Feeds:
Posts
Comments

Posts Tagged ‘myalgic encephalomyelitis’

Being where I am.

 
Four simple words, yet I am coming to understand they are vital and far more complex than I can yet fully grasp.

 
Being where I am.

 
Being attentive to this moment, fully.   Not dividing my attention when someone is speaking to me. Instead, listening in the deepest sense; reigning in wandering thoughts, irritations. Stopping what I am doing to focus. God created that person – more than enough reason to stop, to respect, to remember.

 
Being where I am.

 
Looking out my window from my bed what earthly thing should I yearn for? I am warm, I am safe, and other lives are other lives, not mine. This moment is given to me; it can be mindless or mindful. It can be drifting in much-needed rest and gratitude that I can have it. It can be an offering. It can be a simple enjoyment of a puzzle, a book, a view. Those are offerings, too, if I am mindful – if I am truly where I am.

 
The indescribable totality of this disease is often harder than I think I can stand and I can only pray “Either cure me or help me cope!” And then I do cope, but not by my own strength.

 
Being where I am.

 

A key to contentment, to acceptance, to
Peace.

Read Full Post »

I suspect that I am not the only one with health issues who struggles with handling practical things. In this case, I refer to so-called routine dental visits. I say “so-called” because they are anything but routine for me. In fact, the only part I can take for granted (allocate to “routine”) is that I am afterward going to be pounded in every way by this disease.

Make an appointment six months ahead of time? I can’t predict six minutes in advance let alone six months!

About a year ago, feeling bad about taking advantage of the good nature of the entire staff of my dental office by being forced to repeatedly change appointments (sorry, but no way can I go if the myoclonus is breaking through and going with a migraine is beyond masochistic) I presented the problem to my dentist and the hygenists. I know – why didn’t I think of that sooner?

They weren’t at all upset at the way I was doing things, but when I said it didn’t seem fair to anyone they offered a solution we all felt better about. I don’t make a routine appointment. They offered to put me on a “call if there is a cancellation and see if she wants it” list. So, beginning the month I am due in, if there is a cancellation for an afternoon slot they call and ask if I can make it that day. If I am in good enough shape, I go. If not, I pass and they call someone else. It’s as close to spontaneity as can be managed for me, and doesn’t waste their time if I’m not well enough to go that day.

It’s a simple idea that I don’t remember sharing here. I hope it’s helpful.

Peace.

Read Full Post »

It was marvelous!

It is winter here, more often gray than not. Sometimes everything has seemed gray, neither this color nor that.  Just – gray.  I have been very ill, sliding steadily downward for some months culminating finally in leaving my bed for only very short periods.  In times like those, I am easily haunted by “what if” whispers.  I pray for the graces God knows I need, I distract myself with books, puzzles and TV if the migraine monster isn’t visiting. Since he’s been visiting far more often than not (and bringing his other ME/CFS buddies with him), well, “gray” is the nicest description I can manage.

But today – ahh today!  Marvelous!

Today in this winter place, gray did not dominate.  The sun shone in a brilliantly blue sky and lured me as memories surfaced of how I’ve coped in the past.  Whispers, promises…”Come and see, you know I show you treasures, come and see…”

Yes, I know, I sound loony but I’ve always been a bit of an oddball – not such a bad trait, I’ve come to think.

Unable to resist the lure and remembering that forcing myself outside for even a few minutes has been one of my survival tools during the long decades of this disease, I decided to go out.  Wanting all the good things that sunlight can bring, I left off sunscreen and sunglasses – another of my survival tools to let my skin contribute to the making of vitamin D and my eyes be the conduits of chemical balancing.  It doesn’t take long, only a few minutes.

I bundled up and leaning on my cane told my husband with a smile “If I don’t come back, check behind the hill.”  I knew that a walk down the road was not within my reach, but with the benches set around the yard, I should be able to make the circuit.  And out the door I went.

WOW it is COLD out here!  But oh, the sun is shining, I hear birds!

I began to walk toward the hill, intending to go around the back of it and taking my usual route.  I stopped.  “I always go this way, counterclockwise” I thought and abruptly changed my direction to the opposite.

