The Harsh Reality of CFS

Note: On Monday I wrote three messages to my mother, in typical Aspie style – I held nothing back. I’ve clipped a bit here, but it’s mostly intact. I’m posting it here in case you want to know what it’s really like. Be forewarned: my mother spent two days in the hospital after reading this (likely TIA). My fault. No tact. I thought she understood, I thought she knew all this. Maybe it was seeing it all in one big blurb. I don’t know. I’m just very, very, sorry.

The Harsh Reality of CFS

We had a miserable evening & night here. I was SOOOO sound & light sensitive, it was terrible. Nauseated, too. Had Rhia bring me my favorite granola with cashews & dried cranberries before it got worse, so I had a full tummy. She put it in a plastic bowl so the spoon wouldn’t make scraping sounds against a ceramic bowl that would hurt my head. That is who she is & how much she cares. Drank a lot of mint tea.

Around 9 or a bit after I took a 1/2 an ambien. Slept a little, restlessly, having lots of sweats, trying to find a not-soggy part of the bed. Woke up & got up several times. At 1 or 2 am I took the other half the ambien, had woken up with this terrible bone pain in my knees and thigh bones & elsewhere. Have had that a couple times now & its why the doc checked me for the rare leukemia (test negative). Took more pain meds, every vitamin I could stand to swallow, in case the pain was from nutritional deficiencies, and ate a luna bar, which is loaded with vitamins & is a soy protein based nutrition bar. Thought maybe it was my body cannabalizing itself.

Slept restlessly the rest of the night, up & down, pain better but sweats a lot.

I see dr z in mid-december, btw, thinking thats a good thing. Something is really wrong, maybe its all stemming from the leaky gut, I don’t know.

Just to be sure you know this, but CFS does in fact kill people, its a slow process, but there can be damage to all sorts of body systems, not just a fucked up immune system, and also a much higher risk of certain cancers.

Because I’m me, with the aspergers & all, I don’t want to be beating around any bushes here. I am trying to keep fighting this, to keep going until Rhia is at least 18, and I need you to keep going & taking good care of you in case I don’t make it. Rhia and I have discussed this, that I don’t think its going to be too long now, and I can’t explain it, its just a sense of relief that the fight & struggle is almost over. I’m ready, I’m not afraid, and can feel & see God’s hand in my life.

Maybe I’ll be surprised and live to 90 like you will, but maybe not.

I had a lot of time for thinking last night while I was locked in my room, avoiding light & sound. I’m working on a necklace that will be mine, but as I was sanding amber in the dim light with my eyes closed, I was thinking about getting it so the edges are very soft & rounded, because while its going to be mine, it will be Rhia’s when I’m gone, and it was like I could see her nursing my granddaughter someday, and the baby was playing with it as she nursed, looking to all the beautiful colors hidden in amber.

I decided as I worked on this piece, trying to focus on it to exclude the pain in my head, that creation is the key – that as long as I can create things, even if it takes me months to do what someone else could do in an hour, that made it worth the pain that comes with keeping going on (that and Rhia, of course). Its so satisfying to know that even if I’m sometimes, often, useless, for anything else, I can still create something beautiful to pass down, and one day it will be Rhiannon’s, as amber & fossil ivory should and often do become family heirlooms. She can re-string it to take out anything she doesn’t like, or to add something new, and in that way, she can feel me around her even if I’m not here.

(My mother interjected that she thought I should be in the hospital.)

Nobody’s putting me in the hospital. There is no reason, nothing acutely wrong with me. I don’t have pancreatitis or something like that that can be treated by doctors in a hospital.

I’m just going down the path here, the long and winding road of chronic fatigue syndrome. I’m not on the verge of dying right now, at least I don’t think so, you can never tell about these things, I’m just slowly fading away.

And that’s okay. Really, it’s okay.

It might take years yet, who knows how long, and no one can give me a better place to be than here. Home. With my crazy pecan pie dog and pumpkin pie daughter. With my woods around me, with my stones and beads and my sanding supplies and my dremel, which is very very important right now. With all the strange things I eat, with my soft and snuggly bed.

Home. This is where I want to be. This is where I’m staying. No one is taking me away from here, there will be no hauling me off to the hospital at the end, WHENEVER that might be, whether it’s a year or two years or ten years – I’m not going down that road of being poked and prodded, stuffed full of drugs, IV’s and god knows what else. NO! Absolutely NOT!

