Wings of Hope

It's been quite awhile since I last updated my blog. This is in part because my health can make it difficult for me to write extensively or put my thoughts together into any kind of cohesive whole.  Mostly, though, I've held back on writing because I haven't had all that much to write about.  Being sick and bedridden for years on end simply doesn't inspire many riveting stories. :)

However, occasionally, things do happen that differ from the norm.  Indeed, I have had a few somewhat new (and even rather wonderful) experiences in recent months that I would love to share with you.  While many of these are small, ordinary type of events that most people tend to take for granted, they are things that I don't normally get to enjoy. Thus, they hold much more significance for me. 

One such new adventure resulted from a wheelchair ramp we recently placed in our garage. It has quite literally opened new doors for me and given me access to places that were previously out of reach. On days that I am well enough, I am now able to be wheeled outside for brief moments to look up at the gorgeous blue sky and see our beautiful view of the Rincon mountains in the distance.

A new view

Currently, I can't go beyond the garage door and venture further outdoors as I am unable to sit up for more than a few minutes and the bumpy gravel can be a difficult ride for me.  But I am not about to complain. It's been a wonderful change of scenery.  When you have been primarily confined to one or two rooms for over a decade, getting a glimpse of an alternate view for even a few minutes can feel quite liberating.

The ramp has also helped to fulfill another long-held wish of mine.  One of the innumerable things I've missed in all these years of illness is the opportunity to gaze at the night sky. I can occasionally see the moon and a few stars twinkling from beyond my bedroom window, of course, but the view is always partially obstructed by the branches of my mesquite tree.  And while I used to be a night owl prior to falling ill, my health often now forces me to end my day before the sun has even had a chance to set.

However, this winter, while the days are short and night descends over the desert a bit earlier than usual, my parents have more than once wheeled me outside to gaze up at a brilliant display of sparkling stars.  It took my breath away to see all those glittering little diamonds scattered in the darkness.  It is the first time I have been outside during evening hours in 15 years.

Looking up at the stars

I don't know anything with certainty, but seeing the stars makes me dream.”
-- Vincent Van Gogh

I am hopeful that, with the help of the wheelchair ramp, I can continue these new little adventures of mine on a regular basis.  Perhaps, if I am well enough, I may even be able to lie outside in my front yard sometime this spring.  It would, I believe, be a little easier for me than our backyard patio, which has some obstacles to get through that can often cause a setback.  If this new set-up works out, my fingers are crossed that it may make it possible for me to lie outdoors more often, and without as much penalty.

Something else I have missed in all these years of confinement is the wide array of colors you see in the daily experience of simply being out in the world -- in gardens and art museums and in the simple variety and vibrancy of nature.  In an effort to add some of those lively colors back into my life, my mom now makes sure that I always have flowering plants in my room to brighten my days.  I love watching them burst into form, all radiant and iridescent, as if in celebration of their own beauty.

Purple Orchids

White Orchids

Yellow Daisies

In addition to these daisies and orchids, a dear friend of mine sends me a new amaryllis plant each year for the holidays.  I have several whose bulbs are just now beginning to sprout, and I look forward to getting to see their beautiful display of blossoms in the coming weeks.

This Christmas, I was also given a few of those adult-geared coloring books that are so popular right now.  As long as I am careful to pace myself and not overdo, I find they can be a fun way to pass the time when able.  Here's a dragonfly I finished a few weeks ago that I thought came out decently, at least compared to some of the others I did. :) I clearly don't have much artistic talent, but it's nice to feel I am doing something even slightly creative.  It's another way for me to add some color to my world.

Dragonfly

As always, the birds and wildlife also bring me a little beauty each day.  While this doesn't technically count in my list of "new experiences," it wouldn't be a proper update without including a few of my favorite photos of my more recent window visitors -- from the usual finches, woodpeckers and doves to the slightly less common black-chinned hummingbird and Cooper's hawk.

Bird Visitors (click to enlarge)

Another recent treat was getting to have my annual (always far too brief) visit with my best friend and her two daughters over the holidays.  Due to my health, any interaction I have must regretfully be kept to a minimum (generally less than 10 minutes or so) in order to avoid a lengthy setback.  However, thanks to very careful pacing, this was one of the first years in quite some time that I wasn't crashed prior to the visit, and it was nice to be able to interact even just a tiny bit more than usual.  I especially loved getting those precious hugs from her sweet children.  Her youngest, my goddaughter, always comes back into my room for an extra hug before they leave, which never fails to make me smile.

And now for my most exciting news of all!  

I've mentioned previously that, unfortunately, my fiance also suffers with severe ME.  Jim's been sick for over 30 years and is wheelchair and mostly housebound.  Due to our health, our relationship has been forced to remain long-distance. Until this past January, it had actually been eight years since we'd been able to see each other.  However, by some small miracle (and with much help from both our families), Jim was recently able to find a way past the many obstacles to fly out and visit with me! I still can't quite believe it really happened.

Together again at last!

Always so sweet, Jim brought me a rose and some chocolates

In order to help pull this off, one of Jim's brothers kindly offered to fly out from CA to PA and join Jim in his flight here to Arizona (and then back again for the return flight home).  This assured that someone would be there to help Jim through every step of the journey in case he needed additional assistance or encountered unexpected issues.  Jim also flew first-class (and had a reclining wheelchair) so that he could lie mostly flat for the entirety of the flight.  My parents, of course, were also extremely accommodating and went out of their way in order to make the visit as easy and comfortable for both of us as possible.  In addition, Jim's parents helped tremendously by caring for him before and after the trip.

I am beyond grateful to all who so graciously offered their assistance and support to make our visit happen. I'm most especially thankful for Jim, who bravely fought through so many hurdles and risked his very health for us to be together.  I don't have the words to describe how remarkable it was to be able to see him again after so many years apart.  Despite how sick we both were, every moment we got to spend with each other was pure joy.

Of course, I miss him terribly now that he's back home, but I feel so fortunate to have such wonderful, new memories to hold on to and cherish.

