Movie Monday 3/26

Whew...another rollercoaster week here!  First, the good news: Jamie has been steadily improving after months of being severely debilitated.  He went to 1-3 classes a day 3 days last week, had his two best friends over this weekend for the first time in months, and even made it to school for a full day today, including making up a test.  Of course, we are immensely happy about this.  It is so good to see him feeling more like himself again.  Friday after school, he even took the car out (again, first time in months), picked up a friend, and went out for a few hours.  He came home grinning from ear to ear. 

On the down side, now that we finally have Jamie up on his feet again, Craig injured his knee yesterday, and it looks pretty serious.  My husband spent 3 hours in the ER at the children's hospital with him last night, but they weren't able to tell us much - just that nothing seems to be broken.  Ortho couldn't fit him in until tomorrow, so he spent today resting it and icing it, but he still can't put any weight on it.  Craig's mild CFS is completely under control with Florinef (he's pretty much symptom-free), so he's not used to lying around.  In fact, he is insanely active, and just one day on the couch already has him stir crazy!  Worse of all, soccer season starts today, and he was really looking forward to "playing up" on the high school team with Jamie (not that Jamie will be able to play much, but he's been on this same team since he was 4).  So, we are waiting to find out how bad it is.

Anyway, I missed Movie Monday last week, so here are a few we have watched in the last two weeks:

• Jamie, Ken, and I watched The Ides of March last weekend.  It was quite good, as expected, with  George Clooney starring as a presidential candidate, with Philip Seymour Hoffman as his campaign manager, and Ryan Gosling playing the idealistic deputy campaign manager who discovers a flaw in his revered candidate. It's all about betrayal and paints a pretty dismal picture of politics!  So, a bit depressing but very well done.
• Last Monday, we all watched Hugo together.  Hugo is based on Brian Selnick's award-winning middle-grade novel The Invention of Hugo Cabret (I hadn't read the novel, though).  It is a wonderful, magical story about an orphan who lives in a Paris train station where he maintains all the clocks while trying to fix a mechanical man that his father was working on.  Great fun for everyone, not just kids!
• When Craig went to his school dance Friday night, Ken, Jamie and I watched In Time, a dystopian sci fi movie with lots of action.  It takes place in a future where time has become currency.  People stop aging at 25; from then on, they must earn more time in order to stay alive.  Wealthy people can lives for centuries and never age, but poor people live day to day and moment to moment, constantly watching the time tick down on the electronic read-out on their arms.  The movie stars Justin Timberlake as a 28-year old living in the slums, and Amanda Seyfried stars as the daughter of a wealthy man in "New Grenwich." We all enjoyed it very much - lots of action and suspense.

Have you seen any good movies lately?

Quote It Saturday 3/24

Ah, the weekend.  We were camping last weekend- which was wonderful - but it left us without our usual catch-up, clean-up time on the weekend.  So, the house is a mess and the kitchen counters are overflowing with mail, school papers, college letters, etc.  That's my main project for today!  But first, while I lie on the couch and let me beta blockers kick in so I can be more active, I thought I'd take advantage of a tiny bit of free time to post another quote from a book I read recently that really resonated with me.

The book was The Particular Sadness of Lemon Cake by Aimee Bender, a very unusual novel about a girl who can taste the emotions of the cook in the food that she eats (read my review here).  Although her unique talent might seem like fun, it is actually a disability, something that restricts her life and sets her apart from her peers, as in this scene where she finds the feelings in her meal so unbearable and overwhelming that she wants to pull out her tongue and never eat again.  Of course, it is a very different disability that the ones that we all live with, but her observations on feeling isolated struck a chord with me:

"It can feel so lonely to see strangers out in the day, shopping, on a day that is not a good one.  On this one: the day I returned from the emergency room... Not an easy day to look at people in their vivid clothes, in their shining hair, pointing and smiling at colorful woven sweaters.


I wanted to erase them all.  But I also wanted to be them all, and I could erase them and want to be them at the same time."
          - from The Particular Sadness of Lemon Cake by Aimee Bender

These feelings - being torn between loathing and longing at the sight of normal people - are very familiar to me.  Even now, after 10 years of being sick and feeling fairly well-adjusted to my new normal, I still feel pangs like this, as I described in a post last year called Exercise Envy.  In another post, Living in a World Apart, I described that feeling of being different, separate from the people around me, even when those people are friends; I found my own feelings oddly echoed in the isolation felt by the young narrator of this book.

I think it is interesting how such feelings are so universal, no matter what maladies a person suffers from.  It makes me feel less alone.

Example School Accommodations for Kids with ME/CFS

[Updated 9-17-25]

 

In the first part of this post on school accommodations for kids with ME/CFS, long-COVID, fibromyalgia, POTS, EDS, Lyme, and related illnesses, I explained some basics: getting a doctor's letter, keeping records, 504 Plans, IEPs, finding an Educational Advocate, and resources to help parents get the help their kids need in school.  