I walk to the property line and pause, lifting my face to the sun.  Looking down again, I see the section of split rail fence my husband put here years ago and realize there is lichen growing on it.  Here is life on dead wood. Whole colonies are thriving; the wood long dead yet here is new life.  I find myself smiling and whispering, “New life on dead wood” thinking I’d found today’s treasure. As the pitchmen say, though, “But wait!  There’s more!”

I came to the side of the pond, smiling at the churned up tracks of all the animals that come to drink here, smiling too at the sight of a junco sneaking a sip under the brush at the base.  I think how nice it is for the animals that a recent thaw caused the ice to recede a few inches and give them open water at the edges.  It is too cold to sit and watch as I would normally do, so I move on.

As I reach the side of the hill, I find my gaze drawn upward and though I know I can’t follow that path today, I am still happy in the cold breeze and the brilliant sun.  How could I have forgotten how much this effort always lifts my spirit?

I stop in my tracks. 

Did I just see what I think I did?

Ohh!  There it is again!  What a jewel in the sun and right in front of me!  As brilliant as the bluest sky is the male Eastern Bluebird not twelve feet away.  He dips to the ground then up to a branch, glowing in the winter sun.  Another!  I know they are shy so I don’t move.  After a moment of watching, they seem to decide I am not a threat and resume their typical dip-and-up feeding pattern.  I watch until the cold bites so hard I must move, but grinning now so widely I chuckle inside to think how I must look.

Suddenly I realize I am surrounded out there behind the hill by woodpeckers, juncos, chickadees, and too many more to name.  Such life!  Such abundance!  My God does this!  I am transported with a joy I have not felt in a long time.  “Thank you – thank you!” I whisper both inside myself and out.

I make my way back toward the house, excited by the thought of telling my husband what I’ve seen.  The neighbor’s dog catches sight of me and begins to bark.  I know him to be a big baby who probably doesn’t recognize the figure in the bulky winter coat as someone he knows.  So I call to him in silly talk and begin to walk toward that side of the property.  I have the neighbor’s permission to visit the dog anytime I like and I decide that maybe I can manage it.

Just then my neighbor comes outside to see why the dog is barking, seeing each other we call out and meet by the dog for a visit.  Silly, giant dog, delighted that I’ll toss his slimy Frisbee for him, makes us both laugh; so tough – such an act.  More delight for me.

Suddenly my strength leaves me and I must head inside quickly – but I am still smiling.  How could I have forgotten how much these little things help?  The migraine monster is coming back as I type this but even he can’t touch my joy today.

Life growing on dead wood,

Bluebirds upstaging the sky,

Silly dogs, friendly neighbors,

My God does marvelous things!

Peace.

Read Full Post »

hiddenlives:

One need not have a monastic vocation or be drawn to the Benedictine to understand the struggle.  We all struggle in many ways.

As I struggle with this disease and the effects of it on my life, as I desire so deeply to be ever more in love with God yet fall down daily in my seeking, I find myself praying almost constantly both with words and without, “I can’t do this without You.”
This post by Fr. T. Becket A. Franks, O.S.B which shares a poem by Aurelius Prudentius Clemens, an early Iberian Christian poet, speaks deeply to me. I hope it speaks to the readers here as well.

Peace.

Originally posted on Becketmonk:

We too are those disciples in the boat sent by Jesus to the other side of the sea.  In the words of the early Church writer, Origen, “Faith is learned by risk.”  During the fourth watch of our nights, how will we manage the winds and waves of our lives?  Will we hold true to our faith, to our monastic vocation?

Reflecting on these questions, Aurelius Prudentius Clemens, an early Iberian Christian poet, writes this:

Thus I by my loquacious tongue

From the heaven of silence am led

Into perils unknown and dark.

Not as Peter, disciple true ,

Confident in his virtue and faith,

I am one who unnumbered sins

Have shipwrecked on the rolling seas….

How easily can I be shipwrecked,

One untaught in seafaring arts,

Unless you, Almighty Christ,

Stretch forth your hand with help divine.

View original

Read Full Post »

The things that trigger the need to write always surprise me.  This time it was a simple question asked by my friend and oblate mentor that set me to pondering for days.  “How are you doing?”  I know, I’ve written before about answering the “How are you?” question but this was different for me; I’m hoping that by writing today I’ll figure out why and maybe even be able to answer it.