WHENEVER I pass it will be looking out at the sky, looking at the trees, listening to the animals, at HOME. The way it ought to be!

BUT I am not dying right now, I’m not saying that – just that my sense is that there comes a point there is no going back to health, and my sense is that we are there, have been there, for some time. I’ve been sick a LONG time. I’ve been struggling a LONG time. I’ve seen every doctor, tried everything anyone coulld think of. But sometimes, nature must be left to run it’s course.

My head is hurting me & the clouds are sitting on the mountain – we are socked in. That’s about how my head feels, too – too full and pressure building in my ears. I am coming to hate migraines.

Rhia & I also talked about the diet to heal leaky gut, with all soup & broth for 2 weeks. She thinks we should try it & is more than happy to make the soup. She is the one who has to pick up the pieces when the migraines are really bad like last night, and tiptoes & silences the dogs when they bark, brings me food & tea, and listens to me moan & groan about it. I think she is as tired of them as I am.

One thing you should understand is that light & sound sensitivity and headaches “of a new and unusual severity or frequency” is one of the hallmarks for diagnosing CFS. There are people with this who get so bad that they have had to move out into the middle of nowhere, and live in their beds in a darkened room.

There are people – and I know them – who cannot speak above a whisper, because even the sound of their own voice hurts so bad they can’t stand it. People who have to write out what they want on the bad days, and live their lives stuck, in the dark & silence, for YEARS. Where even the sound of a bird singing is enough to make them throw up from the pain.

You do not know it, but you are very lucky. Because I can still get on fb, still get on the computer sometimes, still send you messages and letters and rants when sound hurts so bad that I CANNOT talk on the phone. Last night you called when it was so bad, and I had it on vibrate, and just the sound of the phone vibrating made me dry heave.

I know you get tired of typing, and I know you just want to hear my voice, but there are times when that is just not possible, when you cause me pain and increased nausea just by calling, even if I don’t answer. There are times when the phone lights up in my dark room, and just the light hurts so bad it makes me heave.

There is nothing at all unusual about this, nothing that makes this something to slap a person in the hospital for. This is just how this illness is. It’s what it does. You don’t hear about it much because doctors don’t understand it, and the people with “late stage” CFS are too sick to leave their beds, quite literally, and their families are too worn out from taking care of them.

This is just what it is.

I’ve finally come to peace with it, at least a little bit, I’ve finally come to understand that this is how its going to be, locked in the living death of CFS. That’s what we call it – living death. And the end, when it finally comes, is welcome. Is a relief. Because you cannot live this way without going nuts eventually. That is why the level of suicide is so very high – you cannot imagine how horrible it is to be in such pain, such isolation, cut off from your hopes & dreams.

I coughed – swallowed my tea wrong and a very large puppy came to see if I was ok. To look into my soul until I told him I was alright. Life never ends. The spark, spirit, and soul, that we are never ends. He came back to us so soon so we would understand that.

I have to go now. My head hurts & I need to rest. I’m sorry I’ve upset you, but you know how I am. Blunt & to the point. No hidden truths. No secrets. No little white lies.

Finally, A Place To Call Home

Sometimes, the truth hurts. But better the truth, and understanding, than living in confusion & conflict, imposing your values on someone else. For those that this hurts, I’m truly sorry. You’ll just have to believe me that it was as hard for me to write, as it will be for you to read.

I’ve spent much of my life looking for a place to call home. There have been many houses & farms, but I always knew they were temporary, the best we could find at the time, or the best we could afford. But until I found my humble cabin the woods, in my beloved Blue Ridge Mountains, 11 years ago, there weren’t any that were really, truly, home.

I had started to think maybe I would never really understand what it was to love a place so much that it was your heart’s home, that maybe I’d always be a gypsy, staying a few years here, a few years there.  But I’ve lived here longer than I have ever lived anyplace else, and don’t ever want to leave.

I’ve finally set down roots.

Even when I was growing up, where we lived was just a house, though, of course, I would say things like, “Let’s go home,” but it wasn’t home, not in my heart.

I have some vague memories of the house I lived in from 7 to 16 – a large, suburban house, backing up onto a swampy patch of woods. I had everything I could seemingly want: loving parents, clothes, nice furniture, more toys than any kid needs…  but still, it wasn’t my home.

My home was the Woods behind the house.

