Sundog –noun 1. parhelion. 2. a small or incomplete rainbow.

Posts tagged “crash

A Temporary Hiatus

Sorry for the long delay in posts. The process of finding safe housing is proving to be most difficult and has caused a marked decline in health. Jeremy and I are making it by as always with a smile in our hearts and hope in our eyes. With some luck, we’ll find a new place to live soon that is a healing environment and with considerably less stress than our current apartment.

Sundog Tales will most certainly be continuing just as soon as I’ve the oomph for more adventures! Hugs to all! Lisa


Metamorphosis

I feel as though life is currently lived in a haze of passing moments. It is difficult at times to capture what is going on around me as I’m still trying to adjust to their speed. Living in the woods for nearly 10 years was a different world than the one I life in now.

I rose when the sun was up and the animals made enough racket to wake me. Life followed the seasons and weather, Each winter I rested while dreaming of warmer days. I would initially welcome spring bringing new life back into the forest around me, then curse it for the alder tree pollens that nearly crippled me with allergies each year. Summer would come as a blaze of warmth and sunshine, drowsy hours spent resting in the sun and locking away the memory to be cherished next snow storm. The autumn would bring a welcome crispness to the air and spur me to finish all my winter preparations.

Life was much simpler as each season had its own pace and little to hurry me before the next season began to make itself known.

Over the years I would often dream of once again living indoors. Things would be easier, I would feeling safer – being warm. One thing I always forgot to add into the details was the flow life takes when you have places to be and things to do.

I feel as though time stood still while I lived in a tent, events moving around me to change the world I live in, but ultimately not touching me. I saw a war, a new president, our economy plummet, avian flu bugs, cellphone use explode to a way of life, gas prices sky rocket, the internet become a culture – all of this and more as though looking on through a one way mirror.

Now life feels considerably different. Trying to reintegrate with a world that has flown by me, it can be … tricky. Things others take for granted after years of living in the American culture of the 21st century, I am coming into having read about it, but not personally experiencing it. It’s like reading a guidebook before you get to your destination – things are familiar, but you still have to learn your way around.

While the last 10 years of illness are hazy in my memory (its surprising how quickly the tent is fading away), the previous healthy years of life as a college student and bookstore clerk are surprisingly clear and sharp. This has caused an odd juxtaposition of lives to needing to be merge: The one knows how to live in a fast paced world, but approached it as a healthy and vigorous 24 year old; verses the one who knows how to live with chronic illness and in sync with the seasons of life.

Trying to merge these two dynamic halves into a whole has been both invigorating and stressful.

Last summer I awoke in a new world and a new place, considerably changed from when I fell asleep 10 years ago. As I move through my new surroundings, I am letting fall behind the shackles that bound me, and stepping forth into the rainbow of possibility before me to discover who I have become.


Rainbows are Like Ninjas

This is what February 13th looks like from Hawaii at Waihe’e Beach, Maui. (pronounced why-hay-A)

We walked around the bend seen in this picture, then set our picnic down in our usual place. I turned around and was surprised to see this wonderful rainbow stretching the sky behind me.

The weather cleared to almost full sun, mid-70’s, and the water was warm enough for a long soak after a brief shock of cold when first diving in.

Waihe’e is one of our favorite beaches here so far. It’s a reasonable drive and usually quiet. Today it was just the two of us and a whale we saw breach the surface out past the reefs. The wave break you see in the photo (where all the white topped waves are) stretches a very long ways and provides a protected area for swimming, floating, and snorkeling year round.

So far at Waihe’e we’ve now seen many various aquatic life, a sea turtle, a monk seal, and the humpback whale.

A long, meditative rest followed by a good soak in the ocean left me feeling recharged and somewhat centered for the first time in weeks.

Waihe'e 2-13-2012 011 - BLOG

The new year has been one of great healing for me, but this is a painful healing of old emotional wounds, both from before I was ill and after, that have their thorns in daily life. It has left me drained and on the edge of slipping back into the crash of November/December. Though it is frustrating to have had only a week or so in early January where I felt as though the crash was finally lifting, it is hard to find fault when the culprit is healing.

Healing is not always easy or happy making, but as long as one is willing to embrace it, then with time you will find a rainbow has sneaked up behind you to brighten your day.


Tired.

