Posts Tagged ‘explaining to others’

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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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.


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


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I came across this just now and think it’s a great way to help explain the exhaustion to others.





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Lately, I find myself thinking of the exhaustion from which I cannot escape as unspeakable. It is unspeakable in all its definitions.   Dictionaries describe the word unspeakable as unutterable, indescribable, inexpressibly bad, horrendous, beyond description and not to be spoken.

My experience of it is all of those things. It is as though there were an invisible gag stopping me from speaking of the exhaustion and if it were removed, I still could not find words for it – such inadequate things, words. Yet we often have only words with which to communicate, to try to convey to others any ideas at all.

Medical people, even those who sincerely want to help us, still use that completely inappropriate word: fatigue.  How I wish I could strike that word from the dictionary!  At the least, I wish I could strike it from the minds of doctors and from the name given this thing that is truly – unspeakable.

Recently, I was a patient in the cardiac emergency room of a major hospital.  People were so kind, so competent!  My gratitude for their care is immense!  And yet, I can still see how the intake person stopped typing when I had to name my overall diagnosis.  Her face well-schooled, only her fingers betrayed what must be policy.  Nowhere in that record will it say the name of the disease with which I have been diagnosed for over 20 years.  Only the measurable symptoms, including this cardiac issue (an electrical glitch) will be listed.

Inside, I became very small.

Inside, I felt a reflex of need to defend myself; “I did not diagnose myself!  Doctor after doctor after specialist after specialist have confirmed it!   I have documentation!  Do you think I want this label?  Don’t you know that every reputable agency has acknowledged that not only is this thing organic and real, but that they have compared the level of disability to people in end-stage renal failure and stated that patients are more disabled than those undergoing chemotherapy or even an AIDS patient 2-3 months from death?  Don’t just dismiss it!”

Inside, I remembered my brother, who, dying of AIDS in 1995, suddenly looked at me with sadness and understanding and said “Even I am less exhausted than you are.”  We had been talking about him, not me!  I hadn’t even been thinking about my own problems.  So, I have lived that comparison, and know it for the truth it is.

I’m just so tired of explaining.  I am so tired of trying to put words to the unspeakable.  I am so tired of taking care of the ramifications of this disease (even in the hospital several years ago, after major surgery) without the understanding of those who should understand best.  I am so far past the word exhaustion that it is truly – unspeakable.

YES – I know there are worse things!  Oh, believe me, I have seen some things that could have come out of the imagination of Edgar Allen Poe, and yet there are worse things than those!  But this thing, oh what a humbling thing…

…and therein I failed.  I failed in accepting as a gift, this lesson of humility, this opportunity to forgive.  After all this time, does it really matter if strangers understand what I go through? My Father knows what is suffered in secret.  My Father knows if I have made use of it and offered it to be made use of as He knows best.  My Father knows the gifts I’ve been given – the obvious and the hidden, the sweet and the unpalatable – and He tells me I must make use of them, make them grow, share them and account for them.

Thankfully, my Father also forgives and helps me get up when I fall down. 

Thank you for helping me learn from the unspeakable, Father.


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Yes, that’s what I wrote – yucky stuff.  We, who have learned the hard way that chronic illness means chronically keeping the details to oneself, even from uninterested doctors, are very unlikely to talk about the yucky stuff. I can’t believe, though, that I am the only one with this socially unacceptable disease who has some of these socially unacceptable symptoms.

I’m sure we’ve all read that frequent sore throats are a common symptom, well, for me it goes a step further into *gasp* yucky stuff.  Am I alone?  I doubt it.

I write today in the throes of an immune system that is really, really ticked off.  I expected to get slammed after the day of my son’s heart surgery; I even made sure I cleared any obligations until mid-May.  So, I’m no newbie to this stuff – but that doesn’t mean I’m taking it well.  And, as I endure the fanny-kicking that I can’t be surprised about, I find myself realizing that I’ve never told anyone but my husband about a particular yucky thing.

Enough with the lead-in, you say?  Okay, okay, here goes (I’m reminding myself here that few know my identity so being branded won’t be a big deal.)

The yucky stuff I refer to today are the magical, disappearing, reappearing deep-inside-the-mouth sores that come when every lymph node in my body is swollen and exquisitely painful and I can barely tolerate the pressure of my glasses near my aching ears.  Every tooth in my head hurts, too.  Yesterday, it went from being only on the right side to being on both to being gone for a few hours, then back again. 

Today I thought it was under control but I dared to shower (sitting down of course), wash my hair, dress AND straighten up my basement studio a little, pushing with all my will to do those things (yeah, I know, I should be smarter than that but I get pig-headed.)  Now, the ever-moody immune system has revved up the lymph nodes on the left side so badly that I feel beaten, my ear aches something fierce, and the sores are back again-running down the left side of the back of my tongue. My teeth hurt – all of them.    

In case you’re wondering, I see the dentist regularly, just recently in fact, and there is nothing wrong with my teeth.  Long, ever-so-long, experience has taught me that if I stay flat in bed long enough, it will all vanish again – sometimes in only a couple of hours, sometimes overnight, only to return when I’ve dared to be uppity again.  Licorice tea helps me, too, but only combined with becoming the Petrified Bedbound Woman.

Ever feel like the mole in one of those Whack-a-Mole games?

I know, I know, it’s gross to talk about sores.  That’s one reason I haven’t talked about it.  My husband knows because I’ve had to tell him why I can’t offer him a kiss when it’s happening or why he shouldn’t sip from my cup – but with anyone else, I just quietly take care of it, making sure to keep everyone safe while sparing them the yucky knowledge and sparing me their reactions. No one around me has ever caught anything but still, I am careful.