 

In this post, I list a whole bunch of example accommodations--real-life accommodations from real 504 Plans and IEPs that have worked for kids and teens with ME/CFS and related conditions.  When we first started out, we had no idea even what to ask for and certainly didn’t realize what kinds of help was available. I've included the accommodations our own kids had, as well as others I know of from other kids. I want parents to understand the full breadth of what's possible. 

 

First, consider:  

Recognize that everyone is different.  I am sharing our experiences here in the hopes that they will help you, but it is likely that your child has different needs. Deciding what to do about his or her education is a very personal, very individual decision that can only be made by you and your child. Some kids are better off leaving school entirely. In our case, home schooling was out of the question because I was also sick, and our sons both desperately wanted to be in school with their friends. So, our goal has always been to maximize their time in school while also helping them meet educational goals each year. Your goals might be different, based on your own child’s needs. There are also newer options that weren't available when our kids were in school, like online learning.

 

Advocate for your child. It is highly likely that you will have to fight for what your child needs and that school staff will say they can't provide what you're asking for at first. Read the earlier post on School Accommodations, know your legal rights, bring in an educational advocate (many work for free), and keep advocating for your child (all the information is in that earlier post). We worked with four different schools for our two sons (plus college!), and it was never easy. Don't give up. 

 

Recognize the importance of emotional development, as well as academics. We often had to keep repeating this to recalcitrant school staff: all children go to school not just for academic learning but also for emotional and social development. Spending time with peers is important, if at all possible, along with meeting academic goals.

 

Identify the problem and find someone to be on your side. Often, when the school is pushing back and refusing to provide adequate accommodations, it is because of one particular teacher or administrator. Try to find a way to work around that. When our son's teacher didn't understand in elementary school, we went to the principal (who was wonderful). When our younger son's elementary school nurse did not believe he had ME/CFS, we went directly to the principal and showed him the doctor's letter. When two teachers in middle school refused to work with his accommodations (yes, that's illegal), we chose those two classes to be the ones he took with a homebound instructor (we knew he could only manage 3 in-school classes), and we ended up working with a fabulous homebound instructor who is still a close family friend and cae to our son's college graduation party. And when the vice-principal in his high school said they did not have the funds for any homebound instruction, we went to the principal, who immediately said yes. Find an ally on the staff. Don't give up. The law is on your side.

 

Elementary School 

Our older son first got seriously ill in 5^th grade, when he was still in elementary school. He had a terrible teacher who interpreted his sudden onset of severe cognitive dysfunction as a behavior problem! She called us in for a conference a few weeks after school started and announced to us, “Your son is a defiant, cheating liar.” Our mouths just hung open. This was a kid who’d always gotten straight A’s and was probably the most obedient child in the school, a major rule-follower, always loved by peers and teachers. His brain fog was so bad that he couldn’t remember the teacher’s instructions for 5 minutes, and he couldn’t concentrate on even simple math problems. He was embarrassed by this sudden difficulty, so he was asking his classmates questions or glancing at their papers to see what was going on during classwork. His teacher interpreted this as lying, cheating, and disobeying! 

Fortunately, the school’s principal was wonderful, our savior that year. When we told her what was going on, she said, “Well, I know nothing about ME/CFS or 504 Plans, but we will figure this out together.” Then, she called in the district 504 coordinator, and we sat down and worked things out together (that was our first and last cooperative 504 meeting!). In fact, I ran into this principal just a few weeks ago, and she asked about our son … 7 years later! 

So, anyway, this is what we ended up with in our son’s 504 Plan in elementary school:

• Waive all district attendance requirements (in our school district, the policy requires that any student who misses more than 30 days of school a year must attend summer school; this was waived for him every year, from 5^th grade to 12^th. Our son ended up missing 60 days of school in 5^th grade and 90 days in 12th grade!).
• Assign a home tutor to help him catch up on missed work.
• Give extra time to complete tasks and extend deadlines.
• Shorten assignments and break them into shorter segments.
• Excused from nightly reading assignment, nightly journal writing assignment, and morning math assignment when absent (he was an avid reader anyway).
• Not grading handwriting (this 5^th grade teacher required everything to be written in cursive which our son hadn’t mastered yet and which required a lot of concentration for him to write).
• Ongoing re-teaching after absences (we had trouble getting the teacher to do this).
• Gym is optional depending on his health.
• Waiver from all state mandated testing.

Our younger son's accommodations (different school) were much the same, once we got that obstructive school nurse out of the way). 