Over the last few months it has become harder to avoid using the term “crash” as an explanation for the trend our health has been taking. Those of you who read this and have CFS, or other similar illnesses, are likely familiar with the life meaning of such a simple word and the hushed tones used to speak of it.

For us, it is the hidden monster lurking in the dark closet waiting for the light to go out after an exhausting day. Creeping up soundlessly, you wake to find only a shadow of yourself remains.

dec 2011 blog 1

In my experience, the main problem with a crash is there’s no shortcut to ending it. You can’t go to the doctor, get a new pill, and voila – you’re back to the same energy levels you had weeks or months before.

No, instead the cure is most often one of rest and pacing yourself, a gradual culling of all the nonessential aspects in life. Often essential comes down to the true basics of life – food, sleep, and keeping some sort of roof over your head whether it be house, tent, or car.

A social life is nonexistent, a tidy apartment falls down on the list of things to do, laundry piles up and you find yourself putting on the same shirt you wore the last three days in a row for lack of something clean to wear. Meals become more simplistic and you’re just happy to have something hot even if you’ve eaten much the same all this week… and last week too.

After months of avoiding the dreaded word, I have found myself quietly testing the sound of it and hearing the the sad ring of truth it brings. I’m usually much quicker to speak of a crash, much more willing to put life back on the shelf for a few months and heal.

But not this time.

No, this time I find myself fighting against the whole idea of a crash. Refusing to even think of it. Unwilling to bow down and let it strip me of all I have been working towards.

Which only makes things worse.

The energy required to fight against it should be going instead to healing from it. As much as I have blocked the possibility of a crash from my thoughts, there is no more getting around the simple facts.

I landed in Maui, had a great couple of months where life almost looked normal again, but all this also came with a monumental amount of change and stress. For the most part we are now settled in; very little needs to be done outside what is becoming a familiar routine.

Life has a chance to slow down again. It is time to rest.

Meanwhile… what a place for a rest!

Baby Beach - December 5, 2011
(photo from December 5, 2011 at Baby Beach)


Sundog Tales is on a Brief Hold

For the last month I’ve been having some persistent difficulties with my health. Shortly before moving here I received some blood work back showing my white blood cell count was low – aka, my immune system was weak.

Combine that with an enormous amount of exposure to viruses now that I’m able to get out in the world again and it leaves one at times feeling a bit under the weather. The last few months it has been a mild case of the flu or cold, over within a day or two until the next one would hit a few weeks later.

However, for the last month I’ve had bronchitis. With my history of mild asthma it makes for a bit of a mess. I am slowly recovering and doing much better than I was a few weeks ago, but still having some breathing trouble most days.

This leads to yet still more fatigue, increased recovery time for anything physically strenuous, more things feeling physically strenuous than normal, and a whole lot more time spent resting.

I have a fun project planned for Sundog Tales in the (hopefully) near future.

Until then I shall keep working on beating this virus and recovering from the strain it is putting on my body.


Life is an Ever Changing Wonder

It’s another sunny day here in the Pacific Northwest. Starting into the best time of year – not too cold, not too many bugs, and a few more sunny days. It only lasts about a month, usually most of April though this year it is late.

Life has been moving quickly for us the last few weeks. It seemed a slow, sluggish mire we had fallen into over the winter was going to plague us all spring. Then one morning someone turned the “LIFE” switch from ‘off’ over to ‘on’ and life began to take form around us.

It’s odd to say life started when obviously I’m still breathing and getting into mischief. However there is a difference between being alive and living.

This last 18 months I have found myself learning to live again and growing beyond my physical boundaries. Then the late snows in February and March crashed our health; it is very physically and mentally taxing to live in a tent during frequent snows. My world narrowed again to survival – just getting by for another week, another month, waiting to feel less awful. Thankfully an easy allergy season helped and in April we started to move past survival and back into living again.

As I am happily remembering, there is also a difference between living and thriving.

Two weeks ago everything changed in 24 hours. Living became Thriving. I think the last time we found ourselves thriving was in 2005. Before that… 2001, during the few months before life took a nose dive into the world of chronic CFS/MCS.

It’s been a long, hard road we walk in this life of illness.

The big news going along with this change is that we finally will have the means to find indoor housing. Yup, this couple in the woods will one day soon become homeless no more.

