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Shades Of Sleep: Invisible Illness Day

Sometimes I get a little daunted when May 12th rolls around each year, wondering what new I can say about the subject.  If you didn’t know, May 12th is Invisible Illness Day; a day to bring attention and awareness to illnesses and diseases which don’t manifest obvious outward symptoms for the world to see.  If someone has the measles or is in a wheelchair, you can hopefully tell that just by looking at them.  Diseases like fibromyalgia*, Chronic Fatigue Syndrome*, Crohn’s Disease, multiple sclerosis, mental health problems, Complex Regional Pain Syndrome7, Celiac Disease, lupus, rheumatoid arthritis, Lyme disease and the one I have, myalgic encephalomyelitis* (ME for short) are considered invisible illnesses.  This is by no means a comprehensive list, just a few examples.

Shades Trio

According to Wikipedia and the 2002 US Census Bureau, 96% of chronic illnesses are invisible.  This adds in an enormous extra challenge in obtaining proper medical care and treatment as well as being misunderstood by the population in general.  If people don’t know that there are quiet, private, hellish wars being fought every day by millions of people all over the world, how can we ever expect our treatment to improve, let alone find cures?

That’s why May 12th is so important.  We, the sick, need people to understand, to care, to help us advocate when our treacherous bodies won’t allow us to.  Awareness is the critical first step in any change happening.

Why is it so important that we treat ME?  What makes our disease so special?

It can be fatal.  People die from this.  If not from the disease ravaging our bodies for years and decades, then it often comes by our own hands as we can no longer endure the daily torment.

No one should have to live like this.  As someone who has what’s considered only a “moderate” case of ME, I can tell you it’s a living hell.  Pain is nearly constant, sometimes to the point where I’m in tears and desperately wishing to die.  It takes away the plans you had for a normal, fulfilling life.  Careers, hobbies and passions are taken from you.  You either simply cannot expend the energy on anything non-essential, you lack the basic funds to sustain most pursuits because most of us can’t work, or your brain is compromised by what we call “brain fog” and you’re unable to focus on and accomplish anything.  (More on brain fog later.)

We deserve to live happy, fulfilling lives, just like everyone else.  When you’re constantly in pain, always exhausted and unable to think clearly, this doesn’t leave much room for whatever kind of life you wanted for yourself.  And when I say exhausted, I don’t mean that we’re tired because we didn’t sleep well the night before.  On a good day for me, it’s like how other people when they have the flu.  A constant, crushing weight that makes the slightest exertion a Herculean effort.  On bad days all I can do is lay in bed and drag myself to the bathroom periodically.  Sometimes even feeding myself is a challenge.  I might have to choose between feeding my animals or myself, because I don’t have the energy for both.  And of course the animals always win; they’re my responsibility.

I am mostly house-bound and I require help with the sort of tasks I used to take for granted.  Forgot something at the store?  No problem, just go back tomorrow!  Nope, not with ME.  Any time I take a trip outside my home, I have to plan at least one full day of recovering at home from it.  If it’s something late at night, very noisy and extra stimulating, plan on 2-3 days at least.  (But frankly, late night, noisy, stimulating activities happen EXTREMELY rarely because of the damage they cause later.)  When I do gather my strength to photograph models, that is my exertion for the entire week at least.

ME is extremely isolating.  You can’t just go hang out with friends.  You can rarely make it to family functions.  Last year, I had to miss a surprise party thrown for my own mother, something which still upsets me today.  I was just too exhausted to go, and I knew that if I REALLY pushed myself and forced myself to go, I would pay for it for a very long time.

ME is vengeful god.  If you violate any of its insane decrees, you WILL be punished.  Probably for a long time; sometimes forever.  There have been cases where someone with ME did just a little too much one day, they spent the next day in bed… and then they were never able to leave it.  At the same time though, if you try and do as little as possible, your energy supply will shrink and you’ll be worse off too.  Damned if you do, damned if you don’t.

Right now ME received approximately 5 million dollars a year in funding from the US government.  To put that in perspective, that’s about the same amount given to researching hayfever.  Male pattern baldness gets at least four times as much.  HIV/AIDS, which is comparable in both frequency in the population and severity of illness, gets about 600 times that amount.  I’m not saying that HIV/AIDS patients shouldn’t receive that much; I think they should!  What I’m saying is that ME needs to be recognized at all levels of society and government as the deadly, hellish disease that it is and get proper funding as well.

