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This story starts with a dog, and ends with another. It’s long, and touches on sensitive subjects, with raw, open, honesty. The last 10 months have been quite a journey, full of sorrow, shock, a moment of extreme clarity, a lot of contemplation, reflection, unexpected dreams, and then resolution, when the dream became reality.

It started with watching the slow decline of our elderly dog, Kasha, who had a number of health issues. The most difficult was degenerative disc disease, and as last summer turned to fall, she was having increasing difficulties controlling her rear legs.

Then came a shocking phone call, when I found out my spinal x-rays didn’t show the herniated disc I expected, but instead showed that I, too, have, “severe multilevel degenerative disc disease,” on top of everything else.

I was caught way off guard. I had been working on the premise that I am going to get the ME/CFS under control, using all my supplements, and that one day, once I figure out these migraines or get thru perimenopause, I was going to be back to some semblance of myself – I know there’s damage that will always be there, but I think there’s a lot that can be fixed, too, slowly, over time.

But, it’s basically going to be with me the rest of my life. There are a few things I can do, some supplements and maybe some physical therapy, and I’ve gotten a TENS unit that helps. But my spine is very unstable – I’ve been going through periods for two years, where I “throw my back out,” and I can feel the discs moving out of place, and pain and sciatica flares like a bonfire.

After absorbing this news, I walked out into the living room to find that Kasha had lost control of her bowels, and there was a trail of poop leading through the living room and onto the porch. She was lying there looking so very ashamed.

It triggered a moment of extreme clarity, a frozen moment in time, where I knew two things for certain:

Kasha was at her “red line,” the place where dogs with degenerative disc disease are no longer recoverable – it was not going to go away with rest and time, and was going to be the end of her, and soon.

And just as clearly, I felt that I, too, now have a red line, though I’m not to it yet. My mind played it out for me… me with a walker, or in a wheelchair, although I don’t know how I could even use either because of a torn up shoulder, and the weakness and utter exhaustion of ME, CFS, fibromyalgia, etc.

There was the feeling of a door slamming shut in my mind, those images simply shut out. I won’t, I simply can’t, live in a condition where I’m bed bound and need a wheelchair just to get around. And I won’t be that kind of burden on Rhiannon and Ben, either.

I wasn’t afraid.
I wasn’t sad.
I felt acceptance.
And, much to my dismay, I felt relieved.
Relieved, because the long fight would be over. I didn’t realise how very tired of the constant struggle I was.

I didn’t so much as make a decision as have one thrust on me from deep in my soul. Just as Kasha would find her peaceful end, in a beautiful, sacred, manner, when the pain became too much and when she couldn’t rise, I too, would find that place.

I have many friends, fellow patients, who have to use wheelchairs or walkers or scooters, and I have the utmost respect for them.

But that’s simply not something I can accept.
I have been sick for more than 17 years, and almost entirely housebound for 10 years.
I cannot accept any further limitations on my ability to move around.

I am meant to roam mountains and walk through my beloved woods.
I am meant to be a wild thing, and I can barely take the captivity I have already been in for much longer.
I am the wolf, tightly caged, pacing back and forth, going slowly crazy from my longing to be free.

But here was this realization that I wasn’t ever going to go running barefoot again, through the golden autumn woods calling to my Heart that day, because my spine is simply too unstable. That’s a huge and terrible loss, and the shattering of all the dreams and plans I’ve been holding on to… I wanted to get well enough to be able to help some of my dearest friends, my soul sisters with ME, CFS, fibromyalgia, etc, maybe share a house with them, all of us working to heal each other.

I watched each day as Kasha had a few ups and lots of downs, and it was like watching a train wreck in slow motion, knowing it was heading my way…

In the months since that moment of clarity, and through Kasha’s gentle passing, the sacredness of her death, a gentle release with mercy, I’ve spent many sleepless nights, thinking about just what I wanted to do, and how much fight was left in me for this new, seemingly insurmountable, challenge to my health and my life. There are things I want to do, and things I need to do.

And then along came some dreams, and some info about dogs, that had me reevaluating how long I am willing to fight to go on.

Twenty years ago, living in fear from a relationship gone terribly bad, I lay awake in bed at night, too stressed and worried to sleep. I found solace in meditation and visualization (shamanic journeying). Usually, I would “go” to a beautiful forest at night, and run as a wolf until I finally curled up, safe, in my den. I’d fade off to sleep that way.