My time with Jim gave me a newfound sense of hope. Admittedly, there was a part of me that wondered -- without a cure or a new potential treatment -- if I would ever see him again.  Our health has been so poor over these last many years, and research for this disease continues to be sparse and lacking in much immediate promise.  However, Jim's visit was a reminder to me that, even in the midst of unending struggle, dreams can and do still come true.  Undoubtedly, while my body remains confined by illness, my heart, mind and soul can still find ways to soar.

It is on those wings of renewed hope that I forge ahead with even greater resoluteness, knowing that, despite everything, many more moments of joy, love, beauty and wonder await me.

What Dreams May Come

As I've mentioned in previous posts, I fell ill with mononucleosis on New Year's Eve 1996. It was this infection that so suddenly initiated what ultimately grew into a diagnosis of ME/CFS. I can still vividly recall counting down the last few seconds of that year with as much hope and optimism as always, excited for what great things 1997 would bring me. I was young and successful; my whole life awaited me. I never anticipated I would wake up the next morning, my health rather abruptly stolen from me, with a continuous decline ahead that would last what has now been 14 long years.

This being the anniversary of my illness onset, the new year understandably brings with it a mix of emotions. While I remain stubbornly hopeful, that hope is now admittedly a bit more cautious in its enthusiasm. I have grown somewhat wiser over the years, and more keenly aware of life's uncertainties. While I continue every day to hope and strive for the possibility that this year finally brings some measure of recovery and/or a cure, I must also be prepared for the possibility that it will not. In this way, my day-to-day happiness is not as reliant on expectations. That is, whatever each day of the new year may bring, I am better able (at least theoretically) to be patient with what is, and at the same time, remain determined and hopeful for the future.

But while my daily hopes have become more cautious, my dreams have not. My dreams run bright, limitless and free. Whether it is this year or next, I am steadfast in my belief that one year, one day, at least in some form, they will indeed come true.

Among many other things, today I find myself dreaming of...

Having the freedom to run barefoot in the grass

Or play in the rain

Going on a picnic

Or spending a day at the beach

...doing cartwheels

Getting my master's degree

And going back to work
Being able to take long, hot bubble baths

....and dance the night away with my fiance
Traveling to far away places

Hiking up mountains

Taking long bike rides
And long, leisurely road trips

Finally celebrating our wedding day...
and our honeymoon...

and having the chance to start a family

Most of all, today I'm dreaming of perfect health;
of breaking free

and shouting to the world with joy:

"Within your heart, keep one still, secret spot where dreams may go."

~ Louise Driscoll

"Dreams come true; without that possibility, nature would not incite us to have them."
~ John Updike

All photos from: weheartit.com

In Fifteen Years

I can remember a day when I was 15 years old, sitting on my bedroom floor and writing in my journal. I was upset about something I can no longer recall; no doubt some kind of teenage-related angst that would seem terribly insignificant to me now.

As I scribbled out my frustrations, I remember stopping for a moment, closing my eyes and leaning back against my bed. I envisioned myself 15 years into the future. I would be 30 years old. I would be an independent woman, capable and confident and free to make my own decisions. I would have finished college and graduate school, and would be well into the start of my career. Hopefully I'd be married, perhaps even with a young child or two. My life would be filled with travel and adventure, as well as the mundane but simple things that make life so spectacular. I'd wake up excited to go to work each morning or stay home to care for my children. My husband and I would be sharing in the pride of our new life together. We'd be celebrating holidays with friends and family in our own home, making new traditions as we created what was sure to become an abundance of cherished memories.

Perhaps, in my somewhat young naivety, this vision of my future was a bit overly simplistic in its perfection. Certainly, my life would not be without problems. However, I still can recall the tremendous sense of peace that vision gave me. Whatever troubles I had in the present moment would then be long forgotten. Life would be sweet, and everything would turn out fine.

Unfortunately, though, that's not quite how things happened. At 30, not only was I not married with children, but I wasn't dating. I was not establishing myself in my career, but instead was forced to apply for long term disability. Far from independent, I required assistance with virtually all tasks of daily living. I had already been ill for six long years, and essentially bedridden for nearly two. I could barely speak above a whisper. The only traveling I did was making short trips to the bathroom and kitchen a few times a day, and those few steps were quite a feat for me (they are steps I can no longer take). The memories being created were not of cherished moments, but of struggle and frustration within the four walls of my small apartment as I lay in solitary confinement.

I often wonder now, what I would have thought had I known in that moment, at 15 years old, the truth of how my life would turn out. What would I think now, if I knew the truth of where my life would be 15 years from this moment?

When I think of that young, sweet, innocent 15 year old girl, full of hope and longing, with endless goals and dreams, I want to tell her I'm sorry. I want to tell her I'm sorry for what she did not know would become so many lost opportunities, so many lost dreams, and so many lost hopes. I want to tell her I'm sorry for all the pain she would soon endure, the endless days of sickness that would grow into months and years without a single moment of genuine reprieve. I'm sorry for the paucity of answers that would be offered to her, the absence of a real treatment for any of her symptoms, and the overwhelming frustrations she would face in battling such an all consuming, devastating, and invisible disease. Perhaps most of all, I want to tell her that I'm sorry I couldn't do anything to protect her.

Of course, I want to tell her, too, that despite things not unfolding how she planned, some parts of her story did turn out okay. She still found love with an extraordinary man. She still has many things she can list as accomplishments, even if they aren't the types of things she'd have previously realized or appreciated as such. She still has countless memories and blessings to cherish, close friends and family, and many things about which she can feel very proud. Even when severely limited, life can still have its moments of joy. It can still be fulfilling.

It's now been eight years since my 30th birthday. It won't be long now before I'm 40. If you were to ask me how I envision my future 15 years from today, I would admit I'm not quite as confident in what I see. Life, I've learned, is uncertain. But somehow I still hold that same vision of myself I conjured up so many years ago, and I remain hopeful it is a vision that will someday fully become a reality. It may come much later than I had anticipated, but it may still come. That 15 year old girl still lives inside me, and she is not yet willing to let go of her dreams.

Happiness & Other Tidbits

So, better late than never, right?