This year I decided to do something that was a big stretch for me physically.  I planned a set of self portraits (all shot at the same time) with a rather complicated makeup look for my Enchanted Sleep series on living with ME.  Doing that much makeup on myself normally would have been enough exertion for one day for me, but that plus shooting the images, even with Geoff’s generous help, put me in bed for days afterward with migraines pounding my head.  But I’m not sorry.  It was worth it.

Oh yes, brain fog.  (Which I’ve got a bit of as I’m writing this.)  It’s like when you have a fever and can’t concentrate or think clearly.  Sometimes it reaches new heights where people suddenly can’t spell, remember their names or understand their native language.  Most days it’s more like mentally wading through a bog, at least for me.  I decided I wanted to portray this visually in the images I created since it’s such an annoyance at best and terrifying at its worst.  I think it will be obvious how I incorporated that element into the images.

I have the video I took of me applying the makeup as well as the finished photos to show you, but I want to issue a challenge as well!  I want you: you, who are reading this right now, to #GoBlue4ME!  Why blue?  Because that’s our disease’s awareness ribbon color.  What does “going blue” mean?  There are any number of things you could do to go blue.  I created a couple images that you could use as your profile photos for May 12th, or even this whole week (or more!).  You are more than welcome to download them and use them however you’d like!  You could dress all in blue and post a photo of yourself with the #GoBlue4ME hashtag on any of your social media accounts.  You could get a bunch of blue balloons, take a photo of them and use the hashtag on them too; anything blue works!

For makeup artists, I’m issuing a special challenge.  As you’ll see in my video applying my makeup, I used ONLY blue shades for this entire look.  Foundation, concealer, eyeshadows, blush, mascara, EVERYTHING.  I challenge you all to do the same and post your looks using the #GoBlue4ME hashtag!  If you’re on YouTube and create makeup tutorial videos, this would be perfect for you.  There are so many fun makeup challenges going around YouTube, Instagram and other social media sites; let’s make this the next big trend!  You’ll not only be stretching yourself, you’ll be contributing to a wonderful cause and helping us raise awareness for the whole world!

I did allow myself to use shades of teal, green and purple in my look because they’re offshoots of blue and I really thought it would make for a better overall look, so feel free to do the same.  And you don’t have to make the blue tie into your foundation color as well, but bonus points to you if you do. 🙂  Let’s have some fun, create gorgeous looks and help a community in need of a lot of support by coming together!

Ready to see the video and my images?  Here you go!  I’ll be releasing the images individually over the course of the week leading up to May 12th, but you can always find them all here.

And please, pass these around!  Share the links, video and images with anyone and everyone!  We have to make a lot of noise to get the change we so desperately need.  You have my full permission to share far and wide!

And please, if you take up the #GoBlue4ME challenge, let me know!  Of course, I can search the hashtag and see what you guys have been up to, but I’m very excited to see what you come up with!

One last note, your going blue does NOT need to happen on or before May 12th.  Keep doing it as long as you’d like to!  The longer we can keep the word spreading, the better.

Thank you to absolutely everyone who has and will participate in this!  You are helping so many more people than you know.  I thank you from the deepest wells of my heart.

Download these images and make them your profile photos for a day!

ME avatar 1

ME avatar 2

Shades of Sleep

Shades of Sleep, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

Shaed of Dreams

Shades of Dreams, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

Shades of Blur

Shades of Blur, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

*[There are various theories and arguments about weather ME, CFS and fibromyalgia are all the same disease or separate.  You’ll find as many different opinions as there are sufferers.  It is my personal belief that they’re probably all the same thing, or at least all very closely related.  Some people are extremely militant about using the “correct” name; I find it more important to help people understand by using the name they’re most familiar with.  I tend to use them all interchangeably depending on the situation and who I’m talking to, but if I had my druthers, I’d simply call it ME and be done with it.]

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[The following images are  © Ashley Lebedev, unless otherwise stated]

I have some health updates for you guys which I will tell you about soon (nothing too exciting, don’t worry) but I’ve been too busy doing the updated things that I’ve hardly had any time to write or edit or do anything creative.  I’m switching medications and weaning up to a therapeutic dose of the new one right now; I’m not quite midway through the transactions.  I feel pretty horrible; intense migraines all day and night, nausea, exhaustion (beyond normal levels even), pain flairs and insomnia.  But I don’t feel like I should be complaining about any of that after hearing what Ashley Lebedev, aka Bottle Bell Photography, has been going through.

æther.

