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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.

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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.

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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.

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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.

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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.

 

 

 

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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.

 

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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.

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Lately I’ve been getting slammed more than usual by this disease.  I’m fairly sure there’s no pain in my eyelashes ;) but the level of pain, exhaustion, immune system uproar, migraine attacks and other neurological nasties have left me breathless – oh, wait, that’s the asthma kicking in.

 

I’d say I don’t mean to complain, but I suppose that’s not entirely true, I’m SICK of this!

 

Whew, that felt good and yes, I see the pun :)

 

I’ve smiled my way through several important events that brought me great joy even as I knew I was getting much worse.  Balance, it always comes back to that.  Now it is time to begin to tip the scale back to where I do best – living each moment in quiet spontaneity.   Healthy or not, it only makes sense; we are not promised a next moment and, while reflection on the past can be fruitful, moments in the past are gone – we have only this moment.

 

Okay, I’ll admit, that even at the least demanding of times, it’s not completely possible to be without thought of the next moment, the chore that can’t wait any longer, the appointment that must be made and kept, the commitment to my spirituality that strengthens me in every way, but the more I can build that quiet spontaneity into my life, the better I do.  Yes, it takes a conscious effort to choose – to build – that peaceful place, to recognize an opportunity; even the busiest lives have them.

 

Yesterday was one of those precious spontaneous days. 

 

My husband asked me what I was going to do with my day.  I smiled and recited one of our family jokes, “I don’t make plans that far in advance.”  I asked him what he was going to do and he said he might cut the grass.  Now, the last time he cut the grass I’d compromised but this time I knew I desperately needed the quiet and that lawnmower makes me feel driven as I try to escape the noise and the allergens.  We have a small parcel of land here, so cutting the grass takes several hours on a riding mower.

 

So, I did the unthinkable; I asked for what I desperately needed.

 

Luckily, my always-has-to-be-busy husband is also very good to me so he agreed to find something else to do and joked about someone calling the Grass Police.  (We live in a semi-rural area, I’m not sure anyone would do anything about it if we let the whole place go wild.)  So I looked forward to my quiet and a day with absolutely no obligation other than the times of prayer in which I find peace and solace. (See the Divine Office link to the right of this page if curious.)

 

After a morning spent “going slow” as I think of it, I was finally dressed and ready to spend some time on the screened-in porch.  I set my favorite pillow on the lounge chair and stretched out; I read for a time, I listened to the birds and thought about what I’d read.   Just being able to do that – retain what I’d read long enough to think about it – was huge!

 

When 3pm came, I went upstairs to pray Midafternoon Prayer as is my custom, and came back to the lounge chair.  Then the weeds began to call.

 

They did.  Honest!

 

Several years ago, my husband built a two-tiered flowerbed just outside the screened porch.  Don’t ever let anyone tell you that you can contain the growth of mint if you plant it inside a pot in your garden!  I think I’ll be pulling it out for the rest of my life and much as I like mint, well, email me if you ever need some ;) 

 

So, the mint and friends were calling and I, in that moment, felt I could clear a little section.  With my cane for balance and my trusty trowel, out I went.  After a couple of minutes, the lessons began to form.

 

I set my sights on clearing every weed from the midst of an Autumn Joy sedum that has gotten quite full and lovely.  Just that spot, I thought, let me get that one spot completely cleared.  I began with a few inches leading up to the sedum when the first lesson came.

 

My husband and I had done this already earlier this spring.

 

What we had not done was put something in the place of the weeds.  Pull something unwanted out, the careful gardener puts in something that is wanted – lest the weeds grow back.  Clear a space within myself, something better needs to take its place lest I end up back where I began or worse, grow an even bigger crop of weeds.

 

I moved forward, still determined to perfect that one little area.   I began to work on my lovely plant, carefully separating the sedum stalks to follow the weed to the roots when the second lesson came.

 

No matter how carefully I pull out the roots, I can never get every last little strand; the weed will grow back eventually without vigilance.  What progress I make must be carefully watched and nurtured.

 

I moved to the other side of the plant, having cleared the front and looked back.  Wait just a minute!  I just cleared that!  I’d swear there wasn’t a single weed left in the front half when I moved to the back!  But there they were, waving merrily in the wind, weeds I hadn’t seen though I’d thought I looked so carefully.  I’d felt pretty proud of myself for my thoroughness and yet I completely overlooked these taunting flags!  Therein lay the third lesson of the weeds. 

 

The weeds in me require my vigilance, my effort, my patience, and my perseverance but I will never clear my garden of weeds.  There is only one Gardener who is able to see and completely root out each weed and it isn’t me! 