Middle-School

Middle school, with multiple teachers, was a whole new ball game, with a whole new staff. At our first 504 meeting, they surprised us (the first of many nasty shocks) by telling us that if our son was sick, he should be on homebound instruction full-time. We argued, fought, and battled for hours until finally, the guidance counselor looked at us and said, “I get it.” She had realized what we'd been arguing that whole time: what was best for the student was for him to be in school as much as he was able. From then on, she was a fabulous ally. Two teachers outright refused to work with our son part-time, so she arranged for those two classes to be taught by a homebound tutor (another lesson: if you can’t beat them, work around them). So, his middle school 504 Plan ended up including the following accommodations:

• Waive all district attendance requirements.
• Waive all electives, leaving only the 5 required academic classes.
• Two classes will be taught by a homebound instructor (the two where the teachers refused to cooperate).
• For the other 3 classes, student will attend as much as he is able (turned out to be about 60% of the time) and teachers will provide assignments during absences. [NOTE that this was not a schedule he had to comply with--impossible with ME/CFS--but was based on his symptoms.]
• Allow extra time for tests if symptoms warrant.
• Exemption from state testing.
• Student may rest in the nurse’s office as needed (this was always in our son’s 504 Plans, but he rarely used it!)
• Modify homework assignments to reduce volume of work to only that necessary to show mastery of skills (this is sometimes a tough one for teachers to understand, but it is critical).
• Allow typewritten assignments; parents may act as scribes (this helped a lot – often our son could manage to verbally dictate to us when he couldn’t manage to write out answers himself).
• Allow student to carry Gatorade with him at all times (by then, we had learned about Orthostatic Intolerance!)
• Allow frequent bathroom breaks (an obvious result of the Gatorade, but somehow a trivial thing that teachers were prone to complain about, so we included it).
• Another boy from our local support group attended the same school, and his accommodation plan was very different. He couldn't get up in the mornings and needed that extra sleep, so he attended school only from noon until the end of the day. In addition, his plan (an IEP since it required funding) included a bus to pick him up at noon! His parents were hugely grateful to us for paving the way and fighting the battles at that school.

By 7^th grade, our son was taking Florinef for OI and had shown dramatic improvement. He no longer needed the homebound tutoring, went back to full-time school including electives and band, and was even able to take the state tests. So, those items were removed from the 504 Plan, but all the rest stayed because he still missed anywhere from 20-25 days of school a year.

 

High School 

For the first three years of high school, the 504 Plan was pretty much the same. Our son attended school full-time but missed 25-35 days a year, so the accommodations focused on reducing volume of work and helping him to catch up when he’d been absent a lot. By October of his senior year, we realized he was in much worse shape from his treatments for Lyme and other tick illnesses, so we added these accommodations:

• Homebound instruction, 2-3 hours a week, to help him keep up with his classes.
• “[He] was granted permission to reduce the number of required credits for senior status. During senior year, students are required to maintain a minimum of 5.5 credits. His current schedule consists of 4.5 credits, due to his physical health.” (this allowed him to drop one class, AP Economics).

Finally, in March of his senior year, we had one final 504 meeting because our son had already missed more than 50 days of school (he ended up missing 90 days that year) and was too sick to even manage a few hours with a tutor each week. This was the meeting where we finally brought an Advocate in, and it paid off. We should have done that years earlier! The school administrators shocked us (in a good way, for once!) by proposing:

• To excuse him from ALL 4^th marking period work, to allow him to use the last quarter to catch up.
• To allow him as much time as he needs to finish his work (through the summer, if necessary) while allowing him to graduate with his class in June. [Note, he finished his last math test the day before college started in August!].
  
• To excuse him from his AP exam for AP Statistics.

• Each of his teachers added their own specifics: most excused him from all homework, classwork, and quizzes, requiring only unit tests to be completed. His Physics teacher said he already had enough material to grade him for the year, that he’d already proven he could get an A in the class, so he didn't need to do any more or make anything else up. His Calculus teacher said he’d excuse all remaining work from the 2^nd marking period, so he can just focus on making up the more recent work.

Another teen girl in our local support group had these accommodations, in order to help her maintain social development, even though she was too sick to attend classes in school:

• All academic classes were taught by a homebound instructor (with many of the same accommodations as our son: to only show mastery, excused from certain assignments & tests, etc.)
• She could go into school for lunch period and for a twice-weekly art class she enjoyed. That helped her stay connected with her peers and not feel left behind. 

 

[NOTE: Our son graduated on time that June, won an award from the staff for overcoming adversity (!), and started college on time in the fall with his peers. See How Our Son Went from Couchbound to College for details.]

So, these are just some examples of the types of accommodations our kids have had, from second grade through high school.  There are many, many other options.  The book I recommended in the other post, A Parents’ Guide to CFIDS: How to Be an Advocate for Your Child With Chronic Fatigue Immune Dysfunction by Dr. David Bell and Mary Robinson, includes more examples of IEPs and 504 Plans. 

NOTE: If you are a parent with a child/teen/young adult with ME/CFS (or related illnesses), you might be interested in a Facebook group for parents of sick kids that I started.

 

Does your child have an accommodation plan?

 

What accommodations have helped? 

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram. 

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.  

