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Posts Tagged ‘Invisible Illness’

Christmas Is Coming

I Felt It Was Glory Model: Travis Weinand © Sarah Allegra

I Felt It Was Glory
Model: © Sarah Allegra, sarahallegra.com

Well, it’s been a little while, hasn’t it?  A big part of the reason I’ve been so silent recently has been due to that bastard ME doing its usual bastardy things, just more of them and more frequently.  Sigh.  I won’t recount each and every thing, since not only would that be boring for you, but it would also take far too many spoons for me to type up.  So let’s just leave it at I was being held hostage by ME.

Between Awake and Asleep Self portait © Sarah Allegra, sarahallegra.com

Between Awake and Asleep
A self portrait, © Sarah Allegra, sarahallegra.com

Ok, I will actually tell you about one thing it’s been doing because it’s new and super annoying.  Keep in mind that I’ve lived through many winters by now, and this has never happened before.  Usually, summer in Los Angeles just about kills me each year, but the winter provides a much-needed break from the oppressive heat.  However, this winter I’ve been experiencing something very strange and it’s difficult to even put it into words.  It’s like my body is having a lot of trouble adjusting to temperature changes.  Say I go to sleep at night (as I usually do) and it gets kinda cold overnight.  I actually like things getting cold; it means it’s not hot!  But then when I wake up in the morning, the air is cold, the house is cold, so I bundle up and turn the heat on.  But then as I’m bundled up, I start to sweat, as if I’ve overdone it and now I’m too hot, only I still feel cold.  Then I’ll start sweating more, which does its job and starts cooling me off, so I feel even colder, so I pile on more clothes and heat, then I sweat more, and I get colder… and the cycle continues until I’m a tearful puddle of both ice and fire, shivering in front of the radiator, stripped down of as many clothes as I can bear, waiting painfully for my body to just figure it out.  Which might take an hour or two for it to do, and by then I’ve used up more than all my spoons for the day and it’s barely breakfast time.
Images from my 2017 calendar. Models: Teri Wyble and Dedeker Winston. © Sarah Allegra, sarahallegra.com

Images from my 2017 calendar. Models: Teri Wyble and Dedeker Winston. © Sarah Allegra, sarahallegra.com

It seems to be more of an issue when I’m stressed (thank you, Geoff, for pointing this out!) so staying calm helps, but you all know how easy it is to simply stay completely peaceful every single second of the day.  If we don’t let it get SO cold at night, that also seems to help, and if I force myself to warm up and cool down more slowly, those things help too.  But it’s just one more obnoxious way the ME toys with me and makes life more difficult.  ME, you’re a sadistic bitch.
Some time soon I will also tell you about FINALLY having another round of nerve-blocking injections after months and months of fighting with my insurance company over them and the recent developments in Calantha’s growth removals, but I’m not ready to get into any of that right now.  So, on with the show!
They Lived To See The Dawn A self portrait with Calantha, © Sarah Allegra, sarahallegra.com

They Lived To See The Dawn
A self portrait with Calantha, © Sarah Allegra, sarahallegra.com

This is the time of the year when I usually remind you guys of all the things I sell which would make excellent holiday gifts for whomever you have on your list, so I’ll keep to that tradition!

Of course, there are my fine art prints, available through my Etsy shop.  It’s not at all cost- or time-efficient to list every single image I have available in every size, so if there’s something you’d like and you don’t see it listed, just email me!

Two more images from my 2017 calendar. Model: Katie Johnson, © Sarah Allegra, sarahallegra.com

Two more images from my 2017 calendar. Model: Katie Johnson, © Sarah Allegra, sarahallegra.com

I also sell my images printed on all sorts of fun items through Red Bubble.  What kind of things?  Just about anything you could want!  Tshirts, mugs, scarves, leggins, clocks, phone and laptop skins/cases, stickers, blank greeting cards/postcards, tote bags, zippered bags… really, you name it, they probably have it!  I like Red Bubble because it gives a really wide range of prices starting just a buck or two for a sticker, so it’s workable for virtually any budget 🙂

2017 calendar, front and back. All images © Sarah Allegra, sarahallegra.com

2017 calendar, front and back. All images © Sarah Allegra, sarahallegra.com

Red Bubble is also my printer for my collectable yearly calendars!  You can get your 2017 calendar right here 🙂  These are some of my favorite things to produce, as well as some of my most popular items.  They’re practical and also give you an inexpensive way to have 12 beautiful images to display on your wall throughout the year; a great value!

I’d also like to mention that I’m really happy with the quality of what Red Bubble makes.  I’ve bought numerous items from them over the years, for myself and others, and I’m always very pleased with how they look and function!

Introspective: A Photographic Quest

Then there’s my self-discovery-through-photograhy-online-course Introspective: A Photographic Quest.  It’s still almost 50% off its normal price because I haven’t had time to figure out another hosting option for it yet (Udemy recently decided to cap all its classes at a maximum of $40 per class, regardless of the original cost).  Take advantage of that savings while you can!  This isn’t a class so much about camera functions, f-stops, shutter speeds, etc (although I provide links which explain those things to those who want to learn).  This is truly about exploring who you are as a person and portraying that through art.

