Tuesday, May 26, 2015

Depression in ME/CFS - Emotional or Physical?

Image: jeffreymasson.wordpress.com
Despite the lovely holiday weekend I spent relaxing with my husband, I felt worse and worse as the weekend went on. By Monday, I was a total mess - feeling horribly depressed, crying at the drop of a hat, drowning in feelings of frustration, failure, and abandonment.

This happens to me once in a while - fairly rarely, thank goodness. As I explained in an old blog post, A Life of Contentment with Pockets of Despair, 9 years ago (!), I am generally a very happy, upbeat person. It's not an act or an attempt to "think positive" -  I really do feel happy most of the time and am generally very content with my life. I work hard, I love my family and friends, and I do my best to enjoy life, in spite of this nasty illness.

But sometimes, like this weekend and the bout of depression I wrote about in that old post, despair just hits me like a wave and knocks me down. I wonder how much of it is emotional and how much is physiological. I've noticed before that depression sometimes precedes a bad crash (hasn't happened in a while, thank goodness). This weekend, I took a long (for me) walk with my husband on Sunday morning and was in bad shape emotionally the next day. Could it have been "just" a part of a post-exertional crash? I think that would be even more depressing!

Emotionally, I am feeling overwhelmed and several things seemed to converge at once last week: our finances are super-tight (again) due mostly to our high medical expenses and college bills are growing; our extended family wants to go on an expensive vacation - a "free" trip that will end up costing us more than we can afford; my husband and I planned a solo vacation week for July because our sons no longer want to go on vacation with us - this new development has caused us both great pain; an article I wrote for a website was accepted for publication...and then they told me they no longer pay writers (also feeds into the financial pressures, of course, because I feel so guilty about not being able to contribute to our income); and, as always, ME/CFS is the ever-present storm cloud, affecting every moment of every day.

Most of the time, I am happy and content with the life I have created from this illness and I certainly recognize how fortunate I have been (though it's not just luck - it's taken a lot of hard work) to find treatments that have helped me to feel better and be more active. Sometimes, though, living in a prison of restrictions and limits gets to me. I just want to be able to enjoy a glass of wine with my husband, have a dessert when we go out to dinner, hike for as long as I want without constantly watching both the clock and my heart rate monitor. I feel like a ticking time bomb when I am out. My life is made up of a tightly monitored routine, with restrictions everywhere I turn: don't eat that, don't drink that, rest now, watch your heart rate, etc. I recognize intellectually that it is those very limits that allow me to live more freely than many people with ME/CFS - I feel better because I am so disciplined about sticking with my routine and my restrictions. But some days, I just want to throw it all out the window and be free!

Well, I feel a little better just having someone to talk to (assuming anyone is reading this!). I am just slightly better today - haven't cried yet this morning, anyway (oh shoot - never mind that last part).

I would love to hear from all of you - do you experience these sudden bouts of depression after periods of coping well? Does it seem to be linked with a physical crash for you? How do you maintain a healthy state of mind in the face of a life filled with restrictions?

I know I am usually the one feeling happy and cheerful and encouraging others to find the joy in life...but right now, I could really use some help myself.

Sunday, May 24, 2015

Weekly Inspiration 4/24

Ah, I am way overdue for some inspiration, both here on the blog and in my own life! These past few weeks, I have been wrapped up in just getting through each hectic day. So, I wanted to get back to my Weekly Inspiration feature.

Fittingly, this week I chose a TED Talk about happiness and smiling!

Ron Gutman gives this brief but inspiring talk on the research behind a simple smile - that smiling can lengthen your life and predict future success, for instance. Check it out:

I bet you smiled all the way through the presentation, didn't you? I did! That's another thing he talks about - how smiling is contagious. And best of all? Smiling is something we can all do that doesn't cost a thing and that even the sickest person can manage.

