids and teens with ME/CFS.  I was hoping to go in person but figured I could call in my testimony if I wasn't able to travel to DC.  Unfortunately, I didn't get a speaking slot this time - they had too many people requesting time (which is a good problem to have - our invisible community is becoming more visible!).  Then, we found out last week that my husband had to go out of town, so my going to DC became impossible anyway.

But I did turn in my testimony, and I think it will be included in the written copies handed out to CFSAC members.  Our local parent group had agreed to focus our testimonies this time on the difficulty of getting appropriate educational support for kids and teens with ME/CFS.  I have been working on a more detailed post about 504 plans and IEPs and hope to post that later this week.  In the meantime, here is my (unheard) testimony:

My name is Sue Jackson, and I have had ME/CFS since March 2002.  Both of my sons, ages 13 and 17 have it also – they’ve both been sick for seven years.  I spoke at the May CFSAC meeting with my family about the need for attention and research on pediatric ME/CFS.  Today I would like to focus on the educational challenges for children and teens struggling with this illness.

Both of our sons have managed to keep up with their classmates in school throughout their illnesses, but my husband and I fought many battles with school administrators and teachers to afford them this right.  Our sons are both very bright and are good students, and that has helped as well.  We have often asked ourselves, “What happens to kids that struggled with school before they got sick?  Or kids whose parents aren’t as able to fight for them or who aren’t as well-informed?”  The answer is that those kids, as well as kids who are too severely ill to go to school, are getting left behind.

Through much of the past 7 years, our sons have been able to attend school at least part-time, thanks to treatment for Orthostatic Intolerance.  In working to get them the accommodations they needed at school, we encountered many barriers along the way, most of them due to a lack of knowledge about ME/CFS.  One school nurse actually called our pediatrician and yelled at her for 45 minutes, saying she didn’t believe the doctor’s diagnosis of CFS because “he seems fine when he’s in school,” obviously unaware that  many kids (and adults) experience good days and bad days with ME/CFS.

We have run into teachers that simply refused to work with our son, saying that if he was sick, he needed to be on 100% homebound instruction, despite the fact that he was sometimes well enough to attend school.  When we had the backing of a supportive principal, those teachers were forced to comply with his accommodations, but in some cases, we just had to work around those teachers.

Our son’s 5^th grade teacher interpreted his newly severe cognitive dysfunction as behavioral problems, telling us that our normally obedient, straight-A student was “a defiant, cheating, disobedient child.”  In all cases, we persevered, gaining support wherever we could, from principals and guidance counselors and in some cases, calling district-level or state-level administrators.  We educated ourselves on the law and what our sons’ rights were.  All of this, and especially the hours-long, often combative meetings, frequently resulted in a relapse of my own symptoms.

We’ve actually been lucky.  Our stories are nothing compared to what we’ve heard from other parents.  Some kids with ME/CFS have outright been denied an education, even by district and state levels.  We know of many cases where parents have had to hire their own tutors and/or lawyers.  In the worst cases, parents trying to ensure an education for their very ill children have themselves been vilified, with school administrators calling Social Services with threats of removing the children from their homes.

With all of the challenges that these poor kids face in just getting through each day with the disabling symptoms of ME/CFS, it is appalling that they also have to fight for their right to an education.  Many of these battles could be prevented if school nurses, teachers, and administrators were properly educated about ME/CFS.

In March 2001, Dr. David Bell wrote an excellent article on CFS for a publication called School Nurse News that was then sent out to school nurses around the country by the CFIDS Association, sometimes accompanied by Dr. Bell’s appearance at regional meetings for school nurses.  That was 10 years ago and very little has occurred since then to inform educators and support personnel about the challenges of pediatric ME/CFS.

As I mentioned in my May testimony, we desperately need research into pediatric ME/CFS, including a full-blown population study to estimate the number of kids and teens suffering with this illness.  In addition, we need strong efforts to educate school personnel and the public about the severity of ME/CFS, its incidence in children and teens, and what kinds of support are needed to get these kids the education they each deserve.

Movie Monday 11/7

We had a busy but very nice weekend.  My dad and his wife were visiting from out of town this weekend.  It was good to see them, as always, a bit tiring, though they are easy guests. 

Jamie actually played soccer on Saturday!  Only the third time this season.  When he plays, he's been playing the back defensive line so he doesn't have to run as much, but the coach put him on the front line as striker for a few minutes, and he made an awesome goal!!  We were so happy for him - he was on top of the world.  Yes, he has paid for that exertion a bit, though he did make it to school today.  He's feeling crashed tonight, so we're going to watch a movie and chill out....