The eight-week course gives you weekly prompts of things to photograph; it’s more like visual journaling than simply taking photos.  You can share the images if you want or keep them all to yourself, the choice is yours!  I built the class based on my experience with the incredible healing power of art and self portraits when I first picked up a camera; this class is completely unique and would make a wonderful gift for anyone who enjoys art and/or self reflection!
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And something new this year; I’ve also selling high-quality skin serum through my other Etsy shop!  This is a skin serum I developed while searching for the perfect serum for my own face.  I couldn’t find what I wanted anywhere, so I took matters into my own hands and made my own blend of oils!  Once I saw the wonderful results it gave me, I started giving it to friends for them to test and they also reported excellent results.  After many glowing reviews from friends and friends-of-friends, I decided to start offering it to everyone!

My serum is blended with high-quality, natural ingredients (no fragrances or fillers).  It’s 100 % vegan and cruelty-free and it is safe for all types of skin.  Each bottle is hand-made in small batches and infused with eternally loving unicorn energies!

Right now I’m offering two different versions, one for your face and one for your hands and nails, but the base of both blends are the same.  They contain rosehip seed oil (high in fatty acids, vitamins A and C, it helps to regenerate skin and stimulates cellular membrane and tissue regeneration), argan oil (an extremely healing oil overflowing with vitamins A and E and anti-oxidants, along with omega-6 fatty acids and linolec acid which helps ease inflammation while deeply moisturizing the skin) and vegan squalene oil (one of the most effective and powerful moisturizing ingredients currently known!  Because it mimics the body’s own natural moisturizers, it can penetrate the skin well and is absorbed quickly.)   And you also have the option of adding vitamin C serum to your oil blend (reduces signs of aging and is especially wonderful for eliminating sun spots or other skin discolorations.  This vitamin C serum has an infusion of enriched organic aloe and jojoba oils to provide additional healing and hydration for your skin.  These unleash powerful antioxidants while preventing the formation of free radicals which contribute to signs of aging.)

Concrete Walls Model: Katie Johnson© Sarah Allegra, sarahallegra.com

Concrete Walls
Model: Katie Johnson© Sarah Allegra, sarahallegra.com

 

So, there you go!  Now go have fun shopping!  🙂  If you choose to purchase anything from the places listed in this post, thank you very much!

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What Else Can I Say About ME?

Here we are at May 12th again.  Another Invisible Illness Day come to bring awareness to all the illnesses and diseases which are impolite enough to leave their sufferers still appearing to be well.  Of course, anyone more than casually acquainted with someone who has fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, complex regional pain disorder, multiple sclerosis, rheumatoid arthritis, Crohn’s disease, Lyme, lupus and many, many more illnesses can attest to how debilitating they can be.  The facade of health they leave intact feels like salt in the wound; a confusion for those untouched by their cruel hand, a silent undermining force with us at every doctor’s appointment, a declaration that we are lying or greatly exaggerating our illness.

What else can I say about ME?  About all the other forgotten, ignored diseases swept under the rug of modern medicine?  Illnesses which embarrass our doctors with their constant reminder that we remain unhealed.  Sicknesses with confusing, confounding symptoms which can morph and change like the whim of a butterfly’s flight.  Maddening maladies which suck away our vitality, our joys, our passions, our lives as completely as any vampire.

I’ve written about ME extensively as it’s been an enormous part of my life for the last eight years.  How I have not had a single day since late May of 2008 that was free of pain or its constant, overwhelming exhaustion.  How it has progressively gotten worse each year.  How the government would like to pretend we invisibly ill don’t exist.  How grotesquely underfunded our research is, giving us the same amount of money for research as hayfever gets and less than 1/4 of what male pattern baldness receives.  You have heard me spout the facts and statistics.  You’ve heard me talk about my personal story and fight with ME.  What else can I say?

I can say this: I am not beaten.  I have not given up.

I am determined to get better.  I am committing myself to be well, even if I have it about through sheer mental will.  I will not give in to ME’s gloomy, hopeless future forecast of progressively worsening every year.  I am not accepting a future of the living death that is ME.

I don’t know exactly how I will get better, but I am going to.  As a sign of my determination, I changed my blog’s tagline for the first time since I started this blog years ago.  “Art, photography, life and why I always feel like shit,” felt perfectly appropriate at the time.  “Art, photography, life and how those are really all the same thing,” is much more appropriate now.  My identity is not Sarah-who-has-ME.  I am just Sarah.

As I wrote about in my last entry, my life has been pleasantly consumed recently by my spirituality.  I have strongly felt how focusing on fighting ME has been feeding it.  So now, I will ignore it as much as possible.  I do not mean that I will forget my body’s current limits, or not honor them.  Listening to my body and what it’s able to do is vital for my current and future wellbeing.  But I’ve realized that I can live within the confines of my case of ME while still not letting it reign in every area of my life, and that feel incredibly freeing.  This is the path I will pursue.

This also does not mean that I will not advocate for ME sufferers.  I still feel very strongly that the only way we will bring about change is by demanding it.  And we can only demand it if we know that it exists in the first place.  But I can also advocate without allowing ME to rule every part of my soul.