School Accommodations for Kids with ME/CFS and Related Illnesses

[UPDATED 9-17-25: Our sons are now 27 and 31! (how did that happen?) The younger one fully recovered after 10 years with milder ME/CFS. The older one still has ME/CFS, plus two tick infections. They both did well in school (thanks to accommodations) and earned Bachelor's degrees in college. Both now live independently, support themselves, and work full-time.] 

[UPDATE 9-21: Our sons are now in their early 20's. The younger one fully recovered from his ME/CFS at age 16, after ten years of mild illness. The older one still has ME/CFS and three tick infections. Both graduated from college. The younger one is working full-time and supporting himself. The older one was able to move in with his girlfriend and live on his own and has been working about 30 hours a week this summer successfully, which is a huge step forward! I have not yet written a full blog post about accommodations in college, but they are just as important as in the younger grades. This post does provide a brief outline of how to talk to school personnel (including at colleges/universities) about ME/CFS and some accommodations in college that can help. It is at least as important to provide as many effective treatments as possible for your child/teen/young adult so that they can manage school more easily! In this post, How My Son Went from Couchbound to College, I outline some of the treatments that helped him improve enough from a terrible senior year (with 95 days' absent!) to starting college on time with his peers in the fall. You can also refer to the Treatments tab in this blog for a full summary of the treatments that have helped all of us.]

I know I’ve been promising this post for a long time (and it will probably be at least two posts), but I’ve been trying to gather some information to pass along and also wanted to wait until we got through our latest (hopefully last!) 504 meeting for our 17-year old son. We finally accomplished that two weeks ago, and I sincerely hope that by sharing our experiences, we can possibly prevent some of you from going through the same sort of challenges and difficulties we have faced over the last 8 years.

First, a bit of background for those who may not be regular readers of this blog. We have two sons, now ages 17 and 14, who have had ME/CFS since they were 10 and 6, respectively. The older son has also recently been diagnosed with Lyme disease plus two other tick-borne infections, and treatment of those has made him much, much worse this past year. In all, we have dealt with four different schools over the past eight years, negotiating accommodations of all kinds for our sons; they have been, at times, full-time in school but absent a lot, part-time in school with very limited classwork, and for our older son this year, mostly homebound. They have always been in public schools, but we have developed accommodation plans with elementary schools, middle schools, and a charter high school. 

Let’s start with the basics:   

 

What are accommodation plans?  Here in the U.S., there are two types of plans that can be developed for kids with any kind of disability, including the disabilities caused by ME/CFS, fibromyalgia, POTS, Lyme disease, EDS, and other related conditions: 504 Plans and IEPs (Individualized Education Programs). Oddly enough, these two types of accommodation plans fall under completely different parts of the legal system.

A 504 Plan can be created under Section 504 of the Rehabilitation Act of 1973, which applies to all public schools (sorry, if your child goes to private school, the law doesn’t cover him or her). Section 504 is anti-discrimination legislation, administered by the Office of Civil Rights. Unfortunately, this legislation does not provide any funding to schools, so a 504 Plan is appropriate if your child does not need accommodations that will cost the school much money (i.e. going to school part-time, teachers reducing the volume of work, waiving attendance requirements, allowing typing or a scribe, etc.). ME/CFS qualifies under Section 504 as “a physical or mental impairment which substantially limits a major life activity.”

Some kids with ME/CFS and similar illnesses qualify under the Individuals with Disabilities Education Act (IDEA) for an Individualized Education Program (IEP). This is the appropriate way to go if your child is severely disabled, if his or her level of achievement has been affected by ME/CFS, and/or if the accommodations will cost the school money. As a part of IDEA, schools can receive funding from the government to help pay for the accommodations in an IEP. Within IDEA, ME/CFS qualifies as “other health impairment”: “… having limited strength, vitality or alertness to environmental stimuli, that results in limited alertness to the educational environment, that is due to chronic or acute health problems…and adversely affects a child’s academic performance.”

So, here are some steps to get you started:

 

Get a doctor’s note that specifically states the diagnosis(es), the symptoms, and the effects on the child’s ability to attend/handle school. You can’t get an accommodations plan (504 or IEP in the US) without a doctor’s note, and the more specific it is, the easier it will be to get appropriate accommodations. Our latest note from the Lyme doctor actually spells out the specific accommodations our son needs (homebound tutoring, taking tests at home, reduced work load, etc.).

Learn the law and understand your child’s rights.  This is a critical first step. For reasons we have never understood, schools always seem to want to get by with minimal accommodations, and there is always at least one person on staff who will fight you every step of the way. You need to understand your child’s rights so that you can be an effective advocate for him or her. You can read more about 504 Plans and IEPs at ParentAdvocates.org and the ADDitude website.  Here's a helpful chart about IEPs and 504 Plans. Another excellent resource is the Parents Information Center (PIC); there is usually one in every state or region (Search for “parent information center” and your state; here is the PIC in Delaware). If your child has ME/CFS, he or she does qualify for a 504 Plan or an IEP. The school is probably not aware of the full range of accommodations they can provide, just because they haven’t encountered them in the past. In this blog post, I include a list of example accommodations. It helps to know what is possible!

