Some Resources for Those who are Bedridden

Years ago, when I first became housebound (and eventually bedridden) with ME, I had very few places to turn.  I was living alone at the time, and while I had some friends and family nearby who were willing to help, my sense of pride prevented me from asking for the wide range of assistance I suddenly needed.  Overnight, I had gone from working full-time to being unable to grocery shop, do my own laundry, clean, cook or otherwise care for myself.  Doctors did not have answers for me, and the ordeal of getting out to appointments in and of itself would often set me back further.

Desperate for help, I contacted various agencies and organizations looking for assistance. However, more often than not, I was turned away.  Unless I required hospice care or had a lot of money to spare, few had anything to offer me.  Indeed, I have been continuously surprised by the scarcity of resources there are for those who are chronically housebound and/or bedridden.  These lack of services became even more evident to me once I began blogging. Unfortunately, I have received numerous emails over the years from other bedridden patients who have been unsuccessful in seeking the same kind of help that I, too, have had such difficulty finding.
     
In light of that, I thought I'd share a few services I've come across in the hopes it may provide some benefit to those who need it.  Please realize that, unless otherwise noted, these are agencies and resources I've found simply by doing a basic web search over time. I am not affiliated with any of these companies or websites, nor do I know anything about the quality of service or expertise they offer.  It's important for anyone to do their own research about an organization when seeking out professional help.

First, there are some services that are provided by Medicare and Medicaid for those who qualify.  For a comprehensive list of what Medicare offers in home health care services, please check out their Medicare and Home Health Care brochure.

Regretfully, many of the services Medicare does NOT offer are those that bedridden/housebound ME patients often desperately need -- particularly those who cannot rely solely on friends and family, or who spend much of their days alone.  These exclusions (if they are the only assistance you need) include personal care given by home health aides (such as bathing and dressing), meal delivery and homemaker services like shopping, cleaning and laundry.

From what I understand, should you qualify, Medicaid offers more services than Medicare.  These services tend to vary by state. For more information, check your state's Medicaid program, or visit http://www.cms.gov/home/medicaid.asp

Fortunately, there are many in-home health care agencies around the country that will provide cleaning, shopping, meal preparation and some degree of medical care, but at a fee. For those who can afford it, a quick online search can provide information on home health care in your area.  Nurse visits can also often be arranged through these agencies; however, generally speaking, doctor visits can not.  Most agencies will instead provide transportation to a doctor's appointment for those who are able (free transportation services are also often available to those who qualify).  However, for many with severe ME, a trip to the doctor's office, even with assistance, is not always possible due to the severe (and sometimes permanent) setback such an outing can cause.

In the last many years, there seems to be a growing number of organizations throughout the country that are beginning to offer physician services in the home. One such organization is the  Visiting Physicians Association.  Also, the American Academy of Homecare Medicine  offers a list of doctors by state who, as a public service, also make house calls.

Please again note that I am offering this information as a resource only and have no other knowledge about these agencies beyond what is listed on their website. Also, keep in mind that while these doctors make house calls, they may not (and, in most cases, probably do not) have extensive or even basic knowledge about ME.  Regretably, it is very difficult to find a doctor well-informed about the complexities of this disease, particularly in its severest form.  It is even harder to find one who is also willing to make house calls.

For those who may not be aware, Dr. Charles Lapp, an M.D. in North Carolina, recently put a call out to severely ill/bedridden ME patients. Right now it appears he is merely collecting the information, with possible hopes of  trying to find ways to provide care to these patients in the future.  For more information about contacting Dr. Lapp, please see here.  If nothing else, it's important for doctors to realize how many of us are out there looking for help. 

Specialty doctors for basic dental or eye care at home can also be extremely difficult to find. However, there are some dentists and optometrists who will offer limited care in the home for those who are bedridden. You can contact your state's dental or other specialty organization to ask if they are aware of any doctors in your area who make housecalls. For example, with some persistence, I recently found an optometrist willing to come to my home by emailing my state's optometry association.  A couple years ago, through the help of a local acquaintance, I also found a dentist in my area who routinely makes house calls,  which turned out to be a true life-saver for me.  I would never have survived such an extensive outing to fix all the issues I was having.

Many cities also provide mobile services for ultrasounds, EKGs and X-rays (with restrictions), provided you have a doctor who will order the tests for you.

Please note, however, that many of these doctors and services do not accept insurance, or insurance will not pay because the services are provided in the home.  This of course means that, unfortunately, these options might not be feasible for most patients.