As May 12th approached, I wanted to create a new image for my Enchanted Sleep series, which is all about living with ME.  I asked Katie Johnson, frequent model and collaborator as well as dear friend, if she would help me bring some concepts to life and she gladly agreed to help.  Through a variety of factors, I wasn’t able to shoot these images until very recently, which meant I had a very short window to edit one up and release it for Invisible Illness Day, but I got it done!  Ideally, I would be releasing the whole short series we shot, but I am content with having just one to show you and help illustrate life with ME.  With that, please let me present my latest image to you, Living With The Tombstones.

Living With The Tombstones

Living With The Tombstones – © Sarah Allegra. Model: Katie Johnson. An image to help raise awareness about ME/CFS and other “invisible illnesses.”

I probably don’t have to explain the symbolism behind shooting this image in a graveyard.  ME (and many other invisible illnesses) truly can be a living, nightmarish death.  Even if you’re not one of the unfortunate souls cursed with severe ME, where any touch, light or sound cannot be tolerated, you die every day to the dreams and hopes you had when you were healthy.  You might discover new passions to pursue within ME’s confines, but do you ever truly forget what’s been taken from you?  If you do, I am not there yet.

I took the name “invisible illness” and interpreted it quite literally, editing out any part of Katie’s body which showed outside her long, princess-like dress.  And the mirrored mask felt like the perfect touch.  When people look at us, they rarely see us; they see their projections of who we are.  Often what they see says far more about them than us.  Some will look at me and, because I can occasionally manage to put on clothes, have Geoff drive and go with him to the grocery store, refuse to believe there could be anything physically wrong with me.  They don’t see the toll that those short, simple trips take on me.  They don’t know that grocery shopping is my ENTIRE plan for that day, probably several days.  How the lights and noise and bustle inside the stores give me migraines, panic attacks and leave me in bed for the rest of the weekend.  They don’t see the weight of my illness on Geoff and my family.  How if I see friends, they always have to come to me.  I so often feel like a dead-weight wife, daughter and friend.  The times I’m overwhelmed by the ME and can’t decide between crying and being too tired to cry.  How many pills I take every day to try and make it to the next day and not be consumed by the constant pain I’m in.  They just see a fairly normal-looking girl.

I can’t blame other people for not knowing that I’m sick.  I don’t display the characteristic signals of someone who is unwell, so of course people assume I’m healthy.  But we need to get to a place where I could tell a stranger that I have ME and they might know what I’m talking about.  That if someone else said they have MS or Crohn’s or fibro, that stranger would have heard of those illnesses.  That the stranger would have at least a basic idea of our struggle and the dire need for change, for research, for treatments, cures and basic respect.

We can get there.  We will.  One May 12th at a time.

Want to do more?  I can help you with that!

I’d like to thank everyone in my life, online and off, who has supported me during these trying past eight years.  Especially Geoff, who I’d only been dating for a month when I became ill.  Lesser men would have run from what he had to face, but he’s stuck with me, no matter how bad things get.  And I’d also like to thank everyone for the extremely warm and receptive response you all had to my previous blog post.  Your kind words and love and support are greatly appreciated, now and always! ❤

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This is one of those things that built up slowly in my head for a while, then suddenly crystallized with numerous people and sources suddenly (unaware of each other) all started giving me the same advice.  After some thought, and a little bit of regret, I’ve decided that they are right and I need to make some changes in how I approach my art.

I need to slow down.  This is very hard for me to do; art is my obsession and I want nothing more than to be producing all that I can as often as I can.

I also need to set my focus more narrowly on DreamWorld.  There is SO MUCH that you guys have no idea about yet, and I need to get to the place where I CAN show you all that stuff!

The thing is, I have to accept that for the time being, I have very limited supplies of time, energy and money.  I’m hopeful, of course, that I will eventually start feeling better, but for now, I have to accept that this how things are right now.  My energy and time allowances have shrunk every year since I first came down with ME.  My chronic pain, daily headaches and frequent migraines don’t help anything.  Since I’m dealing with far, far fewer productive hours in the day than your average person has, I need to hoard them and make the absolute most that I can with them.  None of those minutes can be wasted.

I’m still weighing things, but I may (for now at least) not edit every shoot on my hard drive.  Don’t despair, models waiting for images, I’m not saying none of them will be edited, I just have to really pare things down and only spend the time editing images which I REALLY love.

This also means that I’ll probably be putting out fewer images per year.  This makes me sad, and is the main source of my resistance to the idea of slowing down.  It’s really hard to watch all my friends and colleagues churn out fantastic image after fantastic image and have nothing even on the radar to be shown soon.  You get used to a certain amount of being left behind by the rest of the world when you’re always sick, but it doesn’t make it sting less each new time you feel it.  I love getting to show you guy a new piece!  It’s usually the highlight of my week when I post an image.  🙂  But despite this, I know that this is the right thing for me to do now.