My spirit-sister, Daphna, and I ran those woods, usually barefoot in all sorts of weather, lest our shoes show we’d been into the “forbidden zone” – the area around the creek we loved, or elsewhere in that muddy patch of forest. We’d stash our shoes under a bush, and take off.

We knew every inch, every corner, every tree. We tracked the raccoons and other critters that lived there. We learned about wild plants; built rafts that always seemed to sink; caught tadpoles; found beautiful stones.

We ran like the wind, or the deer, as only a child can run, with utter freedom and abandon, leaping from rock to rock, and walked fallen tree-bridges, in total confidence, without fear.

But we weren’t supposed to be there. We were under orders to only follow the path that led to the small park, to play on the equipment there. I distinctly remember my mother telling us that if we went to the area of the creek, we might get bitten by a snake, or a rabid raccoon. That didn’t stop us. We went anyway.

I remember very clearly, standing one day on the path that led back to the house, as it started to get dark, when we were due back. Looking up at the house up the hill, I saw not a home, but a box; a prison; confinement; misunderstanding.

I was a round peg being forced into a square hole, and I hated it.

I dreamed of running away, to live in the mountains. Several times a year, we would drive the hour out to the Skyline Drive, which runs atop the Blue Ridge Mountains, and there, that, was my heart’s desire: woods that stretched for miles; babbling creeks; great weathered rocks; the glory of the Fall leaves; the beauty of the Spring flowers; breathtaking sunsets.

I remember being in the back seat of the car, looking out the back window, tears running silently down my cheeks as we would drive back to our house in suburbia.

Without Daphna, and the Woods, I think I would have gone crazy, and when she moved away, when I was 12 (?), it absolutely devastated me. The Woods were totally forbidden to me now – without a friend to go with me, I wasn’t allowed back there.

You can blame it on the Asperger’s if you want. But it was – and is – much more than that. It’s feeling things other people don’t. Remembering lives that happened before this life.

It’s valuing things other people don’t, and not caring at all about what they do.

It’s wanting something totally different from the people around me.

It’s still that way, with a very few exceptions.

After a lifetime of being a gypsy, moving from house to house to house, I finally found my heart’s home, here in my beloved Blue Ridge Mountains. It is only a humble cabin in the Woods, small by many people’s standards, always disastrously messy & cluttered, and often actually quite dirty (in the real dirt sense of the word – my beloved dogs track it in, and without energy to clean…).

But it’s my home, finally, a place I’ve set my roots down, after so many years of searching. A place I’ve set my heart and spirit to rest. And I love it.

Living here isn’t easy, especially for a chronically ill person. The driveway is rough by anyone’s standards, nearly vertical, and impassable in heavy snow. The house is not well insulated, if it’s insulated at all. It was built to be a weekend retreat for suburbanites from DC, not a full time residence. The kitchen is smaller than most bathrooms, which makes cooking in there rather difficult. The paint is peeling, and the siding could use replacing, and the floors could stand to be sanded and re-stained.

But what makes it home is it’s location, in my beloved mountains; the 3 sliding glass doors that open onto the screened in porch and large deck with the breathtaking beauty of the mountains beyond; the open floor-plan & soaring ceilings; the way it sits back from the road, so we have  privacy; the screened in porch that I use for carving my beads, all year long, protected from all but the hardest rains and fiercest winds; the yard the dogs, so absolutely necessary to my life, have easy access to.

It’s the quiet seclusion, so necessary when the almost ever-present migraines strike; the silence, away from sirens, with little traffic, no noisy neighbors.

And even more, it’s the trees in all their Autumn glory; the radiant sunsets that light the whole sky; the deer than amble, unafraid, through the yard; the great weathered stones that are everywhere; the trilliums, lilys, and daffodils we discover in unexpected places;  the violets that blanket the “yard” in Spring; the raspberries that fill our bodies with their all natural goodness; the well water that cleanses and purifies us, and runs through my veins.

What we have here nourishes my soul, feeds my restless spirit.

I wouldn’t trade my home, this land, and these mountains, for all the money in the world, or a million dollar house, or what you may think is an “easier” way to live.

You may not understand, and you may not value what I do.

All I ask is that you accept that I do value this life, here on the Mountain. And that without it, I see little point in going on.

Unless you are as sick as I am, you cannot know what it’s like to live every day, so sick, so tired, in so much pain.

You cannot know how it sucks the soul out of you.

Autumn Sky

Here, I have the chance for the only joy I will ever again experience.

