How quickly one forgets. That's probably a merciful feature built into the human mind - a natural survival instinct, so one forgets how bad it can get. Three days ago spring announced itself in the Cowichan Valley with a clarion call of sunshine at 15 degrees Celcius. Sitting inside in the protection of my house, I could still feel the ultraviolet and sensible heat penetrating my windows, and I felt the accompanying wave of body weariness that is a hallmark of its reaction to ultraviolet radiation.

It's hard to describe chronic fatigue to the uninitiated. You might subscribe that feeling you get from a day full of pleasant exertion in the garden, or a frantic weekend of spring cleaning before the family arrives for a holiday, that feeling of gently aching muscles and nodding sleepiness, an almost smug acknowledgement of a job well done. Chronic fatigue is nothing like that.

There is no feeling of achievement, no feeling of accomplishment within one's body. There is only the awareness that you had something - energy - and it was taken away. It is hard not to mourn the loss. Like anyone else, you still have that garden to keep up with, that spring cleaning to do, that frantic preparation for the anticipated arrival of a loved one's visit. What you have, though, is nothing. No self-exhortation, no appeal on high for strength, can bring that essential life force back into your body to animate your flesh. You are decimated, laid low, and there's no congratulatory victory of a job well done to console you. There's nothing.

Nothing looks wrong with you. Nobody sees any reason why this terrible defect has arisen in you. No one understands why -with the slightest strength or character of will - you could not forcefully animate your body off the horizontal surface it seems to have melted upon, in a Dali-esque protest at the three-dimensional nature of life. You long, you wish, you rail, but nothing you can do can revive something that is fundamentally "not there" in your body. Energy.

As I glanced outside, at the long-awaited (by someone) spring on Monday, I felt that mysterious quality zapping the very energy from my body. I felt not the approaching season of sun, growth, fun, and socialization. I saw limits creeping in, hiding from the sun of my youth, longings to finish summer projects passed on for another year, a garden springing into bloom and making hay without me, and me, hiding like some vampirish invalid from the excesses of light and heat.

Strange how soon I can forget what it feels like, when spring arrives, and the realization that once again, life is going to change, until the cooler weather comes back - until the rains come.

Depression was my first port of call - rather strange to understand for those who have been anticipating the return of the sun. How strange to be tossed so low by the very thing that brings so much joy. Surely it's not my body, but just my mind that is playing this dirty trick on me. It doesn't take much longer to feel totally drained, devoid of life, to realize that this is a very real, physical phenomenon, and it has begun.

The advantage of those well-worn neural paths of depression is that for a moment, you see an out. You see "not being" as a perfectly natural alternative to the coming struggle. There are no great thoughts of self-violence. I'm too tired already for that. But my brain convinces me of a little fantasy in which I go to sleep and don't wake up until its raining again.

The world shrinks in, at its most expansive season, and I see that life is going to shrink with it. After two days of exhaustion, I begin to make a new plan. I plan to contract, to shrink with it. This is not giving in or giving up. This is modifying my life to fit the energy available. Projects I've had on the shelf for too long need to be gently set sail once and for all, and let go. The list of demands on my time - work, volunteer, and otherwise - that never left that much for me anyway, must also be pared away.

With gentle deliberation, and a care for me that I never afford myself (having somehow not earned it) I begin to make new plans this year. I contract, withdraw, and - in being kinder to myself than I can ever remember being - I go to ground, to the cool, underground caves, to wait the return of the rains. At that time, I can rise back up into the world and take my place again fully, but until then, I will lie in darkness, and wait.

The most dangerous thing you can do when you have a tendency to dissociate is to try to be unaware. However, when the physical and mental self brings you a great deal of pain, it's unavoidable sometimes. Being possessed of a legacy of family and friends who purport to know you well and urge you not to reflect on it (it being pain, emotion, or thought itself) is not helpful.

It would be easier I suppose to be blissfully unaware - to float through life unconscious in a sea of forgetfulness. But is it really living? Sometimes you have to stop floating, right yourself, kick through the currents, take in a lungful of air and water, and wake up.

In being authentic, I am forced to look at all those aspects of myself that others find shameful - that others feel I should rightly dissociate from. It would be nice if I could be totally palatable, sweet, digestible, and somehow acceptable all the time. But then it wouldn't be me. It would be the persona you want to see. And yes, I have a lot of skill in displaying personas. But imagine if you loved me well enough to want to see the real me, whoever that might be at the time?

I want to come to see you, to meet you on level ground, to talk as people who know and love each other. But I'm afraid that the familiar masks might fall over my face and I would become, once more, the person you want to see. Not the person I am.