A few months ago (okay, more like seven months ago) I was honored to find I had been tagged by Joanne ( of Joanne's Cottage Garden) in what is apparently called a meme. The idea is to list 10 things about yourself you think your readers may like to know, then ask other fellow bloggers to in turn do the same.

Much thanks also to Dominique at 4Walls and a View , Forgetful Girl and Lisa at Sundog Tales who all (fairly) recently nominated me for a Happiness Award. The concept there is similar, too: list 10 things that make you happy, and then nominate others to do likewise.

So, while it took me awhile to finish it, here are my lists! I'm combining the two awards into one entry. I think that's allowed, right? :)

Here are 10 tidbits about myself you may or may not be interested in (insert drum roll here)....

1. I was named after mountain laurels, a flowering plant abundant in New England (where I grew up). I was not named after Laurel and Hardy, though I get that question a lot.


2. I was born a blonde, and stayed fully blonde until I was about six years old. I'd say that explains a few things about me, but I don't want to insult my blonde friends.

Me, age 4-ish.

That photo was taken at Storyland in N.H. I cropped out the freaky looking clown behind me so as to not scare anyone.

3. I grew up in a small town with quite a few dirt roads, no street lights, no banks, no gas station, no restaurants and just one small general store.

Okay, so that's not an actual working road in my hometown. It's a small path off one of the dirt roads, but you get the idea. :) One of my favorite memories as a kid is riding my bike to the small convenient store with friends. We would buy candy or ice cream treats for 25 cents... which I think officially makes me sound old.

4. I have always deeply yearned to be a mother. It's something I've dreamed of since I was a little girl, and I continue to hope that I will still someday have the chance to experience all the joys of motherhood.

5. I studied abroad in London for a semester my junior year of college, and backpacked through Europe with a friend during spring break. After college, that same friend and I drove across the U.S. for almost 2 months. I love to travel. Some of my favorite places include Hawaii, Bryce Canyon, and Italy. Here are some photos I took of said favorite spots:

Venice, Italy

Kauai, Hawaii

Bryce Canyon, UT

6. I have always wanted and would still love to take karate classes. I would also love to take dance lessons of all kinds, as well as photography, drawing, painting, watercolor, film, cooking, sailing, yoga, and a dozen or so other classes.

7. I consider it a great honor to be my nephew's godmother, and I absolutely adore both my niece and nephew. I wish so much I could be more active in their lives.

8. The day my fiance proposed to me was the happiest day of my life. I am so fortunate to be engaged to my best friend.

9. I would love to spend some time in Kenya or Nepal or some third world country and volunteer to work with poor women and children there.

