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Posts Tagged ‘chronic’

I believe I’ve mentioned before that I have a rather, uh, active dream life.  My nights are often filled with deeply archetypal storylines, heavy with symbolism and metaphor, which, I suppose, is probably part of why I’m drawn to creating images along the same lines.

Hold The Gate © Sarah Allegra - detail

Hold The Gate © Sarah Allegra – detail

Sometimes my dreams are quite silly upon waking, like the dream I had where I was aboard Star Trek’s Enterprise (the original show) and Spock and I had to beam down to an alien planet so I could find my gold bikini (ah la Leia, in Return of the Jedi) which we needed in order to defeat the attacking alien army (different aliens than the ones who lived on the planet my bikini was on) and save the world.  I don’t think I was ever clear on how my gold bikini would do this, but it made sense in the dream.

Sometimes my dreams are very serious and are clearly working through problems and fears, current or past.  I had a whopper of a dream a week or two ago which I’m going to tell you about, as it relates to my most recent image.

This dream was set in the world of The Hero And The Crown, by Robin McKinley, one of my very favorite books; one of those comfort-food books I turn to again and again, especially in times of trouble.  If you haven’t read it, go and do so.  I’ll wait.

I was Aerin, the heroine of the story.  Geoff was Tor, whom I was betrothed to.  We lived in Tor’s parent’s castle (which doesn’t make sense with the book, but never mind) and nobody in the entire kingdom liked or understood me.  My only friends were Tor and Talat, my horse, along with the rest of the castle’s horses.  They had an entire army of war horses who would fight in formation on their own, without the aid of any human riders.  I took great comfort in visiting the stables frequently to get away from the nastiness of all the people and be with creatures who loved me.

The great dragon Maur, easily as big as the castle and made of pure evil, had come back and was laying siege to the castle along with numerous other giant, pure-evil dragon friends of his.  We were hopelessly outnumbered and everyone knew there was really no chance of winning this battle, but we had to try.  The dragons could only attack us at night, but in this world it became fully dark at about 1 in the afternoon and stayed dark until the regular sunrise of 5-6 in the morning.  This meant each night was very long.

Interestingly, Tor already possessed the Hero’s Crown, which ought to have given him the ability to fight the dragons off, but it wasn’t working.  It held them off a little, just barely, but it wouldn’t survive another night.

I visited the stables after the first night, thanking the horses, some of whom had been greatly wounded or killed, for their bravery in battle.  Quite a lot of them were also pregnant and foals kept popping out every time I turned around.  We had a good talk and I felt encouraged after I left them.

I found Tor and told him that I had to travel back to my family’s castle to retrieve two magic rings.  If we both wore them, then we would be strong enough to vanquish the dragons.  The thing was, I could only tell Tor where I was going and why.  I had to keep it a secret from absolutely everyone else.  At the end of the dream, I was riding off on Talat to my castle to get the rings, knowing that everyone hated me because they thought I’d just deserted them when they were most in need.  Dusk was falling as Talat and I galloped along and I knew I had to really hurry to get the rings and return to Tor’s castle in time to help everyone survive.

A couple things I should point out right away; Tor’s family in the dream is NOTHING like Geoff’s actual family.  His family embodies that friendly, easy-going, pull-up-a-chair sort of Midwestern charm you always hear about.  They’re truly all wonderful people, so don’t think that that part of the dream had any resemblance to reality!  Also, as far as I know, there aren’t any large groups of people who hate me.  I suppose I could be wrong about this, but again, the dream is not representing real life in this way.

After mulling it over a lot, talking to my mom (who is especially gifted at dream interpretation), Geoff and my therapist, I came to a few conclusions.

The dragons = ME.  Now, to be fair, I actually like dragons, but my brain often uses them as a symbol for big, bad, evil things.  (It also often uses Calantha to represent my inner child in dreams, which is just full of Freudian symbolism.)  Fighting ME every day often really does feel like you’re besieged by dragons.  You’re trapped in your castle (house/body) while an unrelenting assault of badness attacks (all of my ME symptoms; pain, fatigue, etc).