But one night, instead of being in my forest, I found myself high on a rocky outcropping, in a sea of rippling sand. I could see in every direction around me, see that I was safe. I laid down in the sand, pulled my cloak around me, and felt desert winds deposit a soft blanket of sand on me. For years, every night, I went to the desert to sleep.

I studied the desert as it is today, and as it was. I drove my family crazy with my sudden obsession with the desert. I didn’t explain that the desert had come to me, unexpectedly, but it was saving my sanity.

The decades passed, and I eventually went back to my forest – until my moment of clarity. Ever since then, every night, I retreat to incredible vistas of desert dunes, open caves and hidden chambers. This time, though, there is something else there with me: a lean desert dog, colored the same as the sand, and with electric eyes that look right through me. I know the feel of her soft ears, and my fingers remember the shape of her head under my hand.

Salukis, a beautiful desert Sighthound, have fascinated me since the desert came to me. They are perhaps the oldest of all dog breeds, and the only type of dog who was not seen as “unclean.” Desert nomads have cherished the Saluki for thousands of years. I’ve wanted to have a Saluki or Saluki mix for 20 years.

But now, through chance, I learned that most people in the middle east treat dogs in horrible, horrifying, ways. They do not value them as we do. Many Salukis and other dogs are simply dumped in the desert when the owner tires of them, or if a racing Saluki doesn’t run fast enough. Some racing Salukis have their ears cropped off “to make them run faster.”  The Salukis have bred with the many other dumped dogs, and now “desert dogs” are pretty much a breed of their own – small Sighthounds, usually with short fur and tails that spiral into a curl.

The pictures are terrible to see. Dogs so emaciated you can’t believe they are alive, or who’ve been viciously beaten, or thrown out of a moving car, leaving them with broken legs. Dogs who have been shot by the police, in front of children, when an area has too many strays. Dogs beaten with stones by children, who know no better. Need I go on?

It broke my heart.

The question changed from “when” to give up the fight, to a very simple, “do I want to die without first rescuing a desert dog? Or do I want to hold on long enough to rescue my dream dog, a true desert dog, and experience her life with me?”

Adopting a dog from the middle east can be somewhat complicated, but there are many groups and individuals there, mostly westerners, who are involved in rescuing the ones they can, fostering them a time, then finding them new homes in the U.S. and Europe. Some send the dogs to the U.S. first, and then put them up for adoption, and others work directly with those wishing to adopt.

I began watching the various groups on Facebook in late winter, and the number of dogs needing new homes is overwhelming. But if I was to rescue one, it had to be the one from my dreams…

And then, there she was. A desert dog with electric, topaz blue eyes, just as I’d been dreaming of. I really didn’t think she could exist. But she does.

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Ellie is about one year old, and was found dumped to starve or fend for herself. Despite that, I hear she’s an incredibly loving and gentle dog. She’s not too big, and not too small, either, weighing in at 40 pounds.

After weeks of working on arrangements, my Ellie will be flying from Dubai, in the UAE, home to me on Monday, June 27. What a birthday present!

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For me, Ellie is Hope – hope that I will have improvements in my health, and she is incentive to keep on fighting, keep on going, no matter how hard it sometimes is. By fulfilling my dream of having a desert dog, my motivation and inspiration to keep moving forward to experience her whole life with her is immensely boosted. That’s just how much I love dogs.

I’ve also become close friends with Ellie’s amazing rescuer, Charlotte, and with Marci, who is practically a one woman whirlwind of dog rescuing in Al Ain, UAE. I am completely in awe of what they are doing, and will be forever grateful for all the hours of work, time and money, that went into getting Ellie cleared to fly and come home to me.

I’ve set up a fledgling Facebook page for them, in the hope of helping other dogs find homes. It gives me inspiration, to know that I can still do something with my life, even if all that it takes is monitoring a Facebook page. I’m not completely useless, after all.

I believe everything happens for a reason. It was not coincidence that I learned about the desperate conditions for dogs in the middle east, and it was not coincidence that Ellie showed up in need of a home, the dog from my dreams, one I didn’t think could possibly exist.

Ellie of the Topaz Eyes is the fulfillment of a 20 year long dream. If she can happen, what else might be waiting around the corner? All I know is that I have Hope again.

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My spirit sister, Laurie, passed away, the day before yesterday, and I found this beautiful fantasy story, with characters based on myself and my youngest daughter, on her blog last night. An amazing last gift, one of many, from one who gave so much Love to the world, and to me.
Fly high, my sister, and enjoy the beautiful spring flowers!

