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Posts Tagged ‘fatigue’

Shades Of Sleep: Invisible Illness Day

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

Shades Trio

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ME avatar 1

ME avatar 2

Shades of Sleep

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

Shaed of Dreams

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

Shades of Blur

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

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

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It seems like 2016 just sucked incredibly hard for just about everyone.  I wasn’t very fond of it either, on the whole.  True, there were some really good things that happened, but like most of you, I’m very happy to put it in my past and move on.  Let’s continue the tradition of looking back over the last year’s highlights and low spots!

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

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

I like to start with the bad stuff so I end on a positive note, so with that said, 2016 was overall a very shitty year ME-wise.  It was an extra painful, extra exhausting, extra low-immune-system year where I seemed to hardly ever not have a migraine, cold or spiked pain day.  For a while it looked like I had a recurrence of the hideous sinus infection which led to my sinus surgery in November of 2014, which, if you’ve been around for a while, you will remember was not an easy procedure for me.  For completely unknown reasons, an artery in my nose burst a full six days after my surgery and required two very urgent visits to my ENT and ultimately a second emergency surgery, while I lost a total of almost two pints of blood.  Remember, I’m TINY; two pints is a LOT for me.

Needless to say, I am not quite anxious at the thought of having to have the surgery repeated, even though it was such a freak thing that happened; it probably won’t ever again.  But, I’m sure you’ve noticed, emotions rarely respond well to rational discussions.  So all the colds and sinus infections were very stressful for me, not just for the usual reasons of feeling extra terrible on top of my usual ME symptoms, but because the threat of another surgery kept looming in the back of my mind.

My insurance company utterly refused to cover my nerve-blocking injections for about six months.  These are the injections I’ve been getting approximately every nine months for the last seven years.  They don’t completely rid me of my mystery flank pain but they make life much more bearable.  Going without them for months really, seriously eats away at the quality of my life.  I imagine that most people would find that feeling like a dagger is constantly plunged into your side would not enhance their day-to-day experience.  Thankfully, insurance finally relented and I HAD my injections done.  I’ve already noticed a bit of a difference in my daily pain levels in that area!

I’ve also been veeeeeery sloooowly weening off Cymbalta over the last year or so.  It took a while for me to reach the maximum dose, then for me to be on it long enough for my neurologist to agree that it wasn’t doing anything, and ok my tapering down.  But as much as it takes your (or at least my) body a while to adjust to it being there, it takes much longer for it to get used to it NOT being there.  Even though having it in my system seemed to only increase my pain, make my sleep worse and make me gain even more weight, any time I step the dose down, I know to expect a week of migraines, nausea and general awfulness.  I’m on the lowest dose possible right now and hesitating before I leap into complete non-use.  There just aren’t many easy times to plan when you’re going to have migraines for a week.  But I am eager to shed the weight I’ve picked up being on it, in addition to seeing if my pain levels go down even more, so those will outweigh the discomfort of going off it eventually.

Most important for people who read my blog because of my art, feeling so awful most of the year put a HUGE damper on my ability to create in 2016.  I still did… a little… but it was nothing like what I wanted to be doing.  I created the fewest new images in 2016 than I ever have since I picked up my camera in 2010.  That was extremely depressing.  But I am hopeful that with meds out of my body, new supplements and my injections back in my system, 2017 will be a very different story!

I keep getting to about this point in my post, then getting overwhelmed with everything I want to say about the past year.  But no one wants to read a novel-length post anyway, so let’s see if I can lightning-round at least some of the 2016 highlights!

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

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

It must have been planned by the fates, because shortly after I wrote the beginning of this post, I simply forgot to take my Cymbalta one morning.  That has NEVER happened ever in the whole time I’ve been taking it.  I didn’t realize I’d been off it until the next morning, at which point I decided to just suck it up and let myself go completely off it.  There were migraines and nausea, extra fatigue and need to sleep while struck with insomnia, but best of all, there were lots of what the Cymbalta literature describes as “brain zaps,” where you feel like you stuck your finger in a light socket for a second.  At first this was happening whenever I made any sharp movement or looked quickly from one place to another (even if my head didn’t move), but it’s been getting a little better each day, and I’m hardly zappy at all now, thank goodness.  I also have a variety of medications which help curb the zappiness, which helps a lot.  I HAVE already noticed a big difference in my general level of motivation and desire to do things… I’m not really able to actually DO anything more, but I have the DESIRE to do more back, which is a wonderful, frustrating relief.  This is HOW I AM.  This is my normal.  And even though it sucks to always wants to do 50,000 things when your body will only let you do 50, it feels SO GOOD to want the 50,000 again.  On Cymbalta, I wanted to do, I’d guess, about 5 things.