I've also received many emails over the years asking how I avoid bed sores, or what kind of products I use to ease my comfort or accomplish certain tasks throughout the day. I am fortunate that I am well enough to sit up and turn myself in bed, and can still get up to use the bathroom on my own each day (the latter with the help of my wheelchair).   As of yet, bed sores have not been an issue for me. However, there are products available to those who find this a concern, as well as other products designed to make life a bit easier for the bedridden. AllegroMedical is one site where you can purchase such items, but there are many other websites available as well.

Those who have read one of my former blog entries, Eyes Wide Shut, know that, as a result of cognitive problems stemming from ME, I rely on a text-to-speech program to help me navigate online and to read all my emails and other items for me.  There are also several speech-to-text programs available for those who would find that helpful.  I don't have an iPod or iPad, but I know some versions have a voice application called Siri that could be useful to some patients.

I also participate in my local library's Books-By-Mail program, which is a free service that lends audio and large print books by postal mail to the visually impaired and disabled.  Many libraries have similar programs.

In addition to all the above, Emily Collingridge wrote an excellent book called Severe ME/CFS: A Guide to Living.  It is designed specifically to help provide a wide range of  resources to those with severe ME and/or CFS (geared towards the UK, but useful for all).  Her book can be purchased through her website (http://www.severeme.info/).  

Lastly, this illness, especially in its severest form, is incredibly isolating. I have received many emails requesting information on how to meet and communicate with other bedridden patients.  This is difficult for many reasons, but primarily because most bedridden patients are too sick to be online for any length of time, and thus cannot fully participate on social media or other similar forums.  However, for those who are able, sites such as Phoenix Rising,  HealClick, ME/CFS Forums and Facebook social groups like Severe ME Chat and Support. might be useful and provide some comfort.

Perhaps the most helpful piece of information for those bedridden with ME  is simply knowing you are not alone.  Here is a list of just a few blogs and websites written by or devoted to those with severe ME (more links can be found to the right of this page):

• A Rainbow at Night: Resources for Severe ME
• Behind the Surface
• Cheering from the Sidelines
• Dead Men Don't Snore
• Documenting ME
• JK Rowbory
• Heaven in My Foot 
• Living with CFS
• No Poster Girl 
• Rag and Bone Shop of the Heart
• Severe ME/CFS: A Guide to Living
• Slightly Alive
• Stonebird: The experience of Severe ME
• The 25% Group
• The Corner Room
• Through Closed Curtains 
• Turning Straw Into Gold
• Voices from the Shadows: Movie Trailer  

*More blogs have since been added to the above list after others brought them to my attention.
Also, Lily Silver's excellent blog, How to Get On, is an excellent resource for anyone on disability. It covers such topics as Medicaid, Medicare, affordable housing, home-care, medial equipment, etc. You can find the blog at: https://howtogeton.wordpress.com/