 

Keep meticulous records.  As Kim pointed out in the comments section here, it is critical that you take detailed notes and keep comprehensive records of ALL discussions with teachers and administrators--print e-mails, take notes at meetings, and after a meeting, send an e-mail back to all attendees to confirm and restate what was agreed. 

Get help from an Advocate.  Under these laws, it is your right as the parents of a disabled child to bring an Educational Advocate along with you to all school meetings. We highly recommend you do this, right from the start. Without an advocate, you are probably going to encounter major battles.  Every time this happened, it stunned me--why wouldn’t the school want to help a sick child?--but it happened every time. We are very fortunate to have two parents in our local ME/CFS group who act as Advocates professionally and who were able to recommend another Advocate to us when we needed one for this last meeting (the school was strongly against our using our friends as Advocates because their son attends the same school). So, how to find one if you aren’t so fortunate? Call your state Department of Education, your local PIC office, even local colleges and universities. You are looking for someone with extensive experience in education--and particularly special education, IEPs, and 504 Plans--who is willing to serve as your Advocate. Some will work for free or charge only a small fee. Here's an article on How an Advocate Could Help Your Child. When we finally brought an advocate with us, it was like someone had flipped a switch. He barely even said anything, but just having him in the meeting changed everything--the teachers and principal who'd been fighting us all year suddenly fell over themselves to help our son. Take some hard-won advice: Bring in an Advocate right from the start.

Understand what is going on behind the scenes.  This is something else that shocked us--over and over and over again.  Know this: that when you go into a school meeting, thinking you are there to discuss your child’s needs and figure out together how to help him/her, the school administrators and/or teachers have already met ahead of time on their own and determined what they think they can provide to your child … and it’s rarely what your child needs. I know this sounds cynical, but I am one of the least cynical people on the planet (some might even say naïve and too-trusting!). My husband and I have walked out of almost every school meeting (at four different schools!), in shock and feeling like we’ve been ambushed.

Educate school staff about ME/CFS.  It is likely that the school staff (504 coordinator, guidance counselor, IEP coordinator, principal, teachers) are unfamiliar with ME/CFS and almost certainly don’t understand how debilitating it is.  I have always brought a stack of copies of informative articles to every 504 meeting to hand out. Here are some that might help:

• ME/CFS in Children: Fact Sheet for Educational Professionals (CDC)
• School Nurses Can Improve the Life of Students with ME/CFS 
• School Fact Sheet (Mass. ME/CFS Association)
  
• The Impact of Severe ME/CFS on Student Learning and K-12 Educational Limitations

When things don’t work out, get extra help.  Don’t give up! It’s not only possible you won’t get what your child needs in the first meeting, it’s likely (again, I am an optimist, but this is based on hard experience). So, if you can’t make any progress in the first meeting, bring extra help to the next one. If the principal was not present, get him or her involved; this worked for us earlier this year when our son needed homebound instruction, and the vice principal just said, “Sorry, we’d like to help, but we can’t afford it.” The principal came in, listened to a recap, and said, “Of course, we have to help this student.  We’ll have to find a way to pay for it.” (If he had needed homebound from the start, he would have had an IEP instead of a 504 Plan and the government would have paid for the tutors). Back in middle school, when a math teacher was causing problems and the principal was no help, we contacted the District 504 Coordinator. She had a lot more experience with different kinds of accommodations, and she told the school they had to accommodate our son. You can also contact your state Department of Education. If all else fails, you may need to hire a lawyer or a mediator (check with your local PIC or your state DOE). But first ... find an Educational Advocate! (see above).

So, that’s a basic outline of how to get started.  To recap, some of the best resources include:

• Your local Parent Information Center (PIC) – search for “parent information center” and your state
• The Children's section of the CDC's website on ME/CFS
  
• The Parent Advocate website
• Your state Department of Education website

When we were just starting out with all of this eight years ago, the most valuable resource by far was a book, co-written by Dr. David Bell (pediatric CFS expert) and Mary Robinson, the mother of 2 kids with ME/CFS: A Parents’ Guide to CFIDS: How to Be an Advocate for Your Child With Chronic Fatigue Immune Dysfunction. (Note that CFIDS is an older name for ME/CFS.) This book covers school accommodations in detail and was very helpful to us.

Next up, a long list of example accommodations that might help your child.
Please share your comments here with other parents, based on your own experiences (and certainly let me know if I've gotten anything wrong here!) 

NOTE: If you are a parent with a child/teen/young adult with ME/CFS (or related illnesses like long-COVID, EDS, POTS, Lyme, fibro), you might be interested in a Facebook group for parents of sick kids that I started.

Does your child have an accommodation plan?

 

What accommodations have helped? 

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram. 

 

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

Camping Season!