I was confused about the nights being so long until I remembered something I’d said to Geoff a few days before the dream.  I had realized that most days I spend 11-12 hours a day in bed sleeping, or at least trying to sleep.  If I can get a solid 11 regularly, I feel much better, but since my sleep is so poor, I’m often trying to make up for the bad sleep, so the time spent in bed creeps up higher.  I was startled when I realized just how much time I spent every day just trying to sleep.  I’d been getting frustrated, feeling like my days were so short and there were never enough hours… and while I know that pretty much everyone feels like there aren’t enough hours in a day, I suddenly knew why it seemed like my days really were getting much shorter.

ME also really messes up your sleep.  And if you do find yourself up at 4 am, watching TV, taking a cocktail of pills to try and get back to sleep, as I often do, nights can feel especially long and lonely.

I think that the Hero’s Crown was all the stuff I’ve tried already to feel better, all of which promise to work and cure you, but none ever has.  The rings were a hope of future treatments or cures.  Going off to get them while things were most dire represented the typical path of trying a treatment, which usually involves over-exerting yourself in some way first (going to the doctor’s office, my several-times-a-year nerve-blocking injections).

I suspect that the crowd of people who disliked and misunderstood me is my fear of people not understanding that I actually am sick, even if I don’t look like it outwardly.  This is an extremely common worry from anyone with an “invisible illness;” any sort of sickness which does not manifest in outward signs.  I often feel the need to make sure new people in my life know that I have ME and have a basic understanding of what it is so that they don’t think I’m lazy, or that I just didn’t want to go to their party, or have dinner with them.  It’s a pretty big fear, to be honest.  Almost without exception, everyone who is in my life knows what my deal is and while they invite me to things, they’re all very understanding if I can’t make it, especially if I have to cancel last minute.  I really, really hate to cancel at the last minute, but sometimes your body leaves you no other choices.  The secrecy of my mission to get the rings was mirroring the invisibility of my case of ME.

As for the more pleasant things about the dream, Geoff as Tor believed me, and he also supported me even though the entire rest of the kingdom wished he wouldn’t.  That’s 100% Geoff.  He will love and support me, in a fantasy battle with dragons, or in the real world battling insurance companies.  He is a fearless protector and someone I can always count on.  I also liked that for the magic rings to work, we both needed to wear them.  I think that speaks to the importance of having someone caring for and supporting you through this stupid disease.  I can fight it on my own, but it’s a million times better to have an ally.

And lastly, the animals will always be with me.  I have had a special kinship with animals of all kinds, since before I can remember.  My dad likes to tell the story of how there used to be a couple of huge Great Danes in a house behind ours and how they would bark and bay and snarl ferociously through the small gap in the fence if they saw you.  One day I came inside and said, “You know those big dogs out there?  They’re really friendly!”  Alarmed, my dad checked to make sure I still had all my fingers, then came outside with me where he realized that the Danes were causing a fuss because they wanted attention, not because they were aggressive.  Then for a while I collected snails in a bucket and kept them as “pets,” which I believe led my parents to get my first dog because it was just so pathetic that I was gathering snails to be my friends.  Animals have always been a big part of my life, creatures I can trust and rely on, who are as unchanging and solid as a mountain.

As I was meditating on the dream, I kept being reminded of a few big scenes from the biggest battle in last season’s Game Of Thrones.  You don’t really need a lot of context for it, just that the good guys are trying to keep the very bad guys out, and they’re horribly outnumbered and outmatched.

(Sorry, YouTube won’t let you play the videos here, but if you click the little “YouTube” button near the bottom of the video screen, it will take you directly to the videos.)

It may seem silly to those who have never experienced ME, but this is what it feels like to me.  Like you’re outnumbered 1000 to 1, the other side has mammoths and giants and all you’ve got is a fairly useless sword to try and fight them all off.  There is no end in sight, and barely any hope that you’ll succeed.  This is also the way a lot of The Hero and the Crown goes, which is part of why it’s one of my favorite books.