All of this bodes well for me - I am a very smiley person (as you could probably tell from my writing and my frequent use of exclamation points! I'm trying to cut down.) The smallest things can make me smile - flowers blooming out my window, a bright blue sky or interesting-looking clouds above my deck, even a vibrant shade of nail polish (I am currently wearing Not a Cloud in the Sky).

Now, I need to go check out my old yearbook, like Gutman describes in that research, to see who turned out successful and happy!

Hope you are enjoying this lovely holiday weekend. Find something to smile about today.

Bright nail color makes me smile, as do blue skies!

Friday, May 22, 2015

Double Your Donation - One More Week Only!

I meant to write this post over a week ago, but I've had my hands full here. This time of year is always extra-busy when you have kids, but with a high school junior in the household, it's even busier, with SATs, ACTs, prom, etc. This week, we had his Junior Ring Ceremony and he went on a class trip to Six Flags. I'm looking forward to a quiet holiday weekend!

Anyway, to the point...

Until May 30, an anonymous donor has offered to match donations made to the Solve ME/CFS Initiative, a very worthwhile charity that puts almost all of its contributions directly toward research through its Research Institute Without Walls. They've sponsored some excellent research studies in the past and have helped to move the state of knowledge of ME/CFS forward, bringing us closer to effective treatments and hopefully, a cure.

So, take a moment to make a donation to SMCI before May 30, and it will automatically double!

Give what you can and then relax and enjoy the holiday weekend.

Monday, May 18, 2015

Movie Monday 5/18

It was a big week for movies for me - I saw three excellent movies last week:

My husband took his dad to Atlantic City for his 90th birthday, so I chose a movie billed as "quirky," which my husband doesn't always appreciate! I watched Hector and the Search for Happiness and absolutely loved the feel-good movie! Based on a book that was an international best-seller (and that I now want to read), this movie is about a very average man named Hector, played by Simon Pegg, who lives in England and works as a psychiatrist. Hector is depressed because he realizes he's not happy, and if he doesn't know how to be happy, then how can he help his patients to find happiness? He decides to take an open-ended trip, leaving his long-time girlfriend - played by Rosamund Pike - at home while he goes in search of the secret to happiness. Everywhere he travels, he takes notes and draws sketches, asking everyone he meets what makes them happy. As Hector travels from Shanghai to Tibet through Africa and to Los Angeles, he encounters all kinds of people and learns many varied lessons about happiness which he dutifully writes and draws in his notebook. He encounters a wealthy businessman, Tibetan monks, African crime lords, and even his college girlfriend. Along the way, Hector gets all the excitement he was seeking (and more) - some of it wonderful and some of it terrifying. And, as you might expect, he learns the truth about happiness. I loved this warm, funny, uplifting movie with a great sense of optimism and fun.

My son had oral surgery on Friday, so I got a movie I thought he might enjoy: St. Vincent, starring Bill Murray (whom my son has enjoyed in many other movies). Our son's girlfriend arrived soon after, though, and he immediately ditched us, but my husband and I thoroughly enjoyed this comedy drama. Murray plays Vincent, a classic grumpy old man who lives in a run-down house, drinks through his days, and gambles away most of his money. Melissa McCarthy plays Maggie, his new neighbor and a single mother. Desperate for after-school care, she agrees to let Vincent babysit her 12-year old son, Oliver. You can imagine what happens next, as Vincent takes Oliver along to the track, teaches him to gamble, and hangs out in his favorite bar with him. This movie - and Vincent - are full of surprises, though, and there turns out to be a lot more to Vincent than meets the eye. Naomi Watts co-stars as Daka, a pregnant Russian prostitute. There are plenty of laughs in the film but also heart-warming moments, especially toward the end - yes, I even cried! This is another feel-good movie that we both enjoyed very much.