Hibernationnow's Blog

Source: We Heart It

Hello? Rhia a tall young woman with beautiful red hair, trailing down her back, was taking a walk past fields of grass through the lush green forest when she stopped short in front of the most beautiful image she had ever seen. She gasped, just staring at this magical wagon, with different colors, different textures. She said “Hello? again.” It was odd, she was sure she could hear whispers and giggling but she didn’t see anyone around. She felt incredibly safe so she climbed up the steps and peered into the wagon.

Rhia was a quiet but very strong young woman, having lived on the streets and shelters before, but as soon as she got to the top step she suddenly she felt a rush of happiness and love enveloping her. She never felt this feeling before. She walked around the carriage noticing the brilliant colors and daring to touch…

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I went to my PCP (that’s Primary Care Provider for those who don’t know) last week for my monthly visit, and a new nurse takes me back to the room. It went something like this…

Her: “You’re here for a follow-up for…?”

Me: Chronic fatigue Syndrome.

Her: Oh, fatigue. So you’re tired a lot.
(As she starts looking for the computer’s questionnaire for “fatigue” patients…)

Me: No. Chronic. Fatigue. Syndrome. It’s an illness, and it’s in there.

She continues sorting through, finally finds it, where I helpfully point out it’s listed as just “Chronic Fatigue,” but reassure her it has the right questions. The screen is huge, and I’ve done this so very many times…

She begins reading through the questionnaire the computer provides:

Her: And when did this start?

Me: 1999
(by now I know she’s NOT in the right place, she’s doing a new patient questionnaire, not a follow-up…)(sigh)

Her: And what brought this on: stress, viral infection, accident, yada yada yada…

Me: (hard stare)
Me: (thinking: do I really want or need to get into this with this ignorant nurse who couldn’t care less? I have a blazing migraine and ear infection and just want to see my most excellent doctor. I am not in the mood to patiently educate yet another nurse today.)
Me: Possibly a lot of things, but even scientists don’t know for sure what causes it.

Her: (she looks up briefly, startled)
Her: Oh… Is it relapsing, constant, or getting worse?

Me: Constantly getting worse.

Her: Are your symptoms worse after physical activity?

Me: Oh, are they ever.

Her: And do you have: unrefreshing sleep… impaired cognitive ability… decrease in activity level that interferes with normal activities… migraines or other headaches… muscle pain… weakness… gastrointestinal pain or bloating… etc etc etc

She glances over and sees me nodding my head, yes, to everything.

Her voice has gotten softer and lower as she’s moved down the list, and she trails off before she gets to the end. She wound up not asking me all the questions, and I should know, having done this once a month for years.

Me: I can make it easy for you. I have every single one of the dozens of symptoms on the list, with exception of diarrhea.

She looks at me with surprise.

Me: Next section: Yes, medications help, to some extent, but not enough.
Me: Yes, they cause lots of side effects, such as nausea, heartburn, headaches, etc. I take meds to deal with the side effects of my meds, but no, it’s not nearly enough. I’ve been housebound since 2007.

Me: Next section: yes, I’ve tried supplements and they do help, as does meditation, massage, and physical therapy. Acupuncture was questionable.

She is busy clicking boxes.

I really couldn’t tell, when she left, if she was upset at the thought of an illness that she’d never heard of causing such issues for such a long time, if she was overwhelmed, or just didn’t care. She didn’t look up when she stammered, “I hope you get to feeling better soon.” But as I reflect back on it, her shoulders were hunched, and she kinda looked like a dog who has been beaten… or maybe like someone about to cry. I honestly don’t know. I wasn’t mean or snippy, I was just matter-of-fact.

This is what it is.

I rested my blazing head down on the edge of the table, closed my eyes against the too-bright lights, and practiced my deep breathing while I waited for my doctor to come in. I couldn’t wait to get back home, away from the lights, the ordinary sounds of life, that brought such searing pain to my oversensitive brain, back into my girl cave and the dark and quiet… one breath, one moment, at a time… but how I longed to set foot in a store, or just ride in the car without sunglasses and a scarf over my eyes…

But, This is what it is.

And what it is, is known as Chronic Fatigue Syndrome in the U.S., although in other countries – and by the WHO – what I have is ME: Myalgic Encephalomylitis.
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There is a Wisdom,
Buried deep in my bones,
A Gift,
Passed down to me,
From Ancestors of Old.

Today we call it a curse,
And fight and rail,
We give it names,
Arthritis and Migraine,
And call the wild Wisdom,
By another name: Pain.

But, is it, really,
Just the song my bones knows?

