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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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Pull up a chair, my tribe, and I’ll tell you a story, of the Before Times, which I rarely speak of – of my life before illness, which was an unusual one by anyone’s standards. It is a bitterly cold night here on the Mountain, 8 degrees and snowy, and gazing at that snow, so incredibly fine due to the very cold air, I see it sparkle in the deck lights, and am reminded of another snowy night, so long ago, almost half a lifetime now…

I remember…
…being a single mom living with my 7 year-old daughter in a very poorly-built log cabin, with no running water, in Ohio. I hadn’t planned to be there on my own… a marriage had recently ended badly, leaving me broken-hearted and financially-ruined. I found myself enrolled in college, learning to be a naturalist or forest ranger by day, and returning home in the evenings to a great deal of responsibility… “living rough” had seemed a fine idea when I was married to someone who people compared to the “Marlboro man,” but it was a daunting prospect for a woman alone…

After a long day of college classes that involved much hiking, near sunset on a bitterly cold Winter evening, I wearily climb the steep hill to the cabin, my daughter at my side. It is cold inside, too – the cabin is heated only by a woodstove, and, being incredibly drafty, requires a constant, roaring, fire, but the fire has been banked all day, down to a slow burn. I pile on wood and get it warming up, then move outside to chores as the daylight fades.

I break the ice in my rain barrels, and tend to my two horses, and feed far too many wolves. With what little energy I have left, I scrape together dinner for my daughter, and try to be there for her. I don’t do a very good job. My situation is overwhelming, is desperate, and I don’t know how I will get through it. I am deeply depressed, but trying not to show it.

But after she is tucked in bed, I pull my boots, coat and warmest gloves back on, and go back out into the biting cold to split wood. I have just used up all the already split wood to warm the house for the evening. Cutting and splitting the wood by myself is a never-ending chore, and I cannot get caught up.

The Moon is full and bright overhead, reflecting off the snow, and I can see my way clearly. I have no outside lights, so I glance up, thankful of the Moon’s brilliance. The snow crunches and squeeks under my boots, as it only does when it is so cold. I struggle to put a snow-covered log up on my chopping block. The splitting maul is lifted and brought down on the log with a well-practiced, if exhausted, stroke, and that moment is when the Magick happens, when everything changes…

The snow and ice on the top of the log suddenly explodes up around me in a powder-fine cloud, and every single flake, every single speck, sparkles in the moonlight with glittering rainbows, as it flies up around me and ever, ever, so slowly falls.

It is as if I have been showered with finely ground diamonds, or fairy dust, each speck shimmering with all the shades of the rainbow – deep blue, purple, scarlet red, fire orange – and the bright white of the Moon as they fall.

It is perhaps the most beautiful thing I have ever seen, and all because we were out of wood on a cold winter night.

I stand there in astonishment, as the cloud of glimmering diamond snowdust settles on and around me, and then gaze up at the bright Moon above me.

If I had needed a sign that even in one’s darkest hour there is Beauty, there is Hope, then I had surely been gifted with one, and I had, indeed, needed just such a sign.

It seems it is a fine and beautiful night for chopping wood after all, and I split enough for several days, laughing like a child as the rainbow-sparkling snowdust falls all around me and the glorious Moon shines down from above.

The memory of the unexpected and breathtaking Beauty of that night is a treasured one, and one I think of often. It holds and sustains me through the dark hours, and helps me find the Beauty, Inspiration, and Hope, to keep going… just as it did then.

The Moon is Magick and Mystery,
yes, and so are many other things.
If we but look,
there are signs and guideposts
all around us, pointing the way…
We have only to open our Hearts and truly See.

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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.

Ice

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.


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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“Art enables us to find ourselves and lose ourselves at the same time.”
― Thomas Merton, “No Man Is an Island”

Recently, I’ve come to realize (again) just how much being chronically ill has stolen from me, and not just in the obvious physical sense.

Little bits & pieces of me, of who I am, have been slowly slipping away into the morass of living with ME/CFS/Lyme, etc., buried under the avalanche of chronic illness, a little bit (or occasionally a lot) at a time, as I slowly spiral downward.

And then I found myself again, all the little missing bits, in the most unlikely of places.

The loss of physical function, of ability, is the easy part to see.

I can no longer ride horses, garden beyond a few pots on the deck & my beloved bonsai, or even make a trip to the grocery store without seriously overtaxing my body. Those long hikes in the Woods are long gone.

Less obvious to those on the outside looking in are the loss of the ability to watch TV or movies because of sound & light sensitivity & the damned migraines. I had have my favorite sci-fi & fantasy shows & movies, and I miss them, though they wait patiently for me on the DVR.

Perhaps most of all, I miss the ability to inhale a good novel, to luxuriate in a fantasy world of warrior women, magic, and quests to be fulfilled, or to travel backward into history & relive the ancient past. I used to read upwards of 150 pages a night of a good book, but I lost the ability to retain what I read, and so keep track of plotlines and characters, about 10 years ago.