It may sound silly to those who have never know chronic illness’s cruel touch, but I’m willing to bet that everyone who has dealt with it will understand at once.  It’s exhausting to fight an enemy every day, who you can’t see or touch.  And even more so when some people don’t believe the enemy exists.

So, as I do, I had to take a self portrait to work through my feelings on this dream.  What could be more DreamWorldy than an image inspired by an actual dream?  I can imagine this being a snippet of DreamWorld’s rich history, perhaps during the Yellow King’s grab for the throne.  I edited it with both The Hero and the Crown and Game of Thrones in mind, lending visual inspiration.

We sick will keep fighting.  We will hold the gate.

I’ll hold the gate.

Hold The Gate © Sarah Allegra

Hold The Gate © Sarah Allegra

My lighting setup for Hold The Gate:

Hold The Gate lighting setup

Hold The Gate lighting setup

My tripod it balanced on the mattress and the camera would shift slightly whenever Calantha, also on the mattress, moved.  There was just enough room between my bed, the closet and all the other things in that part of the bedroom to make this work.  Who needs a studio??  😉

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As we approach Black Friday, Small Business Saturday and Cyber Monday, I have another post about my wares, this time with a big, fat, site-wide discount!

Now Has Come The Time For Silence - © Sarah Allegra - fine art print

Now Has Come The Time For Silence – © Sarah Allegra – fine art print

Enter code MYTHIC2014 to get a whopping 20% off any and all items from my Etsy shop!  This is a huge sale, the biggest I’ve ever created, so take advantage of it while it’s active!  It will be good until January 31st 2015; perfect for buying holiday gifts for yourself and others, as well as spending any Christmas money you might get 🙂

Let me tell you a little bit about my prints.  They are made at an extremely high-quality printer in downtown Los Angeles.  My printer is not at all easy to get to; there is always traffic and I manage to get lost and the entire experience of getting there is terrible, but I wouldn’t change printers for the world.  Even if I moved out of state, I’d keep using them and have them ship me my prints.  The incredible quality of the prints they deliver is just that high.

Aerie - © Sarah Allegra - fine art print

Aerie – © Sarah Allegra – fine art print

Each and every image is carefully calibrated to reveal even the tiniest details.  They somehow manage to keep the highlights high and the lowlights low without a single pixel’s worth of detail loss.  The colors are an exact match for how I intend the images to look.  These are NOT easy things!  I have been through many printers before I found POV Evolving.  And a special shout-out and thank you to Lauren, who always handles my orders!  She is a delightful person and makes sure each and every image created is perfect.

In addition to all that, they only use archival inks and paper, making prints that are museum-quality and which will last for a lifetime!  The paper they use is this thick, luscious paper, almost like watercolor paper; nothing cheap or flimsy.  Every single time I have an image printed, I’m impressed with how amazing it looks, even though I’ve been seeing how great they look for several years!

To The Lost - © Sarah Allegra - fine art print

To The Lost – © Sarah Allegra – fine art print

In addition to the incredible quality of every print, all my images come in limited edition runs.  There are a few exceptions, but generally it looks like this:

12 size small prints at 8″ x 12″

10 size medium prints at 10″ x 15″

7 size large prints at 16″ x 24

That means that there will only ever be 7 prints made of that particular image in that size, in the entire world, ever!

Occasionally, I also have props or wearable art available in my shop as well!  Right now, you can have your own Wind Goddess headdress, which also looks quite wintery, for not very much 🙂

Where Earth Meets The Sky - detail.

Where Earth Meets The Sky – detail.

The Wind Goddess Headdress available on Etsy now!!

The Wind Goddess Headdress available on Etsy now!

I also have a section of my shop dedicated to ME/CFS/fibro-inspired prints from my Enchanted Sleep series!

Each and every print will come signed and numbered along the white border.  If you’d like a short, special message included, I’m happy to add that for you, free of charge!

One more word about my prints; the quality of them was high enough that Peter S. Beagle himself took them along legs of his The Last Unicorn screening tour.