First, a little background.  Since I am mostly homebound, I thought at first that it might be impossible for me to be accepted as a Benedictine Oblate candidate.  But God does indeed use all things and inspired the Oblate Director of the monastery with which I am now affiliated to offer me the opportunity to study at home.  Part of his decision included asking a particular oblate of the monastery to act as my mentor. Their actions speak strong lessons regarding what it means to invite Christ more deeply into one’s life via the Rule of St. Benedict.  She and I have met only twice in person but, I am honored and happy to say, have become friends as well as fellow travelers on the Benedictine path.

So, why did the caring inquiry of a friend who even remarked that she didn’t want to intrude into my privacy (something she did not in any way do!) render me mute for so long?

“How are you doing?”  “Better than most and not as good as some” would be the glib answer – yet it’s also true.  Barring the desires of some in power to dismantle my husband’s pension plan, our lifestyle is fairly secure which is something most of the world would give much to be able to say.  As hard as this disease is, there are far harder, so I am once again fortunate.  We have so far been able to afford our medicines; again, almost embarrassingly fortunate.  Our family is safe and all one has to do is look at a headline to know how blessed we are in that!  The wealth I enjoy in these things and others is indescribable, yet I felt completely unable to answer that question.

“How are you doing?”  Well, a medicine I had hope for doesn’t seem to agree with me, adding another to a long list, so I’m still struggling with acceptance.

“How are you doing?”  I’m feeling a bit lost, very sick, and trying to cover it up so others won’t leave me out of things more than I already am, so I am still struggling with acceptance.

“How are you doing?”  It hurts terribly when  others know more about my children and grandchildren than I do because of the isolation this disease imposes, so I am still struggling with acceptance.

“How are you doing?”  I feel overwhelmed by the least things that others do with such astonishing ease, so I am still struggling with acceptance.

“How are you doing?”  I get scared about the future even as I profess my trust in God, so I am still struggling with acceptance.

“How are you doing?”  I feel I’m handling it one moment and crash the next into a bewildered mess of sickness and pain, so I am still struggling  with acceptance.

“How are you doing?”  I sometimes want to scream when someone tells me about ordinary things they do and which I know I will never do, so I am still struggling with acceptance.

“How are you doing?”  I fight an unbecoming resentment when there are breakthroughs for other diseases and none for this one, so I am still struggling with acceptance.

“How are you doing?”  I am both irritated with myself  and deeply ashamed for the whole list above and for all the things I haven’t listed, knowing how absolutely blessed I am in all that truly matters, so I am still struggling with – myself.

Well, it seems there we have it , the voice unmuted, the answer I needed for myself.   “How are you doing?”  I’m struggling with acceptance.  I’m struggling.  But in those words “I’m struggling” there is life, isn’t there?   I’m a very poor example of a Benedictine of any stripe, but I’m struggling.  Time to email my friend.  

 

Peace.

 

 

 

Read Full Post »

You might think that as I approach yet another anniversary with this disease and that since I’m no spring chicken either (I’d have to make the Guinness Book of Records to still call myself “middle-aged” though I’m sticking with the label anyway) I’d be smarter.

Yes, you might think that – but you’d be wrong.

I’ve written here and spoken many times to others about making the tough choices to live well with chronic illness. Hang on a sec, what’s that in the mirror? Whew, I thought my forehead had “doofus” written on it! I’m pretty sure that I deserve the label even if it’s not showing up in the mirror at the moment.

It took until very early this morning to make me see more clearly that I cannot live well with this disease, be true to my beliefs and still drive myself crazy when what I usually view as a choice or decision comes into play. Okay, I know, I’m rambling again – here we go…

The day before yesterday was pretty rough in terms of strength. I had none. So yesterday when I woke feeling even worse, I wasn’t too surprised to end up in the stinky embrace of the Migraine Monster. September was a relatively easy month in terms of migraines so I tried hard to just go with it and not think too much about the loss of what little up-time I get in a day.

I do have at least some appreciation for how fortunate I am even in the midst of the monster attacks.  I count my many blessings backwards and forwards and they are breathtaking in their expanse.  You might think that would make me humble and again – you’d be wrong.