But the Amazon warrior woman within, the myths & magic I love so much, reside within me still, I have found.

Rather than be pushed away into the fog and forgotten, they beg to be brought out into the open, acknowledged, and, even, nourished.

They are part of who I am.

Exploring more, I re-discovered the thrill of seeing a beautiful vista from a far-away land, a gorgeous garden, an amazing animal, an unusual and well done piece of art, and so much more.

And so I have found myself again, I have awoken from my soul’s slumber, thanks to that unlikely source I mentioned: Pinterest.

For those who don’t know, Pinterest is a highly addictive online “pinboard” site, where you can create pinboards – collections – of images of things you like, and keep them neatly arranged in as many boards as you like. You can “follow” people who share your interests, and browse their boards, and repin what you like to your own boards. Most of the pins lead to websites, often of interest, too.

To be honest, I joined Pinterest because I saw friends joining, and didn’t really expect much to use it.

But then I discovered the world of imagery that resides on the web, the treasure hunt that is Pinterest, finding people who like the same things I do, and began luxuriating in the glorious artwork & photography the way I used to do with my reading, tv and movie watching, and travel.

During a bad migraine day, of which there are many, I barely feel like moving, and thinking is terribly difficult. About the only thing I can do at such times is to immerse myself in the fantastic art & images of the divine, creative DIY ideas, magical homes, forests & sacred spaces, found on Pinterest, all while barely budging from my pillow, on my smartphone.

As I collect and categorize, I am both losing myself from the pain of the migraine & drudgery of another day of “chronic-ness”, and also finding myself, the parts so long buried & lost, hidden away. But still there.

Buried, but still alive & well inside my heart & soul.

It’s been six months of pinning now, and I’ve found it to be an interesting & invigorating process, both spiritually & emotionally.

Hidden anger & grief has risen to the surface to be dealt with, as I see things that remind me of The Before Times, of things I used to do, places I wanted to see, but now can’t.

I thought I was over that aspect of this illness we call ME/CFS, over the loss of so much that was a part of my identity.

But seeing some of these images, these visions of the Past and hopes for the Future, served as a reminder to me that grief is a process, a spiral, not a circle – we don’t go through the steps of the circle and be over it.

Instead, we go ’round and ’round the spiral of grief and anger, mourning the loss of Life-As-We-Knew-It, and with each turning of the spiral, the grief in our hearts heals a little more, slowly, ever so slowly, fading away…

As I’ve wandered the spiral of grieving for my life, I’ve found Pinterest to be invaluable in renewing my hope and fueling inspiration.

Creativity has budded, and begun to flower.

Images and how-to’s fill my Creativity board of things I know I can make and do, albeit very slowly. I can revisit and refine what inspires me, as new pins are found and pinned, and not-quite-right pins are removed. They remind me that:

I can still create. I can still make beautiful things.

Another board reminds me of my deep connection to Nature, and is populated with images of wild women and wild places, prompting the sleeping wildling within to awaken.

With every visit, the fires of inspiration burn brighter.

Once upon a time, I had my very own, very large, herb garden, with just about every herb, medicinal and culinary, you could have. But for now, we have the Woods, some pots on the deck, and dried herbs that can be purchased.

Pinterest has re-kindled my interest in using natural ways for healing. The internet is full of tons of information on using herbs & foods for healing, and my board is a great way to organize all that info – and encourage me to try it!


When things are very bad, physically, I can drop myself into the sacred imagery, fantasy art, especially lovely places, or beautiful wildwoods that populate my boards, and hide myself from the pain & distress. I can distract myself from the boredom of living a life filled with chronic pain & exhaustion by going treasure hunting – for new & wonderful things to pin.

It is a refuge, a respite, and a renewal, that I never expected, but am very thankful for.

To see my entire collection, please visit me on Pinterest ~ and if you’d like an invitation to join, just let me know (it’s free).

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I was afraid.

Not the kind of rational, in-my-head, calculating-the-risk, type of afraid.

No.

In-my-gut afraid.

Primally,
animal-instinctually,
go-inside-and-hide,

afraid.

Because of a sound coming up the Mountain, one I’d never heard.

It wasn’t a feeling I’d had in a long time; in fact, I can’t remember when. Certainly never here, at my home on the Mountain.

It was the night of Superstorm Sandy.

The wind had been steadily increasing all day, and had been raging and roaring for hours.

Late in the evening, we noticed a change in the sound. There was a strange vibration, too. Rhiannon, huddled in the dark with me, the dogs & cats, on my bed, was leaning against the wall, and said the whole house was vibrating.

In the kitchen, we both heard a strange wailing sound, as if a woman were keening. It is the season of Samhain, the Celtic New Year, which is the time when the doors between the worlds – this world and the realms of spirit – are most open. “Banshee,” or, in Gaelic, “Bean Sidhe” (Fairy Wife), came instantly to mind. Legend says the Banshee is the harbinger of death.

