Living a Cautious Life

As anyone who has lived with ME/CFS for any length of time comes to understand, the most effective way to manage this complex, debilitating illness is also the most difficult: live within your limits.  As Bruce Campbell puts it in his well-known (and worthwhile) self-help courses, we need to "live within our energy envelop."

This is easier said than done.  I struggled mightily with this concept during my first years of illness because it goes against my natural tendencies.  I like to be exuberant and spontaneous, openly expressing the joy and excitement I feel in my life.  I was actually quite the wild party girl in my youth, a trait I inherited from my mother for whom "moderation" is a bad word!  So, to not go all out and do everything I wanted to do as soon as I felt well enough in those early years was pure torture for me. 

As a result, my first years with CFS were spent in a rollercoaster existence, swinging from horribly crashed to feeling almost normal again.  At first, before I had a diagnosis or had even heard of CFS, I was certain I was well again each time I went into one of those good periods.  The ups and downs seemed random to me - I didn't see the pattern at first (who would ever guess that exercise would make you sick?) - so I continued to swing back and forth.  The good times were exhilarating, but the crashes were devastating every time and often lasted for weeks or months.

Once I learned about ME/CFS and the exercise intolerance/post-exertional crashes, I slowly - very slowly - learned that I could limit the severity and length of the bad times by reining myself in during the good days.  More recently, I learned that I could use a heart rate monitor to more accurately measure when I was doing too much and was in danger of triggering a crash.  So, now I live a cautious life, being careful to stay within my limits, restricting my activity at all times, and living very cautiously.  And it does work - severe or long-lasting crashes are rare now and most days I am able to function fairly well, as long as I don't do too much (of course, this is not only due to activity restriction but also to piles and piles of medication).  I don't like living so cautiously, but it sure beats spending whole months lying on the couch, too sick to do anything at all.

And now I am watching my son go through this same learning process.  He has had CFS since he was 10 years old, so this is nothing new to him, but until his battle with Lyme and other tick infections began a few years ago, Florinef allowed him to do almost anything he wanted.  Besides, I have been guiding him and helping him to limit his activities all these years.  He turned 18 last week and is headed off to college tomorrow (!), and, as he keeps reminding me, he is now an adult and needs to make his own decisions.

Last weekend during a family vacation, I watched him out in the yard playing soccer with his cousins.  He was having a ball, but I was having a heart attack, watching him from the deck!  Earlier this week, trying to fit in lots of time with his friends before they went off to different colleges, he told me he had planned a hike in a local park one day and tennis with another friend another day.  Tennis!  I tried to keep quiet (no, really, I did...for a minute or so...), but I ended up telling him that was too much, that he had to save up his energy for moving onto campus this weekend and starting classes next week.  We got into an argument over it, with him reminding me again that he is an adult.  I know that, and I know that he will be making all of these decisions for himself starting tomorrow...and probably making a lot of mistakes, too.

I am trying to let go, but I resent that he has to worry about this in the first place.  It's one thing for me, at 47, to be living a cautious life, living within my limits and carefully restricting my activities.  But he is only 18 years old and heading off to college!  My own college years were characterized by reckless abandonment.  Isn't that the essence of youth?  Freedom?  It breaks my heart that he has to live this cautious life, though of course, I am grateful that he is able to go to college at all, even with so many restrictions and cautions.  This illness is just so unfair, especially when it affects children and young people.

Step by step, day by cautious day...

Movie Monday 8/20

Sorry I missed Movie Monday - and everything else! - last week.  One more week of insanely crazy busy and then hopefully things will slow down to just normal crazy busy.

We spent a nice weekend with my family.  I was able to relax completely on Saturday and enjoy my family's company, especially my wonderful niece and nephew and little cousins.  But I woke up at 6 am Sunday morning, with the to-do list spinning around in my head again! 

Anyway, movies.  Here are the movies we enjoyed the past two weeks:

• Last weekend, with Jamie and Craig both occupied with friends, Ken and I watched Salmon Fishing in the Yemen.  Yes, it is a bizarre title, but it's a good movie, better than the average romantic comedy.  Emily Blunt stars as Harriet, a British consultant who manages the affairs of a wealthy Middle-eastern Arab named Sheikh whose latest project is to bring salmon fishing to the Yemen River in the desert region where he lives.  The British government is behind this crazy-sounding plan in order to create a good PR opportunity in the Mideast and assigns Fred, an expert from the national Fisheries department played by Ewan McGregor, to help Harriet.  What follows is funny and sweet but also has some emotional depth.  We both enjoyed it.
• The next night, we watched Chronicle with the kids, a movie Jamie has wanted to see for a long time.  It was completely original, a sort of sci fi fantasy type movie.  It features three high school boys who discover a strange spot in the woods that gives them mysterious powers.  It is mostly shot as if with a handheld camera (one of the boys brings his video camera everywhere with him).  As time goes on, their powers grow.  At first, it's all fun, but then things get serious...and then it all starts to go awry.  It was fast-paced and suspenseful, though quite dark.
• Last night, after arriving back home from our weekend, we watched Men in Black.  We had all seen it before but enjoyed the funny, action-packed movie again.  Will Smith and Tommy Lee Jones are both great in it!