5,000 years ago…

…I would have been honored amongst my Tribe. I would have warned my People four hours ago that a change in the weather was coming, something I knew because I felt the change coming in my ears, my head. We would have had time to take shelter before the raging winds arrived, as they have now.

…I would be warning my Tribe now that an even bigger change was coming. I feel it, in my bones – in the bad knee and shoulder that suddenly twinge, and the deep ache in my bones growing sharper by the moment.

My bones know. They are singing to me, singing of the changes to come.

Tomorrow, the temperature here will drop from 35 degrees to something-below-zero, with wind chills of -30 degrees.

My bones are telling me that, a Gift that could have meant the life or death of my Tribe.

I can tell you when rain is within 50 miles and headed this way, whatever the season, by the pang in my shoulder. There was a time when that would have been very useful.

Now, I have no need of this life-saving Gift. Who does? We have the Weather Channel, and weather apps on our fones.

But maybe, it’s time I stopped complaining about the “pain” of my “reactive inflammatory arthritis” and “weather migraines,” and started thanking my body for giving me the warnings it was meant to give me.

It is only my body singing to me with ancient Wisdom.

Maybe, it’s time I started just listening, just being with the sensations, without labeling them as “pain,” and instead, think about what they would have meant a thousand, or five thousand, years ago.

Survival. Life. Or, death.

Maybe, it’s time I stopped running away, and just lay still, curled up, and listened to the Wisdom buried deep in my body.

I think it has a lot to say.

I wrote that last night, but then didn’t post it.
I was too busy, listening to my bones sing.

There is a craft to this, the listening, one I’m sure our ancient ancestors refined. Just as I know the approach of rain by my very reliable shoulder, what exactly was the singing in my ribs, my bad knee, then most of my bones, even into my hands, telling me last night? If I had no weather app on my fone, I would need to know.

Waking far too early this morning, writhing from the ache in my bones, with pressure in my head, I knew the temperature was soon to start its drop and more change was coming. I could hear the wind roaring outside. When I got up, I discovered that yesterday’s mild south winds, that had changed to west winds last night, were now hard and gusting even harder from the north.

My mind flashed back to reading about the “polar vortex” and coming “arctic plunge,” with temperatures so low that “if you are younger than 40 you likely won’t remember anything this cold.” I put that out of mind.

Why stay awake and thrash and fight the “pain,” when it is only my bones singing to me, with the ancient Wisdom, as the bodies of some have done for countless generations before me?

Instead, I thanked my wonderous body for the warning, and told it that I understood why my bones were singing, the Wisdom it was sharing with me.

Muscles relaxed instead of spasmed.
The song became a lullabye.
And then, I went peacefully back to sleep.

It will take time to break long-engrained habits – the tightening of muscles around the signals my body is sending, the labeling of those signals always as “pain,” fighting and avoiding them, causing my body to only send them out louder and stronger, more urgently. But, it’s a start.

I’ve wondered before if weather-related migraines were an evolutionary advantage – if a small proportion of members of a tribe had them, they would have been, I think.

But, I never tried to consciously work with my body, to acknowledge that its messages were received, other than to say, “yeah, that part hurts, I understand, you can shut up about it now.” The flare of inflammatory arthritis I’ve been having has given me a new incentive to work on how I deal with “pain,” and acknowledging it while in deep relaxation does help – to a point.

Maybe, only “to a point” because I wasn’t acknowledging the whole message.

Yes, my wise body, I hear the song in my bones now, and I understand. You’re right, a big change in the weather is coming, a dangerous one. Thank you for warning me. I am safe, warm, and protected – and listening.

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It’s funny, what I forget, even now, after so long being sick. Sometimes, in my mind, I am still strong & healthy, as if time simply stopped passing when I became ill. Sometimes, it really feels that way, as if time did stop, and there is only The Before Times and a giant blur that came after.

But it’s been 15 years this month.

I had relapsing and remitting symptoms for a couple of years, and then in Dec, 1998, ME/CFS & FMS (and chronic Lyme) came to stay. I was diagnosed in 1999.

I just now, today, realized it was now actually the month of December, and the year is 2013, and that means it has been 15 years.

Time passes very differently for those of us with ME/CFS. I often am surprised at what month it is, or how long it’s been since something has happened. Sometimes I’m off by years when asked, “How long since…?”

One of the curses and also dubious blessings of this illness is memory loss. I remember things that happened before I became ill far, far, clearer than things that came after. Those 15 years are a fog, a ghostly mist through which I catch glimpses of events.