Five of my prints along the left side of this photo (photo not taken by me)

Five of my prints along the left side of this photo (photo not taken by me)

This was extra special because not only was Peter S. Beagle, one of the biggest sources of inspiration to me and one of my two favorite authors (the other being Robin McKinley) had this adorable moment with Game Of Thrones author George RR Martin right in front of my prints:

Peter S. Beagle and George RR Martin with plushies, in front of my prints!

Peter S. Beagle and George RR Martin with plushies, in front of my prints!

I’d like to say quickly that the above photo went a bit viral and I have been credited as the photographer, but I did not take this photo.  I wasn’t even in the same state as they were at the time!  I tweeted about the photo since it’s adorable and also in front of my prints, and then it really took off, but I did not snap the image, and though I have tried to correct news sources, they continue listing me as the photographer.  So, I’m sorry to whoever did take this photo; I have tried to set the record straight!

This Dying Body - © Sarah Allegra

This Dying Body – © Sarah Allegra – fine art print

Take a look around my Etsy shop and don’t forget to use your discount code MYTHIC2014 to get 20% your entire order!  Let me restate that this is the biggest, farthest-reaching sale I have ever had on my prints, so be sure to take advantage of it while it lasts!

If there is a certain image you’d like a print of, or you see an image you like but want it in a different size, just let me know!  Some of my images are under contract and I am unable to sell prints of them for that reason, but the majority of the time, I will be able to accommodate you very easily!

Remember, the discount code is only good until January 31st 2015, so get ready, get set… go!!  Happy shopping!

Katie Jonson being silly and posing with a framed print she modeled in

Katie Jonson being silly and posing with a framed print she modeled in

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As we approach the Holiday Season, I’m dedicating the next few days to promoting my artwork-related items, which would make wonderful gifts for anyone!  Whether you’re looking for straight artwork you can hang on the walls, some inexpensive stocking-stuffer/Secret Santa gifts, or something with a more practical application, I’ve got you covered 🙂

Today I’m focusing on items which can be found in my Red Bubble shop!  I talked about this some in my last post, but I can go into it a little more in its own post.  What do I sell in my Red Bubble shop?  A LOT.  All of the following can be found with my artwork on it!

I started buying Red Bubble calendars before I ever started selling any of my own and I’ve been constantly impressed with the incredibly high quality year after year!  The paper is thick and lush, the inks print vividly and the design maximizes the room for artwork!  I truly love having one of these in my house each year (and I get frequent requests for these as gifts for friends and family).  It’s such a simple way to get 12 unique pieces of art to hang on your wall, adding beauty and magic every single day and it comes at a great price!

My 2015 Calendar!

My 2015 Calendar!

And if that’s not enough for you, you can also shop by series!  Want to see everything DreamWorld-relatedEnchanted Sleep, for those who chronic illness has touched?  Orphans of the Mother Road for vintage-lovers?  Glass Walls for the animal-lovers in your life?  Pop Culture-inspired?  How about Music- and Literary-Inspired images?  Or are you a fan of a good old self portrait?

I have never had any issues with any of the items I’ve ordered from them myself, nor have I heard anything negative from others.  Red Bubble really makes buying fun and easy!  You can visit one site and take care of many people on your to-buy-for list and get your shopping done quickly!  And if you’re looking for any image in particular on any item in particular, just let me know!  I can very likely accommodate any requests!

As always, I sincerely thank anyone who helps support independent artists with their buying power!  You guys help make what I do possible 🙂  Keep an eye on the blog for the next couple days as we approach Black Friday and Cyber Saturday/Monday!  New items will be showcased and some really fantastic savings will be revealed as well!

Happy shopping to all!

Lady Death, by Sarah Allegra

Lady Death, by Sarah Allegra

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******* NEW! *******

Red Bubble is holding a 15% of Stocking Stuffers Sale!  Use promo code STOCKING15 to get 15% off all stocking stuffers until 11:59pm PST on Friday, November 21 2014

I have also released my 2015 calendar, featuring 12 of my most popular images from the previous year!  I put out a new calendar every year making each one different and unique, as well as being a great value in getting 12 images to display.  Snap up this collector’s item and add a little magic and beauty to every day of 2015!

My 2015 Calendar!

My 2015 calendar!