Have you seen any good movies lately?

Quick Update and Good News!

Sorry I haven't been posting much - far too busy this week for even a Movie Monday post - I will try to catch up next week.  This morning I need to bake a gluten-free/dairy-free cake, bake GF brownies, refill our 12 weekly medicine boxes, shower, and pack for a weekend with my extended family.  Yeah, that's all.  So I really do have time for just a quick update - I thought I should at least share some good news...

The college's Disability Office called on Monday to tell Jamie they found him a single room.  It's not ideal - no a/c (in Delaware!), no private bathroom - but it IS a single, on the first floor, in a building a few blocks from where his classes will be.  So, Jamie finally made his decision:  he is going to try living on campus and will take 3 courses this first semester.  It took some convincing to talk him down from 4 courses - hopefully, he will be able to handle three.

So, we are taking the plunge!  Next week, we need to pay tuition, find out how he'll manage a restricted diet in the dining halls, outfit his dorm room, call the Transportation Department about parking, and then, on Saturday, help him move in!

Meanwhile, yesterday was Jamie's 18th birthday!  He is officially an adult now - yikes.  We took him out for a steak dinner (thankfully, his favorite meal is naturally gluten and dairy free) and celebrated with a gluten-free/dairy-free banana cake with "cream cheese" frosting!  Everyone LOVED the cake (I don't think they even noticed the frosting was non-dairy), and Jamie said he will be asking me to make that exact cake for his birthday every year until I am old and senile.

Thanks for all your encouragement and support these very difficult months - we still have a great many challenges ahead, I am sure, but things are definitely looking up.

Feeling Cranky

I was trying to think of a clever title for today's post then decided to just go with the straight truth.  I am in an awful mood this morning, feeling run-down, worn out, sick of being so busy but never getting anything important done, and just wanting to crawl back into bed.

You know that saying, "she got up on the wrong side of the bed today"?  Yup, that's me.  I had trouble getting to sleep last night, so I woke up still tired this morning, even though I managed to sleep until 8 am (late for me) and stayed in bed until 8:30.  I am just feeling cranky and blue.  Life lately feels like I'm running on a hamster wheel - busy, busy, busy all the time but never accomplishing the stuff that's really important to me.  This week, I spent all my days handling health insurance problems, making phone calls and going to meetings to arrange accommodations for my son in college, running errands, making doctor's appointments, refilling medicines, ordering supplements, etc.  Being sick is a full-time job!

One of the personal goals I have is to have fun - seriously, I had to write that down as a goal.  And the sad thing is that it's still not happening.  Reading for 15 minutes before my nap each afternoon and before bed at night is pretty much my sole source of fun these days.  I don't do anything for myself.  I feel like my life is never-ending obligations and responsibilities.  And did I mention that I am fed up with this restricted diet?  I want a piece of pizza!  Actually, I just want my morning bowl of oatmeal or a piece of freakin' toast.


See?  I told you I was feeling cranky.  I usually do pretty well at maintaining a positive and optimistic attitude, but I just feel too worn out to bother today.  I feel as if I am on the verge of tears. 

I'm a bit worried because sometimes feeling depressed is a sign of an impending crash for me.  Anyone else get that, too?  I'll have a sudden bout of blues, snapping at my husband, crying over trivial things, obsessing over minor issues, and then the next day - bam!  Down for the count.  To be honest, a crash actually sounds almost good right now.  Aw, you know I don't really mean that - certainly I now first-hand how awful that feels - but it would at least be an excuse to forget about the to-do list and just rest and read.

I know I should just do that anyway - forget the to-do list and take care of myself.  But then who is going to refill the medicine boxes today?  And I am weeks behind schedule in ordering review books from the fall catalogs.  And Jamie needs help on one of his last remaining essays for high school.  And we need to pay bills this weekend.  See what I mean?

OK, I am done ranting.  I am going to try a brief foray outside where it is actually a pretty nice morning for a change (it's been too hot and humid to spend time outside all summer).  And, yes, I will try to relax some today and take care of myself for a change.  Thanks for listening, as always!!