Sometimes, something or someone will trigger a memory, and something totally forgotten comes back. Sometimes, no matter how hard someone tries to get me to remember something, even some meaningful and important event, no matter how desperately I grasp for it, there is just nothing there. A ghostly mist where the memory should be. A blank slate.

But the not-remembering, the fog, and the complete lack of a sense of the passage of time, those things can be a blessing, too. If I had to really remember all the pain, misery, and suffering, of those 15 years, the frustrations, the losses… I’m not sure I could handle that. It is better that it is a blur.

Sometimes, because it seems like the last 15 years really didn’t happen, and I’m still that strong & healthy woman I was at 35, I forget, and do stupid things. Things my now-fragile body can’t handle.

Today, we are in something of a crisis as we are preparing for a severe ice storm, and I am totally stressed out. This stress is a huge problem.

My body’s been dumping adrenaline, making me think I am stronger and can do more than I am or should. It’s had this adrenaline dumping issue for months now and we haven’t been able to track down the cause.

Suffice it to say, whenever the slightest bit of stress happens, my body dumps adrenaline and prepares for “fight or flight.” This has led to a lot of pacing around the house like a caged tiger, sleepless nights, angry and irrational outbursts, a “manic & frantic” mental state, and is, in general, driving me and my very patient caregivers absolutely crazy.

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The last 10 days have been incredibly stressful, with a severe ice storm last Tuesday & Wednesday leaving damage behind that I had to deal with, and now a second, probably even more severe, ice storm looming on Sunday.

I have pushed way far through the “energy envelope” we with ME/CFS are supposed to stay within, for day after day, goaded on by a flood of adrenaline.

And I’ve done a lot of really stupid things: walking around in the icy woods assessing damage, flagging down electric company workers…

I’ve been home alone for a week, as Rhiannon’s couple days’ visiting with Ben’s family turned into a week when she caught a terrible cold that I really don’t need to catch. So, I’ve been dealing with a lot of crap on my own that I normally wouldn’t – not just daily living, but getting power lines fixed, both at my house and a neighbor’s retreat cabin, being without cable for days and getting that fixed, etc.

Today’s really stupid thing?
When the electricians who are installing inside wiring for our emergency generator arrived, Kodi, our 125# Tibetan Mastiff/Rottweiler, went ballistic. He is head of security here, after all, and there were 3 people on the porch. His job is to protect me, and he takes that very seriously.

Kodi

2012 – He’s filled in considerably since…

The flood of adrenaline hit. I had to get him in the bathroom so I could insure their safety. I didn’t even think about it. I reached for his collar and he yanked himself away, rearing up like a wild horse. I lassoed him with a leash, and oh, he fought, just like the horses I used to have, before finally giving in.

Kodi understands something I still don’t, after 15 years sick, and 3 or so at this precariously low weight: He’s an incredibly powerfully built, 125 pounds of solid muscle, linebacker of a canine killing machine, and I am 107 pounds of skin, sinew and bone. I am not that physically strong woman anymore, who could wrangle a horse.

He is a dominant-aggressive dog by nature, and it took a long time and a lot of hard work to get him to submit to me as his pack leader. He still sometimes puts up a fight about that, especially when I’m in the frantic-manic mind-state that adrenaline puts me in, rather than the calm-assertive state I should be in.

It wasn’t until my adrenaline level dropped that I even realized my hand was hurting and damp. Leash burn, so bad it had blistered open and was oozing pus. And then pain in my fingers, my wrist, my back…

“What the hell was I thinking?” I asked myself, as I inspected my hand, noting yet again the hollows where muscles used to be. I wasn’t, I concluded.

Adrenaline fueled, my mind told me to take care of the problem.

Forgetting I wasn’t still that tough & strong woman who not only wrangled horses but also lived with wolves, I did.

Now I will pay the price. Hopefully, this time the lesson Kodi has taught me will stick, and I will approach him differently.

15 years I’ve been sick, and yet, still, there are times I don’t remember that.

And I don’t really know if that’s a good thing, or a bad thing.

But if ever I forget, and truly only see myself as this frail shell of the woman I once was, I think I would be done for. THAT woman has to live on in my mind, the ultimate goal, in order to keep going, keep looking for ways to get better. I will never be quite HER again… I will be older, wiser, and emotionally and mentally a hell of a lot tougher than I ever was. But SHE has to remain the goal, unforgotten.

I think that’s worth a little leash burn and sore muscles.