© Ashley Lebedev | Bottle Bell ™

 

I knew that Ashley had some health problems, but that was about all I knew.  We both live inside the fine-art-conceptual-magical-ethereal-fantasy-fae-creating-characters-building-our-own-props-and-costumes-and-sometimes-self-portrait-taking-photographers-world, which as you can imagine, doesn’t have a HUGE number of members.  We’ve known each other online for several years and I’ve come to know Ashley as being endlessly creative, genuinely positive, extremely talented and an all-around lovely person.

But I didn’t know that she was dying.

The Guardian. | Faerieland Series

© Ashley Lebedev | Bottle Bell ™

It turns out that Ashley is far, far sicker than I realized.  Her doctors don’t even know exactly what the problem is, only that she is dangerously sick and will die without intervention.  But intervention is hard to get if you don’t know what you’re fighting.  Ashley recently launched a GoFundMe to help finance her journey toward health, which will likely include some very expensive stays at medical facilities, special tests and treatments, all not covered by insurance.

hallowed.

© Ashley Lebedev | Bottle Bell ™

This is going to be VERY expensive.  And Ashley needs our help.  I am asking you all to please help her, even if it’s a very small donation.  I know money is tight for most of us these days, I get that.  I wish I could have donated a much larger amount of money to her campaign.  But the thing is, even if we all only gave $5, it would make a difference.

New Faerieland | "The Great Hall"

© Ashley Lebedev | Bottle Bell ™

Ashley needs us.  And the world needs Ashley.  It would be a much darker, sadder place without her bright, beautiful soul.  So please, donate to her cause if you can.  And whether you can or can’t help with money, you can also help just by spreading the word about her fight!

The Weight of a Whistle Already Carved | New Faerieland~

© Ashley Lebedev | Bottle Bell ™

I know that she will also welcome any prayers, Reiki, good energy, lit candles, etc, sent her way.  I know that she can get through this, but she will need our help.  Let’s overwhelm her with our love and support!  Thank you all from the bottom of my heart!!

All images above are © Ashley Lebedev and are included to show what a beautifully talented artist she is.  I’ll round things off with my latest image here at the bottom.

The Living Sepulcher © Sarah Allegra, model - Dedeker Winston

The Living Sepulcher © Sarah Allegra, model – Dedeker Winston

 

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Something you’ll know about me if you follow me anywhere or have read any other blog entries is my deep, abiding love for Peter S. Beagle and all of his creations.  Yes, he is best known for his beloved masterpiece The Last Unicorn (the same story that was made into an animated film and you probably saw as a child, not grasping its full, profound meaning).  The Last Unicorn deserves every bit of praise it gets and more.  It’s the most incredible story, full of wonder and love and great sorrow… and joy, despite, or because of, the sorrow.  What many people don’t know is that Peter is an exceptionally prolific writer, having written more books and short stories than I can count (A Fine and Private Place is a very close second favorite to The Last Unicorn).  And every single one is just as brilliant of a masterpiece as The Last Unicorn.

In The Lilac Wood, a self portrait

In The Lilac Wood, © Sarah Allegra, a self portrait

I actually don’t remember a time when I didn’t know the story of The Last Unicorn.  As in the book, “there has never been a time without unicorns,” so there was never a time for me without The Last Unicorn.  It came out the year before I was born and I grew up knowing it.  My brother and I both loved it, and to this day can still quote nearly the entire thing by heart.  We would make a game out of it, seeing how long we could volley the script back and forth.  As I got a little older, I started reading the book, and each time I did, I discovered new levels, new depths, new nuances that I hadn’t been old enough to understand before.  It’s a common misconception that Unicorn is a children’s story, simply because the movie made from it was animated. There’s nothing wrong with children reading or seeing the movie, but it is a story for grown-ups.  You can’t fully appreciate the skillful, deft writing, the terrible tragedy, the glorious splendor, the tear-inducing sacrifice, the depth of the characters until you’ve experienced more of life yourself.

And Other Secrets, © Sarah Allegra, Model: Anna Wood

And Other Secrets, © Sarah Allegra, model: Anna Wood

It doesn’t surprise me now that I look back and remember that the very first self portrait I ever took, far before I was a “photographer” or a “self portrait artist” was inspired by the book.  The character of the unicorn, magically transformed unwillingly into a human girl for much of the book, taken from immortality into a body she feels dying all around her, resonated so deeply with me.  I probably don’t have to draw you a very detailed map of how it relates to my experience of living in a shitty body possessed by ME.  And yet the unicorn gains something which sets her apart from all the other unicorns in the world by her ordeal.  She learns regret.  She learns to love.  She is made more full for all her suffering.  It’s a hope I cling to for myself, sometimes harder than others, but one I return to again and again.