"Just knowing you're not alone is often enough to kindle hope amid tragic circumstances."
― Richelle E. Goodrich
~~~

If others have additional resources to offer on any of the above, please share them through the comments section below. My research abilities are restricted due to my physical limitations, so I'm certain there are things I have left out.  Also, the resources listed in this post are specific to the U.S. since that is where I live.  No doubt resources in other countries will differ.  Thanks for understanding!

Small Victories and a Few Sweet Moments

I have not posted to my blog in quite some time. Primarily, this is because I haven't felt well enough to put my thoughts together in any kind of formal, unified manner.  But it's also in part because, being bedridden, not much happens in my life that feels all that worthy of noting. I wake up each morning, I check my e-mail, I eat some food, I look out the window, listen to some audiobooks or the radio when able, then -- exhausted from this minimal activity -- I am forced to go back to sleep. Day in and out, year after year.

Occasionally, though, things do break from the norm.  This past winter, for example, I woke up one morning to a rare dusting of snow on the ground. As a native New Englander, this would hardly seem worth mentioning. However, having lived in Arizona for 15 years now, the sight of snow accumulated on the ground (versus merely gracing the tops of mountains) feels like some sort of magical event. Thus far, I've only seen it happen twice.

Of course, this being a desert, the snow had completely melted within a few hours of morning sunlight.

In other news, this past March, Jim and I celebrated our 10th anniversary. He sent me a beautiful bouquet filled with 10 unique flowers to represent each year. It was incredibly sweet and thoughtful of him, as always. Our relationship continues to be long distant as a result of our health, but it remains as strong and rewarding as ever.

In April, my brother and his family came out to visit. I got to see them for the first time in two years. As with their last visit, my health only permitted me to spend a few minutes with them each morning. It was just enough time for me to enjoy seeing their smiles every day, give them a hug and tell them I love them. As much as I yearned to spend more time with them, I was grateful for every moment we were able to share.

I also loved to hear about some of their adventures as they visited various tourist sites in the area.  Here's a photo of my adorable niece and nephew at Sabino Canyon, which was one of my favorite places to visit back in my healthier days (photo courtesy of my brother).

When you have severe ME (or, for that matter, even mild to moderate ME), life becomes all about the small accomplishments and the rare but sweet moments of slight reprieve.  Perhaps that's why, when I got to move from a bed and lie outside for the first time in over two and a half years, it felt so amazing and utterly liberating to me.

This was the first occasion in almost three years that I really felt well enough to even consider lying out. It also helped that we seem to have found a way to make it a bit easier for me, eliminating the need for a ramp. My parents move the lounge chair right up to the sliding glass door, so that all I have to do once they wheel me to it is plop down from my wheelchair. Getting back up is a bigger challenge, but thus far, I seemed to manage it without too huge a setback.
 
It's one thing to see a small patch of sky from your window every day, but it's another to have it right above you.  I tried to soak it all in as best I could.

Spring is such a beautiful time of year here, with all the colorful cactus blooms brightening up the desert.  Everywhere I looked, I saw tiny splashes of pink, yellow, red, white and orange.

I also loved seeing all the tree branches gently swaying in the wind as all sorts of different birds sang their pretty songs.  It was almost like watching nature put on some sort of graceful ballet.

My own bedroom window continues to allow me momentary glimpses of other lovely sights as well.   On one recent Sunday morning, two deer showed up and decided to lie out under the shade of one of our mesquite trees for well over an hour.  They were beautiful.

Apparently, much like cattle, deer will lie down in a secluded place to chew and digest their food. I was glad they chose a spot so close to my window where I could watch and admire them.


And that about sums up some of the basic highlights of the last six months of my life.  There were plenty of negative highlights as well, of course, but I'm choosing not to focus on those for now, as there's no sense in reliving them in any detail.  The repeated setbacks and crashes that inevitably come with this disease often can be so brutal, persistent and difficult to put into words that, as soon as they lift even slightly, one doesn't want to look back.  

Overall, my health remains the same. I am still mostly bedridden and unable to speak much more than a few words above a whisper.  I still can't stand, walk, read, take baths, watch TV or fully care for myself.   However, thanks to small victories and a sprinkle of precious moments like the ones above, I also still have hope.

________________________________________________________
Note:  After a long break, I am back on Twitter!  However, I lost all my followers when I deleted my account.   If you'd like to follow me or re-follow me, I can be found here: @DreamsAtStake

Nature's Solace

Sometimes, on "good" days, my parents wheel me to the other end of the hall where, for a couple hours, I am able to lie in their bed instead of my own.  I often refer to these days as my jail break. It is the only time I ever really get to leave my room and see an alternate view. I am fortunate that this alternate view also happens to be so gorgeous.

 

A funny thing happens when you are confined indoors to one room day after day for over a decade.  The outdoors becomes almost surreal in its beauty.  The mountains are always more majestic than I remembered, the trees a brighter green, and the sky so vast and vivid blue that it takes my breath away.  It feels a bit like being a child, discovering the world for the first time. 

 
I try to notice something new with each visit, such as a shrub or cactus that previously escaped my notice, the formations and patterns of the clouds, the way the branches of a particular tree sway in the wind, or how the sunlight casts varying shadows on the mountains.

A few months ago, I discovered something I'm surprised I'd never seen before.  I've been looking at these mountains now for years and somehow never realized that there's an old man up in those rocks.  I'm not sure if he's always been there, or if there's been a slight change in the shape of the rocks to make him appear more prominent. But he's there, lying down on top of the mountain, facing the sky.

(Click to enlarge, or click here for a detailed photo)

Now that I've found him, he's pretty much all I can see. I like him, though.  We are living parallel lives: lying motionless, enduring the storms that come and go. The only difference is that he gets far more sunshine than I do. :)

I also love to see the birds soaring through the sky with so much ease, grace and freedom.  They fill me with both awe and envy.

Back in my own room, a variety of birds and wildlife continue to keep me company through my window.  The goldfinches are still my favorite.  They bring a brightness to the desert and sing such beautiful songs.

Lesser goldfinch

Besides my window views, my only other real means of escape is through audio-books. Due to neurological and cognitive problems stemming from ME, I have not been able to read or watch TV in 12 years. Thus, my main way to pass the time is through listening to the radio or to audio-books from the library.  Sometimes, unfortunately, I'm too sick even for that and am unable to tolerate any sound at all.  On those days, the dreams that come with nightfall are my only relief.


Recently, I listened to the audio version of The Diary of A Young Girl by Anne Frank.  For those who may not already know, during World War II, when Anne was just 13 years old, she and her family went into hiding in the attic of an old office building to escape capture by the Nazi regime.  They remained there for two years before being discovered.

I first read Anne's diary as a teen. It was quite interesting for me to revisit from my current perspective –  as one who is also living in confinement (though clearly confined for different reasons). 

Anne, too, writes of how nature took on a new beauty for her.  Things she once took for granted and barely noticed now rendered her speechless. Because it was so dangerous for her family to be seen, shades were always drawn and glimpses of the outside world were rare.  Anne loved to go up to the upper floor of the attic where she and her companion, Peter, could look out the window at some distance. She writes:

“The two of us looked out at the blue sky, the bare chestnut tree glistening with dew, the seagulls and other birds glinting with silver as they swooped through the air, and we were so moved and entranced that we couldn’t speak.” 

Anne felt nature was the best remedy for coping with her dismay about her circumstances. Nature made her feel like God was present and that all was as it should be.  As long as the beauty of nature existed, she stated, “I know that then there will always be comfort for every sorrow, whatever the circumstances may be. And I firmly believe that nature brings solace in all troubles.”

I, too, often find solace in nature.  There is something comforting in its beauty and perfection.  It is a reminder that there is harmony in life; there is possibility and hope.  Someday I will no longer be limited to windows in order to see blue skies.  Someday the answers will come, the doors will open, I will step outside and be free.

Testimony: A Glimpse into Severe ME/CFS

The upcoming CFS Advisory Committee (CFSAC) meeting will be held in Washington on November 8th and 9th. For those who may not be aware, the CFSAC exists to provide recommendations to the Secretary of Health on what directions to take in terms of research, science, care and broader health issues related to ME/CFS.

I had hoped to make another video testimony for presentation at this meeting; however, my health simply did not allow for it at this time. My testimony was therefore submitted in writing. You can find it below.

My goal was to show the faces and tell the stories of some of the more severely ill -- stories about this disease that are not often told. I wanted to do this not to evoke sympathy, but to create awareness and incite action.

Regretfully, I was told the testimony would not be accepted with the inclusion of photographs. I therefore had to resubmit it, excluding the pictures of the patients. However, I am posting my testimony here as it was originally submitted (including the photos) because I think it's so important for people to see our faces.

Much thanks to all those who granted me permission to share their stories and photographs. I am in awe of their strength and spirit.