I find the prospect both terrifying and exhilarating at the same time.

Where will we go? What sort of place will we rent? I honestly don’t know, though we are planning on answering those questions this summer. With a bit of luck, we’ll be indoors by November; we’ve had enough of living outside during Winter.

Times like these it is hard not to jump into the first opportunity that comes along. Our health concerns and the restrictions it places on housing means we must move slowly to ensure a safe living situation is found.

It also means we opted not to see the naturopath last week. As we are not certain to be staying in the local area, we didn’t want to establish care with a new doctor (a costly endeavor) and then repeat the process in another few months. However, we have followed up on a considerable amount of blood work through Dr. Buscher and will know the results in a few weeks.

Where to live when the world has suddenly opened itself up to you once more?

How to get there and more importantly, how to find safe housing?

What type of change will all this have on our health?

I am looking forwards to finding the answers to these and other questions, which swirl around in my waking and dreaming thoughts.


Update

Much time has passed since my last post. I hoped for inspiration to strike and provide a brilliant return post to share – but alas the brainfog continues to shroud my muse.

My hands have healed well. We made it through several weeks of on/off snow, but then crashed and are still recovering. The majority of spring allergies never hit this year as the snow changed up pollinating schedules for the alders above us. Western Washington is still having more rainfall than normal – and lately colder temperatures too.

It has been a very long time since I felt warm sunshine and I miss its tender kiss upon my face.

All in all – survived another winter. Hooray!

I have come out of this winter with a new plan of action. We will be seeing a local naturopath on May 5th and setting up medical treatment through her. The annual trek to see Dr. Buscher will not be happening this year. The stress and body strain from weeks of snow took a lot out of us. We simply don’t have the stamina to travel two hours away to see our doctor.

Fingers crossed we hit the right naturopath first try. I spoke briefly with her and have hope she will be a good fit for us. At the least, I don’t think we are walking into the nightmare situation almost every CFS or MCS patient has experienced – the doctor who doesn’t believe our illnesses are real.

Happy Spring Everyone!


Irony

I’ve had Irony on my mind much of the last month. Less than a week after my last post on healing, I injured my dominant hand. Now several weeks later I am still not recovered and have had troubles with stress injury to my other hand as it tried to pick up the slack.

I have wondered at times – just how does a person end up homeless for 9 years with strange illness? By a random chain of events that seem ludicrous when looked at fully, but which have a large amount of irony to them.

And so, Sundog Tales will be continuing to be on hold for a time as my injuries heal enough for me to type without strain.

Happy Spring to all!


Winter is on the Way

I had intended to post back here more frequently, but my health has been up and down, especially the last few weeks.

We have gotten our winter preparations well under way. October saw us finish changing out the leaky tarps over our tent – a project encompassing two years while letting the new tarps off gas. There has been a great deal of catching up on other small projects around camp. Mostly projects that were unable to be done during our steep decline in health over the last year.

October also saw the end to my six month long sinus infection. It took a combination of antibiotic and antifungal treatment simultaneously, along with a few other additions to help with sinus drainage. I saw an initial surge in energy after I was done with treatment, but this has ebbed somewhat as other influences have sapped my reserves.

A majority of our state medical coverage is ending on December 31st this year. This has changed some of our plans for winter prep as we have had to fit in dental appointments while we still can. The good news is that cavities I had a few years ago have healed themselves. For more information on remineralizing your teeth, a good start would be an article by Stephan Guyenet at Whole Health Source called, “Reversing Tooth Decay.”

Our main struggle right now is with different viruses making homes in us. It feels like each week sees us with a new cold or flu bug. This could be a good thing if it is caused by our bodies waking up to the viruses it is host for. Or it could be a bad thing as our immune system is too weak to fight any of them off. Only time will tell the story.

I do have to wonder how much of our slump the last several weeks was caused by too much birthday fun. With both mine and Jeremy’s birthday’s falling less than two weeks apart, it can get particularly festive around here. It could be that too much ice cream lead to another Candida yeast overgrowth in our guts. Having cut all sugars for three weeks is helping lower many of the symptoms I would attribute to this possibility.

The weather has suddenly shifted from a warm Indian summer into a cold Fall. At its coldest point last night, it was the same temperature as you would find in your refrigerator. Come December, we will be living in your freezer – next to the ice cream perhaps!