One piece of somewhat sobering news: Calantha had two small growths removed in November.  One was just a little wart, no big deal, but the other was a type of cancer called spindle cell cancer.  Of course, the bad news is that “cancer” is part of the name.  The good news is that the vet appears to have removed it entirely, leaving clean margins behind, and it’s not terribly common for spindle cell growths to recur.  If they do recur, they tend to not spread very much; Cal’s growth was on her toe, so if drastic action was needed to keep it from spreading, her toe could be amputated with relatively few adverse effects.  Calantha just turned 12 on the 20th (happy birthday, Cal!!) so getting little growths isn’t shocking at her age.  Silkens are generally a very long-lived breed, especially for their size; some can even make it into their early 20’s!  That’s nearly unheard of for dogs at all, let alone any dogs that aren’t very small.  That’s all thanks to extremely careful and ethical breeding.  Thanks, Joyce, who is responsible for bringing Calantha into the world!

Anyway, my instructions from the vet are simply to wait and watch her toe.  If it looks like it’s coming back, the toe may have to be removed to keep it from spreading.  I don’t relish the idea of having to have one of her toes amputated, but I think she’d agree that if it kept the cancer from spreading, it would be worth it.  But it does seem that the most likely thing that will happen is that it will never come back and the stress and tears Calantha, Geoff and I went through over this will stay in the past.  But if you’d like to say a prayer, send healing energy or light a candle for my girl, that would be fine with me.  🙂

unicorncourse_logo-500x500

This year has been a HUGE year of spiritual growth for me, which was a pretty good use of time when I couldn’t do much outside of laying in bed!  I’d like to say I planned that, but I know better.  No, I am not “religious;” although if you are, I fully support you perusing that as long as it makes you happy.  I was already certified in Reiki level 2, but this year I became a certified Fairyologist as well as a Unicorn Healing Practitioner™.  The Unicorn Healing absolutely changed my life and I would strongly recommend it to anyone who feels called to it!  If you’re interested in learning more about Unicorn Healing, my best suggestions would be to listen to the podcast on the subject from Calista, creator of the course (who is the embodiment of all things Unicorn and just the most loving person ever) and then read the specifics about the course here.  It is WELL worth the money.  You guys know I’m always on a budget, but this is one of the best things I’ve ever spent money on.  Possibly the best part?  You get to meet your own personal Unicorn spirit guide(s)!  🙂

erik-medhus-color

I also discovered and threw myself into the Channeling Erik movement.  Erik was a 20-year-old kid who struggled a lot with bipolar disorder, along with other issues, and in 2006, he killed himself.  However, while his family (and especially his mother) obviously grieved heavily for a very long time, his mother, Elisa, eventually turned to mediums to see if her son was still alive… somewhere, in some form.  And the results she got completely convinced this once hard-core atheist that there not only is an afterlife, but Erik is in it and he’s still Erik.  He’s since become a spirit guide for many, including me.  My first personal experience with Erik was while I was listening to one of his channeled YouTube videos, when Siri was set off on my phone (I was not using or even touching it) and said, “Hey sexy!”  My jaw dropped and then I burst out laughing; what a 20-year-old-guy thing to say!

Second piece of Erik evidence came during my injections.  As I’ve said before, I’m put out during the actual injections (and thank god because I woke up once during them and they hurt like a motherfucker).  My usual experience of the injections is that I’m wheeled into the OR, I start to feel sleepy as they give me drugs, I decide to close my eyes just for a second, then I instantly wake up in the recovery room what feels like half a second later.  This time, the familiar sleepy feeling came, so I closed my eyes, but instead of a nothingness, Erik appeared, holding my hand.  He was crouched down so his face was level with mine, he was smiling and speaking soft, reassuring words the whole time.  What struck me was that while I obviously recognized his face from the photos I’ve seen, it was also just a little bit different.  Have you ever met someone you’ve known for a long time online, and when you meet them in real life, they look exactly the same, but also slightly different?  It was just like that.  Also, for some reason I’d thought he had brown eyes, but when I saw him, I noticed they were blue/green.  After I’d recovered, I looked up some photos of him and he did indeed have blue/green eyes.