~~~

Dear ME/CFS Advisory Committee,

Myalgic Encephalomyelitis (ME), often inappropriately referred to as chronic fatigue syndrome (CFS) in the U.S., is a serious and debilitating neuro-immune disease. While cases vary from mild to severe, studies have shown that many patients experience a level of disability equal to that of heart failure or late-stage AIDS.

It has been estimated that 25% of ME/CFS patients are fully disabled --often housebound or bedridden for years on end.

Yet, not many know the full spectrum of the illness because much of the suffering occurs behind closed doors. Patients are often too sick to tell their story. Some are living in darkness, some in silence and some in both. Some have not been able to leave their bed in years. Some struggle to eat, drink, speak and even breathe.

The following are just a few of those patients' stories.

My name is Laurel. I was 24 years old when I came down with ME/CFS following an infection with mononucleosis. I was active, ambitious, successful and well-educated. I loved travel, adventure and spending time with friends and family.

I never expected, at the prime of my life, to spend over a decade bedridden -- stricken with a horrible disease that has a trivial name and no effective treatments.

I am unable to stand, walk, speak above a whisper or fully bathe and care for myself. I have lost 15 years of my young adult life -- 15 years which can never be retrieved.

~~~

My fiance, Jim, was a former athlete in high school and college who earned a PhD from Carnegie Mellon.

Jim fell suddenly ill at age 19 after developing mononucleosis. He's been sick for almost three decades - more than half his life.

His dreams and ambitions cut short, he's been housebound and unable to work for years. He requires a wheelchair because he can no longer walk. He longs for the day he can run again.

~~~

Nina was struck down with ME/CFS at age 27 following a flu-like illness.

A young woman with many hopes and dreams, her life was suddenly turned upside down. She used to love to dance. Now she is unable to leave her bed and needs constant care.