I’m also making some big changes with a lot of DreamWorld concepts; changes which will make the images I do create even better and more impactful, but which requires quite a lot of work on my end which and won’t produce anything I can show you guys, even as a work-in-progress sort of thing.  On one hand, I feel dangerously close to being forgotten and left behind while other artists quickly turn out magnificent pieces… but again, I know that I need to do this preliminary work.  It’s going to have a ripple effect through all of DreamWorld and the images which come from it will be better than ever!  I hope you guys will be patient and not forget about me or DreamWorld in the periods when I have nothing new to show.  🙂

Thank you all for the love and support you have shown me and my work over the years.  It really means so much more than I can say!  I am so grateful for every single person who enjoys and follows my work.  Even if I can’t put out as many images as I have in the past, I can make sure that the ones I do create are the BEST that I can do.  It may frustrate me sometimes, but the extra work I’m pouring into DreamWorld is only going to make it better, brighter, tighter, more emotional and more meaningful.  Thank you for bearing with me.

You’ll notice there isn’t a new image with this post; that’s kind of the point!

And thank you, as always, to Geoff for being an unending font of wisdom, clarity and sage advice.  🙂

A Strange New World

A Strange New World © Sarah Allegra. A self portrait, one of the first images I shot for DreamWorld. I imagine this girl has just returned to our world after years of journeying through DreamWorld only to find that not a day has passed, much like Narnia. 🙂

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It’s time for all those end-of-the-year blog posts!  I admit, I kind of like this tradition.  It’s a nice way to look back on things from a larger perspective.  And I have a brand new DreamWorld image featuring Travis Weinand for those who want to just scroll to the bottom 🙂

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

* * * * *

2015 was a… challenging year, to say the least.  And it turns out I’m starting it with a fresh, new cold and fever.  It has been the worst year I’ve had, ME-wise, so far.  It didn’t help that the year began with a crunched-for-time move of houses which literally took me several months to recover from.  Medication changes gave me months of terrible headaches and migraines, which also meant that this year was the least photographically productive year I’ve had yet also.  Between feeling terrible physically and not having nearly as much access to my art therapy as I wanted, it was a very depressing, frustrating and emotionally trying year as well.  All said, I’m happy to leave 2015 behind me and have set my intentions to have a much more fulfilling 2016.

I made a short video about my experience living with ME for last year’s May 12th (ME Awareness Day).  I generally really dislike making videos, so you can see that this was important to me 😉

There was some drama in the larger world of ME as well.  The US officially changed its name from the very belittling “Chronic Fatigue Syndrome” to the vague and incredibly widely-defined “Systemic Exertion Intolerance Disease.”  Most patients and advocates were very unhappy about this and there was a big backlash, which the powers-that-be mostly ignored, as is their usual method of dealing with us.  I’m still calling it ME, which is what most of us wanted it to be changed to.

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

Then the Senate rubbed salt in the wound by proposing they slash ME’s funding to absolutely $0 per year.  The paltry amount we currently get is the same amount given to research hayfever, despite ME being as deadly and serious as congestive heart failure and HIV/AIDS.  I extolled people to write to their representatives in protest of this; we’ll see what comes of it.

Please save this graphic and send it to the email addresses above!

Please save this graphic and send it to the email addresses above!

I got to meet fan-turned-model-turned-friend Noemi Regalado and photograph her for DreamWorld.

Apprenticeship © Sarah Allegra, model Noemi Regalado

Apprenticeship © Sarah Allegra, model Noemi Regalado

I officially started a series dealing with mental health issues; Eternal Storms.  It seeks to help break down the stigma associated with these illnesses and show sufferers how they are not alone.

A Cry From The Darkness © Sarah Allegra - a self portrait

A Cry From The Darkness © Sarah Allegra – a self portrait

One of the first models I ever worked with, Dedeker Winston, who has continued modeling for me over the five years we’ve known each other, despite me forcing her to wake up early, pose laying in cold, slimy, creeks, regularly get naked in forests and once helping me discover what stinging nettles look like when I accidentally had her pose nude in a patch of them, left for an extended time abroad.  She is having a wonderful, life-expanding time and I’m able to keep in touch and follow her journey online and through social media and texts.  I was sad to see her leave, but glad that we’d gotten in as much shooting as we did before she left, such as the Pink Mother for DreamWorld.  Speaking unselfishly though, I’m really happy she had this chance to do so much traveling and is having such an incredible time!  But I won’t be sad when I have the chance to photograph her again 🙂

The Living Sepulcher © Sarah Allegra, model - Dedeker Winston

The Living Sepulcher © Sarah Allegra, model – Dedeker Winston

My dear friend Danica gave me a priceless chance to work with an incredible, stunning, cream-colored Gypsy Vanner stallion named Booger.  As soon as I discovered she was horse-sitting him, I began planning a shoot with Katie Johnson and him together, utilizing him in every way I could think of.  I have a LOT of his shots still on my hard drive waiting to be edited, but I did at least complete one image from that magical shoot!

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson

I tried my hand at a more editorial style, which is fun, but not going to be the main thing I do any time soon.

Wall 8- model: Travis Weinand. © Sarah Allegra

Wall 8- model: Travis Weinand. © Sarah Allegra

Alabaster 1 - model Dedeker Winston. © Sarah Allegra SarahAllegra.com

Alabaster 1 – model Dedeker Winston. © Sarah Allegra
SarahAllegra.com

I was accepted into the online art gallery A Gallery, and also participated in a group show over the summer at the Creative Arts Group.

