What do you do when you crash?

[Jody]

I'm glad you posted Andrea, and very glad you are still able to keep up with your writing. Interesting that we ahve a cluster of writers here.

And Jody, I appreciate your info. How would one go about finding a good naturopath?

Lucie

Hi Lucie,

I'm afraid I don't know the answer to that. I just lucked out, really.

I got a flyer in the mail from this woman who offered free 15 minute consults (she actually gave me over an hour of her time) and then heard from my mother that she had been seeing this same naturopath for awhile and had been getting good results.

If you lived near me, I'd just give you her name and tell you to go see her.

Anyone else have any suggestions for Lucie?

 

[Jerry S]

If you can afford it, a DVR is great

islandfinn:

I have become a bit of tv watcher! I've watched more tv in 8 years of ME/CFS than I had in my whole previous life. And no, I rarely watch edifying programs - I like mainstream adolescent pap - NCIS, Bones........and Bill Maher and Private Life of a Masterpiece when I can

I hope nobody else is reading this, but I watch a lot of TV, too. A DVR and basic cable are two of my luxuries.

I have trouble watching an hour of TV, without taking a break. With my DVR, which I rent from the cable company, I can pause live TV anytime and come back later when I'm rested.

If I miss some dialog, I just skip back 15 seconds. I usually watch a 1-hour show timed-delayed 30 minutes, so I can skip forward through the commercials.

I have the Turner Classic Movie channel as part of my basic cable package. This is great for me. The movies are shown uninterrupted and uncut. I usually watch movies and TV with the closed-captioning on. It makes it easier for me to catch the dialog.

As far as TV is concerned, with a DVR you become a Time Lord.

One problem I've discovered is you can't go past the present. I'm always trying to skip forward through live commercials.

 

[jackie]

Hi Jerry! I'm crawling out of my lair so I can TOUT my wonderful ROKU! Your post has finally given me the opportunity to admit my TV/MOVIE watching OBSESSION without fear!

First admission: I have (over the years of my illness) taped (VHS unfortunately) 432 movies from TCM! Picture 432 dusty, old VHS tapes - far too many with the titles haphazardly marked with everything from a crayon to faded marker - actually used Lipstick one time!...don't ask!

SOMETIMES I remembered to use the paper sticky label - but not always?! And, yes, I do know I'm going to be forced one day, to use one of those "things" (which I don't even have) and transfer the VCRS to DVDS!.....RIGHT!?

What used to look like a video store with a wall of floor to ceiling shelves (and about 200+ DVD'S as well) has eventually turned into many plastic totes stacked up in a basement room down a huge staircase - no longer easily accessible to me.

Then - a few months ago - I discovered Video-on-demand (NETFLIX and AMAZON) and my ROKU device. I pay $8.99 per month and I get one dvd through the mail at a time.

This I'm not interested in...BUT what I ALSO get for no extra charge are unlimited streaming movies, tv shows etc. all the time, whenever I want, stop and start, no limitations - I LOVE IT!

About 12,000 titles to choose from, including tv series, and ALL genres of movies.

So I get the Classic old movies - Film Noir, The Thin Man series, screw-ball comedies, dramas, Musicals, etc.

Old tv series from the 50's, hoakey old sci-fi, lots of BBC series (DR. WHO, Masterpiece Theatre, Monty Python, The Avengers, Ballykissangel, Monarch of the Glen, Doc Martin, stuff like that).

Indie movies, Foreign Films, and the Documentaries are fantastic! (they even have Joseph Campbell's "Power Of Myth") - it's endless!

I had to buy the ROKU Device (about the size of a paper back book) for $99, and you need a cable coming in (I had wireless for my Laptop).

I also set up Amazon's V.O.D. program (no monthly fee for this) but their selections you can either rent for 30 days (1 time viewing for about 1.99 - 3.99 per movie) or "buy" (keep always).

I'm not as fond of that as I sometimes fall asleep and waste my $$ and my one shot at viewing!

I have 274 in my "queue" from Netflix! SOME might think this excessive - but not true! I recently discovered the ridiculous Voyage to the Bottom of the Sea series from the 60's and Sea Hunt with Lloyd Bridges! What a hoot!

Oh, and LOTS of Concerts (just listened to Kenny Rankin's last jazz club concert...wonderful, but for some strange reason I have more trouble listening to music than just watching movies?! I think it's because of the emotional response I have to music, I guess - too bad)

Granted the video-on-demand doesn't offer ALL that I had on my tapes...I still use some of those.