 

Peace.

 

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A great saint said God could be found amidst the pots and pans.  I thought I understood what she meant until I realized I am the pot.

 

The dinner fails.

The pot sits too long alone.

Unscrubbed, scorched,

Ruined.

 

Hands take it up,

Fill it with warming water,

Soothing soap,

Set it aside to soak.

 

Time passes.

 

The pot poured out,

Residue drains,

Hands begin to scrub,

Harsh steel wool.

 

Time passes.

 

Water rinses,

Harsh splinters slide away.

Spots fewer but

Stubborn, stuck.

 

Time passes.

 

Hands determined,

Pot can be cleansed,

Useful again,

No matter what.

 

Time passes.

 

Soothing soak,

Bliss of being still,

Soap and water working,

Pot unaware.

 

Time passes.

 

Taken up again,

New water, same soap,

Same hands.

Steel wool only on spots.

 

Time passes.

 

Pot has shiny places now.

Rinse and rinse again.

Spots grow smaller,

These most stubborn.

 

Time passes.

 

Hands keep working,

Scrub, rinse, soak.

Pot will be useable,

Scrubber knows.

 

Time passes.

 

Steel wool put aside,

Shine never marred.

Some spots remain,

Accepted for now.

 

Time is future.

 

Rinsed, dried, back with others.

Dinners will be new,

Pot used again,

Hands ready to cleanse.

 

 

“Let us fall into the hands of the Lord

and not into the hands of men,

For equal to his majesty

is the mercy that he shows.”

Sirach 2:18 NAB

Peace.

 

 

 

 

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I have thought (again) for some time that I would not be moved to write anymore.

 

It has been a time of being very quiet inside in terms of words.  Yet, it has also been a time of invitation, learning and, though it might seem surprising in the midst of that, turmoil.

 

For now, for today at least, I’d like to share just one thing – a thing that came to me yesterday.  It’s a thing I’ve written about in one way or another before, and so one might think I would not have found it a compelling experience, but it seems I do not truly learn the lessons given to me and must be reminded.  I make no claim to being the brightest bulb in the fixture!

 

So for those of you who do me the honor of reading my words, try to keep the “Well, DUH!” reactions to a low roar – I’m recovering from two migraine monster attacks in one day and I really don’t want to wake that guy up again, he’s lousy company ;-)

 

Yesterday, I was absolutely determined to work on my pottery.  I get to feeling sorry for myself for, as I think of it, “losing” so many days.  Yes, I know, another lesson there, but one to speak of another day.

 

So, even though I knew a migraine was coming on, I took the pill that sometimes aborts it and began to work.  My goal was to do just a couple of small pieces, knowing I would be even more foolish if I tried to move more than a few ounces of clay at a time.  Between the migraine, the medicine, and my arrogance, my rhythm of wheel speed and lifting of clay walls was off and the piece began to become misshapen.

 

Rhythm – speed – lift – control.

 

Suddenly the lesson was there, refusing to be ignored.  When things get out of control (and we all know that’s going to happen) SLOW DOWN!

 

It’s not only okay, it’s essential.

 

Clay and life – they only form as they should when I cease to fight for control and lose myself to the rhythms and the silence that is deeper than mere absence of sound.

 

The lessons of the wheel are lessons of my life.

http://mycfslife.wordpress.com/2010/11/01/in-the-silence-of-the-wheel/

 

Peace.

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Once again time and circumstance have slowly come together and insisted on words.  I know, I’ve surely spoken and written enough words for several lifetimes already, but here I go again.

 

It seems to me that all living things adapt constantly or don’t survive.  Living things must adapt to weather, to availability of food, to good things, to bad things, to innumerable things.

 

We who are chronically ill are certainly not unusual in that respect.  What may be unusual about us is that we agonize, beat ourselves up, and often tend to believe that we are somehow guilty, have some sort of character flaw, or have given up if we adapt to the changes our health brings before us.

 

Okay, I’ll stop using the royal “we” and refer to myself – it’s me, I admit it – I’m guilty of all of the above and then some; every single day.  But, after 21+ years of this disease, I’ve been confronted in a new way with a basic truth.

 

How well, and in what ways, I adapt affects me, people close to me and even total strangers.

 

Now, as I said, I’ve been living with this thing for 21+ years.  I’ve certainly adapted in many ways.  Some are obvious; at the best of times I use a shower stool, a cane, and if I need to go to a big place, a wheelchair.  None of those adaptations were easy when I first made them.  None of them are easy today – especially that wheelchair.

 

I’ve adapted in ways that are not obvious, too.  Not all of them are good.