The summer show at the Creative Arts Group Gallery in Sierra Madre. This is how I want my work to be displayed, finished works alongside actual props and costumes.

The summer show at the Creative Arts Group Gallery in Sierra Madre. This is how I want my work to be displayed, finished works alongside actual props and costumes.

I FINALLY finished editing an image I started in 2013.

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra - model: Katie Johnson

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra – model: Katie Johnson

I was able to attend another screening of The Last Unicorn, which was absolutely delightful!  I dressed up as Amalthea and made a taco purse (get your own here!), which I think was the secret behind me winning the nightly costume contest.  I was also able to introduce my dear friends and ex-neighbors Donna and John to the movie for the first time (though I’d already made them fans of Peter’s writing) and they were appropriately impressed.

Taco purse available on Etsy :)

Taco purse available on Etsy 🙂

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

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

Sadly, shortly after this screening it became clear that Peter Beagle is not nearly as well as everyone had thought.  This is leading to a number of problems for him and his manager/publisher Conlan Press, which I’ll leave to them to discuss.  Regardless, it is sad to see him unwell and it makes the conversation I had with him at the screening last January all the more precious.

Speaking of illness, one of my favorite photographers, Ashley Lebedev, let us all know that she has struggled with a chronic illness for a long time.  It was beautiful to see people’s support and desire to help her gather funds for treatment.  I wish her a much better, healthier 2016 also!

The Weight of a Whistle Already Carved, @ Ashley Lebedev

I helped my husband (he helps me SO much with my shooting and projects, I more than owe him!) with a project that he’s been working on for a long time, which ended in his creating the dystopian, sci fi, 8-minute short film A Secret War.  You really should watch it!

My friend Jessi started an Etsy shop which has beautiful jewelry in it!  But it’s not simply pretty, much of it helps raise awareness about various invisible, chronic illnesses, such as ME.  As a spoonie herself, purchasing her jewelry is helping her support herself as well as getting something pretty 🙂

Jessi’s shop, The Hopeful Spoon

I discovered the wonder that is the film Unbroken, which is now one of my go-to stories to tell myself when I need some extra motivation to get through anything difficult.

Speaking of Peter S Beagle, Amazon released an exclusive Kindle offering of 13 of his most beloved titles for the first time in e-editions… and 6 of those titles were released with my images on their covers!  To say I was elated would be a huge understatement.  There may have been joyful tears when I first saw them in my browser window.  🙂

Go buy one of these titles! You'll thank me when you discover how magical Peter's writing is :)

Go buy one of these titles! You’ll thank me when you discover how magical Peter’s writing is 🙂

And, as always, I put out a calendar with a year’s worth of beautiful images to brighten up your walls every day!  Red Bubble does an excellent job at making beautiful, high-quality items and its calendars don’t disappoint.  Feel free to grab your own; I can promise that you’ll love it!

Sarah Allegra 2016 Calendar

Sarah Allegra 2016 Calendar

* * * * *

Since 2015 was so heavy with ME, migraines, frequent colds, injuries, deep ruts of depression and stress in ways I have seldom experienced it, an incredibly huge percentage of my physical energy was devoted to simply existing and not giving up.  It really underscored how precious my time and energy is and how I need to devote it to things that are worthwhile.  No, not just worthwhile, but things which I cannot live life without.  The things are dearest and most deeply important to me.

This has given me a lot to think about as I ponder how I’ll change my management of time and energy in 2016.  I will try and devote myself to not just ideas I like, but the ideas which I think are the best.  The most important.  I simply don’t have time to pursue anything less.  This is helping to bring my artistic goals into much sharper focus.  The dross will be burned away; the leftover gold burnished until it gleams.

I’m also making an effort to set aside more time for self-care activities, like short walks with Calantha or yoga when my body allows, meditation and reading for pleasure.  Few things enrich my life (both my actual and imaginary worlds) as much as reading does and I need to make sure I don’t let that slip away from me by being “too busy” for it.

But of course the most important things are the relationships I have with friends and loved ones.  Those will always be tended to, nurtured and cultivated as best as I can manage!  I am blessed to have many, wonderful friends in my life, online and off, who get me, support me and my art and are incredibly gracious about my health problem.  That’s something I should never forget to be grateful for or take for granted.

* * * * *

Now, as promised, here is my new DreamWorld image!

When I first met model and friend Travis Weinand, I was struck by how truly ethereal he looks.  Not simply in pictures or when in costume, he always looks like he stepped out of a comic book, collection of mythology or possibly Middle Earth.  With a quick stop-off for a dose of Viking and tattoos.  Anyway, I immediately wanted him to have wings.  I wasn’t sure how, but I knew he’d get them before we were done working together.

So at our next shoot, I asked him to sit in front of a dark backdrop and pose angelically.  He made looking strong, gentle, loving and bad-ass all at the same time look effortless.  Editing did take a while since I painted the wings myself and had to figure out exactly how I wanted these “wings made out of light” to look, but it was very worth the effort!