With this unusually warm March, we were able to go camping this weekend - just a brief 24-hour getaway, but it did us all a lot of good.  It had been a full year since we'd had our pop-up camper out of the garage!  That was partly due to being busy and mostly due to Jamie being so sick the past year. 

I wasn't sure if the camping weekend would be too much for him, but I really wanted to get him out of the house so he could enjoy this gorgeous weather.  We went to Elk Neck State Park in Maryland, a beautiful park just 45 minutes from our home.  Within an hour of setting up, Jamie smiled at me and said, "Mom, this is really lifting my spirits."  That made all the work and all the worries worthwhile!

Jamie mostly took it easy and spent a lot of time reading - in the camper and in a lounge chair outside.  I worried about him walking back and forth to the restroom (I know it's not much, but he hadn't even been out of the house in weeks) and I told him he could drive, but he managed OK.

On Sunday, we even took a little walk down to the beach along the Elk River.  Craig and his friend had been building a raft all weekend, so we went to see it.  Ken and I drove Jamie to the closest spot we could find to the trail, and he managed the short walk.

Jamie was worn out later on Sunday and Monday (but no school on Monday anyway), but he actually made it into school for 2 classes today - that is a huge accomplishment after weeks on the couch. 

I am hoping we have found the right balance to allow him to function.  I have been frantically poring over his records, trying to figure our what helps and what hurts, and trying all sorts of new things.  I backed down on his dose of Immunovir - I saw he did better at the start when he was only taking 2 pills a day, so we went back to that dose.  And he started B6 and Spirulina, two supplements that are supposed to help with the horrible herx reaction he's been suffering from due to his Lyme, bartonella, and babesia treatment.  We will see what tomorrow brings.

Meanwhile, we all enjoyed our little getaway (don't worry - we used lots of bug spray while in the woods!!).  It was a nice reminder of one our favorite family activities, and we are all looking forward to spring break now.

10 Years

March 16 already?  Huh.  Since 2002, March 1 has been a significant day for me, the anniversary of when I got sick.  I am usually very aware of that date each year, feeling some dread as it approaches: "Has it really been X years?"  I usually write a special blog post (like my posts for my 5th illiversary and my 9th, last year).  March 1 this year was a significant milestone - 10 years with ME/CFS - and yet, the day (and the week) passed without my even noticing.

In part, this is simply because I have been so focused on taking care of my son.  As regular readers know, he has been completely incapacitated for the past 9 months from his treatment for Lyme disease, bartonella, and babesia (two other tick-borne infections). Lately, my life has been entirely revolving around him - taking care of him (he hasn't been to school in weeks) and in the past two weeks, even trying to tutor him so he can graduate on time in June.  So, it's not so surprising that I didn't even notice my 10-year milestone had passed.

But I think the other factor is that, as much as I hate to admit it, ME/CFS has become an integral part of my life.  I often talk about finding a "new normal" (in fact, that is the title of my book-in-progress), and I think it has finally happened.  Life with CFS is now normal to me.  I have become used to living with the restrictions and limitations, used to popping pills all day, used to the routines that define my days.

Through avid, nonstop exploration of treatments, I have improved enough that I can live my life; it's not my old life, but it's my life nevertheless.  I have accepted that I may never completely get rid of ME/CFS, as much as I hate to admit that.  But I have learned that it is not the end of the world.  I am still here, still happy (for the most part), still living and finding joy in my life.  I feel hugely grateful for the things I do have - a loving family, wonderful friends, the means to keep pursuing new treatments - and it has become rare for me to become depressed or slip into despair.

I would still give absolutely anything - including my own moderate health - for my son to be well again, but we are working on that.  I will continue to be just as tenacious in finding ways to help him improve as I have been for myself.

This level of acceptance in no way means that I have given up hope of further improvements or even, someday, recovery.  I find lots of reasons to feel optimistic in the direction that ME/CFS research is finally taking, with more studies focused on unraveling the physiological mysteries of our illness and more possibilities for treatment.

10 years...yeah, that seems about right.  It is what it is.  10 years...no big deal, just another milestone passed.  I have found a new normal, and I am living my life.

Movie Monday 3/12

Ah, another week gone by with just a single blog post.  Sorry I have been so quiet lately - I have been 100% focused on taking care of my son.  Last week, I even began trying to tutor him because he's been too sick to work with his homebound tutors lately, so I am trying to help him make a little progress, in 5 or 10 minute periods of learning.  Baby steps.  We did finally get some good news from his high school last week that should help him to graduate on time with his class in June.  I'll tell you more about that this week - I promise!  The meeting last Thursday totally wiped me out, so I was too exhausted to write about it.

We had a much more relaxing weekend than usual, now that we have finished several critical steps in procuring financial aid for college next year.  With both our taxes and FASFA filed, plus several early March deadlines met for scholarships, we were able to ease up a bit.  Plus, Jamie felt better yesterday which put us all in a great mood!  He was able to go outside and even had a friend over for a couple of hours.  He is crashed again today, but it was worth it after so many months of isolation.

