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For me, some days are good and robust, while other days are lack luster and wanting for more. Well, that isnt entirely accurate. Lately it feels more like some weeks are this way. A CFS crash can come in a variety of flavors. Sometimes it is less energy, sometimes more pain, but always an exacerbation of symptoms I normally have.

Over the last couple months, it comes in the form of insecurity that then brings its friends, anxiety and sorrow. I have been struggling with this emergence of mine from a life lived in the peaceful shadows of my cave, into a new life filled with many new people who know me for who I am. A woman with CFS and MCS so debilitating that she has had little choice but to live in a tent and is finally speaking out about it.

It is very difficult at times to live this unconventionally. All our lives, our sense of rightness and belonging is developed by what we see around us. I dont see many people living as I do which brings to this situation a feeling of freak show that can be hard to dismiss at times. Were I living in a country with a majority population who lived in huts or other more nomadic style dwellings, this would seem like more of a normal way of life. But in America, living in a tent year round regardless of snow, cold or other weather is anything but normal if you are not doing it as part of your job.

This is all compounded by the fact that while I chose to live this way in order to safeguard my health as much as possible, I do not consider that much of a choice. Ask a person if they would rather live in a tent for eight years or face the possibility of a health decline that may end in no life at all, the answer seems pretty obvious. Though at times, the alternative does hold a strong sway upon me.

The numerous trips to town in the last month for testing and to see the doctor have been taking a steadily increasing toll upon my mental fortitude against these feelings of insecurity, isolation, and loss. It is a form of culture shock at times, to be reminded of all the seemingly simple things in life that you lost years ago. While speaking to people it can be easy to forget these fragile nylon walls surrounding me and instead step for a moment into their world of warm, safe homes and work. But in the quiet moments that fill the gaps of a day, these walls take on a solidity that continues to defy my attempts to break free of their grasp.

I will not stop looking for safe ways to move indoors but the thundering sound of rain upon my tarps today is a constant reminder that Winters inexorable approach draws steadily closer. Hunting, searching, and never truly resting because my mind is like a caged beast that can not help but pace the confines of her cage while waiting for the day that will bring release and freedom.
Likes: rosie26


You are not forgotten, my friend. :)

Never. :)

I don't guess that helps make the rain or cold any less intrusive. But it'll help the feeling of isolation a bit, I hope.

If it were only a matter of will, I'd have willed you out of that tent into a homey shelter months ago. But you already know that.

There will be way, where there seems to be now way, for you to walk into a new place.

Soundness will come. :)
I think the title came to me mostly because its as though life forgets about me sometimes. Like, the life I used to have full of sunshine and daydreams but all from a relatively safe situation, it just one day forgot about me and went on its merry way.

Hard to get even the most basic things back now because even though I remember them, they don't remember me.

Thanks for posting Jody. :)

Lisa :)
hi Lisa great title -

i'm adding myself to the list of those thinking of you. Pre-ME/CFS I travelled a lot. One of the things I loved was Tibetan prayer wheels and prayer flags - the idea with both being that the positive thoughts expressed, either in writing on the flags, or on the center of the wheel + whatever people say as they turn the wheel, are taken by the air and sent out across the universe. I still love visualizing these thoughts taking flight, floating, racing away and somehow changing the universe. So now some more are heading your way.
Hi islandfinn. :)

That is a lovely visualization you shared. I really like that.

Thank you. :)

Lisa :)

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