 I don’t know whether to thank Epstein-Barr, my documented initial attacker, or some nebulous other, but I do know that 20+ years later any doctor at any time can find swollen lymph nodes on me, even when I think all is quiet, I still can’t tolerate wearing a belt because my spleen hurts, and I never had any of these problems before that fateful long ago November.

 So, though the worst damage of the initial onslaught of this disease has been to my neurological system, the ol’ immune system took a hit, too, and isn’t shy about reminding me that things can get pretty yucky.

I guess for me, for right now, that Benedictine balance for which I am striving consists of the acceptance of even more rest and inactivity in a life that allows only an hour or two of activity at the best of times.  Since I have homework from the monastery that is due by May 15, I’d better get to balancing 😉


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Though I don’t get out much, since my last post I’ve had a number of occasions to ask myself the title question – by whose scale shall I weigh my value?  By whose measure shall I live?  I think it’s an issue that everyone deals with, and in living with invisible chronic illness I have found it to be something that crops up with sometimes distressing intensity.

Sometimes I feel as though I am coming apart in twenty different directions as I struggle with internal turmoil over the expectations of others, my intense desire for understanding, my own ideas of how I should be living, and how I know I live best with the very real demands of this disease.  Weighing obligations against consequences, trying to figure out what my obligations to others truly are, oh how stressful! 

Stressful – that word alone is a clue.  When I take time to be silent – to turn off the TV, the radio, the MP3, the world, rest when I need to, open myself to awareness of God, do what tasks I can that do not bring on the clamoring whirlwind – then I feel peace inside.  Maybe that’s all the answer I need – to be tuned into the feeling of being in peaceful balance.  If I am feeling stress, something is not in balance; the scale is skewed instead of floating evenly.

Do you ever compare yourself to others in terms of what they can do, are doing, and what you can’t? I have those times and they are anything but balanced and peaceful.  Sometimes they come just from watching TV or reading a newspaper or a book – real or fictional characters and lives lived with obvious contributions to the world really get to me.  Sometimes I have to limit my contact with those who are out in the world.  Sometimes my inner torture is much more personal, my children’s in-laws so involved with their lives while I exist in some nebulous otherness, the knowledge that my husband deserves far more of a partner than I am, the wish for friendships I’ve no strength to nurture or the big, involved, extended families of others.

Recently, Br. Jerome Leo (see link section for Holy Rule daily meditation) reflected upon a much-loved mentor who said to him that there will always be people who do more than we do and people who do less.  Such a simple statement – such a balanced outlook.  It’s a simple fact, some do more, some do less, let’s go forward, no need to agonize over a simple fact… Wouldn’t that be wonderful?  To arrive in that place where I might no longer hurl myself against what my heart knows is true and right – in this instance, that I must take care of myself as well as I would take care of others in the same position.

I love how St. Benedict wrote for the least of us, how he over and over refers to the weak as well as the strong and insists upon consideration and balance – and he does it with absolutely no judgement.  As though he is saying,  “Some need more, some need less, that’s just how it is in this life, go forward with that in mind just never give up trying to be the best person you can be – wherever you fall in that range.”

Needing more, needing less – no condemnation because that would be as silly as saying that blue is superior to green, apples to oranges – they are what they are and each has beauty and value.

So, am I at that place where I no longer anguish over balancing myself on the scales of others?  No, I can’t say that I’m there yet, but I have come to a place of increasing honesty about my health versus what is asked of me.  I am increasingly okay with saying “In my desire to avoid talking too much about the disease I have, I am sometimes guilty of  not explaining enough to help others understand.  I am not going to be able to _______ because I _______” (am too ill to plan that far ahead, won’t be able to handle being upright that long, am likely take so long to recover strength that I won’t be able to…  some general phrasings I use, also letting them know how much I wish it were otherwise!)

One difference between people who are chronically ill and people who are healthy is that when the healthy people extend themselves to do something, they don’t have to give up everything else in their lives in order to do it.  Unfortunately, many of us do and that can be a very poor balance with consequences beyond ourselves.

 My failure lies not in being ill, but in failing to have the courage to weigh my decisions on my own scale, help others understand with a simple but honest explanation, and then letting it go.


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I was about to try to write an entry about my thoughts on not having to prove myself to anyone. At the same time, I was going to put the CBS footage shown on my previous post into a page which would keep it obvious and accessible.

In the process of double-checking my YouTube link, I came across this video. PLEASE, if you are newly diagnosed do NOT fear you’re going to end up like the woman featured here! I post it for the use of all of us in informing others of how seriously disabling this disease can be – not will be for everyone.

Those of us, myself included, with the form of the disease that grows progressively worse over time seem to be a minority. Remember that and do not lose hope!

I post this then, for your use when it’s necessary to help others understand that we who are diagnosed with this disease must take it seriously and are made terribly ill by it. Hopefully, a day will come when we need no longer dread having to name our diagnosis. Having lost a brother to AIDS, I know the derision of others could be far, far worse than even we experience. Still, it can be hard to bear, and I hope that posting this video helps.

I post it also for those who have gotten better, and who think that if the rest of us only tried ______ we would be well, too. Please, remember to be kind to those of us who would (and have) tried countless things to be well. For some of us, it simply hasn’t happened.

And, lastly but not without great respect, I post it for the woman portrayed, who is doing what comes her way to do – who has not given up.

Thanks – and –


According to the YouTube site, this news segment aired on Feb. 10, 2011

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