 

Because I’ve had great difficulty standing unsupported for more than a very short time since the onset of this disease, I learned of necessity to adapt – hence the shower stool, cane and wheelchair.  Sometimes I still went out to small places on my own, our little library or drug store, but when confronted with a line (queue), I became, then and now, quickly desperate to sit and have left the merchandise behind rather than sit on the floor drawing attention or risk meeting the tiles in an even more attention-getting way.  Leaning hard on my cane, angled so I could rest back against it, was helpful only some of the time and never without a dramatic reduction in stamina.  I gave myself credit for strength of will, though, oh boy – am I tough! And wasn’t that the most important thing – toughing it out?  Applause, please, for the superwoman among us!

 

In the false pride of my so-called toughness, in the self-flagellation that did not come from truth, balance or any good thing, I did everyone a disservice, even strangers.  I know this because of what happened when I began to see what I must do.

 

About a month ago, I was forced to face facts.  I can’t do it.  I can’t go even to a small place and not have a place to sit down.  It’s not a case of wanting to sit – it’s need, and need it right now! I can no longer get away with leaning over a shopping cart, with self-talk to hold on for just another minute.   I can walk – some of the time – what I can’t do is predict or plan. My ability to stand can change in the blink of an eye.  Yet I want and need to walk when I can and I want freedom to do what I can on my own.  I am, after all, tough!  I am tough enough to accept reality…tough enough to adapt.

 

And so I obtained what will help me when the cane is not enough, the wheelchair is too much and what has, in turn, further opened my eyes, thanks to a stranger’s reaction.

 

More important than the “what” is the opening of my eyes.  A stranger saw me using what I am calling The Gizmo.  She gently asked if I get tired.  I got nervous that she was going to ask more but when I said yes, she began to tell me how much she wishes her friend would use one, how much easier life would be for her friend and for all those who take care of her.  She wasn’t asking in order to pry, she needed to talk about her friend – and I needed to hear!

 

Looking at The Gizmo rather longingly, she went on to say that her friend simply refuses to use “one of those.”  Anyone watching this woman would have been able to see how she ached for her friend – for the loss of freedom her friend is enduring and for those who take on the extra duties she cannot perform because “she won’t use one of those.”  Perhaps she’ll talk to her friend about it again, having heard me say that it has already brought back freedom I thought was gone forever.  Perhaps my public use of it has helped someone other than myself and my husband.  What a great gift to me, that thought!

 

We affect others, all of us, whether we are aware of it or not – whether it is seeing or simply allowing ourselves to be seen – adapting, living, continuing.  We aren’t just adapting for ourselves!

 

When I acquired The Gizmo, I was unhappy at its original name, bright color, and the prominent sticker that could not be removed and proclaimed me “invalid.”  I am neither invalid nor in-valid.  I renamed it and covered that sticker with some that reflect things I enjoy.  When I took the deep breath of courage and used it the world did not stop, staring and pointing, and I was able to enjoy a small outing as I have not done in many years.

 

And on top of it all, thanks to the blessing of a stranger’s wisdom, I have seen another way to be useful.

 

And so I present to you The Gizmo, personal helper, instrument of learning, and one of the colors of adapting.

Gaining freedom - gaining wisdom

 

Peace.

 

 

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Recently, I read something which moved me so deeply that I contacted the author and asked permission to post it here.  Receiving a resounding “Yes!… for His glory!” I post the following – may it inspire all who struggle.

Peace.

 

From her book, Wow God by Sister Francis Clare, S.S.N.D. :

 

I will open for you every door I want

and close those I do not want . . .

 

When you are beset by doubts, know that

I am still here. These plans are My plans,

not yours. You’ve asked to be used by

Me and I’ve told you that I will use you.

The plan is Mine to work out. I’ve not

given the plan to you.

 

I’m only asking you to be My tool. The

hammer does not know what the

carpenter is doing. It only follows the

hand of the carpenter. I will pick you up

and I will lay you down. When I need

you I will use you. I know what I am

doing. I know what I am building. All I

ask is that you be on hand when I need

you.

 

Because I have called you a hammer, do

not think that I despise you. A carpenter

loves his tools and the more he loves

them, the better he handles them and the

better work they will do for him.

 

I have many tools. They are arrayed

before Me and I pick the one I need. Be

content to lie still if I do not need you,

for I know where you are and I will pick

you up when I need you.

 

 

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I’ve had snippets of this post brewing in the back of my mind since last fall.  Did I ever admit to procrastination?