I have a pretty good collection of Silents/early 20's (mostly Charlie Chaplin, DW Griffith - Birth of a nation, and Fritz Lang's Metropolis).

And what I considered the absolute laugh-out-loud FUNNIEST old comedies (for my taste anyway).

Miracle of Morgans Creek, Merrily we Live (with one of the the best comedy routines I've ever seen with Henry Fonda & Jimmy Stewart!), Merrily we Live (Hilarious!), the Margaret Rutherford Miss Marple's.

Blythe Spirit, The Importance of Being Ernest, Mad Mad Mad etc.World, The Russians Are Coming, Cabin In The Sky (Ethel Waters, Lena Horne - prefaced with a disclaimer about racism).

You've got the British St. Trinian series, and the DARK stuff like Andrei Tarkovsky's The Sacrifice (have to really "gird my loins" to watch this one!) and The Juniper Tree (VERY darkly weird from Iceland).

And of course all of Ingmar Bergman's - Persona, Through A Glass Darkly, The Seventh Seal, Wild Strawberries and Smiles of a Summer NIght (Sondheim wrote a "little night music" from that one - it took me awhile to figure that out!?)

And THAT brings me to Akira Kurosawa's Films! And THAT would naturally take me to Anime...and on and on!

This is my one splurge - I no longer leave the house, except for Dr. appts. (no stores, no dinners out, no Coffee Houses, movies, Theatre, Art Shows, nothing - nada!...Well, I DID go to a wedding this year!)

So THIS is for me! I consider laughing as my therapy.

This has turned into a RANT! I intended to self-impose a ban on posting for awhile to rest up. But since movies - especially classic ones - are my passion...it's a good "rant"!

How about "sharing" your, and other afficianados, good movie advice? Like you, I can't stand the commercials - so I just don't watch the live tv shows as often....I haven't figured a way to go forward - er, "past the present" (I like that! it's sort of cryptic!) either.

Hi Islandfinn!...I like NCIS and Bones, too! Nothing adolescent about those! - so you're OK! I used to faithfully watch ALL the Law and Order's, and The West Wings. Oh, and HOUSE!....it's just that he's so MEAN!

Ha! I'm all shook up! Better retreat to my Fuzzy Blankie - I'll tune in later.

So long, Farewell, Auf Weidersehen, Goodbye.........jackielacie

 

[Jerry S]

Jackie:

Sullavan's Travels is my favorite Preston Sturges comedy. I love Kurosawa and the animation of Hideo Miyazaki. For a few.

I've been neglecting my Netflix for Turner movies on the DVD. My Netflix queue has about 180 movies, and I've rated about 1600.

Have you see Tarkovsky's Andrei Rublev about the icon painter? It's over long, but the ending is beautiful.

 

[MEKoan]

Dear Andrea,
And then, my best coping tool is that I day dream. I was a writer (including some fiction) before I was ill, so I write stories in my head, and enjoy them. (Sadly, because my fingers get very weak I can't write them down.)

Also I will imagine pictures I would paint or gardens I would plant. I find that I can almost get myself in a trance state by imagining - and I believe it helps me recuperate faster.

I think these are fabulous ideas! It seems so obvious but I've never done either of these things and I love to play with my mind.

It really shakes up the creative paradigm to not be attached to having the thing you create - just create! Brilliant! Thank you very much for sharing these activities.

At other times, because my vision is usually affected also and I can't read too much at a time, I will read a couple of paragraphs of some difficult to absorb and retain material, then try to see how much I can remember.

I do this one. And, for me, it's not always difficult material

I also revisit old homes in my mind. I walk around and look at various rooms and the things in them. I find my childhood home is the most accessible in memory.

I also like to listen to the world through an open window. If I could, I'd spend my time in a hammock on a porch. Anyway, I like to listen to the sounds of people, dogs, birds, wind, rain, streetcars... through my window.

I have a very good situation for that - an apt. on the back of a building which faces the end of a major street with a streetcar but, here at the end, it's not very busy. Behind the building are many enormous trees so I wake to birdsong. It's an excellent, ever changing, soundscape. I would not find endless birds as interesting as this richness.

Peace out,
Koan

 

[Dreambirdie]

skating away...

Fantasy really works well for me too. I trance out more easily now that I've had many years of practice.

