Posts Tagged ‘chronic illness survival skills’

Do you think you don’t matter because you can’t do “big” things anymore? Click here to read a short entry on the blog of a Benedictine monk..


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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.


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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!


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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.




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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





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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.



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



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 –


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