10. Illness has taught me a lot about patience, forgiveness, gratitude, hope, humility and grace. In the process, I've also learned that your life is not defined by circumstances, but by how you respond to those circumstances. I dream every day of how glorious it will be to someday get my health back.

~~~~

As for 10 things that make me happy (insert more drum rolls)...

1. My fiance. Everything about him makes me happy: his friendship, understanding, humor, intelligence, strength, kind heart and his love. He makes my spirit fly, even if my body is stuck in bed.

2. Family and friends. I feel grateful to have a healthy family, loving parents and so many wonderful, loyal and life-long friends.

3. Books. I love learning, getting absorbed and being transported to distant places with a good story. I am so grateful for audio-books which regularly allow me to do so.

Me listening to an audio-book

For Christmas this year, I finally entered the 21st century when I received a little mp3 player so I can download books online, which also makes me happy.

4. Music. I enjoy all forms of music, from rock to classical to almost everything in-between. Music can immediately transport me back to healthier times and memories, as well as to new places I've never been. I love music that touches you to the core, takes you on a journey, and expresses what words alone cannot.

5. The internet, which allows me to keep in touch with friends and stay connected to the outside world in ways I otherwise could not.

6. The rare but sweet chocolate indulgence.

7. Nature. I love nature and am grateful for all the glimpses of it I can still experience from afar... from the bright blue sky out my window to the comforting sounds of bird song and the soothing, earthy smell of a soft rain.

8. Simple daily blessings like good food and clean sheets, a nice breeze from my window, or a surprise email from an old friend.

9. Dreams. I have amazingly vivid dreams. It is in dreams that I can still walk, talk, run, shower, sing, dance, work, travel, visit with friends and family, meet new people, laugh out loud, have a family of my own, paint, draw, swim and even fly.

10. Envisioning my future and all the millions of things I hope to do when well. I am ever grateful for the strength and endurance of hope.

Photo from weheartit.com

Thanks to all for the nominations! As for passing them on, I think anyone who hasn't already done so, is able and wishes to participate should make a list as well. It's a good way to stay mindful of your blessings, which can sometimes be a challenge when chronically ill.

An Interview

Recently, Robyn over at "How are You?" and Other Dumb Questions contacted me in regards to an article she was writing for her college journalism class. The article was to focus on the trend and impact of chronic illness, and would include interviews and discussions with various bloggers describing their experiences living with ME/CFS.

I thought she asked some great questions, which helped to provide not only a glimpse into my world, but also into the world of both the chronically ill and those who are on the severe end of the ME/CFS spectrum. I requested Robyn's permission to post our interview on my blog, and she kindly agreed. You can find it in its entirety below.

Many thanks to her for inviting me to participate. I was honored to be part of the project! Please be sure to check out her blog, which is linked above.

*************
Interview:

Hi Laurel,

Thank you so much for getting back to me! I’m delighted that you’ve agreed to my interview. I absolutely understand your limitations, and I am happy to conduct the interview via email.


First, a few basics:

1) Where do you live? With whom do you live?

I live in Arizona in my parents' home. I moved to AZ from Boston sometime after getting mono, but before being diagnosed with CFS.

2) Are you married? I read about your fiancé on your blog—congratulations! What are your plans for the wedding, or are they on hold because of the illnesses both you and your fiancé experience?

Thank you! Unfortunately, we have not yet married. Our wedding is on hold until our health improves. We live in different states about 2,000 miles apart, and we are both currently too sick to travel or pick up and move. Jim was able to fly out here to surprise me and propose, but it was an enormous effort on his part and takes a big toll on his health. So, as much as we'd love to get married now, it will have to wait until one or both of us is feeling much better. Then we'll both be dancing down the aisle. Or wheeling down it. Whatever the case may be. :)

3) Speaking of your fiancé, I understand that he too suffers from debilitating CFS and is wheelchair-bound. Can you tell me a little bit about your relationship and how your understanding of illness brings you closer?

It is wonderful to have a companion who can fully understand this illness and all its complexities, frustrations and difficulties. CFS is a disease so often misunderstood by the non-sufferer, and it's a real comfort to have a companion who can so completely relate. At the same time, it can also be very difficult because of all the restrictions CFS creates for us, and because we both know just how much the other is going through.

But to be honest, Jim and I actually don't spend that much time talking about CFS. We do discuss it of course, but we both have so many similar passions and interests in life that there are always countless other things we want to talk about. That's what I find most fulfilling about our relationship... our connection beyond and despite CFS.

Also, Jim is incredibly smart and very funny. We have great discussions, and he often reminds me to laugh and keep smiling despite it all. I think that's really important. I don't think I could have gotten through this without that reminder. Or without him.


Thank you! Next, I’d really like to know more about your relationship with illness. I know the story of how you first got sick—a serious case of mono complicated itself into a severe case of CFS—but I’d like to know more about its effect on your daily life and your relationship with current doctors.

1) First, the name “chronic fatigue syndrome”—do you feel it describes accurately what you have? Why or why not?

Definitely not, and for many reasons. First, it only focuses on one symptom, and on a symptom that is common in many illnesses (as well as in every day life). Second, many sufferers would not even consider fatigue as their main or most debilitating issue. For me, if I were to list my symptoms in order of their severity, they would be 1) post-exertional malaise (worsening of symptoms after the most minor of exertion), 2) orthostatic intolerance, and 3) neurological problems/ sensory overload. Next would be incapacitating exhaustion, which leads to the other reason the name is so inappropriate. The word fatigue is a grossly inadequate term for what we experience. The exhaustion level is completely outside the normal, healthy conception of fatigue, and I think that is part of the reason it is so hard for people to fully grasp. It's much more about feeling horribly sick than it is about feeling tired. So, the name of this illness is really unfortunate and is part of what creates so much stigma and misunderstanding.

2) It took 2 years for you to be diagnosed with CFS. How many doctors did you go through before someone realized what you had? What were the frustrations of your diagnostic process?

I'd say I probably saw about a dozen or more doctors before I was officially diagnosed. I saw several internists, several infectious disease doctors, a neurologist, an endocrinologist, a rheumatologist, etc. They had to rule out all kinds of other diseases first, so it took a long time. Much longer than it should have, in part because of the lack of knowledge about CFS even within the medical community. I have had doctors tell me they didn't believe in CFS, that I was probably just depressed and should "snap out of it," and even that I needed to stop causing so much distress to my family. It's really terrible some of the things doctors have said to me over the years. Not that there haven't been some competent and compassionate MD's along the way as well, of course, but they were the rarity rather than the norm. There are very few doctors educated on CFS out there, and that's a real problem.

3) I’ve seen your Youtube video, as I mentioned before, but I’d like to know more. Please tell me how being chronically ill affects your everyday life. How many hours a day do you need to sleep? How much time are you actually able to spend doing things you enjoy? Who takes care of you? What is your relationship with your caretaker like?

Prior to getting mono and developing CFS, I slept like a rock each night, and needed very little sleep to feel energized, healthy and functional. The sleep disturbances so common with this illness seemed to occur overnight for me the very day I fell suddenly sick. So, I don't often sleep very well and don't feel refreshed even when I do. I tend to get between 5-9 hours of sleep each night, depending. If I get less than 8, I am completely non-functional.

As for day-to-day activities, I'm very limited, especially following my recent setback. I tend to spend about an hour online writing and checking email and my various social outlets, and then I'm pretty much wiped out. So, the remainder of my day is usually spent listening to an audiobook or to music or NPR/talk radio. Sadly, that's about it. It's all terribly exciting. ;) Clearly it's not the adventurous, active life I'd always imagined for myself, but I do the best I can with it and try to take things day by day. I still have faith that a full, healthy life awaits me and remains attainable.Regarding assistance, I live in my parents' house and they both help me out as needed. Due to severe orthostatic intolerance, I can only sit up for about 5 minutes, but thankfully I can make it to the rest room on my own in my wheelchair (about 3 yards away), and can still sponge bathe in bed on my own as well. So really I mostly need help with food/meals, cleaning, laundry, errands, phone calls, etc. My mom does all of that for me and I'm extremely grateful to her for it.

If my parents are not available, our wonderful next door neighbor comes by to help me out as necessary. We are very lucky to have her. We used to use a disability service, and they were terrible... incredibly unreliable. So this works out much better, and I feel really fortunate about that.

This illness is often quite hard on the caretaker as well as the patient, particularly if that person is a family member. The dynamics change, and there are so many frustrations on both ends. It's very hard to watch a loved one suffer, and feel there's not much you can really do to help. So, I try to make this as easy on my family as possible and to ask for as little help as possible as well.

4) Can you lead me through an average day being Laurel?

Oh boy. :) As mentioned above, my day-to-day life is not very exciting. The highlight of my day really is checking my email and writing to/hearing from my fiance. I am usually wiped out after about an hour of online activity, and the remainder of my day is spent listening to the radio or an audiobook. Due to neurological problems, I can't read books or really watch TV, so audiobooks have become a huge part of my life. Some days I'm too sick even for that, and can do nothing but lay in bed in silence, or listening to music.

