Feeds:
Posts
Comments

Archive for the ‘Explanations to Others’ Category

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 »

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 »

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 »

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.

Read Full Post »

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

 

http://invisibleill.wordpress.com/2011/09/30/fatigue/

 

Peace.

Read Full Post »

Published by The Journal of Internal Medicine and reported by Kim McCleary (click on any part of this sentence.)

Though it is not the norm for me to involve this blog with research items, sometimes it’s important to help get information to those who might not otherwise find it.

As for my personal situation – I meet all criteria for this definition of ME. Though I can’t say I’m fond of the acronym, perhaps it will be a step forward.

May we all thrive, whatever the label.

Peace.

Read Full Post »

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.

 Peace.

Read Full Post »

Older Posts »