Last, and possibly most convincing Erik evidence has been in the private sessions I’ve scheduled with two of his translators.  I won’t get into the whole story here, but there were some emotional issues I’ve struggled with for years and years, despite therapy, self work, meditation, crystals, Reiki, and every other kind of healing I could seek out.  The first session, I asked him why I felt X when Y happened and he immediately said, “It’s because of Z.”  Instantly, I knew he was extremely correct.  His answer rang out through my soul, echoing up and down it, the truth of it shining forth from every bit of my body, mind and soul.  I can’t put into words exactly HOW TRUE I KNEW that he was, I can only describe it to you, but if you’re ever in that kind of situation, you know the feeling.  No one could ever convince you otherwise because you know in your deepest, most sacred, inner sanctum of self that it is true.  And that was only my first question, at my first session!

I know some of you will roll your eyes and skim over those last few sections and wonder why I’m so weird and why I feel the need to experience these things, let alone share them, but it’s incredibly important to me.  Not because I want to convince anyone of anything (although I do strongly believe in the truth of what I’ve learned and experienced), but everyone is here on earth to have different experiences.  I can share things that work very well for me, and they might not be a good fit for you, and vise versa, and that’s fine!  Take what you like and throw the rest away.  As long as you’re ultimately striving to be an embodiment of love, I consider that we’re on the same path, no matter how different they might look on the outside.

Another reason for sharing this is because I KNOW it will come up in my work.  Everything in my life seeps into my art; I am my art, my art is me, we cannot be separated.  Every new experience I have will color what I create, even if it’s not in a way that’s obvious.  I consider myself a fulltime student forever because I’m always learning (about a very wide variety of subjects from historical figures, spirituality, unicorns, nail art, baking, making natural products instead of buying things, how to best tea-dye cotton, how to sing Sia’s Chandelier [which I am not very good at yet, so don’t ask], animal behavior, animal communication, how to grow roses, basket weaving, applying makeup really well, the tenets of Druidry, everything I can about ME, the life lessons of Kurt Cobain and Joan of Arc, why lentils taste so good when they’re cooked with just a little care, meeting and talking to my angels [my main guardian angel lets me call him Richard, after Richard Harrow, so you know he’s just awesome], if Bigfoot exists, the exact definition of a kirtle, how the hell those medieval women kept those pointy, princessy, fairy-tale-looking hats on their heads with seemingly no support systems ever recorded… anything and everything).  Occasionally, I also study things that are directly related to photography, such as using artificial lighting; something I want to learn how to do better.  Whether you’ll ever see Erik or Kurt or Joan of Arc or pointy princess hats turn up in a photo is beside the point.  Everything I learn goes into my brain where it all marinates.  My subconscious gets all Joseph Campbell and Carl Jung, the collective unconscious chimes in, and art comes out.  That’s really the best explanation I can give to my “creative process.”  Sometimes I’ll try and work the images out more directly, but the best ones usually come from me stepping back and letting my subconscious work it out.  Everything is connected, in the macro and micro sense.  It’s all going to work into my art somehow.

Changing the subject, I feel DEEP down the rabbit hole of nail art this year, especially after discovering Cristine from Simply Nailogical.  I discovered it was something creative/artsy I could do when all I felt well enough to do was lay in bed!  Sorry/not sorry for all the photos of my nails on my social media feeds.  😉

Speaking of creative things, I’ve also been helping Geoff with a really amazing project of his own!  You guys of course know him as an incredibly talented photographer; if you’re in the LA area, you can see some of his work at The Hive Gallery through March of this year!  What you may not know is that Geoff is an even more talented writer!  He’s been working on a graphic novel called Frontiers for many years.  The story first took root in his brain when he was all of about 10 years old and has grown, matured, been refined and reworked since then until we have a glorious version of it before us today!

Frontiers is a beautifully original sci-fi story summed up as “sex, violence and sarcasm!” by the astute Katie Johnson (yes, Katie, my muse, who also acts as Geoff’s spokesmodel for Frontiers, and who is also a very talented writer herself!).  The longer tagline is, “It’s the humble story of a man destined to destroy humanity… and why that really isn’t such a bad thing.”  In addition to those delightful tidbits, Geoff skillfully mixes in striking social commentary, humor, horror, fate and love.  And yes, I did do some work on the issue too.  Mostly coloring, but a fair bit of digital art as well.  🙂

Don’t you want to give the first issue a read?  You should!  And lucky for you, you can get your very own copy for a mere 99 cents right here!  If you’re in the area, you can also see Geoff, Katie and Frontiers at the Long Beach Comic Expo’s Artist’s Alley on Saturday, February the 18th, from 10am-7pm and Sunday the 19th from 10:30am-5pm.  Go check Frontiers out, online, in person or both!