Here, I can turn my head, from my big bed, and look out into the trees, the sky, the sunsets.

Here, the moon shines on me as I sleep; the stars light the sky overhead in a way they never can in the city; the meteors streak through the night and can actually be seen.

Here, I can spend my few minutes out of bed each day watching the ever changing world around me; see the many wild things we share the world with: the spotted fawns, the graceful bucks,  the elusive fox, and thrill at the flight of a hawk high overhead.

Here, I can sit in my hanging chair, on my porch, and rock for as long as I want, totally absorbed in watching the incredible beauty of the world around me.

Here, finally, is the place I call home.

Winter Sunset

Wolfdreams: Message In A Bottle

Note: This post is about my spiritual path, part of the Wolfdreams category of my blog. It will likely not make much sense to many people. But it makes sense to me.

The message was short and cryptic: “Follow the Patterns to the Stillness within.”

I had been resting, which became meditating, which became journeying. It was the voice of my Guide, reminding me of things that happened long ago, and of an ability seldom used. I scrawled it down, lest I forget.

I had remembered…

I was quite young. I was setting the table for dinner, putting the silverware out by the plates. I picked each fork, knife, and spoon, out carefully: I had to get the right ones. It was not a question of there being different sets of silverware, and needing to get ones that matched. No, it was much deeper than that. I wanted to get the ones that belonged out that night, and to put them at the correct place on the table – picking out the one particular spoon that just felt right with the one particular fork and the one particular knife.

My mother thought I was confused about where the knives, forks & spoons went, but I wasn’t. There was just a feeling of rightness, of belonging, when I put certain ones together in certain places. My mother was impatient with my slowness, and took them from me, and set the table, while I tried to understand why she didn’t follow the flow of rightness I felt.

Much later in life, I still feel it, but not often, not as strongly. Usually, it’s when I’m being creative:

Stringing a necklace, beads arrayed around me. Sifting through a dish of near-identical beads to find the one particular bead whose energy just fits with the other beads I have strung, Trying out different combinations of beads to get them right. Not because of how they look together, but because of how they feel together.

I eventually started calling this Patterning. Arranging things so that they fit into an invisible Pattern, where the energy will flow more easily. Something which I could feel, sometimes, but not quite see.

We know now, through physics, that everything vibrates with a particular frequency. Even things that are virtually identical in appearance vibrate in their own particular way.

Is that what I feel and sense? I don’t know. All I know is that to feel it, the invisible pattern of rightness, I have to be at a very still & quiet place inside. Words cannot be flowing non-stop through my mind.

People spend their whole lives practicing meditation, or prayer, towards one goal: silencing the mind and stilling the soul in order to be open to the voice of the Sacred within.

Silencing the mind is the tough part. I remember the moment I started thinking in words, rather than experiencing life in the moment; allowing things to happen without spending time thinking through them from every angle; without the chatter of the noisy mind filling up my head. You know what I mean, I’m sure – the mind goes on and on, never ceasing with it’s chatter, about everything, every aspect of our lives. Words fill our heads constantly. We “talk to ourselves.”

What I felt as a child, in that moment when I realized the silence within was gone, replaced by words, was a deep sense of loss. I was very young, but I knew that something priceless had been irrevocably lost.

I’ve never known anyone else who remembered the moment they started thinking in words, although I haven’t asked too many people – the strange looks I got after the first couple of attempts were enough to persuade me that others didn’t experience life the way I do.

Maybe, it was an expression of the Asperger’s Syndrome I didn’t know I had until recently. Maybe, people with autism can see and feel things that other people can’t, but which are very real, nonetheless, and are interacting with those things. I know only my own experience. I know I was bewildered at the seemingly random way people did things, and I was acutely aware that other people didn’t feel the need to follow the patterns I saw. My mother says I used to stare at her a lot, as if I was trying to figure things out, and indeed, I was.

The message from my Guide, “Follow the Patterns to the Stillness within,” was like a message in a bottle washed up on the shore; a reminder of the past, and a pointer to the future. To let go of my thoughts more; to spend more time with a still mind; to follow the sense of rightness that comes with certain actions; in order to return to that place of peace, stillness, and quietness, so I can hear the voice of the Divine more easily.

In some ways, you could compare what I feel to the way a river flows. You can spend your life fighting the flow of the water, or you can give in, let go, and let the current take you where you are intended to be.

I think I’ve spent far too much time fighting the flow. Time to let go.