I used to be sort of predictable in my fantasy life, going to my usual favorite places (real or imagined) and doing things I think I'd be capable of if I was healthy. But lately... I've gotten more daring in what I venture into.

A few weeks ago, I was watching ice dancers on tv, in one of their skating championships. I was mesmerized by the Canadians who won. So that afternoon, before my nap I had a vision of myself in flowing black robes, gliding in perfect unison across the ice, like an ice dancing diva, with my old high school boyfriend. In real life, I never got any better than being barely able to skate backwards. So I had this thought go through my head... "you can't do THIS!" and then I had a second thought, "It's my fantasy! WHY the hell NOT!" and fortunately the second thought won.

 

[Hysterical Woman]

House

:

Hi Islandfinn!...I like NCIS and Bones, too! Nothing adolescent about those! - so you're OK! I used to faithfully watch ALL the Law and Order's, and The West Wings. Oh, and HOUSE!....it's just that he's so MEAN!

Wow Jackie - quite a list you have there!! I just wanted to make one comment about HOUSE. I used to watch the series until he did that truly despicable episode on CFS. I will never watch that again :-(

Happy Viewing,

Maxine

 

[jackie]

YES! Sullivans Travels! love it and his use of Joel McCrea (also loved McCrea with Ginger Rogers in The Primrose Path!)

Did you know that Veronica Lake was like 6 months pregnant during the filming of " ...Travels"? Take a close look at her, in her bathrobe during the swimming pool scene - you can actually see her bulging tummy!

Also, The Lady Eve and The Palm Beach Story. I think Sturges' tongue-in-cheek, satirical comedic brilliance really comes out with the Miracle of Morgans Creek!

There are so many hysterical "bits" in this movie it makes your head spin! Concentrate on the kid sisters exchanges with her father (she's a nervous wreck in the film - jumpy as a cat - and keeps trying to sit on his lap - and HE, grumpy and irritated beyond belief, continually tries to kick her in the rear!...."one of these days they're just gonna find some hair and your ribbons floating in the SWAMP! he says!)

Then there's Eddie Brackens character trying to steady his wobbly legs (in an illegal, antique War Uniform) during the wedding by the Justice of the piece, and Betty Hutton...painfully hyper - but delivering her lines with no artifice at all!

A must see if you haven't already, for the wonderful dialogue, let alone the visuals!

I've managed to tape almost all the Kurosawa's...Kagemusha, Throne of Blood, Ran (favorite is still Seven Samurai) - but someday I must try to get them on dvd - the quality of my home made tapes is awful! Not so bad for the B&W - but my grainy color for some, is a shame!

My granddaughter has supplied me with all the Miyazaki's (Howl's Moving Castle is my favorite, I think!)

And you're the second person to suggest the Rublev film - so I'll find that one soon!

Did you watch The Sacrifice? I have two favorite films about a group of people waiting for the "END". This one (Sacrifice) at one end of the spectrum and the lovely French film, "The May Fools" at the other, much, much lighter end!

And Jody, Lucie, Andrea, Koan and Dreambirdie....I sometimes try to tell myself "stories" before falling asleep (this SOMETIMES influences my dreams - which is absolutely wonderful, except that I don't always want to wake up from them!)

My world now revolves around my bedroom (it's very small but it opens onto a deck which looks over my backyard - where I've buried all my treasured pets! - as well as a few from other grieving relatives, always with crying kids and a ceremony of some kind...I guess they know I'll never be leaving this house (been here since I was 11 yrs. old!) - so it's a safe final resting place!)

There is a strange comfort in having my special pets "hanging around" so to speak. I have dogs out there (up to a certain size, of course)...cats, hamsters, birds and reptiles. All with their tiny little markers that one of the kids made!

And yes, the yard is quite big, thankfully. Although "they" have taken up a lot of the space I PREVIOUSLY used to plant my vegetable garden - NOT NOW!!!!

My husband has learned not to question my requests - he calmly and dutifully treks outside, armed with a shovel, spade and many flashlights - as this event must always be done under cover of darkness! Neighbors, you know.

He did draw the line when we lost our old Austalian Shepard this past summer....but reminds me that my ashes are destined to go in the Rose Garden! Ok by me.....

I still have two very much alive, Pomeranians (which have saved my sanity more than once) that never leave my side.