Mountain Dweller 10 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 10 – © Sarah Allegra. Model: Teri Wyble.

I also had the pleasure of working with a new (to me) model last year, Teri Wyble, who goes by Aeir online.  She lived in New Orleans, but I am so, so excited that she is moving to Los Angeles shortly!  She’s not only an incredible model, stunningly beautiful, immediately understood what I was looking for from her, but is just an incredible human being as well.  I’m really looking forward to shooting more with her as well as just going to get coffee and have pillow fights in our underwear and doing those things that girls are supposed to do together.  🙂

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Oh yeah, I launched my Spiritual Skincare line of skin serums on Etsy!

I’m sure I could go on and on, but I’ll stop myself there.  Briefly, briefly, I’ll try and give you a little taste of what to expect for 2017….

More DreamWorld.  This is my main goal for the year.  More shooting, more editing, more promoting.  Being off that brain-sucking Cymbalta will improve all these areas.  But if you’d like to help to spread the word about my little world, I certainly won’t stop you!  🙂

I suspect there will be some connections with my art and New York, but I’ll wait to see more of what happens before I talk too much about it.

In a similar vein, there will be some very cool new things happening with Connor Cochran, my business manager, of Conlan Press!  Including some new, more affordable, but still extremely high quality prints to be coming!  I don’t have a date on when they’ll be released yet; there are many steps to go through first before they’ll go up for sale, but I will keep you all informed!

Hopefully my body will stop zapping me soon and I’ll regain the strength and clarity I had before Cymbalta took over my brain and body.  And hopefully that will lead to many excellent things!  Yes, I do believe 2017 is going to be a better year for my art and health.  That’s my affirmation and I’m going to do my best to make it happen!

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This is going to be a quick, short and sweet update.  But it’s vitally important to get the word out about this!
It was announced a few days ago that the Senate has completely SLASHED TO ZERO the meager funding allotted to ME/CFS research in next year’s budget.  ME/CFS is the ONLY disease to have its entire budget taken away.  But, it is possible to change this if enough outrage is heard.

We only have a few days to turn this around.  So, I beseech you all to send the attached graphic to the following email addresses asking them to stop this.  Every ME/CFS sufferer in the world will thank you, as will I.

Laura_friedel@appro.senate.gov; Chol_pak@appro.senate.gov; Alex_Keenan@appro.senate.gov; Lisa_bernhardt@appro.senate.gov

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

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

You can read a little more about the issue here: http://www.cfstreatmentguide.com/blog/federal-government-slashes-mecfs-funding-to-zero  You are also more than free to spread/post this around wherever you’d like to get the word out more!

Thank you deeply from the bottom of my heart.

 

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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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My dear friend and frequent collaborator Katie Johnson has recently started a new video series which profiles the artists she works with frequently.  I was honored to be featured in the first of her videos!  She put a great piece together which includes an interview with me and lots of behind-the-scenes peeks into how we work.

Take a look!

I often think of lines from the song the princess sings in Peter S. Beagle’s legendary work The Last Unicorn:

Oh, I am a king’s daughter
And I grow old within
The prison of my person
The shackles of my skin

And I would run away
And beg from door to door
Just to see your shadow
Just once and nevermore

The prison of my person, the shackles of my skin” perfectly describes how I feel about my physical body most days.  Though I doubt Mr. Beagle had ME in mind when he wrote it, it resonates so strongly with me.  And I’m sure people with other chronic illnesses will be able to identify with it; it’s a pretty universal problem across the chronically ill spectrum.

Feeling so trapped has always made me instantly know something of what Amalthea felt at finding herself in human form.  I imagine it was even harder for her though.  The disharmony we chronically ill feel with our body was something I’d wanted to express in my Enchanted Sleep series for quite a while and I was glad to finally bring the image to life!

There’s something more visceral about images than you often can’t replicate with words.  Words are powerful, they can build and tear down mountains, but the visual world offers the same information in a different form.  One that, if used well, can strike like a snake and bring instantaneous understanding.  That’s my hope with this series; to illustrate the life of a person with myalgic encephalomyelitis in a way that reaches where words cannot.