In the grip of the stinky Migraine Monster’s embrace, I realized that it was Tuesday and that meant I’d probably have to miss the Scripture study group at church that I’ve been going to.  It meets once a week in the evening for two months at a time and then is off for two months.  Take note, please, of that word in italics “probably.”

At the best of times the physical toll of going to that group is almost more than I can bear.  Yet there I was, wondering just where to place the drop cloth to catch the mess when my head would finally explode through my eyeball (gross, eh?) and I’m thinking I would PROBABLY  have to miss it?  Granted, I have the blessing of triptans to abort the attacks but they work only about 50% of the time if I am very careful.  Going out to a meeting that involves sitting  upright in a sadistically designed metal folding chair for an hour and a half is not being very careful – not ever  – let alone on a migraine day!   I know that.  I knew that.  Yet I still felt I had to make a choice.  Until the very moment it would have been time to leave I still thought “maybe I should go – it’s not that bad right now.”

Credit my husband with common sense, not me.  I don’t want to think about how many times I asked his opinion before I let him go without me.

Credit God and knowing I’d just posted here that I wanted to be accountable for better integrating my spiritual life with this disease for doing what I could do; praying Evening Prayer (aka Vespers) instead.

And then the kidney stones began to move.

Yep, this disease will truly mess with every single system.  Neurological, endocrine, immune and whatever else I can’t think of at the moment.  Lately, it’s been messing with them all at one time but those stones really topped it off.

I was going to go that meeting despite a migraine attack.  Unbeknownst to me, the chills I’d developed in the later hours were the foreshadowing of kidney stones, but no matter what the cause, I was going to go to that meeting because I had a choice!  I had to make a decision!

At 3:00am as the kidney stones became only occasional zings, I finally understood the only decision I really have in life with this disease and I committed to it long ago.  I understood it thanks to the wisdom of a priest who recently submitted to being pummeled by my Niagara Falls of words and anguish about “am I trying hard enough.”   I heard him at the time but it took new life in the wee hours after a really hard day.

“Love your neighbor as you love yourself.”

It’s a balance – again with the balance!

I don’t actually have choices and decisions in these matters beyond that.   All these years I’ve sought  permission to see to what I need. Yet all that time I not only had permission, I was actually commanded to love myself, too.  I would not do to a neighbor what I do to myself.  Where is the balance in that?

There was no decision to be made yesterday, no choice.   Only that sweet voice of invitation saying I am loved and telling me to extend that love to everyone else;  including myself.  I have been making it all so complicated and so muddled.

It is all so simple.

 

Peace.

 

Read Full Post »

Although I seldom use this blog to post resources, there being sites that do that so much more thoroughly than I could, I thought I should offer these especially as the format is video and some of us have difficulty with too much text on a screen.

I’m adding them to the permanent links on the right of this page.  If anyone finds that links I’ve put in this blog cease to work or are somehow inappropriate, please leave me a message so I can review the link in question. 

I know that there is a great deal of controversy, upset, even fury in the patient (what a word!) community about this or that doctor, this or that organization but this blog will not be used to further that; I merely offer a resource.  I, too, have experienced the fear, the frustration, the upset, the longing for treatment that would give me a normal life.  I have experienced humiliation at the hands of those sworn to be compassionate healers.  I, too, detest the name which trivializes that with which I must live.  I get it.  I just won’t argue about it.

For the newly diagnosed who may be reading this, please know that odds are with you – you are very likely to improve as time goes forward!   Never let me, anyone else, or any resource overcome hope!  Life can be very, very sweet even when it takes a sharp turn into uncharted territory.

I am not affiliated with any group regarding this disease, nor do I offer advice about what will or won’t work for you.   I wish I had the answers.   My personal approach is to stay informed but keep my focus on pursuing my life as it is now.  These links are offered in that spirit.

Here are the new links:

http://www.youtube.com/user/SolveCFS

http://www.youtube.com/watch?v=Riybtt6SChU&list=FLzrFQHNiCc_6AMpw_GpWZOA&index=5&feature=plpp_video

Peace.

Read Full Post »

Older Posts »

Follow

Get every new post delivered to your Inbox.

Join 45 other followers