It wasn’t until today, after having taken part of the banister off the wall yesterday in an attempt to control a fall during a period of blacking out (POTS – a kind of orthostatic intolerance, and a partial branch bundle block along with other non-life-threatening electrical glitches) that I saw how to better (I hope) write on this topic.

I again caution:  If you are newly diagnosed or if you do not have symptoms mentioned here, please do not assume you’re going to end up like me!  There is every reason for anyone reading this to hope for improvement!

Now, preface over (I can just hear the sighs of relief), onto the topic.

My husband and I often share grins over the behavior of our cat; especially when he’s acting the mighty lion over something silly.  Sometimes, though, it’s not so silly.  He’s an indoor cat but has access to our back porch where, three times now, he has managed to kill a vole seeking shelter when the weather turns to winter.  He’s thrown himself at screens wanting to get at birds.  My husband and I turn to each other, seeing our fuzzy companion as the skilled predator he was designed to be, and say “We can’t blame him for being what he is.”

Living in this semi-rural area, we are able to keep chickens.  They provide us with fresh eggs, much amusement and will eat out of our hands.  They are also capable of killing a newcomer to their roost.  “We can’t blame them for being what they are.”

(The fish mentioned in the title aren’t forgotten, they’re just waiting their turn.)

So, how does this extend to me? I cannot blame myself for being human. I cannot blame myself for being ill.  In those respects, I cannot blame myself for being what I am.  I can, however, think hard and make efforts to do better; yesterday and the days which preceded it have proved to me that I have much work to do in meeting that responsibility.  It took a literal falling down on the job to make me see that I’d been figuratively falling down on the job for several weeks – just when I’d thought I was worthy of superhero status.

We’ve had a home repair job going on here for several weeks.  It became one of those odysseys that begin with one minor repair revealing a bigger problem revealing a larger one yet.  That little ten minute repair revealed a need to dismantle and rebuild our bathroom.   Remembering our youthful days of working side by side taking on any job that needed doing, knowing how well we work together and how expensive it would be to hire someone, my husband and I agreed that we could do the work ourselves.

Wait, don’t laugh quite yet, here’s the biggest “DUH!” moment of all - I shopped for materials with him while sitting in my wheelchair!  “Yes, Dear, I will help all I can” said the woman who couldn’t even stand up and walk through the store.  Reality check on aisle 9, please!

I know, I know, 21 years with this disease…one would think I’d have more sense!  It’s a good thing I never said I was perfect.  Well, I never said it out loud, anyway.

By my actions over the last two weeks, I was saying it, though.  Though my husband actually did need my help sometimes, I began to feel as though nothing could be done without me in the middle of it.  Somehow, with me there, the result would be better.  Since I couldn’t stand, I worked on the floor, since I couldn’t stay on my knees, I sat, when I couldn’t sit, I lay on my side to set tiles or mush in grout (“mush” being a technical grouting term.)  When an intricate piece of tile setting was called for, I completed it even though dizzy and nauseated. I resolved that I was done for good with what I could do on the project.  I knew I was so deeply down the well that I’d be lucky to see daylight again.

The next day, yesterday, I deliberately put on a nightgown after showering to add insurance that I’d do what I knew I must – rest and stay out of things.  I announced my intent.  I had my husband’s understanding.   But there was just one more thing that only I could make better – yep, you read it right, complete arrogance there and could not leave well-enough alone; a lesson I should have learned decades ago since I’ve wrestled with it all my life.  So, I decided I could do just that one thing and began to work on it, nightgown and all.  Then it happened, “I’m going out” I remember saying and stumbling with jigsaw vision out of the bathroom to the hall (another poor choice, the top of the stairs are right there.)  Having dealt with this kind of thing many times alone, I knew I had to control the fall and as my legs went, I grabbed the banister and managed to end up safely on the hall floor.

The details of the project are endless; in fact, as I type this my husband is painting over the patchwork we had to do and preparing to reinstall towel bars.  The difference today is I am resting and reflecting on being what I am; a woman in her 50’s who has been seriously ill for 21 years and a monastic soul who has a long way to go.  A woman who remembers what it was like to be physically strong, but who has lived long enough to know there are far more important things than the physical.  A woman who has been especially foolish lately and made herself so sick she can’t make any choices at all except to share her foolishness in the hope of helping others be wiser than she.

Oh, and that one little thing that only I could do?  I messed it up and my husband had even more work today to correct what I’d done in arrogant stubbornness.

Wait, I forgot the fish you say?  Well, perhaps you didn’t say but I have a little more typing in me before I go.   In the place where I spend most of my time, I have the blessing of an aquarium where five beautiful fantail goldfish reside.  I can see them now, contained in an unchanging place, sometimes coming together to touch, sometimes swimming or drifting alone.  Food appears and they seem joyful.  Food eaten, peacefulness returns.  They never seek to be somewhere or something they cannot be.  There is no discontent, no unrest.  In that quiet blue place there is only –

Peace.