And, miracle of miracles, Ken and I were able to go out to dinner Saturday night!  It had been months since we've had any time alone together, so we were thrilled to finally use the gift certificate the kids gave us for Christmas (and the chocolate-coconut bread pudding for dessert was amazing!).  So, we only watched one movie this weekend:

• Friday night, with Craig sleeping at a friend's house, Jamie, Ken, and I watched Contagion, a real-life scary movie with an all-star cast.  It was an excellent movie but one guaranteed to leave you feeling paranoid!  It's the story of what happens when an unexpected virus jumps from pigs to humans and spreads rapidly across the globe.  It was very realistic (perhaps too much so!), showing the challenges we would face in trying to prevent the spread of a deadly virus while the CDC works like crazy (but never fast enough) to try to find a cure for the virus.  Person Zero, as they say in virology, who started the spread of the virus, was played by Gweneth Paltrow who was exposed on a trip to Hong Kong.  As she flies back to the US, she infects the people she comes into contact with, bringing the virus home with her to her husband, played by Matt Damon, and son in Minnesota.  Kate Winslet plays a CDC investigator.  It was very good but very, very creepy.  As soon as it was over, we all washed our hands and I scrubbed down all the remote controls in the family room with disinfecting wipes!  Really, I did!
• Other than that, we have continued watching episodes on DVD of our favorite TV shows:  Bones and The Mentalist.  We've now caught up with all  6 previous seasons of Bones.  During his sick days, Jamie likes to laugh, so he's been watching lots of episodes of The Office.  The first time I saw the show, I just thought it was stupid, but I have to admit it has grown on me and now, I laugh as hard as Jamie does!  Other shows Jamie and I like to watch On Demand on sick days include Alcatraz (fabulous new show!), The Finder (a Bones spin-off), New Girl, and Suburgatory, plus both NCIS shows.  We also recently caught the new pilots of Awake and Touch, both really awesome and unique.  Way too many sick days lately, as you can see!

Have you seen any good movies lately?  What favorite TV shows keep you company on crash days?

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

Movie Monday 3/5

Well, with so many crash days (weeks?) lately, I missed several Movie Mondays here, though we have watched quite a few movies, trying to keep our spirits up.  So, first a very quick recap of the past few weeks.  I grabbed a bunch of classics to share with the kids (not classic-classics but great movies from the past 25 years or so), plus a few more recent DVDs:

• The Butterfly Effect - one of my all-time favorite movies, about time travel and cause-and-effect
• Rainman - the kids loved it and have been quoting from it nonstop!
• Proof - excellent romantic comedy with emotional depth starring Gweneth Paltrow.
• Secret Window - Johnny Depp in a creepy role based on a Stephen King story; Jamie loved it!
• The Green Lantern - yet another superhero movie - lots of action & special effects - I'm getting sick of them but the boys and my husband enjoyed it.

Plus, Ken and I watched some DVDs on our own recently:

•  Last Chance Harvey - Ken and I enjoyed this mature romantic comedy starring Dustin Hoffman and Emma Thompson.  Hoffman is a harried jingle-writer whose talents are being replaced by digital media who travels to London for his daughter's wedding.  He feels out of place among his ex-wife and her new husband, to whom his daughter has become close.  Thompson is a single Londonite with a fairly dull life who crosses paths with Hoffman's character.  It was a pleasant, light, enjoyable film (and no heart-pounding suspense for those who can't tolerate it!)
• Wall Street: Money Never Sleeps - I was hoping we wouldn't have to remember much from the first Wall Street (1987) to enjoy this sequel, and we didn't!  Michael Douglas reprises his role as greedy Gordon Gekko, leaving prison as the movie starts after serving his time for racketeering and money laundering.  But he's not really the main character in this sequel; that would be Shia LaBoeuf as Jake Moore, an up-and-coming young Wall Street genius who happens to be engaged to Gekko's estranged daughter.  When the 2008 stock market crash and banking failures threaten his livelihood and his dreams, Jake looks for a way out.  We both enjoyed this movie very much, and you don't have to be familiar with the first one to watch it.
• Win Win - My favorite of this group, Win Win is a warm and clever movie about an ordinary family man/small-town lawyer/wrestling coach in dire financial circumstances who finds a legal loophole that allows him to be paid as the guardian for an elderly client.  His plan goes awry, though, when the man's teen grandson appears, with no one to take care of him.  Paul Giamatti is excellent as the main character with newcomer Alex Shaffer as the boy who turns his world upside down.  Plenty of funny moments but also warm and tender.

 Have you seen any good movies lately? 

Quote It Saturday 3/3

It's been a very long time since I've posted a Quote It Saturday post; I am usually too busy on weekends for any blogging, but I am feeling rather crashed today and decided to ignore my to-do list for one day.  The world won't end, right?  Phone calls, taxes, scholarship applications, and e-mails will all still be there tomorrow.