This character lives in DreamWorld, as you would probably guess, a centurion of sorts to DreamWorld’s Queen (whom you have not met yet, but hopefully you will soon).  He leads the Queen’s army, the Glorious Guard, but he’s more than just a devoted servant.  Part bodyguard, part lieutenant, part enforcer, part adviser, he is a dazzling embodiment of good.

The title of this image comes from one of my favorite poems of George Gordon Lord Byron, All For Love.  In it, Byron discusses love being the greatest glory one can receive, far greater than wreaths, trophies or other symbols of glory:

O Fame! if I e’er took delight in thy praises,
‘Twas less for the sake of thy high-sounding phrases,
Than to see the bright eyes of the dear one discover
She thought that I was not unworthy to love her.
 
There chiefly I sought thee, there only I found thee;
Her glance was the best of the rays that surround thee;
When it sparkled o’er aught that was bright in my story,
I knew it was love, and I felt it was glory.

That last line kept repeating and repeating through my head as I edited… thinking about the love he has for his Queen, those he protects and his glorious vestige, so I finally gave in and just used it as the title.

 

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, model: Travis Weinand. © Sarah Allegra

 

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

 

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

That’s it!  Everyone have a happy and meaningful 2016!  🙂

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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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On February 10th, the Institute of Medicine released the findings of a report it had been working on for approximately a year and spent over a million dollars on.  Their task: come up with new diagnostic guidelines for patients with myalgic encephalomyalitis/Chronic Fatigue Syndrome and decide on a new, single name to replace both ME and CFS, which are generally used interchangeably for the same disease.*  Considering that ME/CFS gets only a pitiful three million dollars in government funding per year (which may sound like a lot, but consider that male pattern baldness, which is not life-threatening, gets $16 million, and you realize how very, very little that is), this is a cost we cannot afford.

Silenced © Sarah Allegra, model Travis Weinand Read on for the full image!

Silenced © Sarah Allegra, model Travis Weinand
Read on for the full image!

The IOM’s findings are so upsetting to me, I can hardly organize my thoughts into rational sentences.  But while I may want to sob and punch a hole through the wall (which, let’s face it, I’m probably not strong enough to do anymore), I need to speak up about these incredibly vital points and I need to do so in a way that other people won’t dismiss me as merely a “hysterical woman.”

I’m going to be generous here for a minute; here are the few good things gleaned from the IOM’s 304-page report.

  • They recommend retiring the trivializing name “Chronic Fatigue Syndrome.”  I fully agree with that.  I could not agree with that more.
  • They admit that far more research needs to be done to understand ME/CFS.
  • They admit that ME/CFS is a real and physical disease.
  • They recommend that the Department of Health and Human Services should develop new, more accurate ways of diagnosing ME/CFS.

For about half a second, I was happy when I heard the IOM recommended changing the name of “Chronic Fatigue Syndrome” to what they’ve proposed: “Systemic Exertion Intolerance Disease.”  Mostly I was happy because I saw the word “disease” instead of “syndrome.”  And I will, begrudgingly, admit that their SEID is ever-so-slightly better than CFS.  If CFS is a kick in the balls, SEID is a kidney punch.  Neither is good, but I suppose if i were given the choice between the two (and I were male) I might choose the kidney punch.

Inside Looking Out © Sarah Allegra - model: Katie Johnson

Inside Looking Out © Sarah Allegra – model: Katie Johnson

Here’s what’s wrong with SEID.

The IOM complained that the name “Chronic Fatigue Syndrome” is demeaning and only focuses on one symptom.  Those are both true.  They also decided that “myalgic encephalomyalitis” was unsuitable because it also only focused on one symptom.  That is not true.  “Myalgic encephalomyalitis” literally means “muscle pain and inflammation of the brain.”  You have two symptoms being named, both of which are hallmarks of the disease and which have tons and tons of scientific proof backing them up, as well as patients’ own experiences aligning with them.  Additionally, more documentation can be found in the UK documentary Voices From The Shadows where multiple autopsies of patients who died from ME/CFS all showed inflammation in the same area of their brains.  Despite mountains of evidence to the contrary, the IOM decided that while nearly every person diagnosed with ME/CFS complains of chronic pain, that was not a general symptom for ME/CFS patients, and thus should be excluded from the name.

I know a lot of people with ME/CFS.  We are a close community as this disease ravages us in ways only other sufferers can truly understand.  We form deep online friendships since we are so often unable to interact with people in meaningful ways in the real world.  We rely on each other for advice about treatments and medications, as we almost always know more about our disease than our doctors do.  None of my doctors had ever even heard the name “myalgic encephalomyelitis” until I said it to them.  We are our own biggest support system.  And I do not know a single person with ME/CFS who does not experience chronic pain.  Personally, I have not had a pain-free day in over seven years.  To have healthy outsiders negate the 2,555+ days of pain I’ve experienced and say it’s not an important symptom is beyond a slap in the face.

A Fading Girl © Sarah Allegra - model: Brooke Shaden

A Fading Girl © Sarah Allegra – model: Brooke Shaden

But even those slights aside, “Systemic Exertion Intolerance Disease” fails their own test by simply naming only one of our other common symptoms; exertion intolerance.

