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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Living Outside the Camp

It is a fearsome thing to find oneself living outside the camp.

As the sickness of Chronic Fatigue Syndrome causes the circle of life to shrink, as the chronic element reduces our contacts with other people, we find ourselves moving (or being moved) further and further away from the campfire.

And as we lose more and more of our ability to take care of ourselves, the need for help from other people in our lives becomes more stark. The less we have of it, the more we are aware of how much we need it, and the more helpless we become ... and the more aware of our helplessness.

Terror inducing. Rage inducing. Grief inducing.

And all the while, the illness has rendered us unable to fill our days with positive satisfactions or even mindless activity. Activity ... just isn't on.

Lie in bed staring at the ceiling. Sit in a chair staring out the window. Stare at a TV screen. Though many of the most seriously ill can't do that, it stirs up neurological symptoms.

Hobbies? Can't do them. Reading? You've gotta be kidding. Call someone? Not during times of extreme crashes or maintenance lows. Conversation becomes impossible to partake or to follow.

So ... meditate or, too often, brood and fester about the losses.

The lacks. The glaring absences.

The gaping holes.

And hope to blazes you don't fall through one of them and plummet .... to a place of no return and complete ruination.

I have lived there, in that place outside the safety of the camp, for some years. Underlying all was a bedrock of terror and anger. I was terrified of what might happen to me because, outside of my family and later my naturopath, Dr. Upcott ... I was alone. And I was furious to find myself this alone.

I was stymied to realize that if I were to simply ... disappear ... I would make scarcely a ripple as I went under, and hardly anyone would even notice that I was gone.

I'd like to say that I perservered and overcame this terror and anger by sheer virtue of my character. But that didn't happen. The only reason I am no longer distraught, obsessed and devastated about my distance from the campfire, is because I'm not as far away from it as I was.

I know I'm very lucky, as I survey the world of the chronically ill. I have a family that loves me. I have a naturopath who is healing me and believes in me.

And, I have a computer.

Because I have a computer, I have been able to find work freelancing online, for people who I admire and trust. Making some money helps bring me closer to the campfire. You better believe it does.

Because I have a computer, I've been able to become part of a couple of online communities, a CFS forums and Facebook.

I once again have a face, a name, a presence. I cast a shadow after all, create tiny ripples that I can see for myself are really there, and have an effect on someone in the world. This has been gradually opening and unfolding over the past year and the novelty of it has not yet begun to wear off for me.

To make a difference. To be known.

To be anticipated and welcomed, and missed when it's time to go.

There are times I still fear that it might all go away again. I know it can happen. I've just come out of an extended exile and I'm not eager to go back.

But this I know. The sicker I got, the further away from the campfire I was dragged. And the further away I found myself, the sicker I got.

My naturopath has helped me to regain a good deal of my health, and we are going for the complete package. As I became healthier -- stronger, steadier, better able to make my brain work again -- it has become easier to do what was before impossible. Bring myself back into the presence of others.

And I see very clearly that at least for me, at this stage of things -- it works both ways. The more ill I am, the more it cuts me off from the world of humanity. And the more I am cut off from humanity the harder it is to recover from being ill.

Fortunately for me, I'm moving in the right direction now. The more I heal, the more of life is accessible for me. And the more I access that Life ... the healthier I become.

I'm aiming for a front seat at the campfire. And then I'm going back into the shadows for the ones still outside the camp.


Thanks, Jody, for articulating this so well. It is true the sicker we get, the further from community we too often become, just when we need community the most.

I am so grateful for the community here. It has brought so much to me, and eased so much of my loneliness. It has also strengthened me so that I can reach back into the shadows to some less fortunate than I. Thanks again.
I love this and it is exactly how I feel at this time. I am going further from the campfire and I am becoming cold, angry and alone. I am so glad you are closer to it. Thank you for writing this. It is so how I feel.