The calendar features the beautiful models, actors and actresses Katie Johnson, Dedeker Winston, Dan Donohue, Travis Weinand and Aly Darling.  Images span many of my series’ such as DreamWorld, Enchanted Sleep, Glass Walls, Orphans Of The Mother Road and self portraits!

My Red Bubble store carries calendars, tshirts, hoodies, stickers, blank greeting cards, post cards, phone and tablet cases, laptop skin, throw pillows, tote bags, mugs (travel and regular) and even a few duvet covers, all covered in my images!  Every item they produce is extremely high quality and will last forever.  You can knock out all your holiday shopping in one stop, so come on by!  🙂

*******

It’s been a very crazy couple of weeks since my last post!  My sinus surgery is over, including an odd complication I had which caused an artery near the back of my sinuses to burst unexpectedly.  This led to me losing 2-3 pints of blood and having to have an emergency surgery last Tuesday to correct it.  I’m happy to say I seem to be all done bleeding and nothing else strange has happened since then!  I’ll tell you more about my adventure in another post; it’s a rather long story.  I’ve regained most of my strength but I’m still recovering a bit.  So let me tell you about today’s self portrait for now!

This image has been in my mind for a long time, ever since I this post.  I had discovered, in the course of looking through my blog’s stats, that someone had found my blog by searching “I have Chronic Fatigue Syndrome and I want to give up.”  My heart still breaks for this person.  I wrote a post at the time replying to them but I’ll probably never know if they saw it or what happened to them.

I’d wanted to create an image for my Enchanted Sleep series based on the idea of being beaten down by chronic illness yet getting up, but it took a while.  My first attempt was unsuccessful and I had to think for quite a while about what wasn’t working and then find time to reshoot it.  Eventually though, I had created the image I wanted to make.

While I had physical, chronic illness in mind when I was creating this, the image is certainly not limited to being interpreted just in that light.  Mental illness, for example, is another example of something you have to rise from again and again.  And it happens that I’m in a bout of depression myself right now.  The reasons are long and complicated so I won’t get into them now, but every day recently, I’ve felt like this just trying to get out of bed… never mind how I might feel physically.

Chronic illness, mental illness… they are not something you can beat in a day.  You’ll have good days and bad days.  You may have entire days, or even weeks or months where you don’t struggle with whatever it is that knocks you down.  But when it comes, you have to get back up.

Every time.

Every time.

Every time.

It can be exhausting, and you might not have anyone in your life who knows that you’re even battling like this.  Those who have a strong support system in place are fortunate; it helps, a lot.  But whether it’s something others know about or not, it’s a demon which must be faced and conquered every time it arises.

I hope that everyone reading this has their own support system to keep them going.  Friends and family, online or off, who can cheer them on.  Who can give them the push or pull they need.  We all need help from each other; there’s absolutely nothing wrong with asking for or receiving help.

Asking for help can seem more daunting than fighting the beast holding you down.  But do it.  No matter who is reading this, you have people in your life who love you, who care about you, who want you to succeed, who will extend the hand you need to get you through this.

Whether it’s an internal struggle no one else will ever see or you have countless loving people help guide you through your troubles, we must rise every time we get knocked down.

Every time.

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra

If you need help and you don’t feel comfortable approaching anyone you know, you can always talk to The Samaritans.  You can call them, email them or even text them.  They have people around 24/7 to help you through whatever you’re facing and it’s completely confidential.  They are well trained and caring.  Give them a try if you’re in need of someone to talk to!  I can personally vouch for how much they help.

 

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“She twines her spine up slowly

Toward the boiling sun

And when I touched her skin

My fingers ran with blood”

-True Detective’s Theme Song “Far From Any Road,” by The Handsome Family

Toward The Boiling Sun - detail- © Sarah Allegra

Toward The Boiling Sun – detail- © Sarah Allegra

It occurs to me that Cacti and Sinuses sounds like a weird band name 🙂

Here we have another True Detective-inspired image for my Pop Culture set of images.  This one was inspired more directly by the song used in the show’s title sequence, Far From Any Road, by The Handsome Family.  The song’s lyrics tell the story of a cactus which blooms once every thousand years.  Anyone who witnesses the rare event is driven mad by it.  Which, considering how much inspiration the show took from Robert W. Chambers’ The King In Yellow, a short story collection about a fictitious play which will drive any viewers or readers  insane, feels perfectly fitting.  It also is a brilliant pairing in mood and style for the show; the images and beautiful double exposures all work in such harmony… it’s the most beautiful pairing of music and television.