At one point, Nina became so sick that she was struggling to eat, drink, talk and even breathe. She has been hospitalized several times. Her biggest wish is to be strong enough to sit in a wheelchair again, if only for a couple of minutes.

~~~

Alexis before ME/CFS

Alexis -- an ambitious, successful and energetic young woman -- also fell suddenly ill in her late 20s. She has been sick and housebound for many years now. As a result, Alexis' hopes for her future have all been forced on hold.

Alexis recently suffered a severe setback, leaving her unable to tolerate light or sound due to the neurological problems imposed on her by severe ME/CFS. She must now live in darkness and silence 24 hours a day/7 days a week.

Her family currently communicates with her using Tactile Fingerspelling – a form of sign language for the deaf and blind. She cannot even tolerate the sound of whispers.

~~~

Ben was a healthy, active 18 year-old when he became suddenly ill following an infection with mononucleosis, which later led to a diagnosis of ME/CFS.

Now 23, Ben is essentially completely bedridden. On a good day, he can take a few steps with a cane. At 6'2 he weighs just 118 pounds. He needs others to wash his hair and cut his food.

Ben spends every day in bed as his friends and peers move on with their lives, doing and experiencing all the things he longs to do but no longer can.

~~~

Marian was a former registered nurse (RN, MSN). She created a company called TrakMed, which provided trackside medical care for many auto racing teams. She partnered with General Motors Racing, providing innovative care for their drivers and teams.

Marian became suddenly ill in her 40s following a flu-like illness. She has been ill with ME/CFS for 10 years and is currently housebound and mostly bedridden. She often has trouble sitting up in bed, and she requires supplemental oxygen to breathe. Her sister, who also suffered from the illness, died of heart failure as a result of ME/CFS at age 49. Marian sometimes worries that she may meet the same fate.

~~~

Emily became ill with ME/CFS when she was just 6 years old. She's now 30. She's been sick for 24 years -- almost her entire life.

She writes:"I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison."

Emily's daily life involves medicine/fluid being pumped into her stomach through a tube, various injections, diaper changes, transient paralysis and pain so severe she sometimes hallucinates.

"This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change."

~~~

Please listen carefully to the testimonies being presented today. Please see our faces, hear our stories and understand our desperate plight. Some of us are quite literally fighting for our lives.

In return, we are not asking for much.

We are simply asking for the basics of what should be expected with any illness:

• a clear and accurate definition,
• an appropriate name that doesn't belittle the disease,
• adequate funding for serious biophysical research,
• clinical trials of medications in search of treatments and a cure,
• and increased awareness/education about the true nature of this horrible disease.

That's all. It's what is done for every other illness of equal severity. It's even what is done for illnesses of lesser severity. Why has it not been done for ME/CFS?

We've been waiting 30 years for the government to take action. We cannot wait any longer.

Thank you.

Note: Due to my health, it took me over three months to complete this testimony. All photos and stories are presented with permission.


March 2012 Update: Tragically, Emily, one of the young women mentioned in this testimony, passed away on March 18, 2012 due to complications from severe ME following a prolonged hospital stay. My thoughts and deepest condolences to her friends and family.
_______________________________

To read this testimony translated into German (thanks to Nina!), click here.
To read this testimony translated into Dutch (thanks to Zuiderzon!) click here.

Recognition and Reflection

The below journal entry was written in 2001 sometime after becoming mostly bedbound and unable to speak above a whisper. I had lost so much, and had no real means by which to communicate that loss. I was still living in my small apartment then, and at the time, could shower and heat up food on my own. However, doing so took every single tiny morsel of energy I had and rendered me otherwise bedridden. I had no real computer access, as I could not read or sit up at the computer long enough to write mail (I did not have a laptop or portable email device yet). I couldn't talk on the phone or carry a conversation. I had not yet met my fiance. While my friends and family did what they could, geography and my own limitations in communication often left them at a distance. I was essentially alone. It was then that I started to keep a journal.

Journal writing had its own difficulties, however, as I could only hand write a few sentences at a time. Typing with one's eyes closed is one thing, attempting to write by hand with your eyes even partially closed is another. In fact, writing proved so difficult that some of my old journal entries are completely illegible.

I thought I'd share one of my first (and more decipherable) entries with you today, as it expresses some of the loss, isolation and self-reflection that severe, chronic illness so often imposes on us. It also speaks to the undying, inner spirit within, and of the deep desire to have a witness to our experiences.