Saturday night, with my son and his girlfriend watching old movies in the basement, my husband and I rented Unbroken, a movie we've both been wanting to see since we both read - and loved - the best-selling book by ME/CFS patient (and acclaimed author) Laura Hillenbrand. Unbroken tells the story of Louis Zamperini, played by Jack O'Connell, an Olympic runner who goes to war. His plane is shot down, and he and some of his shipmates survive more than a month lost at sea, only to be "rescued" by the Japanese and sent to a POW camp led by a cruel and sadistic man. You know from the title that Louis survives, but it is the what and how that make this such a remarkable story. In addition to Hillenbrand's incredible book as base material, the Coen brothers wrote the screenplay, and Angelina Jolie directed the film. All that talent shows - it is a moving, powerful movie about overcoming impossible odds. Caution: as you might imagine from the subject matter, there are some very violent and difficult scenes in this film, though it is ultimately uplifting and about the power of the human spirit to overcome, survive, and thrive.

So, we had a great movie week - have you seen any good movies lately?

(And if you like to read, check out what we're reading this week at my book blog).

Saturday, May 16, 2015

Post-Exertional Malaise Survey

Dr. Leonard Jason of DePaul University, a longtime ME/CFS advocate and researcher, is conducting a study on Post-Exertional Malaise using an online survey that anyone with ME/CFS can participate in.

The aim of the survey is not only to characterize what post-exertional malaise is and how it affects patients but also to determine what words and phrases best describe it.

I took the survey this morning, and it took me about 20-30 minutes to complete it, so set aside a bit of time before you start. It is mostly multiple choice with a few short answer parts where you can use your own words to describe exertion intolerance, how it affects you, and how to explain it to others.

This is a great opportunity to help move ME/CFS research forward without leaving your bed or couch! So, click the link above and do your part today. The better that researchers understand and can describe post-exertional malaise (there HAS to be a better term than that!), the closer they will get to figuring out how to treat or even cure it.


Tuesday, May 12, 2015

Today is International ME/CFS Awareness Day

It's International ME/CFS Awareness Day!

Looking for ways to help spread the word? Here is what I am posting on my Facebook wall for my friends and family (to keep it manageable, I only friend my family and in-person friends on Facebook), along with a link to this post:

"I don't normally say much here about our illnesses, but today is International ME/CFS Awareness Day. ME is Myalgic Encephalomyelitis, the name by which this devastating illness has been historically known throughout the world, and CFS stands for Chronic Fatigue Syndrome, the cringe-worthy name the CDC saddled us with in the 1980's. I have had ME/CFS since March 2, 2002, and my sons have had it since 2004, though one is now recovered after 10 years of mild illness. At its heart, ME/CFS is an immune system disorder, causing parts of the immune system to over-react and parts of it to under-react. In a devastating cascade of effects, it causes problems with the immune, endocrine, and nervous systems. The mitochondria (i.e. energy producers) in our cells don't work properly and don't process oxygen normally so that even mild exertion - like a short walk or going up the stairs - can result in suddenly feeling as if we have the flu, and those effects can last days or even weeks. We have had some success with treatments, though we take piles of pills every day and our lives are still dramatically different than they were before ME/CFS. We are the lucky ones; many people with ME/CFS are housebound or even bedridden. For more information and to learn how to help, check out this blog post." (with a link to here)

I also plan to post other Awareness Day posts today - the Solve ME/CFS Initiative has lots of them to share, from the past week or so. Like my Facebook Page for this blog to see what I post today so you can share to your own wall.

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask you), here are some other ways to help further ME/CFS education and research:

  • Learn more about ME/CFS. Here are some sources of information you can share with others:
  1. What is ME/CFS? by Solve ME/CFS Initiative
  2. An Overview of ME/CFS by Phoenix Rising
  3. The CDC's information on CFS
  4. My own article, CFS: An Invisible Illness, published on Lively Woman (now BlissTree)
  5. Our public testimony on pediatric CFS at last year's CFSAC meeting.
  • You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities:
  • You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
  • You can even earn money for CFS research when you use a search engine:
Happy Awareness Day!  Help to spread the word!