On "decent" days, I can sometimes be wheeled to my parents' bedroom to lay in their bed for a change of scenery. Their room has a larger window with a better view of the mountains, which can make for a nice temporary escape. I call it my jail break. :)

5) What kind of stigma have you experienced having a chronic illness, especially such a severe one? How has your relationship with others changed since you have been sick?

The stigma attached to this illness is tremendous. Again, I think that has a lot to do with the name. It suggests we are all just tired or lazy, and that we should be able to deal with it and get on with our lives. I still remember the first time I told someone I had CFS and they actually laughed at me. Laughter is not a response you expect when telling someone you have a serious, debilitating, multi-systemic disease. But I've actually had that response more than once, particularly when I was still working and seemed healthy. When I first became homebound, someone actually said to me "I wish I could take time off work and just lay around the house all day too." You would never hear someone say that to a person who had just become disabled with MS, HIV/AIDS or cancer, diseases the CDC has equated CFS to in terms of illness severity and disability. So, there's a real lack of understanding.

I also think there is a stigma attached to the idea of a chronic illness in general, and to the severity of that illness. That is, if you are bedbound with chronic disease and with little improvements over time, some people can see that as a failure of some sort. They think you should be able to overcome it somehow, even if there are no viable treatments available. I actually had someone (who clearly didn't know me very well) tell me that if I am still this sick after all these years, then I must just not want to get better. It was as though the person thought I would actually choose this for myself, or as though I haven't done everything in my power to try to get well. It can feel very demoralizing.

Regarding relationships, I don't think there is a single relationship this illness hasn't affected. With my case being so severe, I am unable to talk on the phone, unable to spend much time online, and can only tolerate a few minutes of interaction. That obviously creates a huge barrier on maintaining strong relationships with the people in my life. We do the best we all can to work around it, but obviously it makes things much harder. The dynamics of the relationship also change. There's no longer an equal exchange of give and take. Obviously I'm not able to give of myself in a relationship as much as I would like, and that is hard as well.

Illness in general is also a difficult thing for a lot of people to deal with. While I am fortunate that most of my friends have stayed in touch with me, there are also a couple who have quietly disappeared. People go on with their lives. I also think some just don't know what to say after awhile, especially since I can't always respond. I certainly don't blame them for that, of course. But I do miss them.

6) Would you characterize your illness as an “invisible illness?”

The fact that most of us don't look sick does, I think, contribute to the stigma and misunderstanding of this illness. It's hard for people to truly understand just how sick we are when we look perfectly healthy. Even for those of us bedbound or wheelchair bound, it's still hard for most people to really grasp. This is made worse by the ridiculous name, as discussed above. Because really, who hasn't been chronically tired? I think until the name changes, we will continue to experience misunderstanding. I'm hoping with the latest research that things will start to turn around soon. I'm especially hopeful that new and better treatments may be around the corner.

7) You’ve mentioned that you are not depressed, which I’m glad to hear. (I unfortunately can’t say the same, but I am under adequate treatment for that part of my illness story). Even so, your blog is called “Dreams at Stake.” How does putting your dreams on hold make you feel? Are you frustrated, upset, or do you simply accept your condition?

I am fortunate that depression has not been an issue for me despite my situation. Though, if it were, it would certainly be understandable. It's easy to see why someone with CFS may also suffer from depression, but important to note that the depression is most often secondary to the illness. That is, as with any debilitating disease that involves so much loss and physical pain, there is likely to be some grief and sadness to come along with that. Secondary depression can occur with any kind of serious, life-altering illness.

While depression thus far has not been an issue for me, it is not to say I don't have my down moments, or that I am not disappointed and intensely frustrated by my situation. This is especially true when I'm having a major setback like I am now, and am even more limited and sicker than usual. It is beyond discouraging. But I try as best I can to stay focused on what I have, rather than what I've lost. I think it would be impossible to get through this on a daily basis otherwise. I am fortunate to have my fiance to help with that, as I am not sure I'd have been as successful in getting through this without him.

I think it's important to differentiate between depression and frustration. With depression, a person tends to give up all hope. With frustration, the very word implies that the hope and determination and desire are all still there. So yes, I am incredibly frustrated. I am frustrated at all the lost dreams, at all the lost relationships and experiences and goals. I am frustrated with the lack of research and understanding, the misconceptions, and the stigma. And I'm frustrated by CFS itself... its severity, its limitations, its unrelenting nature, etc. It's all unbelievably frustrating. But despite it all, there's still meaning and hope in my life, and that's what I try to focus on as best I can.

As for my blog title, I have to confess I didn't come up with that entirely on my own. I had submitted my story to The CFIDS Association of America, and they asked if they could publish it. They came up with that title, and I liked it. It summed up the main reason I had written my story -- to plead for more action and to emphasize that people with CFS are people with dreams and ambitions who didn't want to be sick, and who want to get well and live out their lives just like everyone else. I wanted to show that, even though this illness has taken away the fulfillment of many of our dreams, it has not taken away the dreams themselves.

Anyway, that was a really long answer!

8) What do you enjoy most in your life?

I've learned to appreciate the little things, which when you think about it, are really the big things anyway: my fiance, my family, my friends, good food, a bed to sleep in, shelter, the views from my window, a good book, a rare day of not being in total physical distress from morning until night, being able to write when I can, etc. If this illness has taught me anything, it's to appreciate the little things, because you never know when they might be taken from you. When I first became housebound, I thought I'd lost everything. But I could still walk, talk, shower, watch TV... I didn't realize how good I had it. :) I wish I'd been more grateful for the little things then, and so I try to be mindful of that now and enjoy what small things I can still enjoy.

Finally, I’d like to hear your thoughts on blogging and online community.

1) You started your blog last May. What made you decide to start a blog?

I started to blog for two main reasons: to raise awareness, and to have a voice. I used to get so frustrated that those of us most severely afflicted with this illness do not often get to tell our story because we are simply too sick to do so, and our stories therefore are not often heard. It occurred to me one day that I could try to be that voice, even if in just some small way. I wanted my story out there, as well as Jim's, in the hopes that it could increase awareness and would perhaps be helpful to others going through the same thing.

Blogging has become more difficult for me with this last crash, but I hope to continue with it whenever I am able.

2) How has blogging increased your feelings of community (if at all)? Have you found many others who empathize and understand your daily struggles?

The blogging community is great! When I first started to blog, I had not been anticipating that it would be so interactive, and it was a nice surprise. I am not able to be as interactive as I'd like to be (it's so hard for me to keep up with it all), but it is good to know there's such a large community out there, and that we are all supportive of each other. We are not alone, and blogging is a great reminder of that.

3) Have you joined any other chronic illness communities? If so, which ones and how have they helped/ affected you?

I do belong to some other social outlets, (e.g., CFS and Lyme message boards, Facebook, a book club, etc), though I haven't been able to be as active on any of them since crashing. But it is a great way to communicate and meet others going through the same thing, or to stay in touch with old friends, meet new people, etc. It helps with the isolation that is so common with this illness.

4) Why do you blog?

Again, primarily to raise awareness, and to get my story out there. It's a tremendous thing to feel like you are finally being heard.

5) How do you balance your desire to be online with your personal struggles with sensory overload? How do you budget your time?

Oh that's a tough one!! I am not good with pacing AT ALL. I've always been an over achiever; someone who always needs to be doing something, always accomplishing something, always active and engaged. I am not one who has ever been good at waiting, or resting, or laying around. That's really been the toughest thing for me, and is a constant struggle. I don't think I'd have gotten as sick as I have if I'd been better able to manage that struggle, instead of always being so determined to try to push past it. Even now when bedridden (in fact, perhaps even more so), I don't think a day goes by that I don't push my envelope in some capacity, hoping (despite about a million lessons to the contrary) that today will be the day I get away with it. The push/crash phenomena of CFS is such a brutal and difficult lesson to learn. But I do my best with it. I try to give myself a set time of how long I spend online each day. I don't always follow that time-line very well, but I do try.

CFS truly requires an enormous amount of patience.

Thank you again for talking with me, Laurel.

It was my pleasure, Robyn. Thank you!

What I Miss Most

Note: This is a personal journal entry from a couple years ago. I was a bit hesitant to post it here, as it was written in what was a moment of grief for me.  I  pretty much bare my soul. But I wanted to share it with all of you anyway because it shows the degree of loss that can come with this illness, as well as all the hopes and dreams that fervently remain. As I continue to try to dig out of a lengthy crash, many of these emotions have again been stirred, and I wanted to express them.
~~~~
I want my life back. All of it. Every little morsel.