~~~~~~~~~~~~

June 2001

On most days, being virtually bedridden, I often lay for hours with nothing to keep my company but my own thoughts. I have an incredible need, at times, to make sure I get these thoughts on paper. Not because I feel they are noteworthy insights at all -- in fact, usually they are fairly simple observations. It is more that getting my thoughts on paper seems to legitimate my existence somehow. It makes me feel that my time here locked up in my bedroom for months on end is not entirely wasted, and that, someday when I am well, I will be able to look back and see what was going through my mind while I spent week after week in solitary confinement. Perhaps someday I will read this journal, written in the darkest time of my life, and remember never to take anything for granted again. Perhaps, too, it will serve as a reminder that, even in the worst of times, hope can still endure and there is always something for which to be grateful.

I think, of course, that I also need some form of communication... some way to tell my story, to explain my experience, and to process it all so as to better understand myself and what is happening to me. Having virtually no contact with the outside world, this journal is now my only real outlet.

Cut off from others, I also feel that others are cut off from me. No one knows my daily thoughts, my current hopes and dreams, my joys and sorrows of each day. No one knows the enormous amount of strength and determination it takes for me to get through each moment of this illness. Thus, in this way, I feel twice made invisible, not just by the decline of the body itself, but by the subsequent inability to express myself.

In What Her Body Thought: A Journey Into the Shadows, ME/CFS survivor Susan Griffin describes this need for expression well when she says:

The hope is not just for the healing of the body, but for an emphatic understanding. To be seen. To be known. ...Shaken, left without any way to articulate the nightmare, and therefore isolated not only by bodily trauma, but by its incommunicability, I have felt an overriding desire for recognition.

In my case, I think I'm searching for recognition not just from others, but from myself as well. I think it is impossible to suffer a serious illness without seeking deeper meaning and trying to understand who you truly are, and why you are here.

Despite the multitude of limitations this illness has thrust upon me, I do feel the core of me still remains. Having been stripped of almost all attachments and all the things I once thought defined me, I am often struck by that indestructible sense of "being-ness" inside me that I still recognize as myself. In fact, I see it with more clarity than I ever did before. In losing the healthy body I had always depended upon, the center within me seems to want to emerge more profoundly than ever before. I have such respect for that part of myself, and that part in all others as well, that shines from within.

I am reminded of a short story I read in college called Pale Horse, Pale Rider by Katherine Anne Porter. The story, set at the time of the 1918 flu epidemic, is a semi- autobiographical account of the author's own experience with illness and that precarious edge between life and death. As the main character, Miranda, falls deeper and deeper into sickness, Porter writes:

....There remained of her only a minute fiercely burning particle of being that knew itself alone, that relied upon nothing beyond itself for its strength; not susceptible to any appeal or inducement, being itself composed entirely of one single motive, the stubborn will to live. This fiery motionless particle set itself unaided to resist destruction, to survive and to be in its own madness of being, motiveless and planless beyond that one essential end. "Trust me," the hard unwinking angry point of light said. "Trust me. I stay."

What that inner light, that will, or that undying and untouchable sense of "me-ness" actually is, I don't know. But I silently thank God every single day for its presence.

I have so many more thoughts I'd like to express right now, but so little energy to say it. And yet, such is how it is. I have no choice but to do what I can with what I have. It's all anyone can do.

______________________________________________________________________

Edited August 2011

Recognition and Reflection was originally published in Life Skills Magazine, 5th edition (June 2010). It is being reposted here with permission of LSM. If you would like to receive a free copy of Life Skills Magazine, you can sign up here. Please also check out Discovering Purpose, a blog about creating a purpose-driven life.

Small Moments of Grace

Not much happens in my world. The days come and go, the sun rises and then falls again, the seasons repeatedly turn and the traffic outside my window zooms by. As I remain here, sick and essentially motionless, I watch as everyone else hurries to work, to dinner, to a friend's house, or to some event or adventure I cannot partake in.

I long to re-enter the world of the living; to wake up one morning free from all bodily constraints, able to jump away from this bed and the disease which has taken so much from me.

In the meantime, I continue to try to remind myself that my life, with all its physical pain, sickness and struggle, is not without its own quiet moments of activity, beauty and purpose.

A couple years ago, a friend of mine from back east (who also happens to be a former boss, and one of the sweetest people you could ever know) sent me an amaryllis plant for Christmas. I watched in wonderment as it slowly transformed from a tiny bulb to six individual, colorful blossoms.