(feel free to link to this page or share its information)

Monday, May 11, 2015

Movie Monday 5/11

Rough week for us here. My Dad has been battling stage 4 melanoma for the past year and has been pretty stable with his treatments (both chemo and immunotherapy), but last week, he started to have balance problems. An MRI showed multiple lesions in his brain - the news I have been dreading all this past year. They started radiation therapy immediately, and he may need surgery to remove the largest tumor.

When we found out, we changed our weekend plans to spend Mother's Day weekend with my mom and (with her blessing) instead drove to Rochester, NY, to spend the weekend with my Dad and his wife. He was feeling OK this weekend, other than being very tired (they have him on steroids which are disrupting his sleep), and we thoroughly enjoyed our time together.

We watched some old home movies - so much fun! - and also rented a DVD Saturday evening:

We watched Predestination, a twisty-turny sci fi suspense movie starring Ethan Hawke. Hawke plays a Temporal Agent, part of a secret government agency that uses time travel to prevent horrific crimes from occurring. His current project/obsession is a bomber from the 1970's who destroyed many lives, culminating in a huge explosion in 1975 that leveled city blocks and killed over 10,000 people - that's what Hawke's character wants to prevent. I don't want to say anymore about the plot because this movie is full of surprises! I wasn't even sure if I should mention the time travel element because that surprised me, but my son says it was obvious from one of the very first scenes (I can be a little slow!) and I see that even the briefest movie descriptions online mention that. This movie will leave your brain spinning with each new development, with an ending that makes you say, "Wait a minute. What?" But in a good way. We all really enjoyed it. It's a clever, suspenseful movie filled with the kinds of paradoxes that make me love time travel stories.

Have you seen any good movies lately?

Tuesday, May 05, 2015

What the Rest of the World Sees

I've written often lately about the improvements I've made over the past few years and how much more I am able to do now. One aspect of this illness has gotten worse, though, as I've felt better overall: the invisibility of my illness. The more I am able to be out and about "in the real world," the less that others around me understand how much I struggle. And true, I do feel better than I used to, but other people just don't understand that that is only part of the story and that I am still very ill overall.

My closest friends are wonderfully understanding - I am blessed with such compassionate, kind friends. They know first-hand that I have to stop often when we take walks to wait for my heart rate to come down or that I often have to say no or even cancel plans at the last minute when I really want to go. And, of course, my husband understands because he lives with me. With increased stamina, I am even more likely than before to push too hard or do too much - he's usually the one warning me to listen to my body and slow down!

The rest of the world, though - acquaintances, friends that don't spend as much time with me, and certain extended family members - see someone who looks vibrant and energetic when they see me. They think that my restrictions are self-imposed, that I'm exaggerating my illness, sometimes even that I am looking for attention. Nothing could be further from the truth. I would give anything to live a free and active life again - to eat whatever I want, to have a glass of wine or a beer once in a while, to exercise intensely and do all the things I am longing to do.

Because I am a generally happy person, usually smiling and cheery, and can now be out and about more, most people have no idea that every single moment of every single day is a struggle, that I have to be constantly vigilant about what I am doing, eating, and how I am feeling. Some think (I know because they have said so) that I "focus too much on my illness." They just don't understand that to ignore my limits for even a brief period of time is to sentence myself to worsening symptoms and a crash. That constant mental monitoring is exhausting in itself! I would love to be free of it.

One family member is clearly resentful of all the times in the past we have had to cancel plans at the last minute. They don't understand that if we cancel something we have been looking forward to, it's not on a whim or because it's too much trouble - it means that at least one of us is literally unable to get up off the couch, that we are incapable of traveling.