Exertion intolerance is a very real thing for ME/CFS people.  And it doesn’t have to be physical exertion; mental or emotional exertions can leave us just as sick for days, or weeks, sometimes months… or forever, as physical ones.  For years and years, doctors have been advising us to exercise our disease away.  And for many illnesses, exercise does help.  But with ME/CFS, exercise can be absolutely deadly.  Push yourself too hard and you can make yourself house-bound or bed-bound… sometimes for the rest of your life.

We walk a knife’s edge every day, trying to judge what we can and cannot do.  It’s generally considered a fairly good idea within the ME/CFS community to try and remain as active as you can without overdoing it and making yourself worse.  It’s like playing a very stupid game of blackjack with your energy each day.  You don’t want to lose any ability to be active that you do have, but even hitting 21.01 could mean a week of being stuck in bed.  It’s a serious and deadly game we are forced to play every single day.

So yes, exertion intolerance is a very real and dire threat, but even given that, we’re still left with a name which merely cites one of our symptoms again.  And as I said, SEID is ever-so-slightly better than CFS simply because of trading out the word “symptom” with “disease.”  Laymen hear “syndrome” and it doesn’t sound serious; replace it with “disease” and their view shifts.  I have serious doubts that busy doctors, who have no time to read a 304-page document, will hear anything but “exercise avoidance” in place of “exertion intolerance.”  After all, exercise is a cure-all!  There’s nothing it doesn’t help!  That’s the mantra they’ve been taught again and again and it will take very dramatic events to undo those decades of conditioning.

Vanity's Muder © Sarah Allegra - a self portrait after I started experiencing ME-related hair loss

Vanity’s Muder © Sarah Allegra – a self portrait I created after starting to experience ME-related hair loss

Almost every ME/CFS sufferer I know has had at least one doctor who refused to believe there was anything physically wrong with them.  I had one of those too.  Mine decided I was simply depressed and anxious.  In a way, she was right; I was getting very depressed because I felt terrible every single day and nothing was helping it, and I was becoming increasingly anxious about my appointments with her because I was sensing she didn’t believe me.  I have experienced clinical depression.  There was one solid month in a very dark period of my life where I had to rationalize not killing myself every single day.  I know what depression looks and feels like.  It is a completely different beast than ME/CFS.

It’s like saying sharks and bears are the same threat.  Well, no, one lives in the water and generally attacks you if he mistakes you for a seal; the other lives in the woods and might attack you if she thinks you’re a threat to her cubs…  You get the picture.  Both can kill you, but trying to issue a blanket statement that they are both the same threat, coming from the same place, using the same methods to avoid them would be absurd.

The Blue Ribbon © Sarah Allegra - Model: Katie Johnson

The Blue Ribbon © Sarah Allegra – Model: Katie Johnson

ME/CFS is not “just” depression.  I put “just” in quotes because I know how serious depression can be and I never want to be dismissive of it.  It kills too.  But they are completely separate entities.  There is a tendency for people who have ME/CFS to become depressed because they have ME/CFS, but that does not mean they are one and the same.  Almost anyone with a chronic, incurable illness is going to get depressed.  You never hear people accusing cancer patients that the cancer is all in their heads; they’re just depressed and if they went for a nice jog, everything would be fine!

And lest you think I am fear-mongering and making ME/CFS out to be more than it is, let me remind you of a quote by Dr. Nancy G. Klimas, who specializes in treating both HIV/AIDS patients along with ME/CFS patients.  In 2009, she was quoted with the following: “…But I hope you are not saying that C.F.S patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.  I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

The overwhelming majority of ME/CFS patients would have liked to have had our name officially changed to “myalgic encephalomyelitis.”  We made our preferences known loudly during the entire time the IOM worked.  ME is, after all, what most of the modern world calls it.  It was only because of one insidious man that the United States switched to “Chronic Fatigue Syndrome.”  And why was such a name invented?  To create a legal loophole where insurance companies would be able to deny sufferers coverage.  The schism between the United State’s naming of the disease and the rest of the world began with greed from insurance companies.  These are your US tax dollars at work.

And what’s even worse is that there is speculation that the IOM is intentionally confusing the issues around ME/CFS; making the definition unusably broad, ignoring patients’ wants and needs.  Once again, making sure we’re worse off than we were before they came along.

Breakable © Sarah Allegra - a self portrait

Breakable © Sarah Allegra – a self portrait

The second of the IOM’s tasks, coming up with a diagnostic criteria for ME/CFS, was also unnecessary.  Two excellent, specific and scientific definitions already exist (and are used by most of the modern world as well.)  It was loudly advocated by ME/CFS patients and specialists alike that the IOM adopt these guidelines.  In fact, 50 of the world’s leading ME/CFS experts sent letters asking that the IOM’s contract be canceled along with countless letters written and petitions signed by patients.

That brings up another salient point… who are these people chosen by the IOM for this heavy and delicate task, ripe with repercussions which will ripple through the decades?  They are 15 people, only seven of whom specialize in ME/CFS in any way.  Some are not even doctors.  How is this at all ok?  How was it allowed that a group of people who don’t have anything to do with the disease at hand would be asked to redefine it?