Oh, and now that I can read again, I've been re-discovering Mark Twain...in particular his collection of short stories. And Innocents Abroad, Roughing It, TheGilded Age, and Following the Equator.

There are not too many stories I read ALOUD to myself, but the stories about Adam and Eve (just can't remember the titles) are some that I do.

One time I tried reading these out loud to a waiting room full of patients, at a dr. appt....this was NOT appreciated, I can tell you!

I must confess I sometimes quote the poems "The Raven" or "The Highwayman" just to hear my own voice!...but I make sure no one else does!?

Just saw your post, Maxine! I didn't know/watch about the episode re: CFS...and it's a good thing I didn't! I started to watch House because one of my grandaughters is studying for her Masters in Nursing and also works as a Scribe in a local E.R.

She said all the pre-med/nursing students just LOVE the show. But I stopped because the character is downright MEAN (it hurt my stomach to watch him sometimes) and this absurdly flippant way of portraying his pain meds use. It does worry me a bit that our "future" docs/nurses think his character is so great!? Yikes

ok, back to the Blankie...moving from reclining to FLAT! (Although I AM getting pretty good at typing with the laptop on my belly - think is one of my longest posts so far!....just no laughing allowed!?)

jackielacie

 

[MEKoan]

I'm watching the Primrose Path right now on TCM!

 

[leelaplay]

oh my gosh - leave a thread for a day and look what happens!

As far as TV is concerned, with a DVR you become a Time Lord.

One problem I've discovered is you can't go past the present. I'm always trying to skip forward through live commercials.

so true Jerry! Since the old tape days I've wanted to fast-forward through commercials, and then bits of life! (guess we're not alone in this - Jim Carey, Click)

So glad you picked my brain and put in all the dvr, Turner info - had had it in, but it disappeared. LOVE the pause & rewind. And being the Lord (genderless title to maintain connotations, Lady might lead ones thoughts elsewhere) of Time is kinda fun too

My DVR is full of Turner movies I haven't been able to watch yet, including Sullivan's travels. Supposedly there's a machine that will burn dvds from the dvr, maybe even while watching. It's on my list of things to give myself some day! No matter what, I LOVE Turner for rescuing all these old films. ANd then to show them ad free?????

This has turned into a RANT! I intended to self-impose a ban on posting for awhile to rest up. But since movies - especially classic ones - are my passion...it's a good "rant"!

It sure did Jackie!!! I love it. Lots of favs there. Even more inspired to find that machine that I can record to. I keep having to delete things I haven't watched yet.

I hate to go and leave this pretty sight

Also I will imagine pictures I would paint or gardens I would plant. I find that I can almost get myself in a trance state by imagining - and I believe it helps me recuperate faster.

me too Lucy. Do you find you can even smell the garden sometimes; feel the warmth?............

I think these are fabulous ideas! It seems so obvious but I've never done either of these things and I love to play with my mind.

we love it when you play with your mind too!

I used to be sort of predictable in my fantasy life, going to my usual favorite places (real or imagined) and doing things I think I'd be capable of if I was healthy. But lately... I've gotten more daring in what I venture into.

Oh, I LOVE it! What inspiration dreambirdie- be more daring - of course, I can do anything I want in my fantasies - thank you for this!

ps I can't imagine you being predictable, but guess it's all part of the dance; we settle down, we expand into new horizons, we hunker down, life forces a change, ..............

I just wanted to make one comment about HOUSE. I used to watch the series until he did that truly despicable episode on CFS. I will never watch that again :-(

Thanks for the info weldman. I didn't know about that - it must have been during one of my black-out phases. Way to walk your talk!


Phew time's almost up!

I also like to listen to the world through an open window. If I could, I'd spend my time in a hammock on a porch. Anyway, I like to listen to the sounds of people, dogs, birds, wind, rain, streetcars... through my window.

I like to watch as well (yes yes jackie - Peter Sellers). It was a deluge here this morning, but warm for the BC west coast; it's el nino time. Now it's clearing up. I can see the cherry tree outside my window with the glowing orange and ochre leaves quivering and swaying in the wind. The horizon is starting to reveal itself - I can see about a mile down the valley now. The grey sky is lightening in places, the wind is drying things out.........

if

 

[jackie]

Rats! I was so busy yammering away I didn't pay attention!

This is one they don't show that often and I should have added it to my collection of badly recorded tapes!