The Importance Of Mortality, © Sarah Allegra, a self portrait

The Importance Of Mortality, © Sarah Allegra, a self portrait

About two and a half years ago, Peter magically discovered some of my work which had been inspired by his writing (both The Last Unicorn and other stories) and his business manager, Connor Cochran, reached out to me.  There is still much under wraps and it will all be revealed in time, but we began working together, which was more than a dream come true for me.  Bless him, Peter is the antithesis of the saying “never meet your heroes.”  Meeting Peter only me love him and his writing more.  There truly are few more kind, generous and relentlessly creative people on earth.  And he is this generous with everyone.  At The Last Unicorn Screening Tour (which I HIGHLY recommend you attend!!) he will stay until EVERY SINGLE PERSON who would like to meet him, hug him, have him sign their book or take a photo with him is seen.  Despite the often very long lines, he doesn’t make you feel rushed, he takes his time and lets you say whatever you need to say.  In the moment you’re with him, you are the only person in the entire world and you have his full attention.  This does mean the screenings often end in the wee hours of night, and I don’t know how they all do it, those hours would kill me, but it’s just who Peter is.

Salt Wine - © Sarah Allegra, model: Peter Onorati

Salt Wine – © Sarah Allegra, model: Peter Onorati

A little while after I had signed my contract with Conlan Press, Peter’s publishing house run by Connor, I gathered up my nerve and asked Connor if I could borrow Peter and photograph him as DreamWorld‘s King when they were in town for the next screening.  To my joy, Connor gave me the go-ahead.  This led to a nightmarish few weeks when I frantically created Peter’s incredibly elaborate costume made almost entirely out of paper (fully documented here) but the results were worth every tearful, over-tired night I had getting ready for it.  No one could be DreamWorld‘s King better than Peter.

Beloved Of The Crown - Peter as the King, with Dedeker Winston and Katie Johnson as his maids.

Beloved Of The Crown – Peter as the King, with Dedeker Winston and Katie Johnson as his maids.

Aerie - Peter as the DreamWorld King.

Aerie – © Sarah Allegra, Peter as the DreamWorld King.

Why am I telling you all this?  Just to illustrate what an incredibly special and remarkable person Peter truly is, and how wonderful Connor and everyone at Conlan are.  They put their all into every single screening.  They are genuinely all wonderful people, and Peter is everything you would hope he would be and more.  I’ve been fortunate enough to have attended two of them; the first time was the same day that I photographed Peter so I had no energy for dressing up myself for the show, but the second time I went as Amalthea, as seen below (which won the costume contest that night, probably because of my handmade Have A Taco Purse, which I can make for you too!).  Seeing the movie in a theater never fails to bring tears to my eyes.]

At the screening as Amalthea (with purse) and back at home.

At the screening as Amalthea (with purse) and back at home.

Which, in my rambling, round-about way, leads to the main thrust of this post.  The tour had planned on traveling to multiple countries in Europe this year, and while the movie will still be shown and everyone will still have a fabulous time, Peter will be unable to attend due to a non-threatening health issue.  Peter is ok, there’s nothing to worry about, but still… even non-threatening health issues suck.  Peter hopes to be back on the road soon, but I thought that it might cheer him up if we all rallied and showed him some love.  What do you say?  For our beloved author who writes the stories which make us weep simultaneously from sorrow and joy?  He has given SO MUCH to the world, let’s try and give even a fraction of it back to him!

To Be So Full, © Sarah Allegra, model: Dedeker Winston

To Be So Full, © Sarah Allegra, model: Dedeker Winston

What do I mean by that?  Well, feel free to leave a comment here on the blog.  I’ll send them on to Connor who can forward them to Peter.  Feel free to leave kind words of encouragement on his Facebook page or send him an email at contact@conlanpress.com.  I’m sure he will really appreciate everyone’s show of support!

Sleight Of Hand © Sarah Allegra, featuring my neighbor John Harnagel

Sleight Of Hand © Sarah Allegra, featuring my neighbor John Harnagel

And let’s face it; we owe him.  For decades of wonder, joy and poignant insight.  For holding up mirrors full of fantasy which still reflect ourselves back and help us make new discoveries.  For every brilliant word typed, every tear shed and every heart which grew in size because of his writing.  For showing us what heroes are for.  For bringing us unicorns.