I am looking forwards to the colder weather, because it will kill off the molds that have been plaguing me since spring. On the other hand, it also brings smoke from chimneys and wood stoves that is aggravating our asthma and making breathing more difficult at times.

It is a rollercoaster time for us right now, each up comes with a down shortly after. I am thankful to have any up swings at all, as this was not happening most of the last year. With some luck and a good amount of hope, we will see next year bringing more ups than downs again.


Hurray for Sunshine!

I am finding it difficult to obtain time to write here as I would like. Jeremy’s computer broke down about a month ago and while he is without it, I don’t really have the same amount of free time to delve into my writing.

We are still on the way to it being fixed – but the motherboard we bought was a DOA and getting the warranty filled on it is taking time. In our slow fashion though we are getting through all the hurdles to finally having it running. Once everything works, we will be turning it on away from camp in a safely covered spot next to the refrigerator and letting it off gas for what will likely be 4-8 weeks before it is ready to come back next the the tent.

Today I decided to do more frequent short updates because the longer or more polished stories I would like to write take far too long in the time I have.

Jeremy started some candida killing medicine a few days ago. He’s taking about a 6th of the full dose and will slowly be working his way up as his symptoms from the candida die off abate some. It is rather surprising how much he is reacting to it. I would have thought three months of him without any sugar or fruit would have had more impact on his candida problem just as it has on mine, even with me eating a little fruit the first two months.

My sinus infection still persists though I really am unsure what is going on with it. I had been feeling as though it was improving, then about three days ago I crashed fairly hard with it. Was thinking I would be here writing about how much crashing sucks when next thing I know, today I’m doing the best I have in weeks.

Perhaps it is the weather as today is the first clear blue sky with lots of warmth that I have seen in several weeks. I think Spring might be making a come back after we just had a few weeks of near freezing temperatures, snow, lots of hail storms, and a ton of rain.

I planted the first part of my garden today! Not much, about a 2’x2′ area of garlic in which I only turned the soil well before planting. It is a start though and felt rejuvenating to my soul.

It was wonderful with the sun warm on my back, sitting down on this nice rock we actually moved here with us six years ago because it is fairly comfy, and peeling the garlic cloves that had already begun to sprout. There is much of my garden left to be planted and I am curious to see what goes in the ground as much of it depends on how my energy comes or goes.

For now, I shall hold with me the memory of my first truly warm and sunny day this year, being able to shuck the outer two layers of clothing I have worn since last November, and soak up the energy of life around me.


Busy Bees

It feels like a bit of forever since I last wrote here. Thank you to everyone who has stuck with me during this slow time. There have been so many comforting and encouraging thoughts sent our way, thank you.

I am very happy to be able to say that allergy season has mostly ended for the year! We are planning a small celebration for sometime this weekend to mark its passing.

This year the allergy month was easier than it has been for the last few years. Though there is no way to know all the factors that contributed to it being less intensive, I am very thankful for the lack of sleepless nights and pain that until now had been my curse.

Now the morning air fills with the sweet aroma of huckleberry flowers in bloom, the sound of bees making up for the lost winter months of gathering, and a warmth has entered the woods as the sunshine is briefly allowed in prior to the maple trees leafing out. This is certainly one of my favorite times of year and it always comes with a happy energy filling my soul with the awakening of a new year full of hope.

A small patch of Trillium near our tent where a young deer sleeps most nights.

A small patch of Trillium near our tent where a young deer sleeps most nights.

I find myself a little torn each sunny day as I want only to go play in my garden yet there is so much needing to be done in camp that has been waiting several months. We have had a very tiring road since last summer’s crash which left us with the lowest our health has been so far. A lot gets left to the side to be done at a later date when life turns to mere survival.

Survival is where we have been for many months now. Through the paleo diet and the tweaking of our supplements by our talented doctor, I think we are beginning to pull out of survival mode and starting to find life again.

My body feels frail after this long road but I can tell that with the extra nutrition of the paleo diet I am slowly regaining muscle strength. It feels good to pick up an object and not feel weakness but strength. Still though, I must be ever mindful of not overdoing life in my enthusiasm to catch up the months passed and still leave enough to rejoice in the spring weather.

I will talk more about our progress in a paleo lifestyle very soon. We are at the end of three months this week and the beginning of a lifetime.