To a fire burning bright, may it keep us warm, even if only in our hearts.
The campfire allegory is perfect. Very well put, Jody. Here's to virtuous circles, may all downward spirals be reversed.
Thank you for your insight :)
We are very lucky to have the internet. I cannot imagine having this disease without it. I didn't have a pc in 91 when I got sick, but I had met two good friends at a local support group. So that got me through until I got my first pc around 95. Being able to meet others with this, is a blessing. To know you are not alone.

Good luck with the naturopath.

This place has made a huge difference for me as well. I know that feeling more solid as I have these past 9 months has had a great deal to do with having stumbled across the forums last summer. It's so great to have relationships again.
Hi Spitfire,

I'm glad you love it, and I'm sorry to hear that this is how you're feeling. It's a bleak place to be. And yeah, it's gonna make you angry. Until the situation changes. We must expect the situation to change though, to my way of thinking. Somewhere along the line, I began to force myself to expect things to change, for some soundness to come. Even when I didn't really expect it, I made myself add it to my ... thoughts about my life.

Over a period of time I became both angry and fully engaged in my terror and anger, and ... hopeful. Did being hopeful help to make things change? I don't know. But it helped me hang on long enough for things to begin to change.

I will second that, about the fire burning bright to keep us warm ... but I am shooting for it to be more than just in our hearts, though that is essential. I remember a time of being without that, and it wasn't pretty. I am gunning for the fire in every aspect of our lives. The food, the shelter, the medical care, the relationships, the safety, the community ... All of it.

Thanks for writing, Spitfire.
Hi jace,

Thanks for that.

I agree, let all downward spirals be reversed. And may the upward spirals be magnified, and increased. And multiplied.
Hi Carrigon,

I didn't have access to a computer for a few years. Part of that time we had one but I was too sick to use it. Then, we had one ... but I didn't know anyone anymore and had nothing to say anyway. And then we didn't have one. :)

I was really lucky to find this place in its infancy. I am not much of a joiner in general, and especially not big enterprises. I like stuff small. :) If the forums had been big like they are now ... I probably would never have stopped in. As it was, I just came by because I saw Cort posting ... and nobody else.

I had read his stuff for a year or so and really liked what he was doing. And I'd just started my website and asked him for a link. He not only gave me a link, he interviewed me and stuck it on his blog, with much encouragement and praise -- which is Cort Johnson's way. :)

How could I not stop in and try to get a conversation started? :)

Point being, ... it was just the right size for me. I'd joined a forums one or two other times and it just never clicked for me. I'm glad this one did. It's been pivotal for my life this year.

I'm so glad to know everyone I've met so far, and looking forward to all the people I will yet meet here.

It's going really good with the naturopath.

Thanks for writing, Carrigon.
I like Gen's idea. I will also say that one of the things this illness has done for me is sent me on journeys deep, deep inside. If I can get there, the anger dissolves and the revelations start pouring in. Not saying it happens all the time, but I am saying that lacking neurological function and my usual ways of dealing with the world actually helps this process. It's true I was inclined toward this kind of thing before my illness and have learned some ways to get there - but honestly all it takes is willingness to open through the brain fog and trust that there is something there for me. That's a lot, but it doesn't require health of the brain or body.

However as Jody says so well, so poignantly, it's easier to be cheerful about this because I am getting better (on the Hidden Story B12 protocol). Getting better means I'm more able to be in touch with people, and to do things other than the bare minimum, which makes me feel more human. I'm doing my best to learn to open to the beautiful view whenever I can, because sometimes that makes new things possible. That doesn't mean I'm pretending life is a bowl of cherries; I think it's necessary to give a place to the pain and despair as well.