These are just some of the many, many things that I miss most.

I miss the feel of soft, freshly cut grass as you lie in a field on a warm summer's night, gazing up in wonder at all the stars shining like diamonds in the sky.

I miss salty ocean breezes caressing your bare skin as the sun warms every inch of your body, down to your core. I miss the refreshing, cool feeling of ocean water washing over you in a playful dance as it moves in rhythm to the pull of the moon. I miss looking at the vastness of the sea and sky, and sitting in wonderment at how beautiful it all is.

I miss picking up the phone to call and hear the sound of a life-long friend's voice.  I used to love that first familiar "hello," detecting a sweet mix of love and loyalty and happiness at hearing from me,  knowing we share a history together which includes our innermost secrets and flaws, and that we love each other just the same.

I miss the glorious feeling of a daily shower and the soft, massaging flow of water gliding over your skin. I miss the wonderful feeling of being clean and fresh from head to toe, of having bouncy hair every day, and smelling of scented soap.

I miss hearing my own voice and the liberty of being able to speak what is on my mind and in my heart. I miss being able to tell people in my own voice that I care about and love them. I miss the joy of lively conversation and sharing ideas out loud. I miss the exhilaration of a full, deep and jubilant belly laugh --  the kind that makes you catch your breath as tears of joy stream down your face.

I miss going for long scenic drives, with or without a planned destination. I miss the freedom, joy and sense of adventure that travel brings, the discovery of new territory or culture, and the sense of awe at seeing beautiful landscapes and scenic views. I miss meeting new people and the joy of new experiences.

I miss getting to see my fiance's sweet smile each day and the amazing sense of comfort I get in being wrapped in his arms.

I miss sleep -- beautiful, uninterrupted, deep and refreshing sleep. I miss waking up feeling rested and renewed, healthy and vital. I miss waking each morning knowing, without even having to think it, that my body is ready and capable to take on any adventure or challenge of the day with perfect ease and good health.

I miss the joy of learning to cook and the satisfaction of creating a well-prepared meal.

I miss cleaning! I actually miss dusting, vacuuming, scrubbing, doing the laundry and cleaning out clutter. I would LOVE to get down on my hands and knees and scrub a house from top to bottom until it sparkled. I love the feeling of a freshly cleaned home, especially in spring.

I miss having had the chance to create a long, successful and satisfying career doing something I love. I miss the feeling of achievement that comes with a job well done. I miss being able to put my ambition to work and experiencing the rewarding feeling of a difficult goal or task coming to fruition. I miss being able to wake up each morning happy to go to work, and coming home each night knowing I gave it my all and exceeded expectations in doing so.

I miss going to movies and the fun of getting absorbed into a great story on screen, whether it be one that makes you laugh, cry or think and reflect. I miss the smell and joy of eating popcorn at the theater or even in front of the TV.

I miss reading -- books, newspapers, magazines, and letters. I am ever grateful for audio-books, but there is nothing like reading a good book, cover to cover, on your own.

I miss exercising. I miss going to the gym, doing sit-ups, lifting weights and going for long (or even short), satisfying walks. I miss the joy of a good workout and the feeling that it helped to benefit my body instead of worsening it. I miss being toned and fit, and looking at my body in the mirror with some sense of satisfaction or pride. I miss having the chance to take the karate and dance lessons I've so wanted to take since I was a young girl. I miss a body that responds as it should to physical and cognitive exertion.

I miss the pure exuberance of good health, of being able to move and engage in life with ease and freedom, and without repercussion. I miss the feeling of wellness, of not being sick, of not being in constant physical distress. I miss being able to do whatever I please, even the simplest of things, without penalty. I miss having a body that matches the energy and vitality of my soul.