Snowy Updates

It has been a three days since the cold front finally broke. When it did we got a couple inches of snow, not really all that much for around here. I expect a couple more snow storms before winter is done. This one only lasted a day this time which was very nice. Luckily behind the snow was a warm front and now it’s a balmy 50 degrees today, though it does come with the price of heavy rain showers. Such a huge change from our well below freezing temperatures less than a week ago, feels almost like spring! Here are a few pictures I took of the snow:

View from under our tarps.
View from under our tarps.

Jeremy getting jars for us to stay warm.
Jeremy having to keep dry while getting hot canning jars for us to stay warm.

The beauty of the snow.
The beauty of the snow.

The rest of this is just a quick update to my previous blog articles.

For almost the entire month of November both Jeremy and I had a really difficult time around here. I wrote about the crash in “Tides of the Storm” and “Ex nihilo”. It was probably one of the hardest months we have had since moving into this tent and very possibly the hardest in the last 2.5 years. November ended with me having one of the worst flu bugs I can ever remember having and Jeremy having a tooth extracted that had been abscessing for the last several weeks at least. But with the first week of December we both started feeling slowly better and getting our feet back under us solidly. We decided that a rest was much needed and are taking a month off of all detox inducing supplements so our bodies can heal and be ready for the next round.

I have written a few times of the animals we have around here in “A More Simplistic Life” and “Squirrels!” We still see our little Winter Wren friend and he has become much braver in the last couple months. Just a week ago he was hopping around and looking for a tasty bug to eat when he got some crazy notion in his head that the pill Jeremy was handing me must have been for him. Right as I grasped the capsule I suddenly see this little form dart from the corner of the tent and do a quick swoop past my hand. As he went by I felt his little feet grab my finger nearest the capsule and quickly let go as his momentum carried him onwards. What he was thinking, we will never know but it did provide for a nice bit of comedy.

Our squirrel friends (or annoyances as was the case for several months) have been quieting down as the winter progresses. Surprisingly we saw one just behind the tents digging in the snow on Sunday, looking for some maple seeds. I wouldn’t have expected to see them out on the one day of snow, but can’t argue instinct with something who’s vary life depends on it. Luckily they have been much quieter in the mornings and so we get to finally sleep as our circadian rhythms need. I think this is certainly one of the big things that is helping us to recover from our crash in late October and all of November.

Also, an update on our progress after the big doctor visit we had early October and written about in “Back from the Wizard”. We have been taking our b12 shots every three days, using the hormones as prescribed, and taking all the additional vitamins suggested (vit D, more C, more Selenium, and more CoQ10). I have changed several of the brands we used for our vitamins. Where monetarily possible we are now on food based vitamins which feel a lot better to be taking. I wasn’t sure if there was a real difference between food based and something developed fully in a lab. However, when I had the nasty stomach flu a few weeks ago I quickly felt the difference between the two types as the fully lab manufactured ones were not even able to be tolerated by my stomach for five days, while the food based ones caused no stomach trouble.

That affected a lot of my decisions when it came time to buy our vitamins the following week and I think I have us on substantially better vitamins now because of it. I also was disturbed to find a possible source of mercury ingestion in our fish oil, apparently at some point it changed from “free of mercury” to “lower than industry allowable limits.” Ack!!! We now take krill oil and it is worth every extra penny to know it will not be adding to the abundance of mercury we must deal with.

In small ways we are seeing the benefits of these changes. It is very likely that the crash we just went through was brought about by some of the readjusting going on in our bodies to the new therapies. Certainly the vitamin b12 shots (administered at home) would be a huge catalyst for change even if nothing else was. I have noticed some good changes in Jeremy as his hormone levels are going back to normal and some positive things as mine do as well.

Within two days of our doctor trip we also stopped eating all soy products, though I did just find a couple supplements that had some soy still in them. These are now gone too. We have stopped being vegetarians, something which was hard from me as I had been one for 12.5 years, but can feel a lot of benefit happening from now eating animal sources for protein. I think this is also responsible for some of the good changes taking place in us. Currently we are working towards a large change in diet and are excited to see what might happen once we have fully made the change. We feel better in small ways every meal we eat differently now, I have high hopes for what may occur when all meals are changed.