Get well soon, Peter.  We all love you 🙂

Now Has Come The Time For Silence -© Sarah Allegra, a self portrait

Now Has Come The Time For Silence – © Sarah Allegra, a self portrait

See all my Peter S. Beagle-inspired images here and buy fun things with these images on them here!

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Well.  You may remember from my last post that I was talking about taking a bit of a vacation because I’ve been almost constantly sick for over two months – sick on top of any fibro or ME stuff,  I mean.  Ironically, the day I woke up and posted that, I quickly realized I was coming down with yet another cold which turned into strep throat this time.  It’s only been about 9 months since the last time I had strep throat.  Since my health has been so incredibly sub-par recently, I realized pretty quickly it was turning into strep and got myself to urgent care (again) for antibiotics (again).  Last time I had strep, I let it go for a while before I realized what it was, so I was pretty much dying every time I breathed or swallowed.  While I was certainly uncomfortable this time, it wasn’t nearly as horrific as the last episode, so I’m thankful for that.

I am just finishing up my last antibiotics today, so while I’ve been resting to get over the strep throat, I did not take the “vacation” I was planning on taking.  At this point I think I’ll try and start it now… it’s not 100% ideal since I have two appointments this week (which for me is about as many “things” as I can put into a week) but I feel like I really need to just focus on this resting up and recuperating as soon as  I can to prevent more illnesses.  I’ll probably extend it a little longer than I’d originally planned on also, but again, I think it’s very, very called for.

I saw my new ear/nose/throat doctor last Friday since I’d about exhausted my regular doctor’s knowledge of what could be going on with my crazy, absurd body this time.  The new doctor had bloodwork done to test for allergies and (assuming I can stay relatively healthy) he’s going to do a CT scan of my head in the next couple weeks to see what’s up with my sinuses, among other things.  The idea is to have the scan done while I’m at my “baseline” and not sick with anything new, so that adds another level of needing to stay quiet, rest and be healthy.

And did I mention pain spikes in the last post?  OH MY GOD, pain spikes.  And migraines.  Serious, grabbing-your-brain-in-a-vice, I-am-not-fucking-around migraines.  It was all enough that my pain specialist added a new, stronger pain medication to my collection of pills.  Do I win a prize if I collect enough pills?  Is it like Pokemon?

Today I feel well enough to write this, so I’m trying to knock it out before my energy wears off.  I’m still planning on being a little less active online than has been typical for me in the past (and of course I was VERY inactive while I was in the grip of strep) so please continue to bear with me as I work on improving my health.  I will not be intentionally ignoring or neglecting anyone.  I would much, much rather be happy and chipper and be able to do whatever I wanted, whenever I wanted, but that’s not the way things are right now.  Please don’t take any unresponsiveness on my part personally; I just may not be on the computer that day, or a migraine might not allow me to open my eyes, etc.  Regardless, it won’t be you, it’ll be me.

I did have one photo that was all ready to go, and one which doesn’t require a ton of promotion as others sometimes do.  So I’ll slip this one quietly online then go about my resting and vacationing and watching endless cat videos on YouTube through the TV.  (How amazing is it that you can watch YouTube on your TV now??  I love that!)

This image is a new DreamWorld photo, featuring the ever-wonderful Katie Johnson. It gives us a glimpse of a human girl who has been given a sleeping draught of some kind which sent her into a deep, silent slumber… who gave it to her and for what purpose are a mystery.  The billowing blue smoke tells me that something important is about to happen; perhaps a new creature will make itself manifest!  We may find out more in a later image.

We shot this… gosh, at least several months ago, though it may have been longer than that.  A while is safe to say.  I’m wearing a sweater and scarf in the behind-the-scenes photo so it was definitely NOT recently as California has been doing its best impression of the scorching depths of hell the last few months.  This is actually in my front yard (I love it when I can shoot without driving anywhere!).  There are some marvelously old trees here, and this one had a delightfully curly branch which Katie gracefully draped herself over.  It took a little maneuvering on her part to get into position without sliding right off due to the slippery fabric of the dress she’s wearing, but Katie is a pro and didn’t let that stop her.  I lit a few blue smoke bombs in my “smoke bomb bucket” and tried to scurry around, spreading the smoke generously through the frame to composite together later.  It took a number of smoke bombs and careful placement, but I was able to get pretty much all the background covered up and filled any holes in Photoshop.