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In my last post, I said I wanted the fire, the passion, back in my life. Over the last few weeks, I’ve done a lot of deep thinking and reflecting, while struggling every day just to keep my ship from sinking.

Well, I’ve come to some harsh realizations and conclusions, and I’m feeling pretty damn passionate.

It has become quite clear to me that the time has come for a full scale war.

A take-no-prisoners, risk-it-all, war.

It is that desperate.

My body is that desperate.

Ravaged by years of chronic illness, my muscles have withered away to nothing.

Pillaged by viral invaders, my immune system doesn’t know which end is up.

Overwhelmed by colonizing microbes and leaky gut syndrome, my gut doesn’t know food from foe.

Every resource in my body has been drained, thrown into the war effort against ME/CFS for long year after long year after long year… I was diagnosed in 1999, but sick well before that.

Hasn’t there been full-scale war before now, you ask?

Yes. At times.

But also times of resignation; of trying just to hang on, hopeless of ever improving, just patiently awaiting the seemingly inevitable. The slow, slow, spiraling downward, so slow as to not provoke a passionate response. Too tired to hope, sick of changing my meds, or trialing this alternative therapy or that.

You could call it “patient burnout,” and I suspect many of my fellow patients know just what I’m talking about. The year after year of trying to hit on a combination that would stop the downward slide without success, until you just stop really giving it your all.

But the last few months, the slide hasn’t been slow. It’s been alarmingly fast.

Now I have this looming sense of being back-against-the-wall, it’s-now-or-never. Live – really live – or die.

Because I know my body simply can’t go on like this.

It can’t sustain the fight much longer the way it has been this Summer: the periodic adrenal crises and crashes; the repeated episodes of diarrhea; the weakness and shakiness; and continued loss of muscle mass. I have only to look in the mirror, or to look at the deepening indentations in my hands, feet, or wrists, to look at the starkly showing breastbone, collarbone, and ribs, the sagging skin, to know that this is simply unsustainable.

I’m not being overly dramatic.

I’m being realistic.

And it’s not sustainable – or fair – for my youngest daughter, Rhiannon, either.

My elder daughter, Terra, is 29. She has worked hard and built a life for herself, with a career she loves in the military, and graduated magna cum laude from college while working full-time. I’m couldn’t be more proud of Terra and her many accomplishments. I’m also relieved that she has established such a rewarding and fulfilling life for herself, and that she is an extremely strong and independent woman.

Whatever happens to me, Terra will be okay.

But Rhiannon has been carrying the weight of being my primary caregiver for 7 years. She is only 18 1/2 years old. Rhiannon has mild ME/CFS herself, but more urgently, her life is on hold right now. Because of me. Because I am so incompacitated, and as I have gotten even more so over the last few months, her burden has gotten even heavier.

And that is simply unacceptable.

It breaks my heart, every damn day.

Rhiannon deserves a life, too, one where she can go and do things without worrying I am going to literally die while she is gone. Without worrying that I am going to die before she has gone to college, gotten married, and established a life for herself. Without worrying that she is about to become an orphan – her father died just over a year ago. And without the stress of my illness making her even more ill.

And you know, I would really like to have some years of life back that aren’t being lived out of bed.

I want to garden again. Walk in the woods. See my grandchildren be born – and they are not planned for a number of years yet.

Rhiannon promised me a trip to Chincoteague & Assateague Islands, to see the wild ponies, something of very special signifigance to me. We were supposed to go this Summer, to celebrate my 50th birthday.

But I haven’t left the house for the last 3 months except to go to the doctor.

Issues like these, they help bring the Fire back into your heart.

So what’s there to do that hasn’t been done in the past?

Plenty!

REFUSING to surrender to the Living Death is a start. Attitude is important!

Get this, ME/CFS! I’m not done living my life yet! I’ve got things to do, people who need me, and I’m not just going to go quietly into the dark!

Every War Needs a Good Stretegy

Strategy is vitally important, and at this late stage in The War, that means pulling out all the stops, and a lot of thinking outside the box.

It means research, reviewing all my labs, running my clinical history over again, and connecting all the dots.

If the majority of rx meds have failed to do much to make a difference, this is where I look elsewhere for answers – and for weapons to add to my arsenal.

In May, I found one big clue, one big fat juicy hint at the Enemy’s original weapon, the one that caterpaulted me into this mess, a toxin we’ve all been exposed to. Knowing that, I know how to undermine it, and begin to repair the damage.