Recently I read some of a book called Feeding Our Demons, by a Buddhist nun. She recommends feeling where your demons are in your body, then saying hello to them, asking them what they need, listening for an answer, then making our bodies into a nectar to feed the demon, who now becomes our ally. After practicing this, give yourself a chance to just float in the void. All of this is actually made easier by what we call our incapacity; in some ways, cfs puts us in a meditative state all the time. It's just hard to live in the world that way.
I just love campfire's the crackle of the wood and the smell..the sounds of the nightlife. Lol what a big difference between campfire's and computers, if I have to choose well the computer + Internet of course. Sometimes I go to YouTube for a video of a waterfall and nature sounds and then just stare at the screen seeing myself sitting on a rock somewhere near, feeling the spray of water on my face, listing to the birds, feeling truly happy...

Thanks Jody, that was a nice read, compassion is worth more than all the riches of the world...we go through hell and back to develop that spiritual fruit to perfection, it is just sad that some choose to become angry and bitter, not just cfs, ms or any sickness.. any road of pain and suffering.
Hi Gen,

I guess in a way that is what we're all trying to do here, firing up our own campfire and trying to draw the attention of the world to it.

Nice insight.

And, the fact that we all have a healthy and compelling need to be connected to this world is what draws all of us here. So glad to have this community. :)
Hi Sunday,

I too have always tended toward the inner journeys. That has stood me in good stead in some respects in dealing with CFS. Most of the insights and choices I've made that have benefitted me have been in one way or another the results of this inner search. Much of it would never happened if I hadn't needed to go so FAR inside, because of CFS. And much of it has surprised me, not the insights I'd have expected to find.

You are very expressive about these things. They can be so hard to articulate. Thanks for saying things so well. :)
Hi enough_is_enough,

I guess really we all have a choice to take the high road or the low road while we're dealing with this illness and all it has brought upon us. I have done both at different times. The high road ain't always easy but in the long run it is less painful and more fruitful.
Jody, I'm simply blown away by this. You have said it so well, there is nothing more to say. Except maybe one teeny thing. To badly paraphrase Dr. Bell, living a productive life is a measurement of happiness.
I used to have 1000 acquaintances and at least 100 "friends." Today I have barely 10 true friends, but I wouldn't trade these 10 for the other 90 I "lost" due to this illness. ""Friendship is when people know all about you but like you anyway. "
I thought I recognized your writing when I saw this on the PR home page......another very well written article that sums up so much of what I feel.....thanks for writing!
Thanks Brown-eyed Girl.

Living a productive life ... I don't know what Dr. Bell may have meant by what he said, but what it brought to mind for me was this. Feeling productive is greatly affected by the level of health experienced. So, if living a productive life is a measurement of happiness, then ... the healthier I am, the more productive I can be, the more securely within the camp I am ... the happier I am.

Living a productive life is one measurement of happiness. Fortunately for us chronics it is not the only one. I have had months on end where I was not the least bit productive in any respect, in any way, shape or form. I was completely dependent on others and did nothing worthwhile for months at a time. But some of that time I was still happy.

I was happy to sit with my family. I was happy to be with my husband. I was happy to listen to music. Happy to think my thoughts however I chose. Happy to breathe in and out. Happy to take in the view, or the breeze, the sunlight.

I had nothing to give. Nobody even expected me to ever be able to give again. I was happy to be accepted even as I was, even always needing to be on the receiving end. I was happy when approached by the generosity of others and was happy to know there was help being freely offered up, even for someone like me who had nothing to offer in return. Nothing except my gratitude and my appreciation. And it was enough.
Hi Kelvin,

Nice to meet you. :)

Sickness and adversity have a way of showing you the flip side of things. Sucks to be in that situation, sucks to know these things that are so unpleasant to know.

But valuable. Very valuable. And they change our lives forever.

We really learn how to zero in on the things that are important. The relationships that are important. Probably wouldn't have learned this stuff any other way.

Still wish I'd never gotten sick. But I will say, there have been some important things learned through the ordeal.

That is a sweet compliment. Nice to be recognized. :)

I'm sorry that you've also felt all this and gone through all this. I'm glad to hear that I've expressed it for you as well. :)

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