We stepped out onto our screened-in porch, only to be greeted by stinging, wind-driven, sleet, no matter how sheltered a position we took. Rhiannon only lasted a few moments in the raging wind.

But I stayed. Something felt decidedly different. Decidedly off.

I listened to the roaring winds, as I have countless times in the 11 years we have lived here. I wanted to understand what they were telling me.

They rage hard on our Mountain, at our home, when any storm front comes through – it’s the downside of living high on a west-facing ridge. The storms march across the wide Shenandoah Valley, spread out below, and run smack into us. Winds at our house are usually 10 to 20mph higher than down below, or even than they are on the other side of the Mountain.

As I listened, a deep rumble started in the Valley, and as it moved closer, grew in intensity.

For a moment, I thought of the sound that the occasional, low-flying, military helicopters on maneuvers make – there was the same thrumming, rumbling, vibration, with this new roar on top of the roar already raging.

But there could be no helicopters that night. The winds had to have been 70, maybe 80mph or more. They can’t fly in that.

As it got closer, it sounded, too, like a dozen freight trains were headed up the Mountain, the way their wheels rumble over the tracks, and the vibration, so low…

It washed over our ridge like a wave, this rumbling roar of wind, and the trees thrashed as never before.

Fear exploded in my belly, and my gut said to go inside immediately.

But I wanted to understand what was happening, so I stayed put, and lasted one more wave.

I listened to it build in the Valley below, rushing up through the trees as it made its way to us, and felt the vibration in my bones as the deafening roar & rumble washed over us.

Raw, naked, fear gripped me, filled my belly, and I bolted through the door, hearing the wailing cry of the Banshee as I did. I could not help myself.

I have never been afraid here like that before.

The screened-in porch is my domain, whether Spring, Summer, Fall or Winter, and in all weather. I visit it many times every day, work on carving there as energy allows, watch the seasons turn, and observe Mother Earth around me, day and night.

I have watched hundreds of thunderstorms march over our Mountain in the Summer, delighting in the play of lightning in the sky and the way the trees move with the wind.

I have sat for hours, well bundled, watching the play of thrashing trees against dark Winter nights when the winds raged around me.

Other North’easters and other hurricanes have come and gone and this Summer brought the startlement of the derecho winds.

And while others may be afraid of the woods at night, I delight in walking barefoot through them under the bright Full Moon.

But always, I have been in-my-head, calculating the risk, rationally deciding when it was time to go inside, for safety’s sake.

Never, in-my-gut afraid.
Never, primally, animal-instinctually, go-inside-and-hide, afraid.

This storm was different, “…stitched together from elements natural and unnatural.” as author & founder of 350.org Bill McKibben put it (you can also read a transcript rather than the video at the first link).

Rationally, I think what I heard was the cold front coming in from the West and merging with Sandy’s rotation. That would explain the layers of wind, the differing directions they seemed to come from. And the Banshee’s cry was the wind whistling through the leaves.

But irrationally, all I can think of is those moments of primal, animal, instinctual, fear.

I’m not used to being afraid of Nature.

Nature is my everything, my element, despite the illness that keeps me confined to the house. Nature is what keeps me going.

I am constantly aware of what is happening outside, looking out through the large sliding glass doors in my bedroom, or in one of my many ventures onto the screened-in porch.

We live in an untended and wild Forest.

The trees I know well, in all seasons. I see them sway gently or thrash in the wind; bask in the golden glow of Fall color; watch for the first green tips to appear in Spring; thank them for their shade in Summer’s heat.

I love the giant and ancient Oak that lives on the North side of the house well – it lost many limbs in last Halloween’s freak snowstorm.

From my bed or from the porch, I observe the sky: the clouds, the many beautiful sunsets, and at night, the Moon & stars. I smile as the snow swirls and falls, and the mists & fogs close in. I listen to the birds, track their migrations, and follow the lives of the many deer and other wildlife.

While Sandy left our home undamaged, for which we are extremely grateful, she did leave a mark.

Our Forest, filled with trees that are tough, strong, and resiliant, tempered as they are by the many high winds we get from storms, shows Sandy’s mark here & there in twisted, dangling branches, and a few downed trees & branches. My favorite Fall-color tree, an Ash, lost a large primary branch. The beautiful Fall leaves have been largely stripped from the trees, a bit early, and carpet the Forest floor.

Yesterday, I saw one of the many deer who I have watched through the Summer, a youngster, appears to have a seriously injured ankle – swollen & with a bloody ring around it, as if it was trapped in something. I wonder if she ran in fear of the storm, and caught it between stones.

But it could have been so much worse.

Sandy has left her mark on me, as well.

I will not forget those moments of animal, instinctual, fear. They have renewed my sense of awe and respect for the force and power inherent in Mother Earth.

She is not to be taken lightly.

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