If the invading hordes of viruses and microbes are resistant to the meds I’ve taken for years, then I hit them with something new and unexpected – this is guerrilla warfare, and the weapons I need come from the land, from the Earth, the trees and plants: Herbal Anti-Virals & Anti-Fungals.

Heal the gut and my body can absorb nutrients again. Just as importantly, my immune function can be restored to proper functioning. Since my own army of beneficial bacteria has been annihilated, I’ve recruited new ones – with something far beyond yogurt or standard probiotics, and have already had a “healing crisis,” showing that my immune system will respond.

When reviewing my labs, I was reminded I have both MTHFR mutations – and the full ramifications of those are something I’m just beginning to understand, but they sure are one big piece of the puzzle (and one many of us have in common).

There is a LOT that needs healing, a lot of systems in disarray, and if I’m neither eating correctly because of PAWS or digesting correctly because of malabsorption and leaky gut, then there are a lot of things that need to be supplemented. I’ve been researching into those, with my doctors’ help.

I’ve already found one supplement that has helped tremendously with cognitive issues, much to my shock and surprise – I wouldn’t have been able to write this post without it, and highly recommend it (I need to take it early in the day or it keeps me awake): SERIPHOS.

This is sink-or-swim.

I either figure out exactly what my body needs, thru careful research and with my doctors’ guidance, and get it and take it, or The Enemy is going to chalk up another victory.

And that’s just not acceptable.

I will not go quietly.

I want my Life back!

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Walking through the Fire.

Walking through the Fire.

Frank Talk On Pain and Pain Meds:

An irrational post about how opioid withdrawal makes you irrational… a rational version I’ve been trying to make coherant for days is coming. Eventually.Right now, I am really angry. Really, really, angry. At myself.

Mostly, I am angry because I am adrenaline dumping, and I know that, but just the fact that I am adrenal dumping makes me angry. At myself.

See, I made the decision to quit opioids in favor of LDN in something of a rush. I had been humiliated by the substitutes for my PCP when she was out on maternity leave. She’s awesome, and has been doing my pain management for years, and neither she nor I were expecting problems.

But there were. And I was treated like a drug-seeking addict. Which I’m not. I’ve been the model, compliant, chronic pain patient.

So I was humiliated, and worried I was going to run short, and hearing all these good things about LDN, so I just said, “fuck it, I’ll quit!”

Just like that. With scarcely any research into opioids, or withdrawal, or what to expect.

I had no clue just what a mental, emotional, and psychological firestorm I was walking into.

Everyone knows opioids causes physical dependance, and everyone who decides to quit them knows there will be some horrendous physical withdrawal symptoms.

I didn’t know, though, that for everyone who goes through withdrawal, however slowly (I’ve done it in steps, and stalled at 17mg), it is a crazy rollercoaster emotional ride.

In acute withdrawl – when taking those steps down – first comes extreme anxiety, nervousness, the restlessness of a caged tiger, irritability and extremely irrational anger.

Most importantly, I didn’t know that the wild anger (and there’s a lot of it) and waves of fear – the “I can’t do this!” panic – is caused by adrenaline dumping – the “fight or flight response.”

That little nugget was hard to come by.

Now I know that the repeated acute withdrawal caused by “stepping down” my dose every week or two left me with some serious adrenal insufficiency issues. Issues I’m still dealing with, and will be for some time.

I didn’t know Opioids are such psychoactive compounds.

They affect far more than just our perception of physical pain. When you decide to quit them, it affects many aspects of brain functioning and neurotransmitter levels.

Many people turn to illegal opiates, whether Oxycontin bought off the street, heroin, or whatever, in an effort to numb themselves from the painful aspects of life. In getting high, they don’t have to feel the pain – not even emotional pain.

But this effect of opioids on our brain, on our emotions, this numbing, this “emotional flattening,” also affects those of us who aren’t using opioids to get high, who are using them only for physical pain. The effect is so slow, as our doses are slowly increased, that we often don’t even realise anything has changed.

To make it crystal clear for anyone who hasn’t been following my saga, I have never sat around feeling “high” from my pain meds, because I have taken just enough to take the edge off my physical pain. There has certainly been nothing like a “pain-free” day, because I didn’t want to take a big dose – I rarely asked for increases in my daily dose, despite the fact that tolerance builds up very fast. But I’ve been on them a long time, so was taking a pretty substantial dose when I started this process. I am physically dependant, not addicted, and there’s a big difference.

I touch the fire and it freezes me
I look into it and it’s black
Why can’t I feel?
My skin should crack and peel
I want the fire back!