As for our house… well nothing seems to have come of all my efforts to find help finishing it and described in “To dream of a Home” and “Fate’s Quirky Sense of Timing.” One woman at the NW EcoBuilding Guild did seem receptive to talking about my situation but after hearing how bad things are she completely disappeared. It is unfortunate she couldn’t at least have been kind enough to say she couldn’t help, but to act as though we do not exist anymore is pretty ridiculous.

I also spoke with the president of the guild who upon learning that we were not paying members she immediately became very aloof and wanted nothing to do with us either. I had tried to explain that being almost completely housebound, on a fixed income with high out of pocket medical costs, and scrimping every cent we could to finishing building our house that it just hadn’t made much sense to pay monthly membership dues for meetings we would never be able to attend.

But it did not matter at all. Unless we had been paying for services we were too disabled to use even once in the four years we have been trying to build, she wanted nothing to do with us. If it were me, I would have looked at an opportunity to get us as new members and make a statement that it is an organization not just about recycling building products but about the people who live in the world we are claiming to want to save. I have to wonder who they are trying to save the planet for if not for the people who are in their community.

There are a few other exciting bits of life that have been going on around here but I will save those for later as they develop more fully. I am starting to finally feel like there is some progress being made from all the hard work we have been putting into life for the last four months since starting the climb back up out of the hole this summer’s crash left us in.

Ok, maybe this wasn’t such a quick update after all. Surprising to see how much has been happening when most of the last few months I often felt as though very little was going on. Small things have a way of adding up over time to much bigger things.


Tides of the Storm

Approaching Storm by Nuno Milheiro

Crashing is synonymous with CFS, a state of bodily destruction for which you often do not know the cause but that can come upon you with little regard for what you might have planned in life.

Pulled under by the unrelenting tide of another crash, it is hard not to at times feel suffocated by the merciless pressure exerted against my fragile body.

Time crawls by while still I tumble about in this ocean of madness for how could an illness such as this be anything sane.

Day blends into day as time passes along without me. Now and then I come up for air, the gasping of breath painful in my ears before I feel the tug of the tide pulling me down once more.

This limbo of increased pain, fatigue so great I feel hardly able to sit to eat most meals, and incredible cloudiness to my thoughts all blend into a background mosaic upon which is seen the anguish of my homelessness in sharp relief.

Life passes on, the tide rolls in and with it I am consumed once more.


Ex nihilo

From the outside, my life would seem very simple. I do not work, there is no place I must be more than a couple times a year, my income is steady, and my needs predictable. Yet in this simplicity there is a large void that comes from not feeling as though I have accomplished much in any given day.

When life itself is a daily accomplishment, there is little satisfaction in it because tomorrow it will be as though today hardly was; in that the exact same things will need doing again. Little carries over because I do not have very much to show for all my spent energy in any given day. It is so frustrating to have such a small amount of energy to give life because I still remember the feeling of having completed something after a hard day’s work.

The simply joy in having worked till I felt as though I was going to drop, then looking around me to see the world was transformed by what I had done. My house would be clean from top to bottom, everything at work fully caught up and running smoothly, or my feet carrying me miles into the backcountry with nothing but a heavy pack on my back and a dog by my side. All of these things I took for granted when I had them, never seeing how precious this sense of having done something ordinary could actually be extraordinary in the size of feat accomplished.

Twenty minutes of cleaning up is now infinitely harder, equal only to the most taxing days before. My great trips to the backcountry are a walk to the end of my driveway and back. I never have the feeling of being caught up in my work or it running smoothly, as I now lack the capacity to do more than those things which are vital or time sensitive. Everything else must wait until they fall into one of those two categories, otherwise I will crash from over exhaustion and be unable to complete even the little I do now.

I really miss that feeling of accomplishment that was so easy to come by when I had more energy. It is very difficult even after these last eight years of CFS to accept that being able to wash one plate is a worthy goal. Paying one bill online actually is a day’s work well done.

Now managing to pace myself, to conserve energy every day so my body has some with which to bring about healing and a means to wellness, is the greatest accomplishment I can do and it involves me doing absolutely nothing.

Whoever originally said “Nothing comes from nothing” obviously never had Chronic Fatigue Syndrome.


Forgotten

For me, some days are good and robust, while other days are lack luster and wanting for more. Well, that isn’t 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 don’t 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 Winter’s 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.