I don’t think my imagination is anywhere near being done inspired by True Detective though!  It’s the show that just keeps giving and giving 🙂

I’d like to clarify that I did not actually force Katie Johnson to sit nude in the middle of a cactus pile.  No models were harmed in the making of this image!  I composited an image I shot of Katie from a high angle with images I shot of my neighbor Donna’s cacti and blended them together in Photoshop.  Thanks to Geoff for steadying the ladder I was on shooting the cacti and helping to make sure I didn’t get stuck by any of their needles!

Changing the subject; at this point, I’ve had eight colds since the end of July, one of one which lasted for 3 weeks, two ear infections with the colds and strep throat another time, so I am having sinus surgery tomorrow.  Apparently my sinuses aren’t draining like they’re supposed to, the germs are never really leaving and they keep taking over my body again and again.  Despite my generally poor health with the fibro and ME, my sinuses haven’t really ever been an issue up till now, so I’m hopeful that the surgery will clear things out and this will stop being an issue.  On average, I’ve only had about two to three weeks between colds for the last three and a half months and I can’t tell you how VERY TIRED I am of having colds.  Lots of acute illnesses of top of chronic illness feels terribly unfair.

The last couple months have been rough health-wise, but I’m very eager to let the doctor clean me out and hopefully set me down headed the right direction!  I’ve been told to expect to feel extra crappy for a while after the surgery, and I was able to get a few simpler images edited before today in case I’m feeling really terrible for a while, so there shouldn’t be any big break in images being posted.  I will also have my wonderful husband Geoff to help me through my recovery; he has had this exact surgery before, which I’m sure will be very handy to help me figure out how to best deal with whatever negative effects I feel from it.  He’ll be with me the whole day of my surgery and the next, and after that I should be ok to be on my own.  But I’ve got my wonderful neighbors right next door in case anything comes up!

I’m chomping at the bit to get the surgery over with so I can start actually feeling better, but of course I’m also a little nervous about it.  So wish me luck; your good thoughts and energy will be very welcome!  I’ll try and update the blog when I’m feeling up to it.

Anyone else here on Instagram?  I just joined recently; let me know if you’re on there!  Also, if you missed it, please see my last post about the near extinction of wild lions, as portrayed through Travis Weinand in DreamWorld; a cause very important to me!

One of the things I love about working with Katie is how her heavy dance background translates so beautifully into her modeling.  She is just always so graceful and effortlessly aware of every part of her body, able to emote even through her fingers and toes.  With that said, please enjoy Katie’s beautiful work in this latest image of her!

Toward The Boiling Sun © Sarah Allegra

Toward The Boiling Sun © Sarah Allegra

Toward The Boiling Sun - detail- © Sarah Allegra

Toward The Boiling Sun – detail- © Sarah Allegra

Toward The Boiling Sun - detail- © Sarah Allegra

Toward The Boiling Sun – detail- © Sarah Allegra

Toward The Boiling Sun - detail- © Sarah Allegra

Toward The Boiling Sun – detail- © Sarah Allegra

Thanks, Katie!  You’re always beautiful!  And thanks to everyone in advance for your well wishes!

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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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This will be a short post.  I wanted to share with you all a short video I made for the Microbe Discovery Project, a group using crowd-sourced funding to research myalgic encephalomyelitis, otherwise known as ME.  They asked for people to share their stories of ME with them by video or text, so I did just that.   I always wish I could help them in more concrete ways by giving them millions of dollars, but I’ll help with what I can; being open and honest about my experience with ME and making more people aware that they exist and could use some help.

Hope you all enjoyed the video, and please consider donating to the Project if you have the means!

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