OK, I'm back!  So, movies...a kind and generous friend read here recently that Jamie was enjoying the X-Men movies, so they lent us a trio of X-Men movies, and we have watched two so far:

• Thursday evening, we watched X-Men, which I guess was the original movie of the series.  I didn't think I'd enjoy this, but I have to admit it's pretty good.  It's classic good guys versus bad guys during a time in the future when there is a growing population of "mutants," people born with special powers.  Some people fear all mutants and want them rounded up and locked away.  The X-Men are a group of mutants who have banded together to teach younger mutants and to try to keep the world safe and peace at hand.  It was engaging, with lots of action and adventure.
• Tonight, when Jamie decided he was too crashed to do any homework, we watched X-2, the sequel which follows the story as the lead bad guy (a mutant himself) launches an evil plot to get rid of all humans so the mutants can take over.  Some of the backstory and convoluted plot are a bit confusing, but we figured it out and enjoyed it.

Have you seen any good movies lately?

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

ME/CFS Groups on Facebook, Part 3

So, I heard some of you were still having trouble accessing some of the existing ME/CFS groups on Facebook that I included in my first post on the subject.  I think we have worked out the problems now!

People said they couldn't find the ME/CFS - Pacing with a Heart Rate Monitor group, so I worked with the administrator of the group, and he decided to change it from a Secret group to a Closed group (with the current members' agreement) - this will still protect the privacy of its members (posts are visible ONLY to members of the group) while making it possible for people to find the group.  So, if you are interested in joining the Heart Rate Monitor group, use this link - it should (hopefully!) work now to take you to the group's page - all you will see is the group's name.  Just click on the "request to join" button, and the administrator will add you to the group.

As for the ME Mums and Dads group (for parents who have ME/CFS), the administrator decided to keep the group classified as Secret which means it doesn't show up in searches (and apparently, the link I provided doesn't work).  So, here's what we'll do.  She made me another administrator for the group.  If you are a parent with ME/CFS who wants to join this group, e-mail me at jacksonde at comcast.net (I wrote it out that way to avoid getting spammed), and we will work together to help you find the group and get added to it.

So, hopefully, that will solve the problems - sorry for the inconvenience!

The Joy of Celebrations

A few years ago, I wrote a blog post about joy and how ME/CFS has helped me find more joy in everyday things.  I planned to kick off a series of posts about things that bring me joy, and I wrote The Joy of the Outdoors and The Joy of Friendship, but then the project sort of fell by the wayside.

All of our Halloween fun yesterday made me realize that I haven't written about celebrations, which I think are a vital element of joy in any life!

I came by my love of celebration from my mother.  When I was a kid, we celebrated everything, big and small, and I loved the atmosphere of joy and festivity.  My mom was, and still is, a major party animal, so I learned from the best!  When I had kids, I knew I wanted to do the same thing for them.  My kids love our traditions of celebration, and now that we are dealing with chronic illness, they are even more important, a way of injecting joy and fun into our lives, even (especially) when things feel lonely and dismal.

Of course, we celebrate the big holidays, though we've had to scale back a bit since CFS.  We now focus on certain elements of each holiday that are the most important to us - at Christmas, that's decorating our tree together and getting together with our oldest friends for a cookie decorating/grinch watching party (we now buy premade cookie dough!).  On Halloween, our whole family gets dressed up, often with a group theme, and goes around the neighborhood trick-or-treating (I usually just hit the two nearby cul-de-sacs).  We celebrate New Year's Eve at 8 pm since the kids can't stay up late (and we used to celebrate with their grandma who had Parkinson's and also couldn't stay up late), but they love our traditions, with sparkling juice, lots of noisy confetti poppers, and caps thrown all over the driveway.

We celebrate the little holidays, too.  We always decorate the house - over the years, we've collected themed window stickers, decorations, and holiday-themed projects the kids made when they were little.  For Valentine's Day, we give the kids little treats in the morning, hang hearts with messages written on them from their door frames while they sleep, and celebrate with a simple chocolate fondue in the evening, dipping in chunks of fruit, pretzels, and graham crackers.  One year, I even put little edible groundhogs into the kids' oatmeal for Groundhog Day!

We don't need a holiday for an excuse to celebrate.  Once or twice a year, I make our favorite enchiladas and we have Mexican Night, with a colorful serape on the table and a special orange-mango fizzy drink.  We celebrate the start of summer by going with friends to play in a creek after school lets out.  And, of course, there is always a party when we visit their grandma (my mom)!

If Jamie has had a bad week (or month) and has been stuck at home for a while, I surprise him with movies from the library or a favorite treat from the local ice cream dairy or bakery.  Celebrations can be incorporated into everyday life to add an extra jolt of joy to even our restricted lives.

So, next time you are having a bad day or week or month, find a reason to celebrate and insert some extra joy into your life! 

What are your favorite ways to celebrate?