So, today's quote...a few weeks ago, I was reading Breathless by Dean Koontz, a magical, mystical, thought-provoking novel nothing like the Koontz horror novels I used to read years ago (read my review here).  I actually marked several pages with quotes I wanted to write down and remember, but one in particular really spoke to me.  It's from a character who suffered years of abuse as a child and teen who finally found the strength to attack her abuser and escape. Interestingly, I thought it also applied perfectly to some of my experiences in dealing with chronic illness:

Despair was an emotion too intense to sustain for long.  Somehow, she had allowed her despair to mutate into despondency instead of into desperation.  Desperation was energized despair; it would have much sooner led to action, heedless of consequences.  Despondency was the dismal incapacity to hope, and hopelessness fostered apathy.
          - Cammy in Breathless by Dean Koontz

This really struck me because I had been feeling some despair about the time I read that passage.  The day before, I had finally shed my despondency over my son's condition and had taken action on several fronts: I e-mailed two doctors who have written extensively about their theories that I thought might apply to some of my son's recent struggles, I had pored over records of my son's recent symptoms, and I had requested a medication change for him from his doctor.  In short, my despondency had shifted to desperation - energized despair - and I felt so much better for having taken action.

Despair is common in our lives; even after a decade of living with chronic illness, it lurks in the shadows waiting to descend upon me during difficult times.  And I believe strongly in the power of hope and in taking action.  These lines just crystallized my own thoughts and beliefs.

How about you?  What have been your experiences with despair, despondency, and desperation?

A Very Brief Respite

I know I haven't been writing here much lately.  I actually haven't been writing much of anything - my CFS blog, my book blogs, certainly nothing that might actually earn me some money. 

I have been struggling lately, both physically and emotionally, and feeling completely overwhelmed.  In addition to the usual stuff (virally-triggered winter crashes, Jamie's condition), the past few weeks have brought additional stresses.  Craig, who is rarely sick, spent almost two weeks home from school, though he went back today and is now feeling like his old self again.  The stress level has risen considerably, thanks to ongoing battles with Jamie's high school over providing him with the support he needs.  As sick as he's been, the standard accommodations that have helped him through the past 5 years just aren't enough this year.  We are still trying to resolve those problems, so I'll provide some details later - hopefully, details that can help other families.

So, by last week, I felt like I had reached my limit, like I was just going to explode if I didn't somehow get some down time by myself.  I called some good friends (who also have a son with CFS) and asked if I could use their rental beach condo (obviously it's the off season!) for a brief respite.  They are so wonderful (and of course, totally understood how I was feeling), they actually brought the key to me that night.  The next morning, with both of my kids still lying in the family room and the TV and video games still blaring, I just packed up and took off (lest you think I am a bad mother, my "kids" are teens).  I'm not usually so spontaneous (I'm a planner and list-maker!), but my husband supported me and I desperately needed to get away.

Oddly, it took me a while to actually relax.  I enjoyed the 90-minute drive, listening to an audio book and trying my best to leave my problems behind.  When I arrived, I walked around the empty condo, wondering what to do with myself.  I chose my bed, fiddled with the TV a bit, unpacked my meager provisions, and texted compulsively with everyone back home.  I had some lunch (left-overs I brought with me) and gratefully crawled under a fluffy comforter for my nap.

That did the trick, and I finally began to relax.  I read my book, and watched hours and hours of The Pillars of the Earth miniseries which I'd picked up at the library on my way out of town.  I went out and sought yummy take-out for dinner, spent less than 2 minutes doing dishes (wash 1 plate, wash 1 fork), and spent lots of time lying on the couch.  I attempted a short walk on the beach the next morning (the wind was monsoon-like!) and stayed at the condo until after my nap, then drove back home listening to my audio book.

Of course, everything was still waiting for me when I got home: a messy house, sick kids (though one was temporarily feeling better), and nonstop, overflowing to-do lists.  But I felt better, calmer, well rested, and more able to cope. I think I was in such bad shape last week that I may have even scared my wonderful husband a bit; he knew Friday morning he was going to need to go to Urgent Care for a bad infection, but he didn't tell me about it until I called that night from the beach!  I'm lucky to have such a supportive family.

So, my little 24-hour getaway wasn't much, but it definitely helped.  It was fabulous - and strange - to have no one to take care of but myself.  I know I need to do a better job on a daily basis of taking care of myself, but it's hard to do in the midst of so much stress and constant urgencies.  Here I am again, another week that's being spent frantically trying to make calls and e-mails to get my son the support he needs at school, managing one or more sick kids at home every day, and trying to still take care of my family.  But perhaps I am slowly learning this lesson; I spent a half hour out on the deck, in the (cold) sunshine, reading my book this afternoon.  Every little bit helps, right?

How do you make sure to take care of yourself in the midst of chaos?  I'm open to suggestions!