Movie Tuesday 8/7

Somehow Monday slipped away with no time for a CFS Blog post.

We are all doing a bit better this week - thank you all for the wonderful supportive comments and encouragement last week.  Now that we have faced reality and gotten past the emotional part, we are all feeling more ready to deal with what is coming and make some decisions.  We have a meeting with the Assistant Dean of Engineering this week, and my doctor's office just called to say the Special Housing Request form and handicapped parking form are ready to be picked up.  So, we will get our questions answered about engineering curriculum and part-time (a good sign:  the Dean told me on the phone that he has had other engineering students with CFS and understands their needs!!), file those forms, and then help Jamie to make his decision...whether to live at home and just take a class or two or to try living on campus and take the minimum required classes to be considered full-time.  Either way, it will work out.

So, as you can imagine, we were in need of some good distractions this weekend after our emotional week!  We watched two good movies on DVD:

• While Craig went to the actual theater to see the latest Batman movie with friends, Ken and Jamie and I watched a movie that Jamie's wanted to see for a long time: Gone.  In this heart-pounding thriller (seriously, take your beta blockers before watching this one!), Amanda Seyfried stars as the victim of a kidnapping whom no one believes.  She claims to have escaped from a violent man who held her captive in a hole in a local park, but police never found the hole nor any evidence of the crime.  Now, she comes home from work one day to find her sister missing, and she is convinced that the same guy has come back to seek revenge on her for escaping...but of course, no one takes her seriously.  So, she strikes out on her own to find this dangerous man and rescue her sister.  This is one action-packed movie, filled with chase scenes and high tension that kept us all guessing.  We enjoyed it, but I wouldn't advise watching it right before bedtime!
• Sunday night, we all finally had a chance to watch Sherlock Holmes: A Game of Shadows, the second in the newish series starring Robert Downey Jr. as Holmes and Jude Law as Watson.  Like the first movie, this one was filled with action and suspense, with an intricate and clever plot involving the evil Professor Moriarty.  There is a lot of fighting but also some good laughs to lighten the tension.

We are also continuing to watch episodes of Alphas, Warehouse 13, X-Files, and Castle with the kids, and Ken and I are enjoying season 1 of The Good Wife.

Have you seen any good movies or TV lately?

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

Yummy Gluten-Free/Dairy-Free Pancakes

Success!  Jamie sat down at the breakfast table this morning, put a bite of pancake into his mouth and said, "It's a winner!"  Developing a recipe for gluten-free/dairy-free pancakes that taste like our usual ones has been a top priority for me this past week.  Pancakes are Jamie's favorite food, and we have a family tradition of homemade pancakes every Sunday morning.

Last week, I began experimenting and tried two different approaches.  One was a pre-made GF pancake mix (Simply Organic Pancake and Waffle Mix purchased at Whole Foods) and the other was an attempt at mimicking our usual homemade pancakes with gluten-free options.  Both initial trials were only halfway successful.  They weren't too bad, and everyone ate them, but they weren't quite right, either.  Both were too flat and didn't brown properly.

And my kids have very sensitive palates!  Craig took one bite of the pancakes made from the mix and said, "Do these have cornmeal in them?"  When I confirmed that they did, he proclaimed, "I don't like cornmeal in my pancakes - it makes them taste like cornbread" (he likes cornbread but obviously, he is a purist!).  Jamie similarly tasted the homemade pancakes and suspiciously said, "These have buckwheat in them, don't they?  I don't like buckwheat."  I happen to love buckwheat pancakes, but the 1/4-cup I added to the pancakes was too much for Jamie!

So, back to the drawing board today.  This time, I tried to duplicate our usual whole wheat buttermilk pancakes and eliminate the problems from last week...and it worked!  I think we got pretty close, and everyone liked them (even Ken and Craig who aren't eating gluten-free/dairy-free).

So, here's our new pancake recipe...

Gluten-Free/Dairy-Free Pancakes

1 cup gluten-free all-purpose flour mix (today I used Namaste brand)
1 cup brown rice flour
2 Tsp. ground flax seeds (added for more fiber since I usually use whole wheat flour but could be omitted)
2 Tsp. sugar or 1 tsp. Stevia
2 tsp. baking powder
1 tsp. baking soda
1/4 tsp. salt

2 eggs
2 Tsp. canola oil
2 cups coconut milk
2 Tsp. lemon juice

Chopped fruit of your choice (today we had banana-chocolate chip pancakes! See #5 below)