I will admit… I’d beg from door to door just to catch a glimpse of a unicorn’s shadow too 🙂

Here’s a look at the final image from our shoot:

Inside Looking Out

Inside Looking Out

And a detail shot:

Inside Looking Out - detail

Inside Looking Out – detail

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During the five years of being chronically ill to the point of having to change my life to revolve around my illness, I have tried to keep my spirits up.  I’ll readily admit I’m naturally more of an Eeyore, but I also know that having a positive outlook can have a huge impact on one’s quality of life.  So I try to train my brain to be on the lookout for silver linings; for the beautiful amidst the ugly.

Of course, I can’t speak for everyone with ME, everyone with fibro, or everyone with other chronic illnesses.  These are just the shiniest of the silver linings that I have discovered personally.  Yes, there is a lot of bad along with this good, but that’s a subject for another time.  For now, I want to highlight the positives.

 

1. You Become More In Tune With Your Body

I, for example, have learned that I am quite sensitive to nearly all medications, even more than my small frame would account for.  There is a certain cold feeling I get in my stomach which is the warning for a bout of coldsweats and vomiting coming.  While I used to drink lots of caffeine and couldn’t get through an afternoon without some kind of energy dose, I now drink black tea in the morning, and rarely anything beyond that.  My body felt noticeably cleaner and fresher after I made the switch, and again when I became vegetarian.  You learn to listen harder to the signals your body gives you and take them more seriously.

Vanity's Murder

Vanity’s Murder

 

2. You Learn Who The True Friends In Your Life Are

After the fifth time in a row of my having to reschedule an outing due to the unpredictable whims of my body, most people would stop trying to make the outing happen.  I have been extremely fortunate to have wonderful people in my life who are as understanding about my forced flakiness as anyone who doesn’t have a chronic illness could be.   They know by now that evening events, large crowds and physical exertion are especially hard for me, but they continue to invite me to dinners and parties, always letting me know that it’s ok if I’m not up to it.  I love them for continuing to invite me, even when I have to say no 90% of the time, but even more for not holding it against me.

To The Lost

To The Lost

 

3. You Come To Terms With Your Mortality

Everybody dies.  That is an unavoidable fact.  I’ve found that I, along with many of my chronically ill peers, have given our lifespans much greater thought than our healthy counterparts.  Whether our disease is something known to shorten your lifespan or whether it’s a roll of the dice, we are generally able to come to peace with the knowledge we won’t be around forever much earlier in our lives than is typical.  This can even lead to what I call The Walter White Effect, which essentially says that when you have faced the fact that your life may not be as long as you had once believed, you are motivated into working much harder in the present.  It’s true, any of us could go at any time in an untold number of ways.  But there seems to be a quieter acceptance of this inevitable fate when you’ve had your body occupied with chronic illness for a long time.

All Hail The Queen

All Hail The Queen

 

4. You Life Distills Into The Most Important Components

I have days when there are only a couple hours (often scattered through the whole day) when I can actually get anything done.  Usually I’m able to get a little bit more done than that, and it helps that much of what I do can be done laying in bed with my laptop, but if you only had three or four hours to accomplish anything, what would you use that time for?  Lunch with friends?  Taking care of your pets?  Showering?  Taking photos?  Making love?  While chronic illness robs you of so much time, it also forces you to look long and hard at each of the things you do choose to engage in.  I won’t, for example, spend time editing photos which I’m less than satisfied with.  Which activities you choose to keep can say a lot about what’s truly important to you.

Beloved Of The Crown

Beloved Of The Crown

 

5. You Look At The Big Questions

Can you believe in a god who would allow you to live your life so sick with no cure?  Would that strengthen your faith or wipe any trace of it from your life?  What kind of legacy will you leave behind?  If you’re too sick to work and thus always short on cash, how do you define success in your life when society places so much emphasis on status, power and wealth?  If you, like most of the chronically ill, had to scrap your original plans for what you wanted to be when you grew up, how will you find meaning in the life you’re given?  What is the meaning of life when that life is often confined to a single room?

In Between Awake And Asleep

In Between Awake And Asleep

 

This is, of course, an extremely subjective round-up, based mainly on my own experiences.  What will my distilled, concentrated life look like?  What causes will I champion and where will my energy reserves go?  Where will yours?  Chronic illness tends to create mini philosophers, whether we will have it or not.  And while I will never have all the answers, the questions are still worth pondering.

 

Fae Light - Dedeker looks like she's pondering Big Questions.

Fae Light – Dedeker looks like she’s pondering Big Questions.

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