Walk Through The Fire

Over the decade I have been on opioids, I did notice that my emotions were flattening out: I rarely got angry, or truly happy, and somewhere along the way, I pretty much stopped crying.

I did really wonder about that last bit – there has certainly been plenty to cry about. I reasoned that I was just resigned to my situation, that I had accepted the unacceptable.

Being “flat” was an okay place to be, given all the loss of the last 10 years: the loss of functioning, the extremely reduced quality of life one has when housebound, the horrifying changes in my body I see when I look in the mirror and allow myself to really see, and personal losses, too.

There were moments when it would hit me, and I wrote about some of those moments. After a few hours, a day at most, though, I would just go back to being flat.

But when you start to taper your opioids, suddenly everything rushes in – everything you didn’t feel while you were taking them.

And then there’s PAWS

Over 90% of people who quit opioids develop PAWS: Post Acute Withdrawal Syndrome, aka Prolonged Acute Withdrawal Syndrome.

PAWS is what happens when your brain is playing catch-up. You may have gotten entirely off opioids, or, like me, gone down too fast, and be “stuck” at a low dose, experiencing “milder” – but still very significant – withdrawal symptoms.

PAWS can last months, or even years, and usually comes in waves – you may be fine in the morning but by afternoon, you have been dumped back into withdrawal again, or fine for a few days until another wave catches you off-guard.

And PAWS is that emotional firestorm, along with waves of physical withdrawal symptoms, too.

Imagine if your brain is a mass of electrical wiring, and opioids have been providing “insulation” for years, and then suddenly the insulation is stripped away – the sparks will fly!

I thought I was going to avoid PAWS. After all, detox centers do it in a week. I was planning on 2 to 3 months. Surely that would be slow enough, right?

Wrong. Once again, I should have done more research. It wasn’t. Not by a long shot.

It will take months for my brain to re-balance itself, especially since I’ve been on opioids for a decade.

Nifty knowledge nugget: people in PAWS often meet the criteria for being Bi-Polar. I can vouch for that.

Oh, and PAWS also causes significant cognitive impairment – something we ME/CFS patients already have in spades. Disjointed thoughts, memory loss, inability to concentrate, insomnia – you name it – all on top of the existing cognitive impairment!

So, yeah, I’m angry at me, because I’ve spent the last 6 weeks in heavy duty PAWS, coupled with adrenal crisis.

So this is what it is for me: it’s everything I didn’t feel for 10 years. All at once.

A jumbled up mess of anger, sorrow, anxiety, grief, fear, rage, depression, mourning, and, very occasionally, a brief glimpse of happiness.

Along with all that, thoughts fragment, and shatter in all directions. At times, I am manic, and at times, I’m just a blank slate, as my overloaded brain shuts down.

Every day is different, and sometimes, every hour is different.

It can hit very fast, and I call it “crazy-brain.” It’s usually accompanied by a big wave of physical withdrawal symptoms, ones that make me want to crawl right out of my skin. I often have a hard time thinking at all, even composing words into a sentence.

There are just feelings. Often, very uncomfortable feelings. Dark feelings. Not associated with any particular event, or memory. Just waves of darkness and black moods.

And I am caught in the fire
At the point of no return
So I will walk through the fire
And let it
Burn
Let it burn!

When I understood what was happening to me, where these feelings were coming from, I decided that trying to block them out, or ignore them, was not the way to go.

This is a fire I have to walk through – because I want the Fire, the passion, back in my life.

These are feelings I should have been having, but didn’t. Repressing them isn’t going to make them go away.
But maybe embracing them will.

So that’s what I’ve been doing.

Sometimes, I listen to music, very loud. I have a playlist I actually call “neural overload.” Something about familiar songs, the sound reverberating in my ears, helps get me through the physical withdrawal – the feeling of ants biting me all over, of rats gnawing on my bones… my mind can’t process the signals of the phantom pain and the music at the same time… and the darkness of the music matches my mood, gives it focus. Like when you have a heartache, and listen to the saddest songs.

All I know is, it helps.

So this is me, walking through the fire.
This is my brain on crazy.
I will get through it. I know that.

My adrenaline has run out. I’m not angry anymore.

I thank those of you who are my much neglected friends and soul-family, who have wondered at my absence from your life, and who have sent words of encouragement. You all mean the world to me, and I’m sorry I’m not able to be there for you right now like I would like to be. Not to worry – I’ll be fully back when I’m done walking through the fire, and if you need something, just shoot me a facebook message.

Much Love to my friends, family, and tribe.
Ash

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