It's even worse with our son. Now that he is in college, living in his own apartment with friends, and even has a part-time job (a new victory!), people look at him and think he is fine. They don't realize that those 3 classes he takes each semester use up every last bit of his energy, that he struggles every day to keep up with his friends. They may see him do active things because he yearns to be "normal," but they don't see the days afterward that he is crashed, lying on the couch staring blankly at the TV, unable to get up. They don't realize the anguish he feels in not being like everyone else, the worry over being able to keep up, the deep distress over not being understood by even his closest friends. Like me, he has a positive, happy disposition, so people assume he feels fine.

I don't mean to dwell on the negative. I am blessed in many ways and am very, very grateful for the gains I have made these last few years. Sometimes, though, it is frustrating and demoralizing to be constantly misunderstood. It is a paradox. If I cover up my struggles and act like everything is fine, then people underestimate my illness and its effects and perhaps even think I am exaggerating it. On the other hand, if I am too open and honest about my struggles and limitations, then people think I focus too much on illness or they pity me. It's a fine line to walk. I am just grateful that there are some people close to me who know what my life is really like.

What are your experiences with what people see versus the reality of your life?

Monday, May 04, 2015

Back From My Trip - Victorious!

Northshire Bookstore - Manchester, VT
I am back from my 4-day trip to Vermont, victorious! I had a wonderful weekend and managed my ME/CFS successfully - I feel like I have returned from battle!

I was worried about the weekend but spent a lot of time preparing for the trip (see my pre-trip post) and I had high expectations for this event that I have been dreaming about attending for years.

My expectations were exceeded! It was an amazing weekend. There were 80 book loving attendees, 8 authors who hung out with us all weekend, the two hosts, and an incredible bookstore, all in a picturesque New England town (Manchester, VT). For an avid reader/book lover like me, this was total nirvana! Booktopia was an apt name.

My mom and I
As for managing with ME/CFS, it did indeed feel like a marathon to me, but a really fun marathon. I stuck to my routine, making sure to get regular meals and taking my afternoon nap, even when it meant missing out on things I wanted to do. All that preparation definitely helped. My mother was a wonderful traveling companion - she was considerate of my needs, supportive, and a lot of fun, too. In fact, I think this weekend trip was really great for us, healing some rifts from recent conflicts and bringing us closer together by sharing something that we both enjoyed.

Some of our new friends!
One of the best parts of the weekend was meeting so many wonderful people who love books as much as I do. For someone who normally lives a very restricted life with a lot of time spent at home, it was hugely energizing to be out among people and socializing. I am a very social person by nature and sometimes the solitude and isolation of life with a chronic illness feels a bit constrictive (even as I yearn for and cherish that quiet solitude because I need it so much). In particular, we really hit it off with two other women - best friends - who'd come to the event together and found we had a lot in common. What a thrill to make new friends after living so cautiously for so many years!

Although I was exhausted by the end of each day, the hardest part was the driving. Each segment of the trip (from my house to my mom's and then to VT and then the return) was 3 1/2 hours long, which is pretty much the outer limit of my stamina for driving on my own (my mom helped with the CT/VT legs). Sunday was especially hard, since I did it all in one day, with a nap in between the two parts at my mom's house. I was so glad to arrive home last night and lie down on "my" couch!!

Interestingly, the whole thing was very over-stimulating for me. I am still totally wired - couldn't even nap properly this afternoon. My husband suggested I take a half an Ambien at bedtime last night because we were reading in bed (or trying to) and I just kept chattering to him! He knows that just going to my neighborhood book group for 2 hours can over-stimulate me, and this was 4 days' worth of social activity! My head is still just spinning from all the great conversations, interactions with authors, and activity.

So, all in all, it was a big success. I was exhausted at times, but I never developed more serious symptoms (like sore throat or flu-like aches) or crashed completely. It will probably take me a few days to fully recover and come down from my high, but it was so much fun!

I never could have managed something like this five years ago (you can see some of the treatments that have helped me improve in my 2011 and 2014 summaries).

Have you ever managed to get through a special event since becoming ill?

Me and author Cristina Henriquez