This spring the plant bloomed for a second time, going from this:

to this:

It's an interesting thing, watching a flowering plant bloom. There's a serenity to it; a sense of wisdom, elegance and quiet patience. I could do well to learn to possess such virtues.

Ironically, I've never been one who was good at resting, nor at being still. Even confined to this bed, I want always to be doing, to be accomplishing something, to know I am somehow still making a difference in the world. I struggle to just be. I appreciate nature's silent and gentle reminders that sometimes there can be beauty in merely being present to what is; to existing, breathing and hoping.

As I struggle with my forced solitude, I am happy to have a new bunny living outside my window, keeping me company. I seem to have a new rabbit living in the front yard with the arrival of every new spring and summer season. So far this particular bunny has been rather quiet, preferring only to be seen in the early morning hours or just before sunset.

Fortunately, the bunny apparently found a safe hiding place when this coyote showed up in hopes of a tasty breakfast.

Even though he probably would have had little interest in me, I was still glad there was a wall to safely separate us. :)

One morning I had the privilege of seeing this beautiful deer strolling the yard. She took my breath away.

I've had my share of the usual window nature sightings as well: a variety of squirrels, gophers, lizards, birds, birds and more birds. Here are a few of said creatures:

I'm told this is an antelope squirrel (not a chipmunk),
but I'm not convinced

Gecko (not to be confused with Geico)

Finch and Cardinal Hang Out

A pretty goldfinch

Hummingbird

Cooper's Hawk

I mentioned in a previous post that, on "good days," my parents sometimes wheel me to their bedroom where I get to have a much nicer view of the mountains, sky and landscape. While those jail breaks have been less frequent than I would prefer, I am grateful for every one of them. It is on those days that I get to see views like this:

The view is even more beautiful in spring and summer when the trees are all in bloom. This photo was taken in winter, and that white stuff you see on top of the mountains (look real close) is snow!

Earlier this spring, my brother, sister-in-law, niece and nephew came to visit, and I got to see them for the first time in two years. Visits are always hard on me, and it broke my heart that I could only spend a few short minutes with them each morning. However, I was so grateful even for that time, as it was such a joy to see their smiling faces every day.

My niece and nephew had grown so much, and I absolutely adore them both. I wanted so much to play with them, to go on adventures with them, to interact and talk and catch up and just get to really know them. I wanted to tell them what a fantastic and super cool aunt I would be if my circumstances were just a little bit different. But, my circumstances ar what they are, and we all made the best of it. I hope I was somehow able to convey how much they mean to me through my silent expressions of joy upon seeing them, and my little whispers and words of affection.

Here's a small collage of photos showing some of their various adventures while they were visiting (all photos courtesy of my brother):

While I was unable to participate, I loved hearing the stories and knowing they were having a good time.

In the last few months, I also became a godmother twice-over. I am already the proud godmother to my nephew, and I am now also godmother to the youngest daughter of my best friend from college. I wasn't able to go to the ceremony, of course, but I was there in spirit, and am privileged and honored to hold the title to such a sweet little baby girl.

Jim and I are still doing very well in terms of our relationship (not so much in terms of our health). I am in continued awe and gratitude to be blessed with such an amazing man as my fiance. I only wish we were healthier, and we could see each other more often.

This past spring made 8 years since we've been writing each other every day. For our anniversary, Jim printed out all our email correspondences from the first month we began writing (back in 2003), and placed them all in a beautiful album for me. It was such a sweet and thoughtful gift, and one I will always cherish.

Speaking of my health, things have been very difficult. Sometimes I prefer not to go into the details because I simply don't want to relive the physical pain of it all over again. This illness is so brutal and so utterly pervasive; there is not a single second of any day that it doesn't dominate or alter in some way. That's why these little moments of escape are so lovely, and so necessary. And that's why I am so grateful every day for their brief but welcomed grace.

The Remaining Sunlight

When I first started this blog, I wanted to find a way to tell my story and speak its harsh reality while still being sure to maintain a sense of hope and optimism. My primary focus, of course, was to raise awareness about how devastating and all-consuming ME/CFS can be, and to show that, though the name may be trivial, the disease most certainly is not.

However, I also wanted to emphasize that we are in no way defined by our illness. ME/CFS may ruthlessly prevent us from fulfilling many of our dreams, but it has clearly not taken away the dreams themselves. People with ME/CFS were once healthy, often extremely active individuals. We were going about our lives like everyone else when we just happened to fall ill -- typically quite suddenly from a viral infection, and certainly through no fault of our own. We desperately want to get well in order to have the privilege of once again living our lives to the fullest.