Sleeping Draught - spreading blue smoke

Sleeping Draught – spreading blue smoke.  Also, ignore the way Katie’s dress is pooching strangely; I can promise you it has to do with the unusual cut of the dress and does not reflect Katie’s body 🙂

So please enjoy this latest DreamWorld photo and the detail shots below!  Thanks to Katie for always being up for all my crazy ideas and for being able to look so serene and beautiful while pretend-sleeping on an uncomfortable tree branch!  Now if I could get my hands on this sleeping draught, I think my resting would be a lot more healing and easier to handle!  Lastly, please don’t feel like you can’t talk to me or interact with me while I’m “vacationing;” I’m sure to get lonely, I just might not get back to you as quickly as I’d like depending on how the day is going.  Thanks to everyone for your support and encouragement!

Sleeping Draught

Sleeping Draught

Sleeping Draught - detail

Sleeping Draught – detail

Sleeping Draught - detail

Sleeping Draught – detail

Sleeping Draught - detail

Sleeping Draught – detail

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Before I forget, I want to thank everyone who so lovingly came together for my friend Erick!  I am extremely happy to say that he is doing much, much better and has been released from the hospital.  He isn’t through this rough patch yet, but it seems the worst is behind him and his spirit has been lifted for the fights ahead.  Thank you all dearly for your thoughts, wishes and prayers.  I know it all made a difference.

I wanted to let you all know that I’ll be taking a “vacation” for the next week or so.  I’m not going anywhere; in fact, the whole point is for me to stay at home and really, really rest.  August was one of the worst health months I’ve had in a long time, including two urgent care visits (very early in the morning) two appointments with my GP,  a 5am call to the 24 hour nurse hotline (which led to one of the GP visits but I was worried I needed to to the emergency room) two colds, one ear infection, one thing which I thought was another ear infection and turned out to be allergy-related, countless migraines and almost as many nights of insomnia as nights where I slept.  It was just a really hard month.

I had a few photography things I needed to take care of, but as of now, I’m taking a little time off.  I’m thinking a week or so, but obviously I can tinker it to fit how I’m feeling.  I may not be on social media as much for the next few days and I may or may not post a photo next week.  I actually have one ready to go but the posting requires more energy than you’d think, especially if it needs to be promoted in any way.  So that’s all to say, I’m going to hunker down and try and stay in bed in my PJs as much as possible for the next week.  I may be a little quieter online, but it won’t be forever.  🙂

And that leads me neatly into two other things I’ve been trying to find time to say between all the craziness.  One is a guest article I wrote for MESupport.Co.UK.  Louise, who runs the site, was very generous with letting me pick the topic I wanted to write about and also being extremely forgiving about how long it took me to actually get the article to her!  It was fun to write it once I actually could, and I got to use a story my dad likes to tell about me when I was very little, so give her a read 🙂

I was discussing the ALS Ice Bucket Challenge with @RidgeBackRogue, who also has ME, a few weeks ago and wondered out loud what we could do for ME that would be similar.  One of the problems with the Ice Bucket Challenge is that people with severe ME would never be able to do it; they can barely tolerate light, let alone ice-cold water.  It would be uncomfortable and a little harmful even for me, and I’m just moderate. We wanted it to be something that anyone of nearly any health level could do.

She immediately came up with a great idea: The ME Movie and Chocolate Challenge!  Guess how it works.  Within 1 week of being challenged, you must watch any movie of your liking while eating something with chocolate!  We’re pretty forgiving here, so if you don’t care for chocolate, you could substitute whatever you like best.  Then you donate the average price of a movie ticket to an ME charity – I like the Microbe Discovery Project for the US and RidgeBackRogue suggests Invest In ME for UK residents!

And while those with the most, most severe form of ME still wouldn’t be able to participate, the poor souls, this is accessible to people of a wider range of the health spectrum.

So that’s it!  I’ll be doing my ME Movie and Chocolate Challenge over the next week… what should I watch?  If I had to pick right now, I’d probably go with Cloud Atlas, The Green Mile or In Bruges… or just a bunch of episodes of Breaking Bad, True Detective or Rectify; enough to make up a movie’s-length of time.  I don’t see how I can go wrong with any of those choices!

Would anyone like to volunteer to be next?  Extra karma points to you if you do 🙂

In Between Awake And Asleep - this is what I plan on doing for the next week; magically hovering over the bed.  Or maybe I'll deign to actually lay in bed.  With PJs that are actually comfortable.  And sleep.  That all sounds better.

In Between Awake And Asleep – this is what I plan on doing for the next week; magically hovering over the bed. Or maybe I’ll deign to actually lay in bed. With PJs that are actually comfortable. And sleep. That all sounds better.

 

 

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