I'll just settle down and WATCH it! Thanks, Koan!

jackie

 

[MEKoan]

Through my window, I can see soft shafts of autumn light gently illuminating the rich and subtly varied colour of the miriad yet perfectly aligned bricks.

 

[Dreambirdie]

Through my window, I can see soft shafts of autumn light gently illuminating the rich and subtly varied colour of the miriad yet perfectly aligned bricks.

I don't think I've ever experienced such yummy subtle colored bricks before.
Strangely, if I put music to them, it would have to be Bach. Something about that perfect alignment.

 

[Hysterical Woman]

The "infamous" CFS HOUSE episode

http://en.wikipedia.org/wiki/Cultural_references_to_chronic_fatigue_syndrome

 

[jackie]

ISLFIN...Oh, what you did......now I'm awake again and I CAN'T stay away!

Glad you got my Farewell bit with your Hate to go bit!

Ok, then - Peter Sellers....In addition to all the Pink Panthers, we've got "I'm Alright, Jack", "The Naked Truth" (with Terry-Thomas - I found this VHS for 4 bucks on Amazon!) "The Party" (this one always good for a laugh - especially the opening shot of Sellers character being SHOT even made my husband chortle and he's pretty stoic about this stuff!).

"The World of Henry Orient" (watch Paula Prentiss as she's being loaded into the police car, hat and hair askew - priceless little gem!) And get your hands on "The Lady Killers" from Ealing Studios, and the "Smallest Show on Earth" and I almost forgot his smarmy "roles" in "Lolita"!

If I could re-incarnate ANYONE to return to this world and live with me it would be Margaret Rutherford!...oh, and Danny Kaye...um, and Gene Kelly and Cary Grant....what a quartet that would be! and I'd add my Grandma and my Dad to the mix.....) NOW, That's ALL!

Except to complement Koan! You've painted a PICTURE for me with your words - just as beautiful as any painting or photo could be!

I'm "seeing" the color of a Maple Leaf. BACH is just right!

Thanks!.....jackie

 

[Hysterical Woman]

TCM & Books on CD

I love all this movie talk. Now I know I'm not the only one. If something happened to TCM, I don't know what I'd do.

TCM is no longer on basic cable in my area. You have to pay big $$$ and get all kinds of channels I don't watch to be able to see it WAAAHHHHHHH.

I am lucky, however,to have a good library not too far away. I can go on line and have any movie in the county system sent to that libary. They have a ton of books on CDs there too. It is great to lie in a dark room and have someone "read to me"

Maxine

 

[Sunday]

Oh mysterious ones, grant the knowledge to your would-be initiate, crashing in the night:

what is TCM?

 

[_Kim_]

Oh mysterious ones, grant the knowledge to your would-be initiate, crashing in the night:

what is TCM?

TCM=Turner Classic Movies or
TCM=Traditional Chinese Medicine

 

[salome]

i have my blue Couch of Perfection

that i subside on regularly. i must get horizontal when the plug gets pulled. i experience sensory overload easily and down i go. my overload can be physical, emotional, mental.. i can tell because distortions start to occur- a reaction starts- a feeling of going off-track- sounds are too annoying and grating- light too bright- motion too frenetic- outer world too demanding. brain all agitated, uncomfortable, bruised, off-feeling.

likewise pain settles in here and there or everywhere. no energy firing up at all. i'm done for the duration. must keep everything to an absolute minimum until i rally to whatever extent that can happen.

i was on valcyte (powerful anti-viral) for over 5 months(was found to be very high with HHV-6; the treatment wiped me out and sent my guts into suffering mode for months and months- head and neck hurt terribly- and i still relapse into those symptoms- but i got relief in some ways- my cognitive functioning mostly came back; i found that rest could revive me much better than before; my orthostatic intolerance also greatly improved.

but i'm left with extreme weakness, such a lack of energy, increasingly de-conditioned body.

spirits generally plummet with crashes, so i commit myself to doing what it takes to recognize and work with this. and when i can i do whatever i can to enjoy and appreciate my life. wish i could do so much more-

nice to be online here- thanks- Salome

 

[_Kim_]

Hey Salome,

I have a blue loveseat of perfection. It's soft and reclines and is getting a big dent where my butt has been planted for the better part of 2 months.

Thanks for sharing your Valcyte experience. Sounds like it was rough going there for awhile.

Glad you've joined in. Welcome.

~Kim