I miss having endless possibilities for each day. I want to wake up again one morning knowing that I can do ANYTHING I want that day and that the world awaits me.

~~~~

I also yearn for what I have not yet had.

I want to know what it’s like to spend endless hours in conversation with my fiance, getting to know him even more deeply every day and falling more and more in love with each other. I want to have many candlelit dinners and romantic evenings together, and go on fun adventures doing the things we love to do. I want to experience the simple and mundane tasks that couples share together every single day.

I want to know what it’s like to walk down the aisle on my wedding day, knowing the man of my dreams awaits me at the alter. I want to know what it's like to vow to love, honor and cherish him every day until death do us part and hear him make those same vows to me in return.
 
I want to know what it's like to have life growing inside of me; to feel the rhythm of a tiny but steady heartbeat in my belly that is not my own. I want to know what it is like to see life flow through me, to hear my baby's first breath and to marvel at the miracle of his/her arrival.

I want to know what it's like to hear a child's repeated cries of "Mommy! Mommy!" knowing it's you for whom s/he yearns.

I want to be able to change dirty diaper after dirty diaper, to soothe a child's tears, to be filled with awe at the miracle of their existence. I want to watch them smile and giggle and grow as they make each milestone, and boast to everyone with pride.

I want to go to my future children's dance rehearsals, soccer games, school plays and piano recitals. I want to do crafts and bake cookies with them, play sports with them, help them with their homework and school projects, and teach them about values and morals. I want to go on vacations together as a family and watch their joy as they experience new adventures for the first time. I want to be there for them in all their good times and bad; to be fully involved and deeply interested in everything they have to do and say. I want them to know without a shadow of a doubt that I love them unconditionally.

I want to be able to play and get to know my niece and nephew. I want to be able to hug and kiss and talk to them so much that they get sick of me. I want to take them on adventures they will never forget and help them make memories they will cherish for a lifetime. I want to be a good godmother to my godchildren, to be their buddy and friend and someone they admire and look up to.

I want a successful career doing what I love. I want to get my master's degree and make a difference in the world doing something that brings me joy. I want to do volunteer work, knowing I am helping those in need, and helping them make dreams come true.

I want the chance for a full, engaging, adventurous life as I express all the vitality, energy, joy and spirit of my soul.

I want the chance to fully be me.

My CFS/CFSAC Video Testimony

At the end of October, the CFS Advisory Committee will once again meet to provide advice and recommendations to the Secretary of Health (via the Assistant Secretary of Health and the U.S. Department of Health and Human Services) on what directions to take in terms of CFS research and strategic planning. 

It has long frustrated me that those who are the most severely afflicted with ME/CFS often go unheard. We are not represented at these meetings because we are too sick to attend them.  In hoping to tell my story and perhaps be a voice for the voiceless, I decided I would attempt to create a video testimony (with assistance) which could hopefully be presented along with the other in-person testimonies. I officially submitted the video a couple weeks ago, and am currently awaiting a response.

In the meantime, I've included a link to the video below.  A non-profit group called PANDORA (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy) has also already featured the testimony on their youtube channel.

Since I am unable to speak above a whisper, my sister-in-law graciously agreed to do the voice over for me, so it is her voice that you hear in the video. I am extremely grateful to her for all her help!
 




Thanks for watching and for hearing my story.

*Update: I just got word my video testimony has been accepted, and will be viewed at the upcoming CFSAC meeting (along with other patient testimonies) on October 30th around 9:15 a.m.  I am very excited and happy to receive this news! The two day meeting will be videocast live, if anyone wants to watch it online. For more info, visit: http://www.hhs.gov/advcomcfs/

Much thanks to all who left me such kind comments and words of support!!

Waiting from Within

I wrote this poem several years ago, not long after first becoming bedridden with ME/CFS.

WAITING FROM WITHIN

I lie each day
beneath the thick covers of my bed,
my body slowly descending downward
far beyond the realms of exhaustion
and sickness,
as though I am perpetually dying.

And yet,
the very center of my being,
the essence of who I am,
remains deeply alive;
familiar, constant and unyielding.
It exists of a strength and vitality
entirely its own
as it waits silently from within
for its wondrous moment
of release.

For now,
I can only watch as the days pass
outside my bedroom window.
In the distance,
I can hear
a baby crying
and a woman laughing
as birds sing out their songs.
I imagine that their expressions are my own.
They each speak for me
with a voice and a freedom
I do not yet possess.

--LB © 2002

The opening of this poem was inspired by (and slightly borrowed from) the following quote:

“Each day as I would slide into the downward spiral of my symptoms, I would feel as though I were suspended at the edge of death. As if I were perpetually dying.”

Susan Griffin, describing CFS in What Her Body Thought: A Journey into the Shadows

My story

I remember the exact moment I first became ill. It was December 31st, 1996 around three o'clock in the afternoon. I was walking down the hallway of my cheerful, two-bedroom apartment, about to shower and get ready to go out with friends so we could celebrate the new year.  As I got about halfway down the hall, I quite literally and suddenly felt like I had been hit with a ton of bricks. I remember stopping in my tracks as I leaned my hand against the wall to hold myself up. "What is happening?" I murmured out loud, astounded by how abruptly ill I felt.

Dizzy, I made a beeline to the living room so that I could lie down on the couch and rest, hoping somehow that would be enough to make whatever this was go away. What bad timing, I thought, to have apparently come down with the flu on New Year's Eve. I turned on the TV in an attempt to distract myself from how sick I felt, but the images on the screen seemed so dizzying that I could barely tolerate two minutes of it. I had to turn it off.

My roommate walked in and I told her I thought I might have the flu. I didn't think I'd be able to go out that night. As I said the words, I distinctly remember thinking (and perhaps intuitively knowing) this was something much more significant than your average virus.

However, not one to be deterred by a silly bug (I virtually never called in sick to work), it didn't take much for my roommate to convince me to go out anyway. I told myself I'd feel better after I showered. I didn't.

We took the city bus to a club in Boston where we were to meet up with friends. As I sat in my seat, eyes closed from lights that felt too bright, I remember everyone's voices seemed simultaneously too loud and yet somehow distant and muffled, as though we were all mysteriously traveling underwater. I felt myself sweating from fever, though it was below freezing outside. My temperature that night, I later learned, was well over 104.