1. Add lemon juice to soy milk and let stand (this is how you make a substitute for buttermilk; if you are only gluten-free and can have dairy products, just use 2 cups of buttermilk).
2. Combine all dry ingredients and mix thoroughly.  Be sure to measure the flours correctly: gently spoon flour into the dry measuring cup (don't scoop or pack) until overfilled, then level the top with a butter knife or the handle of a spoon.
3. Combine wet ingredients and whisk together.
4. Add wet ingredients to dry and whisk together thoroughly. Let stand to thicken.
5. Chop and add desired additions and stir gently.  We like to use fruit: chopped peaches, strawberries, bananas; fresh or frozen blueberries or raspberries.  And, of course, chocolate chips are a favorite and are especially good with bananas, strawberries, or raspberries.  Normally, we use mini Nestle chocolate chips, but I discovered they contain milkfat.  So, instead this morning, we took a dark chocolate bar (read the label to be sure it doesn't contain any milk products), and I just grated it into the batter...yum!
6. Heat griddle to 350 degrees.  Dip a 1/3-cup measuring cup into the batter and pour onto hot griddle.  Flip pancakes when tiny bubbles form along the edges and bottom is golden brown.  Serve hot with maple syrup!  Leftovers can be refrigerated and reheated in the oven or microwave.

Grieving Losses and Moving On…Again

Yesterday was an emotional rollercoaster for our family.  On second thought, that’s not an accurate analogy because there were no ups, just downs.  We finally had our much-anticipated meeting with the Office of Disability at the college our son hopes to attend this fall, and it was a hard dose of reality.

As you may know, our son, 17, has had a really horrible year.  On top of the ME/CFS he has had since age 10, he also has Lyme disease, bartonella, and babesia (all tick-borne infections).  He has probably had these infections for about five years, so getting rid of them is a very long and difficult process, during which most people get much worse before they get better.He missed 90 days of school during his senior year of high school.

Somehow, through shear determination and the help of some compassionate teachers (and the hindrance of others!), he managed to graduate from high school in June, though he is still struggling to finish his last few Calculus exams and World Lit essays now.  He was accepted at the University of Delaware for Fall 2012.  Of course, given how ill he’s been this past year, we have all recognized that he may not be able to start college this month, as expected, but, as is typical for us, we have remained hopeful and optimistic and have moved forward with all the many steps required (endless forms, deposits, student orientation, doctor’s notes, etc.)

Today, we finally met with the Office of Disability (they won’t meet to discuss accommodations until after July 30 which seems like a backwards process to us!), armed with a list of accommodations we thought Jamie would need, including a single room, reduced course load, extra time on exams, and more.  Our first surprise was that they wanted to meet alone with Jamie and asked Ken and I to wait in the waiting room.  We understand their desire to have almost-adults begin to speak for themselves and develop independence, but we had no warning that the meeting would be conducted this way, so Jamie was unprepared.  To make matters worse, he is still very badly crashed from his trip with his grandparents, so much so that even just talking took a lot out of him (as I know all of you can understand!)

When we were finally invited in 90 minutes later, it felt like getting doused with ice water as reality hit, hard.  We discovered that the deadlines for special housing requests had passed.  When I pointed out that their office wouldn’t meet to discuss accommodations before August 1, she said, “Oh, those are academic accommodations.  Housing accommodations are different – you should have filled out a form back in April.” How on earth were we supposed to know that??  So, he is without a dorm room, single or otherwise.

I know it sounds silly, but I began to fall apart at that point.  We were hoping for – planning on – this very fragile house of cards of accommodations to all fit into place perfectly.  Jamie’s chances of being well enough to attend college in a few weeks were slim to begin with; with any one piece of the accommodations missing, it would be impossible.  I tried hard to stay in control, but the tears started coming. 

As each piece of news was delivered, I felt myself losing control.  No, attendance could not be omitted from grading; class attendance was a requirement and too many absences would result in failing a class (when did this happen?  When I went to college, you could skip all the lectures if you wanted, as long as you passed the exams!)  No, there was no way to give Jamie special parking privileges on campus; parking spaces were hard to come by.  No, note-takers were only allowed if the disabled student was present in class, not if they were absent.

It wasn’t all bad news – there were plenty of accommodations they were willing to provide, plus they made additional suggestions – use of an on-campus transportation service for disabled students, the ability to take as few as 6-9 credits and still be considered full-time, plus advice to talk to the Dean of Engineering about what classes might be dropped or postponed or taken during winter or summer breaks.  But there was also a lot of discussion about whether Jamie should defer enrollment for a semester or a year, until he is well enough to manage.