Let’s give them the benefit of doubt for a moment and assume they’ll really try and do a good job.  Who knows.  What did they come up with?  They decided that to be diagnosed with ME/CFS, you need only three of the following core symptoms:

  1. A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue – which is often profound – of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest.
  2. The worsening of patients’ symptoms after any type of exertion – such as physical, cognitive, or emotional stress – known as post-exertional malaise.
  3. Unrefreshing sleep.

And at least one of the two symptoms is also required:

  1. Cognitive impairment.
  2. The inability to remain upright with symptoms that improve when lying down – known as orthostatic intolerance.

Do you know how many diseases and conditions fall under this umbrella?  It’s so broad, it’s utterly useless.  You wouldn’t even need to have a physical ailment to qualify for ME/CFS.  This is a big deal.  If this new standard is adopted, this is the criteria that will be used to find patients to test new drugs and treatments.  Can you imagine how murky and confusing the results will be if your patients could potentially have almost any disease?  Answers will never be found under these guidelines.

In Between Awake and Sleep © Sarah Allegra - a self portrait

In Between Awake and Sleep © Sarah Allegra – a self portrait

As people online have pointed out, SEID backwards spells DIES.  And it’s hard to feel like that isn’t exactly what the IOM, HHS and CDC want us to do.  We are an embarrassment to them because they don’t know what our disease is, what causes it or how to fix it… and, of course, a great deal of that confusion was created intentionally; a fact they’re desperate for us to forget.  They would rather sweep us under the rug, ignore us, talk over us.  And sadly, that is very easy for them to do.  With so many patients house- and bed-bound, it’s extremely difficult to show our numbers, organize protests, or object to our treatment in any meaningful ways.

But this is what they haven’t counted on.

When you are backed into a corner by illness, you can either crumple under it or develop a steel core in the deepest part of your soul to bear it.  Some days you may flip back and forth between the two, but ultimately, your will strengthens.  The stakes are personal to us and they are very high.  Though it might take the help of our caretakers or cost us a week of energy or send us back to bed for months, we will not be silenced again.  Shifty, snakey policy-makers may have the energy and money we don’t, but they do not have this core to draw on.

We will fight.  And we will win.

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

Are you pissed off?  Good.  We need you to be pissed off.  We need a public outcry so loud that it simply can’t be ignored.  And we need the healthy, compassionate people of the world to join us in demanding change.

Here are some things you can do:

Pass around the image above, Silenced, on your social media platforms.  Linking to this post would be helpful!  I am giving you permission to use the Silenced image to help get our message across!  Put it on Facebook, Twitter, Instagram, Tumblr, Pinterest… wherever you hangout online!  The more people who see it and become aware of the problem, the better!

Tweet to @TheIOM, @HHSgov and @CDCgov letting them know your displeasure in the proposed name change.  We DO have the power to stop this from becoming our reality!  Please use the hashtag #MENotSEID.  Not sure what to say?  Here are a couple examples you are free to use!

.  : ME/CFS research will be useless with the name SEID.

.  : SEID is still only naming a single symptom.

.  : ME/CFS patients will not be helped by SEID, it will only hurt us further.

.  : MECFS patients reject SEID and demand the name ME!

.  : Why are we spending a million dollars redefining and renaming what doesn’t need it?

.  : ME/CFS patients WILL NOT be bullied into silence over the proposed name SEID.

Additionally, you can:

Submit answers to a survey about what you think of the IOM’s proposed name change.

Sign this petition to stop the HHS-IOM contract and accept the CCC [Canadian Consensus Criteria] definition of M.E.

Or this petition!

Every voice counts!

 

Would you also like to support me in my quest to continue making art in spite of ME’s constant presence in my life?  How lovely of you!  🙂  I have added the new Silenced image to my RedBubble shop as well as my Etsy store; you can get it (or most other images) as museum-quality prints, tshirt, stickers, covers for your phones and i-Devices, travel mugs, blank greeting cards, even pillows and tote bags!  Every purchase goes toward helping me continue to produce new art as well as spend the countless hours necessary to delve into issues like this post.  And every single purchase is hugely appreciated!

We Rise Again © Sarah Allegra - a self portrait

We Rise Again © Sarah Allegra – a self portrait

Images are from my Enchanted Sleep series, which portrays living with ME/CFS/fibro.**

Istagrammers!  Here is a square version of the image, already Instagram-friendly 🙂

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

*When you dig into it, no, ME and CFS are not describing the same disease, mainly because the current US diagnostic guidelines for CFS are so sloppy and wide-open.  Further information on the subject can be found here, along with countless other places online.  Since there is a lot to talk about in this post as is, for brevity’s sake, I’m using the term people are most familiar with, ME/CFS, though the definition I have in mind is the CCC and ICC definition of ME.

**Fibromyalgia is, for the most part, also used interchangeably with ME/CFS in the US.  This is not entirely accurate, much like ME and CFS are not really the same thing, but for the sake this post, when I talk about ME or CFS, I am also talking about fibro.

 

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