I honestly am not sure how I got through the evening, except to continuously tell myself all would be better in a few days. I remember laughing and drinking and even dancing on the dance floor. With the exception of my roommate, my friends remained clueless to the fact that I felt even remotely unwell. As midnight approached, I counted down the seconds with a room full of people as we all shouted out loud: "Ten... nine... eight..." Little did I know at the time that I was not just counting down the last few moments of 1996, but the last few moments of my life as I had known it.

The next morning, I woke up in a pool of sweat with swollen glands and a terrible cough. I got out of bed and clung to the walls as I made my way to the shower. Moments after turning the water on, I collapsed and fell to my knees with dizzying exhaustion. Something was dreadfully wrong. I fumbled my way back to bed and called my doctor.

Two days later, the nurse phoned to tell me that I had mononucleosis. I would need to stay home for at least two weeks, she said. "Two weeks?" I replied in dismay, “I’m going to feel like this for at least two whole weeks?" In actuality, it’s now been 13 years, and I am regretfully still counting.

When months went by and I did not seem to fully recover, I went through a myriad of tests and skeptical doctors before (two years later) I had an official diagnosis: CFS. I remember the first time a doctor suggested it to me. “You might have chronic fatigue syndrome,” he said. “Some people develop that after severe cases of mononucleosis.” The funny thing was, I didn’t realize at the time that he was actually diagnosing me with anything. I thought he was just telling me what I already knew: that, following mono, I had become chronically ill and exhausted. It wasn’t until another doctor brought it up again that I realized that was actually a name for an illness. “I feel way too sick to have something called chronic fatigue syndrome,” I told her.

But, as it turns out, as ridiculous as the name is, CFS is a real and devastating disease.  Its original name (used in the U.K and some other countries) is myalgic encephalomyelitis (ME).  ME is currently classified under the World Health Organization as a neurological disease, though it also affects the immune, endocrine and other organ systems. The CDC recently acknowledged ME/CFS as a real and serious illness that can be as debilitating as multiple sclerosis, late stage AIDS, chemotherapy treatment, COPD and end stage renal failure. It has been estimated that ME/CFS afflicts at least one million people in the U.S.

Yet, despite this, ME/CFS is still one of the least funded of all illnesses in the United States. More money is spent studying hay fever every year than on ME/CFS.

Due to such limited funding and research, to date there are very few treatment options currently available (none FDA approved), and much of what is available is primarily trial and error. I have spent my entire life savings on various treatments to try to get well. Thus far, not one has worked, and many made me worse.

I have always been a very determined person, often to a fault. I went back to work the very morning I woke with my temperature just barely below 100 degrees (three weeks after the original onset), though I otherwise was not much improved. Clearly, it was too soon. Within a month, my 104 fever had returned and I was unable to work for another three weeks.

Following that setback, I was able to push myself to continue working full time for the next few years; however, it was not without great difficulty. I often had to rest in my car during my lunch hour, and went straight to bed upon getting home. I was running my body to the ground and, though I knew this, I did it anyway. I was of the mind-set that I could push through anything and that, with enough determination, I would eventually overcome.

Not so. I learned the hard way (and I am still learning) that ME/CFS does not reward that kind of forced perseverance. After years of pushing my body beyond its capacity, I had a setback (known in the ME/CFS community as a “crash”) so severe I ended up housebound and had to quit my job. Not long after that, I had a crash that left me bedridden and unable to speak above a whisper. That was nine years ago. I have spent what were supposed to be the most vital years of my life sick, barely able to speak and confined to my bedroom.

As with many of those stricken with this illness, I was previously a fully healthy, energetic, ambitious and well-educated young woman. I graduated magna cum laude with a B.S. in psychology from Tufts University. I worked in human resources, first at an internationally known publishing company in Boston, then at a state university. I traveled extensively in my youth, including a year abroad in London, during which time I back-packed through Europe for a month at spring break. After college, my friend and I spent nearly two months driving 6,000 miles across the United States.

I love to travel. I love to learn. I love to draw and read and spend time with friends and family. I love photography and the outdoors. I love to dance. It's not that I no longer want to do these things. It’s that I can't.

Despite my situation and isolation, I was fortunate several years ago to have found a friend and companion who can relate to my struggles and who brings me hope and laughter every day. We met online, and we write daily. His friendship and sense of humor are my strength. He, too, has a severe case of ME/CFS, and is wheelchair bound. And he, too, became ill at a young age after a severe case of mononucleosis. He has been ill for nearly 25 years now.

Somewhere in the midst of writing each other for over five years, we became best friends and fell in love. He’s the most extraordinary person I know. Last spring, he found the strength to fly out to surprise me and propose, and I enthusiastically said yes. We are now thrilled to be engaged and can’t wait to be well enough to get married someday. We dream of having children and raising a family. We dream of successful careers, volunteer work, travel, adventure and all the things we’ve so longed to do. A former athlete in high school and college, my fiancé dreams of one day being able to run again. He has a PhD in mechanical engineering from Carnegie Mellon and might like to teach someday.

I hope to someday get my master's in speech pathology and work with deaf or special needs children. I also have aspirations of perhaps starting my own business.

I dream of the little things, too. I dream of someday being able to walk down the hallway or outside to stroll in the yard. I dream of being able to take a bath or a long, hot shower instead of a sponge bath. I dream of being self reliant and not relying on others for basic care. I dream of being able to call and spend time with my friends and family, and of the ability to speak for hours about their daily goings-on as we catch up on so many years lost. I dream of being able to play with my niece and nephew instead of being limited to letters to communicate. I dream of holidays spent with loved ones instead of all alone, as I am currently unable to travel and my health cannot handle many visitors. I dream of walking, and running and dancing. Most of all, I dream of the vibrant, glorious feeling of good health, and I strive for it every day.

Meanwhile, I remain forced to watch through my bedroom window as time slips by. The battle goes on.

I share all this with you today so that you can help spread the word that more needs to be done. More needs to be done to raise money for research so that treatment options or even a cure may be found. More needs to be done to help raise awareness and understanding so that those with ME/CFS are not made to feel shamed for being ill on top of all else that they go through. More needs to be done to educate doctors so that patients are not so easily dismissed or mistreated. And more needs to be done to change the name to one that doesn't trivialize the condition, and doesn't merely focus on just one of the many different symptoms associated with the disease. The word “fatigue” doesn’t come even remotely close to describing what we experience. We are sick, not tired.

Above all, more needs to be done so that those of us stricken with the disease can have our lives back.