Again, we knew this decision was quickly approaching and that deferment was a very real possibility, but somehow, that reality just hit us all in the face yesterday.  I was almost sobbing by the end of the meeting, trying hard to hold my emotions in for our son's sake, but completely unable to do so.  We all left in a daze, not speaking.  When we got to the parking garage, I tried valiantly to pull myself together and look on the bright side.  I said something to Jamie about maybe living at home and going to school part-time.  He said angrily, “Just forget it, Mom!  I’m going to have to defer.  I’ve been kidding myself.  I couldn’t even fill out all the forms myself – that should have been a clue to me!”  When we got to the car, I tried to hug him, but he whispered, barely holding himself together, “Not here, Mom.  I want to get home before I cry.” My heart broke, and my own tears came back.

He went straight to his room when we got home, and I figured he needed some time alone.  Our younger son took one look at the three of us and said, “What happened?”  I changed my clothes and went down to the family room.  As I sat there with my younger son, I suddenly heard our older son, from up in his room on the opposite side of the house, sobbing and howling with grief.  There is no worse sound on earth for a parent.

I went up to his room and found him lying on the ground, wrapped up in his quilt.  My husband was there, also.  We grieved together and tried to comfort him, as he let his sorrow out.  He sobbed and told us he didn’t want to be left behind while all his friends moved on.  He told us he didn’t want to miss out on anything else because he’s already missed so much.  Our hearts broke for him. After a while, I hugged him and told him, “It’s OK…we know you are suffering and disappointed. Let all that sadness and pain out.  And whenever you are ready, we will be here for you, to talk about options and move forward with you.”

I was completely wrung out, both physically and emotionally.  We all were. I had some lunch and took my nap, Ken decided not to go into work and sat down to make some of the phone calls to follow-up on questions from the meeting, and our son came down to the family room to watch a funny movie with his brother. We were already beginning to heal and move forward, though it still felt like we each had a hole in our hearts. A few hours later, we gathered around the dinner table and began to talk about options and what Ken had learned through his phone calls.

And there are definitely some options. Housing said they could still get him a single room, if we get the forms in right away. Financial services said there was still plenty of time to withdraw for the semester, and they outlined requirements for part-time students. We are still in limbo for now, unsure of what will happen in a few weeks. The Dean we need to talk to is on vacation right now. Perhaps he will be able to live on campus in a single room and take a few classes. Or if he’s not well enough for that, he could live at home and perhaps just take one or two of the easier classes, then make up some during the upcoming winter and summer breaks. There are options and choices – and a whole new list of things I need to do to investigate them!

We got up this morning and had breakfast. Surprisingly, I’m feeling a little better than I was yesterday (I was crashed even before the meeting). Our son seems more engaged and alert than he was yesterday, though his joint pain (from Lyme) is worse.  We talked a bit while we ate, then I added a bunch of new items to my to-do list. We are once again moving forward, looking ahead to a future that we hope – and believe – will be better.

And so it goes with ME/CFS (and I imagine, all chronic illnesses). You get to a point of acceptance, living with your new normal, even feeling happy. You get up every morning and try to have a positive attitude, you maintain hope and optimism and keep trying new treatments. And, every once in a while, you fall apart. You feel, deep in your soul, the pain and sorrow of all that you’ve lost and all that you are missing.  You cry and grieve and own those painful emotions. And then, once again, you pick yourself up and brush away the tears and move forward.

2024 UPDATE: Our son did end up starting college on time, just a few weeks later. We worked with our dietician (who also had an MS in biochemistry) and our doctor on many different treatments (see my post, From Couchbound to College for details), focusing on diet, methylation, treatong immune dysfunction, and treating orthostatic intolerance. Together, all these last-minute changes made a big difference. The Dean did end up being very helpful, and our son did get a single room (though with no air-conditioning or private bathroom, though the bathroom was right next door). He took 3 classes each semester (and was still considered a full-time student, an accommodation that made a huge difference). When he was able to, he took an extra class during summer or winter session when students were on break. It took him six years (and many challenges along the way), but he graduated with a BS in Engineering. He still has ME/CFS and the three tick infections (though we think he may have gotten rid of babesia) and has had plenty of health challenges along the way, but at 30 years old, he's currently doing well, living with his girlfriend in another state, and working full-time. It was definitely worth all the battles and all the tears!

NOTE: If you have a school-age child (of any age, from preschool through college/university), please take a look at my collection of blog posts about educational accommodations. We fought for appropriate accommodations for our sons at every level--elementary, middle school, high, school, and college--and learned a lot of hard lessons along the way that can help you and your child. I also included LOTS of examples of accommodations (many of which the schools will likely not suggest or even know about) that helped our kids. Those examples will help even if you are in a different country.