With these ideas as part of my focus, sometimes (particularly when I'm experiencing an acute crash) I wonder if I may give the impression I handle my illness and my circumstances with greater ease than I actually do.

ME/CFS is brutal. It defies description because it is so far beyond any normal experience of exhaustion or sickness. When faced with such a severe level of illness on a regular basis -- day after day, year after year -- one has no choice but to find a means through which to cope. Over time, I've learned to do this by focusing on the positive, maintaining my sense of humor, and looking within to seek out the small moments of grace. I resolved early on in this battle that I would not let ME/CFS destroy my spirit in the same way it had destroyed my body. And on most days, I do this quite well. My spirits remain strong, determined and hopeful.

However, as anyone would, I have a harder time during a setback. As I have previously stated, it can be quite a challenge to remain consistently optimistic when you feel so sick you can barely move. Not impossible, of course, but difficult.

I recently suffered another long-standing crash. This is my life in the last 14 years, and the nature of this unrelenting disease. Just when I feel like things are improving, I make one wrong move or reach too far, and I am back down again. It's like continuously taking a step forward and then falling a hundred steps back.

While my resolve holds firm, I have to be honest in saying this kind of life can test the extremes of one's endurance at times: the constant battle, the repeated setbacks despite your best intentions, the lack of answers, lack of treatment, the misunderstandings, and the countless downfalls from one wrong movement or one tiny misstep.

I once equated the experience of ME/CFS to what I imagine it would feel like, at least to some degree, to be in an abusive relationship.  However, I would presume that a child who gets brutally beaten every time he/she reaches for a cookie eventually learns to stop reaching for cookies, or to seek out other means so as to not get caught. But what if your abuser (ME/CFS) never, for even one second, leaves your side? And what if your cookie is washing your hair? What if you get beaten over and over again just for trying to get out of bed? For getting dressed? For speaking?

When punished so severely and repeatedly for such minor activity, I can't help but get discouraged. As my fellow ME/CFS blogging friend, Alexis, described in one of her recent posts, I too tend to go through stages. The first is anger and denial. After fourteen years and what has to be literally hundreds of setbacks, I am still shocked when it happens. Somehow, I continuously convince myself that each crash will be the last, and that things can only get better. And then I reach too far beyond that invisible line once more, and my health plummets yet again.

At its very worst, I have been barely able to move. I have had more days and nights that I care to recall where every breath felt agonizing; where I could feel the energy it takes just to swallow. The experience can be beyond brutal. "No," I think to myself when it first hits, "this is not happening to me again. I cannot face this yet again."

After awhile, I have no choice but to move into acceptance, and attempt to find new adjustments and changes to help lessen the severity and duration of the setback as best I can. Once the agony lifts even slightly, I am so relieved to be remotely functional again, to not be in almost intolerable physical distress all hours of the day, that I am able to find some grace in that, and thus return to a place of gratitude once more.

Things are thankfully a little better than when this crash first began, though I am still in the process of trying to bounce back. In light of the fluctuations in my health, as well as some possible upcoming activity that will no doubt require all my energy, I've decided to take a step back from blogging for a little while and try my best at taking my own advice and learning to be more patient with what is.

Blogging has been an amazing experience these last (almost two!) years, and I am so grateful for the improved cognition that has allowed me to participate in a bit more online activity. I feel especially blessed by all the amazing people I have met as a result, and the wonderful friendships I have been able to form. The many letters and comments I have received over the years have touched me deeply, and they inspire me to keep writing. However, at this time, I feel I need to focus more fully on my health. I will still be around here and there, just perhaps not as frequently for awhile.

For now, I will leave you with a few photos of some of my most recent bird visitors (click on the photos to enlarge them). No matter how bad things get for me in my small world, I am always so grateful for the song that exists in theirs. They remind me to keep singing even if my song must currently be silent, and to stay focused on what sunlight still remains to me.

Cooper's Hawk
(he was much bigger than he appears!)

Cooper's Hawk

Road Runner (beep beep)

Finch Singing

Finches Munching

Another Finch Munching

Mourning Dove and Goldfinches

House Finch Flying Above Goldfinches

Hummingbird

Desert Cardinal

Gilded Flicker Woodpecker

"Hey, isn't it my turn yet?"

Two Finches Kissing

Finch at sunrise

Birds sing after a storm; why shouldn't people feel as free

to delight in whatever sunlight remains to them?

--Rose Kennedy

Here's hoping there will soon be more sunlight for us all.