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…the doctors who care, I mean.

My last post was done the day before I was to meet, for the first time, with a neurologist my primary care doctor recommended.  I met with her yesterday.   Up until the night before the appointment I’d have told anyone who asked that I felt surprisingly peaceful about the whole thing, even though I’d actively avoided further contact with a neurologist for about 7 or 8 years.  My primary care doctor was comfortable continuing the treatments for my neuro symptoms but every now and then would mention that he knew of a neurologist with whom he was sure I’d feel comfortable.

There came a time when I had to accept that my stubbornness was born of fear – which was born of the experiences of the past – and that continuing to let the fear make the decisions was both foolish and even made me guilty of prejudice, painting all neurologists with one brush.

I need to have a neurologist on my medical team and I needed to adjust my thinking – if the doc I saw turned out to be someone with whom I could not work, I have the power to find another doc.  It’s that simple.   If  the doc behaved as though my overall diagnosis is a religion – something to be believed in or not – then allowing that person to crush my world and stop me from seeking out the care I need would be foolish.  I could move on.  So, all this in mind, and having looked up the recommended neuro on the net and seeing good patient reviews, I felt hopeful and peaceful about my decision to go.

Until the night before when I began to get nervous about what might happen.  I imagined the visit being as it was in the past with the best of the neuros I’d seen who, even though he helped me with migraine and myoclonus, had an attitude of making fun of me so apparent that it shocked even my usually unruffleable husband.  The neuro scoffed even as we watched him make notes of abnormalities for his medical student to take down.  I stayed under that neuro’s care for some years as I did need what help he offered but I dreaded each contact.  To say more would be even less Benedictine than I’m already guilty of so I’ll let that story end here – I say that much only to contrast what a few years can change.

It’s the morning of the appointment with the “new” neurologist.  I’d planned carefully, washing my hair the day before so as not to use precious strength – we faced an hour’s drive to get there (to me, that’s like a trip to the moon.)  I couldn’t eat, I had to take two doses of Immodium to leave the house (get the idea that I was nervous?) and off we went with me clinging to positive thoughts and prayers with all my might.  In my purse was my little calendar of migraine attacks and the printout of the article in the Journal of Internal Medicine (link at right.)

My final prayer just before I was called in was the same one I prayed before I entered the courtroom for my Social Security hearing all those years ago, “It’s all in your hands, whatever you will” and with that, I let it go and in I went with my husband.

What a change from my last experience!  A young, vibrant doctor in ordinary clothes who never once made me feel I had to prove anything I said!  She asked questions, she listened to the answers without once making me feel rushed or cornered, even apologized for not making eye contact while she entered data into the computer, did a few of the usual neuro tests, and expressed views that meshed perfectly with my own attitudes!  I still can’t get over the difference!  See all those exclamation points?

At the end of this very productive visit, I asked her if she’d be willing to let me leave a copy of an article and began to get it from my purse.  Before I’d even gotten it out she said “Yes, please do, I’m always happy to read what a patient brings in.”  When I handed it to her she saw immediately that it was from the Journal of Internal Medicine and recent and she really perked up saying “Oh, this is from Internal Med; my husband is an internist and will be interested too, I haven’t caught up on my October journals yet.”

I think she’s actually going to read it and pass it on.

After I go back next week to have an EEG (they have the ability to do it right there and she’ll read it before I leave!) just to update since it’s been so long, I’ll see her every six months unless something changes.  She invited me to feel free to call in if I’m having a bad time of it, even if it’s that I need a steroid injection to break a migraine that lasts more than a day (I’ve toughed those out for a week at a time sometimes.)

I’ve got a neurologist on my team I feel good about – perhaps the passage of time and the efforts of advocacy really have brought some doctors to a higher state of acceptance about the reality of this disease.  Wow.

Deo gratias!

Peace.

 

 

 

 

 

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As I prepare to meet with a new (to me) neurologist tomorrow, I have found and am printing a copy of the full Journal of Internal Medicine article titled “Myalgic encephalomyelitis: International Consensus Criteria” and am listing the link below.

This is not an outline or summary, but rather the full article which appeared in the Journal.  I hope others will find it helpful.

As long as the link remains active, I will keep it listed to the side of this blog, too.  Please do let me know if you click on it and it doesn’t take you to the article.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf

Oh, and wish me luck – or better yet offer a prayer – that things go well tomorrow.

Peace.

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