I'd rather be here out to sea, treading water to stay afloat, dipping into the waters of awareness, than the automaton you claim is me.

I have changed so much. Will you ever change enough to really see me?

I remember the first time I felt this tired. Not the exact hour, day, or even year, but I remember the quality of it. I was at the sink, preparing vegetables, and I got so tired that I had to sit on a stool, my arms propping me up on the sink. I was about 28 years old. I'd already been sick for five years, with an invisible disease that could not be seen. I had already had enough of doctors for one lifetime, and had perhaps had enough rejection of my condition - and by extension, myself - for more than one. There is something crushing that happens to the mind when a person of integrity is told they are a faker. It seemed my body conspired with the doctors against me in a grand lie, and even when my blood revealed the evidence of disease, it was somehow easier to write it off to a mental defect. And yes, I never admitted to being sound in that regard, however, on the journey, I lost a fundamental truth. The body knows when it is ill, and the mind knows enough to compare the body with disease to that without - to know the difference.

Therefore, it was quite a comfort to visit my rheumatologist last week, and to be told (to the highest certainty that any doctor is prepared to make) that Sjogren's syndrome is my primary diagnosis, with secondary fibromyalgia. And that Sjogren's, in and of itself, is enough to fit the picture of my symptoms - the pain, fatigue, etc, that can make daily living a grind at times. It was enough to talk to the doctor and be believed, to be a participant in my treatment, and to realize that, given that respect, I was free to believe myself. Why would anyone fake a disease, only to be scorned, disbelieved, and often told that their suffering was not anywhere like the quality of that of individual X or Y, when an individual Z decided to take it upon themselves to weigh people up and make a comparison.

I know better now than to let myself stay attached to such individuals, when the goal is to negate my experiences, shame me for speaking up, and condemn me to silence. I will not be silent to satisfy them. No more. I suffer. Sometimes the pain is so great that I wish to die to get relief from it, but that is not a solution that will sit easily on my soul, and certainly not on my wife and children, who would be left to pick up the pieces. So it is left to me to find a way to live with this, to seek treatment, but above all, speak.

If my speaking of it tires or bores you, irritates or disturbs you, that is okay. That is your reality, and you are entitled to it. This is mine. You do not have to listen to me speak. You can close the browser window, you can surf to another page. You do not have to pretend to be a friend or even an acquaintance. I release you from the burden.

But for those who suffer in silence, trapped in their homes, behind their computers, in their chairs, in their beds, I will keep speaking.

Yes, I remember the first time I felt so tired. Today, leaning on the sink, preparing the vegetables like I did 14 years ago, I remembered. It seems like it would not take much to make me crumble. But inside, there is a part of my soul so strong, it will prop me up against the ravages of disease. It will make me go on. It will make me seek treatment, and seek an answer. But it will never silence me again.

I have decided to take a break from much of my online activity. I find myself in a place where I need to draw in a little and heal, and have given myself permission to simplify. I do not know when I will next post here. It could be tomorrow, it could be months from now. I give myself the freedom of choice. If in some rare instance you might want to reach me, please use the form on the contact page.

I am holding the world in my heart, with wishes for love and healing everywhere.

Love Jane

I have found a sanctuary in my new homeland. It is a place of magnificent old growth trees, which talk softly to me as the angels and sprites float under the canopy. At a time when I am struggling to find roots, nature has once again done it magnificently for me.

Even should my irrational fears of losing my voice come true, nature will speak for me.

A friend of mine is fond of the saying: "The only permanent thing is change." That maxim has been true of my life recently, and will be for some time to come, I am certain. Words have circulated in my head. I have planned journal entries that flow seamlessly while I am measuring the streets of the neighbourhood with my feet. Yet, when I sit down to write, the words are censored: they choke, and somehow I do not make time to allow them to flow. Inside, I am snarled in the weeds, stagnant, unable to move, while outwardly I seem to be making progress, as evidenced by the movement of one foot before the other.

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Sometimes I feel like I'm speaking into a void, but the void is of my own making. I step closer to being authentic, to being who I am, but I hold onto the fears of who will judge me, what will people think, etc? Many years ago, a counsellor told me that I needed to make the shift to being inside my own head, my own skin, instead of being on the outside, looking in, from a dissociative distance.

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Not for a long time, has a place sung "home" like this one does. It's all been so quick - the work so hard, the ensuing body flare and pain so overwhelming - that the mind really hasn't caught up with it yet. This place is ours, our new home close to sea, mountains and trees. Fog wraps the mountains, Canada geese congregate in the nearby field, and underneath our very window, amidst the perennials, a lonely maple turns yellow and seems to shout with the miracle of it.

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